1 00:00:05,205 --> 00:00:06,239 >> ALL RIGHT, EVERYONE. 2 00:00:06,306 --> 00:00:09,209 WELCOME TO THE 17th MEETING OF 3 00:00:09,275 --> 00:00:10,710 THE BRAIN NEUROETHICS WORKING 4 00:00:10,777 --> 00:00:11,644 GROUP. 5 00:00:11,711 --> 00:00:13,713 MY NAME IS ANDREA 6 00:00:13,780 --> 00:00:15,315 BECKEL-MITCHENER, DEPUTY 7 00:00:15,382 --> 00:00:17,283 DIRECTOR OF THE NIH BRAIN 8 00:00:17,350 --> 00:00:18,351 INITIATIVE. 9 00:00:18,418 --> 00:00:20,253 I'M SERVING AS DESIGNATED 10 00:00:20,320 --> 00:00:21,788 FEDERAL OFFICIAL, DFO, FOR 11 00:00:21,855 --> 00:00:22,956 TODAY'S MEETING. 12 00:00:23,022 --> 00:00:24,257 I WANT TO EXTEND AN ESPECIALLY 13 00:00:24,324 --> 00:00:26,793 WARM WELCOME TO OUR WORKING 14 00:00:26,860 --> 00:00:28,561 GROUP CHAIRS, CO-CHAIRS, DR. 15 00:00:28,628 --> 00:00:31,297 CHRIS TINE GRADY AND DR. NITA 16 00:00:31,364 --> 00:00:31,765 FARAHANY. 17 00:00:31,831 --> 00:00:33,366 I WANT TO WELCOME MEMBERS OF THE 18 00:00:33,433 --> 00:00:36,636 WORKING GROUP ALONG WITH OUR 19 00:00:36,703 --> 00:00:40,607 INVITED SPEAKERS AND GUESTS JOIN 20 00:00:40,673 --> 00:00:41,374 US TODAY. 21 00:00:41,441 --> 00:00:43,676 THE NEUROETHICS WORKING GROUP IS 22 00:00:43,743 --> 00:00:45,745 NOT A FORMAL ADVISORY GROUP, 23 00:00:45,812 --> 00:00:49,549 LIKE THE BRAIN MULTI-COUNCIL 24 00:00:49,616 --> 00:00:50,884 WORKING GROUP, THE WORKING GROUP 25 00:00:50,950 --> 00:00:53,286 OFS HAVE COUNCILS OF THE NIH 26 00:00:53,353 --> 00:00:56,556 INSTITUTES THAT PARTICIPATE IN 27 00:00:56,623 --> 00:01:03,129 THE BRAIN INITIATIVE, 28 00:01:03,196 --> 00:01:04,697 ESTABLISHED FOR INPUT FOR 29 00:01:04,764 --> 00:01:09,035 RESEARCH SUPPORTED THROUGH THE 30 00:01:09,102 --> 00:01:09,903 BRAIN INITIATIVE, DELIBERATING 31 00:01:09,969 --> 00:01:13,306 ON ETHICAL QUESTIONS IN THE 32 00:01:13,373 --> 00:01:15,175 CONTEXT OF BRAIN INITIATIVE 33 00:01:15,241 --> 00:01:16,509 RESEARCH AND OFFERS HELPFUL 34 00:01:16,576 --> 00:01:18,912 PERSPECTIVES AND POINTS TO 35 00:01:18,978 --> 00:01:19,446 CONSIDER. 36 00:01:19,512 --> 00:01:20,880 SO, IN TODAY'S VIRTUAL MEETING 37 00:01:20,947 --> 00:01:23,149 WE HAVE A FEW ITEMS ON THE 38 00:01:23,216 --> 00:01:24,918 AGENDA, BUT FIRST WE HAVE TWO 39 00:01:24,984 --> 00:01:26,786 NEW MEMBERS JOINING US. 40 00:01:26,853 --> 00:01:31,191 WE WARMLY WELCOME DR. AMY 41 00:01:31,257 --> 00:01:32,525 MAGUIRE AND MS. JEN FRENCH. 42 00:01:32,592 --> 00:01:33,827 WE'RE GLAD YOU'RE HERE. 43 00:01:33,893 --> 00:01:37,964 I BELIEVE DR. McGWIRE HAS A 44 00:01:38,031 --> 00:01:40,834 CONFLICT BUT WILL JOIN US LATER 45 00:01:40,900 --> 00:01:41,601 ON. 46 00:01:41,668 --> 00:01:42,268 WALKING THROUGH THE AGENDA, 47 00:01:42,335 --> 00:01:45,205 FIRST WE HAVE AN UPDATE FROM OUR 48 00:01:45,271 --> 00:01:46,739 BRAIN DIRECTOR JOHN NGAI, AND 49 00:01:46,806 --> 00:01:48,374 THEN WE'LL DEVOTE THE MAJORITY 50 00:01:48,441 --> 00:01:50,910 OF TODAY'S MEETING TO TWO 51 00:01:50,977 --> 00:01:51,211 SESSIONS. 52 00:01:51,277 --> 00:01:54,180 THE FIRST SESSION WILL EXPLORE 53 00:01:54,247 --> 00:01:56,049 ETHICAL CONSIDERATIONS AROUND 54 00:01:56,115 --> 00:01:56,816 PEDIATRICS NEUROSTIMULATION, AND 55 00:01:56,883 --> 00:01:59,419 IN THAT DISCUSSION WE'LL HEAR 56 00:01:59,486 --> 00:02:00,553 FROM CLINICIANS AND ETHICISTS 57 00:02:00,620 --> 00:02:03,490 WORKING ON THIS ISSUE. 58 00:02:03,556 --> 00:02:08,862 THE SECOND SESSION WILL SCAN THE 59 00:02:08,928 --> 00:02:10,530 HORIZON FOR EMERGING NEUROETHICS 60 00:02:10,597 --> 00:02:11,297 OPPORTUNITIES INFORMED FROM A 61 00:02:11,364 --> 00:02:14,234 PANEL OF EARLY STAGE AND 62 00:02:14,300 --> 00:02:16,536 ESTABLISHED INVESTIGATORS IN THE 63 00:02:16,603 --> 00:02:16,736 FIELD. 64 00:02:16,803 --> 00:02:20,773 WE'LL WRAP UP, AS A WRAP-UP 65 00:02:20,840 --> 00:02:25,378 WE'LL HEAR UPDATES FROM MEMBERS 66 00:02:25,445 --> 00:02:28,214 ABOUT WHAT EVERYBODY HAS BEEN UP 67 00:02:28,281 --> 00:02:31,184 TO SINCE WE MET IN OFFICE. 68 00:02:31,251 --> 00:02:33,586 A HUE HOUSEKEEPING ITEMS BEFORE 69 00:02:33,653 --> 00:02:35,655 WE GET STARTED, REMINDER THIS 70 00:02:35,722 --> 00:02:38,057 OPEN SESSION IS BEING VIDEOCAST 71 00:02:38,124 --> 00:02:40,827 LIVE IN THE PUBLIC DOMAIN, 72 00:02:40,894 --> 00:02:42,128 REPORTING WILL BE ARCHIVED FOR 73 00:02:42,195 --> 00:02:48,668 LATER VIEWING ON THE NIH AND ON 74 00:02:48,735 --> 00:02:49,802 THE BRAIN WEBSITE. 75 00:02:49,869 --> 00:02:52,505 PLEASE PUT YOURSELF ON MUTE. 76 00:02:52,572 --> 00:02:54,607 WE ASK NEWG MEMBERS TO HAVE YOUR 77 00:02:54,674 --> 00:02:58,745 CAMERA ON TO THE EXTENT YOU'RE 78 00:02:58,811 --> 00:03:01,614 ABLE, BUT IT IS UP TO YOU. 79 00:03:01,681 --> 00:03:03,650 DURING DISCUSSIONS TURN ON YOUR 80 00:03:03,716 --> 00:03:05,218 VIDEO AND USE THE RAISE HAND 81 00:03:05,285 --> 00:03:11,124 OPTION, IF YOU HAVE QUESTIONS OR 82 00:03:11,190 --> 00:03:11,391 COMMENTS. 83 00:03:11,457 --> 00:03:13,293 MODERATORS WILL CALL ON YOU TO 84 00:03:13,359 --> 00:03:13,660 UNMUTE. 85 00:03:13,726 --> 00:03:17,897 WE ASK YOU TO OPT FOR THE "RAISE 86 00:03:17,964 --> 00:03:20,066 HAND" FEATURE RATHER THAN TYPING 87 00:03:20,133 --> 00:03:23,570 QUESTIONS IN THE CHAT BECAUSE 88 00:03:23,636 --> 00:03:25,104 VIDEOCAST ATTENDEES CANNOT SEE 89 00:03:25,171 --> 00:03:27,607 OR HEAR THE QUESTIONS, THE CHAT 90 00:03:27,674 --> 00:03:29,809 FUNCTION IS NOT AVAILABLE TO ALL 91 00:03:29,876 --> 00:03:30,710 LISTENING IN. 92 00:03:30,777 --> 00:03:31,678 EVERYONE IS BUSY AND WE 93 00:03:31,744 --> 00:03:33,313 APPRECIATE YOUR TIME AND 94 00:03:33,379 --> 00:03:35,315 VALUABLE INPUT THAT YOU PROVIDE 95 00:03:35,381 --> 00:03:36,816 ON TOPICS BEFORE US. 96 00:03:36,883 --> 00:03:38,785 FINALLY, NONE OF THIS CAN HAPPEN 97 00:03:38,851 --> 00:03:40,320 WITHOUT THE REALLY TERRIFIC TEAM 98 00:03:40,386 --> 00:03:43,389 WE HAVE HERE, I ESPECIALLY WANT 99 00:03:43,456 --> 00:03:49,195 TO THANK DR. NINA HSU, AND WHO 100 00:03:49,262 --> 00:03:52,065 TRANSITIONED TO A NEW ROLE AS 101 00:03:52,131 --> 00:03:54,033 NEUROETHICS PROGRAM DIRECTOR FOR 102 00:03:54,100 --> 00:03:54,601 NINDS. 103 00:03:54,667 --> 00:03:56,336 SO WE CONGRATULATE HER, NINA, ON 104 00:03:56,402 --> 00:03:57,637 YOUR NEW POSITION. 105 00:03:57,704 --> 00:03:59,172 AND WE'RE THRILLED TO CONTINUE 106 00:03:59,238 --> 00:04:02,675 TO WORK WITH YOU IN YOUR NEW 107 00:04:02,742 --> 00:04:03,242 ROLE. 108 00:04:03,309 --> 00:04:07,080 THE TEAM MAKING TODAY'S MEETING 109 00:04:07,146 --> 00:04:10,917 POSSIBLE INCLUDES DR. SASKIA 110 00:04:10,984 --> 00:04:13,853 HENDRIKS, DR. CHRISTIAN DUPAY, 111 00:04:13,920 --> 00:04:18,791 AND OUR LOGISTICS AND TECH TEAM 112 00:04:18,858 --> 00:04:21,961 AT ROSE LI AND ASSOCIATES 113 00:04:22,028 --> 00:04:25,698 ESPECIALLY REBECCA AND HOLLY. 114 00:04:25,765 --> 00:04:27,500 WE'LL WELCOME DR. JOHN NGAI, 115 00:04:27,567 --> 00:04:28,735 DIRECTOR OF THE BRAIN 116 00:04:28,801 --> 00:04:32,105 INITIATIVE, AND WE THANK HIM FOR 117 00:04:32,171 --> 00:04:33,039 HIS SUPPORT OF NEUROETHICS. 118 00:04:33,106 --> 00:04:35,074 OVER TO YOU, JOHN. 119 00:04:35,141 --> 00:04:36,075 >> THANKS, ANDREA. 120 00:04:36,142 --> 00:04:42,315 I'D LIKE TO ECHO THANKS TO 121 00:04:42,382 --> 00:04:46,452 THOSE WHO MEET THIS POSSIBLE AND 122 00:04:46,519 --> 00:04:47,987 OUR CO-CHAIRS, TO SUPPORT OUR 123 00:04:48,054 --> 00:04:51,057 MISSION IN THIS SPACE, AND 124 00:04:51,124 --> 00:04:53,993 THANKING NEWG MEMBERS FOR BEING 125 00:04:54,060 --> 00:04:54,327 HERE. 126 00:04:54,394 --> 00:04:56,295 MCWG MEMBERS HERE ON THEIR OWN 127 00:04:56,362 --> 00:04:57,730 TIME TO LISTEN AND PARTICIPATE 128 00:04:57,797 --> 00:04:59,465 IN TODAY'S DISCUSSIONS AND OTHER 129 00:04:59,532 --> 00:05:00,967 PARTICIPANTS WHO SO GRACIOUSLY 130 00:05:01,034 --> 00:05:04,070 HAVE OFFERED THEIR TIME TO BE IN 131 00:05:04,137 --> 00:05:06,205 THE MEETING AND TO PARTICIPATE 132 00:05:06,272 --> 00:05:07,907 IN WHAT I'M SURE WILL BE A 133 00:05:07,974 --> 00:05:08,441 LIVELY DISCUSSION. 134 00:05:08,508 --> 00:05:10,743 I WANT TO TAKE FIVE OR TEN 135 00:05:10,810 --> 00:05:12,612 MINUTES TO GIVE BRIEF UPDATES 136 00:05:12,679 --> 00:05:14,247 AND WE'LL TO THE MEAT OF THE 137 00:05:14,313 --> 00:05:16,649 MATTER WITH PANEL DISCUSSIONS 138 00:05:16,716 --> 00:05:18,518 AND PRESENTATIONS. 139 00:05:18,584 --> 00:05:20,153 LET'S SEE. 140 00:05:20,219 --> 00:05:22,789 CAN YOU SEE WHAT LOOKING TO THE 141 00:05:22,855 --> 00:05:24,090 RIGHT SCREEN HERE? 142 00:05:24,157 --> 00:05:27,293 ARE WE GOOD? 143 00:05:27,360 --> 00:05:31,230 TO GIVE A QUICK UPDATE, ANDREA 144 00:05:31,297 --> 00:05:33,099 MENTIONED TWO NEW MEMBERS, TO 145 00:05:33,166 --> 00:05:37,804 THE NEWG, AS WE LIKE TO CALL IT. 146 00:05:37,870 --> 00:05:40,707 FIRST DR. AMY McGUIRE FROM 147 00:05:40,773 --> 00:05:42,108 BAYLOR COLLEGE OF MEDICINE, 148 00:05:42,175 --> 00:05:44,911 DIRECTOR OF CENTER FOR MEDICAL 149 00:05:44,977 --> 00:05:46,879 ETHICS AND HEALTH POLICY AT 150 00:05:46,946 --> 00:05:50,049 BAYLOR, HAS A GREAT TRACK RECORD 151 00:05:50,116 --> 00:05:53,419 AND HISTORY IN RESEARCH STUDYING 152 00:05:53,486 --> 00:05:56,923 ETHICAL AND POLICY ISSUES WITH 153 00:05:56,989 --> 00:06:01,094 NEUROTHERAPEUTICS AND SHE'S 154 00:06:01,160 --> 00:06:04,697 QUITE ACTIVE IN LOCAL AND 155 00:06:04,764 --> 00:06:05,798 SOCIETAL IMPACTS OF 156 00:06:05,865 --> 00:06:06,365 NEUROMODULATION THERAPIES, 157 00:06:06,432 --> 00:06:07,800 CENTRAL TO WHAT WE DO IN 158 00:06:07,867 --> 00:06:08,134 "BRAIN." 159 00:06:08,201 --> 00:06:12,371 SHE'S FOUNDING DIRECTOR OF 160 00:06:12,438 --> 00:06:15,174 ETHICAL LEGAL IMPLICATIONS OF 161 00:06:15,241 --> 00:06:23,983 PSYCHEDELIC SOCIETYING, SHE WILL 162 00:06:24,050 --> 00:06:26,853 BE JOINING US SHORTLY. 163 00:06:26,919 --> 00:06:29,489 NEXT UP IS JEN FRENCH, FOUNDER 164 00:06:29,555 --> 00:06:31,457 AND EXECUTIVE DIRECTOR OF 165 00:06:31,524 --> 00:06:32,558 NEUROTECH NETWORKS, ALSO SERVING 166 00:06:32,625 --> 00:06:33,960 ON THE MULTI-COUNCIL WORKING 167 00:06:34,026 --> 00:06:36,395 GROUP FOR BRAIN FOR THE PAST 168 00:06:36,462 --> 00:06:40,633 YEAR PLUS, DELIGHTED TO HAVE YOU 169 00:06:40,700 --> 00:06:42,301 HERE. 170 00:06:42,368 --> 00:06:42,969 JEN CO-FOUNDED NEUROTECH 171 00:06:43,035 --> 00:06:46,339 NETWORK, REALLY AS AN EFFICACY 172 00:06:46,405 --> 00:06:49,709 GROUP TO ADVANCE THE 173 00:06:49,776 --> 00:06:51,043 DISSEMINATION AND 174 00:06:51,110 --> 00:06:52,345 DEMOCRATIZATION OF EMERGING 175 00:06:52,411 --> 00:06:54,213 NEUROTECHNOLOGIES THAT ARE 176 00:06:54,280 --> 00:06:56,516 DESIGNED TO HELP FOLKS WITH 177 00:06:56,582 --> 00:06:56,849 DISABILITIES. 178 00:06:56,916 --> 00:06:58,684 SO WE'RE VERY, VERY PLEASED TO 179 00:06:58,751 --> 00:07:01,521 HAVE HER LEER FOR THAT TO GIVE 180 00:07:01,587 --> 00:07:02,622 US AN IMPORTANT PERSPECTIVE OF 181 00:07:02,688 --> 00:07:10,062 THE FOLKS THAT WE'RE TRYING TO 182 00:07:10,129 --> 00:07:10,496 HELP. 183 00:07:10,563 --> 00:07:18,704 JUST TO GIVE A QUICK ALERT, ON 184 00:07:18,771 --> 00:07:21,374 APRIL 17-19, ETHICAL 185 00:07:21,440 --> 00:07:22,375 NEUROSCIENCE MEETING, IN-PERSON 186 00:07:22,441 --> 00:07:23,843 COMPONENT IN BALTIMORE, IN THE 187 00:07:23,910 --> 00:07:24,343 STATES. 188 00:07:24,410 --> 00:07:28,781 THE TITLE OF THIS WORKSHOP IS 189 00:07:28,848 --> 00:07:31,951 BEING ORGANIZED BY DOCTORS NINA 190 00:07:32,018 --> 00:07:37,757 HSU AND JAY CHURCH HILL, 191 00:07:37,824 --> 00:07:39,492 DEMYSTIFYING NIH BRAIN 192 00:07:39,559 --> 00:07:41,027 INITIATIVE FUNDING IN 193 00:07:41,093 --> 00:07:41,694 NEUROETHICS, HELPING PEOPLE 194 00:07:41,761 --> 00:07:46,265 NAVIGATE TO YOU WHO BECOME 195 00:07:46,332 --> 00:07:46,833 INVOLVED IN CARRYING OUT 196 00:07:46,899 --> 00:07:48,367 EMPIRICAL RESEARCH IN THE 197 00:07:48,434 --> 00:07:48,968 NEUROETHICS SPACE. 198 00:07:49,035 --> 00:07:52,104 WE'RE VERY LUCKY TO HAVE FOUR 199 00:07:52,171 --> 00:07:52,839 BRAIN-FUNDED INVESTIGATORS 200 00:07:52,905 --> 00:07:55,074 PARTICIPATE THAT MIGHT HELP 201 00:07:55,141 --> 00:07:57,577 OTHERS NAVIGATE INTO THIS 202 00:07:57,643 --> 00:07:59,212 EXCITING AREA OF RESEARCH THAT'S 203 00:07:59,278 --> 00:08:00,446 SO CRITICAL TO MAKING SURE WHAT 204 00:08:00,513 --> 00:08:03,916 WE DO IS DONE IN A GOOD WAY. 205 00:08:03,983 --> 00:08:06,018 VERY EXCITED TO LET YOU KNOW 206 00:08:06,085 --> 00:08:08,187 ABOUT THE UPCOMING BRAIN 207 00:08:08,254 --> 00:08:11,924 INITIATIVE CONFERENCE, OUR TENTH 208 00:08:11,991 --> 00:08:13,793 ANNUAL CONFERENCE, CELEBRATING A 209 00:08:13,860 --> 00:08:15,194 DECADE OF INNOVATION BUT LOOKING 210 00:08:15,261 --> 00:08:16,629 TO SEE HOW WE CAN BUILD ON THE 211 00:08:16,696 --> 00:08:18,831 LAST TEN YEARS TO EVEN FURTHER 212 00:08:18,898 --> 00:08:20,032 OUR CAUSE. 213 00:08:20,099 --> 00:08:22,435 THE MAIN MEETING WILL BE HELD ON 214 00:08:22,501 --> 00:08:25,938 JUNE 17 AND 18, HYBRID FORMAT, 215 00:08:26,005 --> 00:08:30,309 IN-PERSON PART HELD IN NORTH 216 00:08:30,376 --> 00:08:33,579 BETHESDA IN MARYLAND, AND EARLY 217 00:08:33,646 --> 00:08:37,083 CAREER EVENT JUNE 16 EVENING, 218 00:08:37,149 --> 00:08:38,584 MARK YOUR CALENDARS, ATTENDANCE 219 00:08:38,651 --> 00:08:40,920 IS FREE SO PLEASE BEAR THAT IN 220 00:08:40,987 --> 00:08:41,387 MIND. 221 00:08:41,454 --> 00:08:43,222 THERE'S THE QR CODE, YOU CAN 222 00:08:43,289 --> 00:08:44,390 FIND MORE DETAILS ABOUT THIS 223 00:08:44,457 --> 00:08:46,092 MEETING ON THE BRAIN WEBSITE, SO 224 00:08:46,158 --> 00:08:48,327 FAR SHAPING UP TO BE AN EXCITING 225 00:08:48,394 --> 00:08:48,628 CONFERENCE. 226 00:08:48,694 --> 00:08:50,429 A GREAT ONE LAST YEAR AS WELL. 227 00:08:50,496 --> 00:08:55,268 I WANT TO LET FOLKS KNOW ABOUT 228 00:08:55,334 --> 00:08:56,569 NOTICE OF SCIENTIFIC INTEREST, 229 00:08:56,636 --> 00:08:59,739 NOT IN BRAIN ITSELF BUT FROM THE 230 00:08:59,805 --> 00:09:01,173 OFFERS OF THE DIRECTOR NIH-WIDE. 231 00:09:01,240 --> 00:09:06,312 AND THE -- IT'S A CALL FOR 232 00:09:06,379 --> 00:09:10,249 RESEARCH SUPPLEMENTS TO ONGOING 233 00:09:10,316 --> 00:09:13,953 GRANTS, TO SUPPORT RESEARCH ON 234 00:09:14,020 --> 00:09:15,721 BIOETHICAL ISSUES, DEVELOPMENT 235 00:09:15,788 --> 00:09:18,758 OF AN EVIDENCE BASE FOR FUTURE 236 00:09:18,824 --> 00:09:20,860 POLICY DECISIONS IN THIS SPACE, 237 00:09:20,927 --> 00:09:23,262 ALSO TO SUPPORT CERTAIN EFFORTS 238 00:09:23,329 --> 00:09:24,764 TO DEVELOP AUGMENT BIOETHICS 239 00:09:24,830 --> 00:09:25,431 RESEARCH CAPACITY. 240 00:09:25,498 --> 00:09:26,966 IF YOU ARE CURRENTLY HOLDING AN 241 00:09:27,033 --> 00:09:30,036 NIH GRANT AND YOU CAN SEE AN 242 00:09:30,102 --> 00:09:30,603 OPPORTUNITY TO DEVELOP THIS, 243 00:09:30,670 --> 00:09:33,306 WITHIN THE SCOPE OF THE GRANT, 244 00:09:33,372 --> 00:09:34,740 PLEASE BY ALL MEANS INQUIRE AND 245 00:09:34,807 --> 00:09:35,708 AS APPROPRIATE APPLY. 246 00:09:35,775 --> 00:09:37,576 YOU CAN GET MORE DETAILS ON THIS 247 00:09:37,643 --> 00:09:41,514 SLIDE HERE AS WELL AS THAT QR 248 00:09:41,580 --> 00:09:42,415 CODE. 249 00:09:42,481 --> 00:09:45,017 DUE DATES STARTING FROM FEBRUARY 250 00:09:45,084 --> 00:09:46,752 OF THIS YEAR, TO APRIL COMING UP 251 00:09:46,819 --> 00:09:49,622 OF THIS YEAR AS WELL. 252 00:09:49,689 --> 00:09:49,956 OKAY. 253 00:09:50,022 --> 00:09:52,925 SO, JUST THIS KIND OF SETUP FOR 254 00:09:52,992 --> 00:09:57,063 OUR SECOND PANEL OF TODAY, WILL 255 00:09:57,129 --> 00:09:58,764 REVOLVE AROUND THIS EXPLOSION OF 256 00:09:58,831 --> 00:10:03,869 STUDIES IN THE LAST FEW YEARS 257 00:10:03,936 --> 00:10:05,404 DEMONSTRATING NEW APPLICATIONS 258 00:10:05,471 --> 00:10:07,773 OF DEEP BRAIN STIMULATIONS TO 259 00:10:07,840 --> 00:10:09,442 TREAT PSYCHIATRIC AND OTHER 260 00:10:09,508 --> 00:10:13,379 BRAIN DISORDERS INCLUDING FOR 261 00:10:13,446 --> 00:10:14,580 EXAMPLE DEPRESSION AND PTSD, 262 00:10:14,647 --> 00:10:16,682 TBI, STROKE RECOVERY, PAIN 263 00:10:16,749 --> 00:10:19,852 MANAGEMENT, AS WELL AS OBSESSIVE 264 00:10:19,919 --> 00:10:22,021 COMPULSIVE DISORDER, EATING 265 00:10:22,088 --> 00:10:25,091 DISORDERS, AS WELL AS MOVEMENT 266 00:10:25,157 --> 00:10:27,593 DISORDERS FOR WHICH DBS WAS 267 00:10:27,660 --> 00:10:28,928 ORIGINALLY DESIGNED. 268 00:10:28,995 --> 00:10:30,029 THIS REMARKABLE INFLECTION POINT 269 00:10:30,096 --> 00:10:31,897 IN THESE THERAPIES I THINK 270 00:10:31,964 --> 00:10:34,333 REFLECTS RAPID ADVANCES IN 271 00:10:34,400 --> 00:10:36,802 CIRCUIT MAPPING, DEVICE DESIGN, 272 00:10:36,869 --> 00:10:38,337 AS WELL AS ARTIFICIAL 273 00:10:38,404 --> 00:10:39,872 INTELLIGENCE APPROACHES TO 274 00:10:39,939 --> 00:10:41,307 INTERPRET BRAIN ACTIVITY DATA, 275 00:10:41,374 --> 00:10:42,074 TRANSLATE THEM INTO BIOMARKERS 276 00:10:42,141 --> 00:10:45,244 THAT CAN BE USED TO INFORM 277 00:10:45,311 --> 00:10:46,345 NEUROMODULATION THERAPIES. 278 00:10:46,412 --> 00:10:47,446 SO, THESE AND RELATED 279 00:10:47,513 --> 00:10:50,716 DEVELOPMENTS RAISE A NUMBER 280 00:10:50,783 --> 00:10:52,051 OFETHICAL ISSUES REGARDING NOT 281 00:10:52,118 --> 00:10:53,619 JUST SAFETY AND PRIVACY. 282 00:10:53,686 --> 00:10:54,754 WE'VE HELD WORKSHOPS ON THIS IN 283 00:10:54,820 --> 00:10:55,755 THE RECENT YEAR. 284 00:10:55,821 --> 00:10:57,923 BUT ALSO ON THE IMPACTS ON THE 285 00:10:57,990 --> 00:10:59,492 PARTICIPANTS AND THEIR FAMILIES 286 00:10:59,558 --> 00:11:01,227 AND CAREGIVERS, AND NOT TO 287 00:11:01,293 --> 00:11:01,894 MENTION SOCIETY MORE BROADLY. 288 00:11:01,961 --> 00:11:04,163 THIS WILL BE A GREAT DISCUSSION 289 00:11:04,230 --> 00:11:05,498 IN OUR SECOND PANEL. 290 00:11:05,564 --> 00:11:07,700 I WANT TO HIGHLIGHT ONE PAPER 291 00:11:07,767 --> 00:11:10,336 THAT REALLY BRINGS THIS TO THE 292 00:11:10,403 --> 00:11:11,437 FOREFRONT. 293 00:11:11,504 --> 00:11:13,606 THIS IS A MULTI-INSTITUTIONAL 294 00:11:13,672 --> 00:11:18,811 STUDY, LED BY DR. HENDERSON AT 295 00:11:18,878 --> 00:11:20,279 STANFORD, WITH IMPACTS ON THE 296 00:11:20,346 --> 00:11:22,348 PARTICIPANTS AND THEIR FAMILIES 297 00:11:22,415 --> 00:11:24,116 PROVIDED BY DR. JOE FINS FROM 298 00:11:24,183 --> 00:11:25,885 CORNELL UNIVERSITY WHO IS HERE 299 00:11:25,951 --> 00:11:28,287 TODAY, AS PART OF HIS 300 00:11:28,354 --> 00:11:28,921 BRAIN-FUNDED NEUROETHICS 301 00:11:28,988 --> 00:11:30,322 PROJECT. 302 00:11:30,389 --> 00:11:33,192 HERE THEY ARE LOOKING AT 303 00:11:33,259 --> 00:11:37,263 PATIENTS WITH MODERATE TO SEVERE 304 00:11:37,329 --> 00:11:38,230 TRAUMATIC BRAIN INJURY, ISSUES 305 00:11:38,297 --> 00:11:40,633 WITH EXECUTIVE FUNCTION, THEY 306 00:11:40,699 --> 00:11:41,267 IDENTIFIED SPECIFIC NUCLEUS OF 307 00:11:41,333 --> 00:11:48,407 THE THALAMUS AS A REGION BASED 308 00:11:48,474 --> 00:11:50,176 ON HYPOTHESIS THAT REDUCED 309 00:11:50,242 --> 00:11:53,779 ACTIVITY HERE IN TERMS OF GIVING 310 00:11:53,846 --> 00:12:01,020 STIMULATION STYING NAILS TO -- 311 00:12:01,087 --> 00:12:07,660 SIGNALS TO STRIATUM AND CORTEX 312 00:12:07,726 --> 00:12:11,297 TO LOCATE CENTRAL LATERAL 313 00:12:11,363 --> 00:12:15,334 NUCLEUS AS WELL AS SEGMENTAL 314 00:12:15,401 --> 00:12:16,635 TRACK FOR STIMULATION. 315 00:12:16,702 --> 00:12:18,070 A STUDY THAT INVOLVED FIVE 316 00:12:18,137 --> 00:12:18,571 PARTICIPANTS. 317 00:12:18,637 --> 00:12:20,473 AFTER THREE MONTHS OF 318 00:12:20,539 --> 00:12:22,975 STIMULATION, USING TEST OF 319 00:12:23,042 --> 00:12:25,044 EXECUTIVE FUNCTION, COGNITIVE 320 00:12:25,111 --> 00:12:27,480 FUNCTION, FOUND ON AVERAGE 30% 321 00:12:27,546 --> 00:12:35,888 IMPROVEMENT WITH A RANGE OF 15 322 00:12:35,955 --> 00:12:38,724 TO 52% WHERE 10% IS THRESHOLD. 323 00:12:38,791 --> 00:12:39,825 A PROMISING STUDY SHOWING 324 00:12:39,892 --> 00:12:41,160 STIMULATION IN THIS REGION OF 325 00:12:41,227 --> 00:12:43,429 THE BRAIN, THIS NEXUS, CAN BE 326 00:12:43,496 --> 00:12:44,897 SAFELY APPLIED AND MAY IMPROVE 327 00:12:44,964 --> 00:12:46,632 EXECUTIVE CONTROL IN PATIENTS 328 00:12:46,699 --> 00:12:48,400 WITH MODERATE TO SEVERE TBI 329 00:12:48,467 --> 00:12:51,904 PAVING THE WAY FOR LARGER 330 00:12:51,971 --> 00:12:52,471 CLINICAL TRIALS. 331 00:12:52,538 --> 00:12:54,840 THERE ARE A HOST OF ETHICAL 332 00:12:54,907 --> 00:13:04,016 ISSUES WITH THIS STUDY AND 333 00:13:04,083 --> 00:13:04,817 STUDIES LIKE IT, WE'RE LOOKING 334 00:13:04,884 --> 00:13:07,219 FORWARD TO A PANEL ON THAT. 335 00:13:07,286 --> 00:13:08,954 WE HAVE THE BRAIN BLOG TO STAY 336 00:13:09,021 --> 00:13:10,589 UP TO DATE. 337 00:13:10,656 --> 00:13:13,759 WE PROMISE NOT TO LITTER YOUR 338 00:13:13,826 --> 00:13:14,960 E-MAIL IN-BOXES, A GREAT SOURCE 339 00:13:15,027 --> 00:13:16,629 OF INFORMATION, THE BRAIN 340 00:13:16,695 --> 00:13:19,899 WEBSITE ITSELF, AND THE BEST 341 00:13:19,965 --> 00:13:21,867 SOURCE OF INFORMATION IS OUR 342 00:13:21,934 --> 00:13:23,002 PROGRAM CENTERS, THEY LOOK TO 343 00:13:23,068 --> 00:13:24,737 TALK TO FOLKS IN THE EXTRAMURAL 344 00:13:24,803 --> 00:13:29,308 WORLD ABOUT FUNDING 345 00:13:29,375 --> 00:13:29,909 OPPORTUNITIES. 346 00:13:29,975 --> 00:13:33,345 YOU CAN FIND US AT BRAIN.GOV AND 347 00:13:33,412 --> 00:13:34,313 I'LL STOP THERE. 348 00:13:34,380 --> 00:13:36,415 IF THERE ARE NO QUESTIONS I'LL 349 00:13:36,482 --> 00:13:38,184 HAND THINGS OVER TO THE 350 00:13:38,250 --> 00:13:40,386 CO-MODERATORS FOR THE NEXT 351 00:13:40,452 --> 00:13:44,857 SESSION, DOCTORS CHRISTINE GRADY 352 00:13:44,924 --> 00:13:46,625 AND TERESA CRUZ FROM NICHD. 353 00:13:46,692 --> 00:13:55,267 ANY QUESTIONS OR COMMENTS BEFORE 354 00:13:55,334 --> 00:13:57,136 WE MOVE ON? 355 00:13:57,203 --> 00:13:58,537 >> THANK YOU, JOHN, FOR THAT 356 00:13:58,604 --> 00:14:02,374 UPDATE. 357 00:14:07,146 --> 00:14:09,415 >> I JUST HAVE ONE COMMENT. 358 00:14:09,481 --> 00:14:12,451 I GUESS MAYBE THE ELEPHANT IN 359 00:14:12,518 --> 00:14:14,553 THE ROOM, JOHN PRESENTED WHAT 360 00:14:14,620 --> 00:14:16,622 THE NIH IS DOING. 361 00:14:16,689 --> 00:14:19,124 BUT IN THE PAPER A COUPLE WEEKS 362 00:14:19,191 --> 00:14:20,726 AGO CAME OUT WHAT ELON MUSK IS 363 00:14:20,793 --> 00:14:21,427 DOING. 364 00:14:21,493 --> 00:14:23,295 I THINK THAT RAISED A LOT OF 365 00:14:23,362 --> 00:14:23,796 QUESTIONS. 366 00:14:23,862 --> 00:14:27,233 YOU GUYS HAVE BEEN PURSUING FOR 367 00:14:27,299 --> 00:14:31,937 A WHILE, NICE AT SOME POINT TO 368 00:14:32,004 --> 00:14:34,873 GET THAT MESSAGE OUT, MAYBE 369 00:14:34,940 --> 00:14:38,944 STRONGER. 370 00:14:39,011 --> 00:14:40,246 >> RIGHT. 371 00:14:40,312 --> 00:14:43,215 I MEAN, I THINK THE -- I 372 00:14:43,282 --> 00:14:46,819 CONSIDER NIH AS PART OF A LARGER 373 00:14:46,885 --> 00:14:47,686 ECOSYSTEM WHERE DIFFERENT 374 00:14:47,753 --> 00:14:48,754 MEMBERS OF THE ECOSYSTEM CAN 375 00:14:48,821 --> 00:14:50,422 PLAY DIFFERENT ROLES. 376 00:14:50,489 --> 00:14:52,825 AND I THINK INDUSTRY CERTAINLY 377 00:14:52,891 --> 00:14:54,893 PLAYS -- WILL HAVE TO PLAY A BIG 378 00:14:54,960 --> 00:14:57,529 ROLE IN GETTING THESE DEVICES 379 00:14:57,596 --> 00:14:59,365 THAT LARGELY HAVE BEEN INVENTED 380 00:14:59,431 --> 00:15:02,001 OR AT LEAST THE PREMISE OF THEM 381 00:15:02,067 --> 00:15:03,535 HAS BEEN INVENTED WITH SOME KIND 382 00:15:03,602 --> 00:15:04,737 OF FEDERAL FUNDING. 383 00:15:04,803 --> 00:15:08,107 SO THAT'S A VERY IMPORTANT 384 00:15:08,173 --> 00:15:10,075 PIECE, DISSEMINATION AND 385 00:15:10,142 --> 00:15:11,176 SCALABILITY ARE KEY. 386 00:15:11,243 --> 00:15:13,479 PRIVATE COMPANIES KEEP A LOT OF 387 00:15:13,545 --> 00:15:14,380 INFORMATION AS PROPRIETARY AND 388 00:15:14,446 --> 00:15:19,184 WE WILL DO WHAT WE CAN TO HELP 389 00:15:19,251 --> 00:15:19,351 OUT. 390 00:15:19,418 --> 00:15:20,919 BUT WE REALLY ARE RELYING ON OUR 391 00:15:20,986 --> 00:15:23,222 COLLEAGUES AT THE FDA TO MAKE 392 00:15:23,289 --> 00:15:25,524 SURE THAT THESE STUDIES ARE 393 00:15:25,591 --> 00:15:27,159 BEING CONDUCTED SAFELY, AS 394 00:15:27,226 --> 00:15:28,160 SAFELY AS POSSIBLE, AND 395 00:15:28,227 --> 00:15:30,229 HOPEFULLY THERE CAN BE A 396 00:15:30,296 --> 00:15:31,330 BIDIRECTIONAL EXCHANGE OF 397 00:15:31,397 --> 00:15:32,631 INFORMATION AS THESE 398 00:15:32,698 --> 00:15:33,866 DEVELOPMENTS GO FORWARD. 399 00:15:33,932 --> 00:15:35,934 BUT WE CAN ONLY -- WE AS NIH CAN 400 00:15:36,001 --> 00:15:37,670 ONLY ACT ON INFORMATION THAT WE 401 00:15:37,736 --> 00:15:38,671 HAVE ACCESS TO. 402 00:15:38,737 --> 00:15:40,439 AND WE'RE JUST DOING OUR BEST TO 403 00:15:40,506 --> 00:15:50,182 KEEP THOSE LINES OPEN. 404 00:15:50,249 --> 00:15:53,485 >> ANYBODY ELSE, COMMENTS OR 405 00:15:53,552 --> 00:15:54,386 QUESTIONS FOR JOHN? 406 00:15:54,453 --> 00:15:55,821 I'M GOING TO JUMP IN BEFORE WE 407 00:15:55,888 --> 00:15:58,857 TURN TO OUR PANEL AND INVITE 408 00:15:58,924 --> 00:16:00,492 NITA TO JOIN ME TO WELCOME 409 00:16:00,559 --> 00:16:01,093 EVERYBODY. 410 00:16:01,160 --> 00:16:03,128 WELCOME OUR NEW MEMBERS, WELCOME 411 00:16:03,195 --> 00:16:06,965 OUR GUESTS, WELCOME EVERYONE WHO 412 00:16:07,032 --> 00:16:09,802 IS PARTICIPATING, AND LISTENING. 413 00:16:09,868 --> 00:16:13,872 AND ALSO ADD MY WELCOME TO BOTH 414 00:16:13,939 --> 00:16:15,841 AMY McGUIRE WHO IS NOT HERE 415 00:16:15,908 --> 00:16:17,042 YET AND JEN FRENCH. 416 00:16:17,109 --> 00:16:18,877 THANK YOU FOR JOINING AS MEMBERS 417 00:16:18,944 --> 00:16:20,112 OF OUR GROUPS. 418 00:16:20,179 --> 00:16:21,113 NITA, WOULD YOU LIKE TO SAY 419 00:16:21,180 --> 00:16:23,716 ANYTHING BEFORE I START THE 420 00:16:23,782 --> 00:16:24,249 PANEL? 421 00:16:24,316 --> 00:16:24,817 >> ECHOING YOUR WELCOME 422 00:16:24,883 --> 00:16:27,319 ESPECIALLY TO NEW MEMBERS AS 423 00:16:27,386 --> 00:16:28,787 WELL, WARM CONGRATULATIONS TO 424 00:16:28,854 --> 00:16:28,987 NINA. 425 00:16:29,054 --> 00:16:30,289 THANKS, EVERYBODY FOR JOIN US 426 00:16:30,356 --> 00:16:30,622 TODAY. 427 00:16:30,689 --> 00:16:34,893 REALLY LOOKING FORWARD TO THE 428 00:16:34,960 --> 00:16:35,227 CONVERSATION. 429 00:16:35,294 --> 00:16:36,395 >> WE'LL HAVE A GREAT PANEL TO 430 00:16:36,462 --> 00:16:37,529 START WITH. 431 00:16:37,596 --> 00:16:41,600 I WANT TO INTRODUCE TO YOU IN A 432 00:16:41,667 --> 00:16:43,235 LITTLE MORE FULLY THERESA CRUZ 433 00:16:43,302 --> 00:16:44,770 WHO GENEROUSLY JOINED US TODAY 434 00:16:44,837 --> 00:16:48,040 TO MODERATE ALONG WITH ME, SHE'S 435 00:16:48,107 --> 00:16:50,342 THE DIRECTOR OF NATIONAL CENTER 436 00:16:50,409 --> 00:16:51,977 FOR MEDICAL REHABILITATION 437 00:16:52,044 --> 00:16:53,278 RESEARCH, AT THE NATIONAL 438 00:16:53,345 --> 00:16:54,413 INSTITUTE OF CHILD HEALTH AND 439 00:16:54,480 --> 00:16:55,614 HUMAN DEVELOPMENT. 440 00:16:55,681 --> 00:16:57,583 AND SHE'S GOING TO WORK WITH ME 441 00:16:57,649 --> 00:16:58,917 TO MODERATE THIS PANEL AND I'M 442 00:16:58,984 --> 00:17:04,356 GOING TO TURN IT OVER TO THERESA 443 00:17:04,423 --> 00:17:05,224 TO INTRODUCE OUR PANELISTS, SOME 444 00:17:05,290 --> 00:17:07,326 OF WHOM ARE MY FRIENDS, AND I'M 445 00:17:07,393 --> 00:17:11,463 SO GLAD YOU'RE HERE. 446 00:17:11,530 --> 00:17:12,598 >> THANK YOU, CHRISTINE. 447 00:17:12,664 --> 00:17:14,266 LET ME JUST TELL THE GOALS OF 448 00:17:14,333 --> 00:17:15,501 THIS SESSION. 449 00:17:15,567 --> 00:17:17,302 WHAT ARE WE GOING TO BE TALKING 450 00:17:17,369 --> 00:17:18,103 ABOUT TODAY? 451 00:17:18,170 --> 00:17:20,005 WE HAVE THREE GOALS FOR THIS 452 00:17:20,072 --> 00:17:20,806 PANEL. 453 00:17:20,873 --> 00:17:24,643 WE WANT TO HEAR FROM THEM, AND 454 00:17:24,710 --> 00:17:27,246 REACTIONS FROM YOU ALL. 455 00:17:27,312 --> 00:17:31,617 THE CONSIDERATIONS OF UNIQUE, IF 456 00:17:31,683 --> 00:17:36,422 ANY, ETHICAL CHALLENGES THAT 457 00:17:36,488 --> 00:17:36,855 ACCOMPANY PEDIATRIC 458 00:17:36,922 --> 00:17:38,390 NEUROSTIMULATION, THINGS THAT 459 00:17:38,457 --> 00:17:39,925 ARE BEYOND JUST THE 460 00:17:39,992 --> 00:17:42,227 CONSIDERATION WHEN YOU WORK WITH 461 00:17:42,294 --> 00:17:43,629 PEDIATRIC POPULATION. 462 00:17:43,695 --> 00:17:46,231 THE SECOND THING WE'D LIKE TO DO 463 00:17:46,298 --> 00:17:49,868 IS DISCUSS IF THERE ARE ANY 464 00:17:49,935 --> 00:17:51,203 UNIQUE CHALLENGES, HOW WE MIGHT 465 00:17:51,270 --> 00:17:55,140 MEET THEM IN THE FUTURE. 466 00:17:55,207 --> 00:17:58,744 AND ARE THERE ANY POTENTIAL 467 00:17:58,811 --> 00:17:59,711 EMERGING OPPORTUNITIES TO 468 00:17:59,778 --> 00:18:00,813 ADDRESS THOSE QUESTIONS. 469 00:18:00,879 --> 00:18:02,347 THAT KIND OF TIES IN A LITTLE 470 00:18:02,414 --> 00:18:03,549 BIT WITH THE SECOND SESSION 471 00:18:03,615 --> 00:18:05,751 THAT'S GOING TO HAPPEN LATER ON. 472 00:18:05,818 --> 00:18:08,253 SO, WE HAVE FOUR SPEAKERS. 473 00:18:08,320 --> 00:18:10,689 I WANT TO THANK THEM UP TOP FOR 474 00:18:10,756 --> 00:18:12,758 MAKING TIME TO COME TODAY. 475 00:18:12,825 --> 00:18:15,060 I'M GOING TO INTRODUCE THEM EACH 476 00:18:15,127 --> 00:18:17,996 AS THEY GIVE THEIR TALKS, 477 00:18:18,063 --> 00:18:19,865 THEY'VE ABOUT 15 MINUTES TO 478 00:18:19,932 --> 00:18:22,601 PRESENT AND THEN WE WILL TAKE 479 00:18:22,668 --> 00:18:26,338 FIVE MINUTES OF Q&A, AND THEN 480 00:18:26,405 --> 00:18:29,274 THE TEAM HAS LEFT PLENTY OF TIME 481 00:18:29,341 --> 00:18:30,809 FOR MORE GENERAL DISCUSSION 482 00:18:30,876 --> 00:18:32,211 AFTER THE FOUR SPEAKERS. 483 00:18:32,277 --> 00:18:35,948 SO FIRST UP IS MY COLLEAGUE ADAM 484 00:18:36,014 --> 00:18:36,181 HARTMAN. 485 00:18:36,248 --> 00:18:39,117 DR. HARTMAN IS A PROGRAM 486 00:18:39,184 --> 00:18:40,786 DIRECTOR AT THE DIVISION OF 487 00:18:40,853 --> 00:18:43,622 CLINICAL RESEARCH AT NINDS, A 488 00:18:43,689 --> 00:18:48,994 CHILD NEUROLOGIST, AND HAS 489 00:18:49,061 --> 00:18:50,629 BACKGROUND IN EPILEPSY. 490 00:18:50,696 --> 00:18:51,830 HE WAS ASSOCIATE PROFESSOR AT 491 00:18:51,897 --> 00:18:53,899 JOHNS HOPKINS BEFORE COMING TO 492 00:18:53,966 --> 00:18:56,535 NINDS, SCHOOL OF MEDICINE, JOINT 493 00:18:56,602 --> 00:18:58,070 APPOINTMENT IN THE BLOOMBERG 494 00:18:58,136 --> 00:18:59,705 SCHOOL OF PUBLIC HEALTH. 495 00:18:59,771 --> 00:19:02,040 AND HE EARNED HIS BACHELOR'S 496 00:19:02,107 --> 00:19:06,044 DEGREE IN CHEMISTRY AND M.D. 497 00:19:06,111 --> 00:19:07,646 FROM NORTHWESTERN, GO WILDCATS. 498 00:19:07,713 --> 00:19:13,418 I'LL TURN IT OVER TO ADAM. 499 00:19:13,485 --> 00:19:14,820 >> THANK YOU VERY MUCH. 500 00:19:14,887 --> 00:19:16,688 THANK YOU TO THE ORGANIZERS FOR 501 00:19:16,755 --> 00:19:17,322 INVITING ME. 502 00:19:17,389 --> 00:19:18,991 CAN YOU HEAR ME OKAY? 503 00:19:19,057 --> 00:19:20,859 I'M USING A HEAD SET I DON'T 504 00:19:20,926 --> 00:19:21,693 USUALLY USE. 505 00:19:21,760 --> 00:19:21,960 WONDERFUL. 506 00:19:22,027 --> 00:19:23,896 THANKS FOR THE OPPORTUNITY. 507 00:19:23,962 --> 00:19:26,832 I'M ADAM HARTMAN. 508 00:19:26,899 --> 00:19:31,003 I'M A CHILD NEUROLOGIST BUT MORE 509 00:19:31,069 --> 00:19:32,437 GERMANE I'M A PRACTICING 510 00:19:32,504 --> 00:19:40,746 PEDIATRIC NEUROIST AND 511 00:19:40,812 --> 00:19:41,647 SUBSPECIALIZE IN PEDIATRIC 512 00:19:41,713 --> 00:19:42,214 EPILEPSY. 513 00:19:42,281 --> 00:19:43,815 I SEE PATIENTS AT JOHNS HOPKINS 514 00:19:43,882 --> 00:19:44,683 TOMORROW. 515 00:19:44,750 --> 00:19:45,884 THIS IS BASED ON A 516 00:19:45,951 --> 00:19:47,119 CONGLOMERATION OF TWO OR THREE 517 00:19:47,185 --> 00:19:48,654 PATIENTS IN MY CLINIC. 518 00:19:48,720 --> 00:19:49,254 NEXT SLIDE. 519 00:19:49,321 --> 00:19:50,622 MY OVERALL GOAL IS REALLY TO 520 00:19:50,689 --> 00:19:52,457 THINK ABOUT HOW WE PROTECT 521 00:19:52,524 --> 00:19:53,325 CHILDREN THROUGH RESEARCH RATHER 522 00:19:53,392 --> 00:19:54,693 THAN FROM RESEARCH. 523 00:19:54,760 --> 00:19:58,163 YOU'LL SEE HOW SOME OF THESE ARE 524 00:19:58,230 --> 00:20:02,768 PEDIATRIC UNIQUE ISSUES, SOME WE 525 00:20:02,834 --> 00:20:04,970 SHARE WITH ADULTS PARTICULARLY 526 00:20:05,037 --> 00:20:06,939 ADULTS IN A SOMEWHAT DEPENDENT 527 00:20:07,005 --> 00:20:07,906 LIFE POSITION, BUT YOU'LL SEE 528 00:20:07,973 --> 00:20:10,108 HOW SOME OF THESE ARE UNIQUE TO 529 00:20:10,175 --> 00:20:10,742 CHILDREN AS WELL. 530 00:20:10,809 --> 00:20:12,077 NEXT SLIDE PLEASE. 531 00:20:12,144 --> 00:20:15,247 SO LET'S TALK ABOUT THIS 532 00:20:15,314 --> 00:20:17,583 PATIENT, A 7-YEAR-OLD BOY, A 533 00:20:17,649 --> 00:20:19,518 CHRONIC -- I DIDN'T WANT TO 534 00:20:19,585 --> 00:20:20,953 SPECIFY A SPECIFIC NEUROLOGICAL 535 00:20:21,019 --> 00:20:23,355 DISEASE OR DISORDER BUT YOU'LL 536 00:20:23,422 --> 00:20:25,457 HEE HOW HOPEFULLY PEOPLE WITH 537 00:20:25,524 --> 00:20:28,627 SPECIALTIES IN DIFFERENT 538 00:20:28,694 --> 00:20:30,262 NEUROLOGICAL DISEASES WILL SEE 539 00:20:30,329 --> 00:20:31,563 THEIR DISEASE OF INTEREST 540 00:20:31,630 --> 00:20:33,765 REPRESENTED HERE. 541 00:20:33,832 --> 00:20:40,539 HE HAS A CHRONIC PAROSXYSMAL 542 00:20:40,606 --> 00:20:41,440 NEUROLOGIC DISEASE, PERIODS OF 543 00:20:41,506 --> 00:20:43,075 TIME IT FLARES IT. 544 00:20:43,141 --> 00:20:44,943 PRODUCT OF NORMAL PREGNANCY AND 545 00:20:45,010 --> 00:20:45,811 DELIVERY, SIGNS AND SYMPTOMS 546 00:20:45,877 --> 00:20:53,352 AROUND 2 YEARS OF AGE, NO CLEAR 547 00:20:53,418 --> 00:20:55,354 UNDERLYING GENETIC DIAGNOSIS, 548 00:20:55,420 --> 00:20:56,321 PROGNOSTICATION IS NOT 100% 549 00:20:56,388 --> 00:21:01,360 DETERMINED BUT HE ATTENDS A 550 00:21:01,426 --> 00:21:03,862 REGULAR SCHOOL WITH 551 00:21:03,929 --> 00:21:04,730 ACCOMMODATIONS, PAROSXYSMAL 552 00:21:04,796 --> 00:21:07,899 SOMETIMES INTERFERE WITH SCHOOL 553 00:21:07,966 --> 00:21:09,001 AND SOCIAL FUNCTIONING, 554 00:21:09,067 --> 00:21:10,535 COGNITIVELY IMPAIRED BUT CAN 555 00:21:10,602 --> 00:21:14,706 ASCENT TO PROCEDURES AND MAKE 556 00:21:14,773 --> 00:21:16,675 FUND MEDICAL DAILY DECISION, 557 00:21:16,742 --> 00:21:19,645 SEARCH YES/NO DECISIONS AND 558 00:21:19,711 --> 00:21:22,514 BASIC CHOICES WHEN HANDED A FEW 559 00:21:22,581 --> 00:21:23,181 OPTION. 560 00:21:23,248 --> 00:21:25,684 THE FAMILY HAS LIMITED 561 00:21:25,751 --> 00:21:26,451 RESOURCES, CURRENTLY RECEIVING 562 00:21:26,518 --> 00:21:27,886 BENEFITS THROUGH VARIOUS PUBLIC 563 00:21:27,953 --> 00:21:30,389 AID PROGRAMS, THEY HAVE 564 00:21:30,455 --> 00:21:32,057 CHALLENGES WITH TRANSPORTATION, 565 00:21:32,124 --> 00:21:34,426 CHALLENGES WITH SECURITY IN THE 566 00:21:34,493 --> 00:21:36,728 NEIGHBORHOOD WHERE HE LIVES, AND 567 00:21:36,795 --> 00:21:39,464 FOLLOW-UP IN CLINIC IS SOMETIMES 568 00:21:39,531 --> 00:21:39,731 SPORADIC. 569 00:21:39,798 --> 00:21:40,799 SOMETIMES THEY MISS 570 00:21:40,866 --> 00:21:41,133 APPOINTMENTS. 571 00:21:41,199 --> 00:21:42,000 NOT THAT UNCOMMON. 572 00:21:42,067 --> 00:21:44,703 YOU'LL HEAR A DAY OR TWO LATER 573 00:21:44,770 --> 00:21:46,038 WHY THAT HAPPENED, USUALLY 574 00:21:46,104 --> 00:21:47,339 RELATED TO EITHER TRANSPORTATION 575 00:21:47,406 --> 00:21:49,441 ISSUE OR SOMEONE BEING ABLE TO 576 00:21:49,508 --> 00:21:51,176 TAKE TIME OFF FROM WORK. 577 00:21:51,243 --> 00:21:57,215 THE NEXT SLIDE LET'S GET TO KNOW 578 00:21:57,282 --> 00:21:58,216 HIM BETTER. 579 00:21:58,283 --> 00:22:02,254 SO, HE'S BEEN TREATED WITH 580 00:22:02,320 --> 00:22:04,790 MULTIPLE MEDICATION, ALL FAILED 581 00:22:04,856 --> 00:22:14,399 TO TREAT UNDERLYING DISEASE. 582 00:22:14,466 --> 00:22:15,300 RESECTION SURGERY 583 00:22:15,367 --> 00:22:18,236 NOT OPTIONS FOR HIM. 584 00:22:18,303 --> 00:22:19,671 HE DOES RECEIVE PHYSICAL, 585 00:22:19,738 --> 00:22:21,740 OCCUPATIONAL, SPEECH THERAPY AT 586 00:22:21,807 --> 00:22:22,374 SCHOOL. 587 00:22:22,441 --> 00:22:23,508 HIS NEUROLOGIST WAS THINKING YOU 588 00:22:23,575 --> 00:22:24,509 MIGHT BE INTERESTED IN 589 00:22:24,576 --> 00:22:25,444 PARTICIPATING IN A CLINICAL 590 00:22:25,510 --> 00:22:28,313 TRIAL WITH A NEW INVASIVE 591 00:22:28,380 --> 00:22:29,281 NEUROSTIMULATION DEVICE. 592 00:22:29,347 --> 00:22:31,583 THE THING ABOUT THIS DEVICE IT 593 00:22:31,650 --> 00:22:33,885 REQUIRES MANY EARLY FOLLOW-UP 594 00:22:33,952 --> 00:22:35,287 VISITS FOR DEVICE PROGRAMMING, 595 00:22:35,353 --> 00:22:36,088 DEVICE MAINTENANCE, YOU NEED TO 596 00:22:36,154 --> 00:22:38,924 TAKE CARE OF IT AT THE VERY 597 00:22:38,990 --> 00:22:40,358 BEGINNING, AS WELL AS DOING 598 00:22:40,425 --> 00:22:41,259 INFORMATION DOWNLOADS, PART OF 599 00:22:41,326 --> 00:22:42,828 THAT RELATES TO THE PROGRAMMING 600 00:22:42,894 --> 00:22:44,262 AND SOME RELATES TO THE 601 00:22:44,329 --> 00:22:46,031 MAINTENANCE AS WELL. 602 00:22:46,098 --> 00:22:50,502 THE DEVICE HAS BEEN USED IN AN 603 00:22:50,569 --> 00:22:51,703 EXPLORATORY FASHION WITH SOME 604 00:22:51,770 --> 00:22:55,307 SUCCESS IN ADULT FORMS BUT THE 605 00:22:55,373 --> 00:22:56,508 REAL TARGET IS THE PEDIATRIC AGE 606 00:22:56,575 --> 00:23:01,012 GROUP FOR REASONS I'M ABOUT TO 607 00:23:01,079 --> 00:23:01,246 SHARE. 608 00:23:01,313 --> 00:23:02,848 NEXT SLIDE PLEASE. 609 00:23:02,914 --> 00:23:04,116 SO, IN TERMS OF THE CLINICAL 610 00:23:04,182 --> 00:23:06,251 TRIAL DESIGN BECAUSE THIS IS 611 00:23:06,318 --> 00:23:08,987 GOING TO HAVE AN IMPACT ON HOW 612 00:23:09,054 --> 00:23:11,523 WE THINK ABOUT THIS, THERE'S A 613 00:23:11,590 --> 00:23:12,924 BASELINE PERIOD MONITORING TO 614 00:23:12,991 --> 00:23:14,126 SEE HOW OFTEN HE'S HAVING 615 00:23:14,192 --> 00:23:15,327 EVENTS, HOW LONG THEY LAST, 616 00:23:15,393 --> 00:23:17,295 IMPACT THEY ARE HAVING ON HIS 617 00:23:17,362 --> 00:23:18,296 LIFE AND HIS FAMILY'S LIFE 618 00:23:18,363 --> 00:23:19,631 BECAUSE THEY NEED TO MAKE SURE 619 00:23:19,698 --> 00:23:21,266 HE WOULD BE ELIGIBLE FOR THE 620 00:23:21,333 --> 00:23:22,701 ACTUAL TRIAL. 621 00:23:22,768 --> 00:23:24,002 YOU HAVE THE HISTORICAL 622 00:23:24,069 --> 00:23:25,303 INFORMATION BUT THEY WANT TO 623 00:23:25,370 --> 00:23:27,606 START ACTUALLY COLLECTING AFTER 624 00:23:27,672 --> 00:23:31,409 THE NEUROSTIMULATOR HAS BEEN 625 00:23:31,476 --> 00:23:32,944 IMPLANTED, ACTUALLY COLLECTING 626 00:23:33,011 --> 00:23:34,312 ADDITIONAL PHYSIOLOGY-BASED 627 00:23:34,379 --> 00:23:34,613 INFORMATION. 628 00:23:34,679 --> 00:23:36,681 IT'S TWO TREATMENT ARMS. 629 00:23:36,748 --> 00:23:37,649 EITHER RECEIVING STIMULATION OR 630 00:23:37,716 --> 00:23:38,049 NOT. 631 00:23:38,116 --> 00:23:39,518 IT'S GOING TO BE FOUR TREATMENT 632 00:23:39,584 --> 00:23:41,953 BLOCKS, HE WILL BE RANDOMLY 633 00:23:42,020 --> 00:23:46,558 ASSIGNED TO ONE OF A NUMBER OF 634 00:23:46,625 --> 00:23:48,059 PATTERNS, ABAB, ABBA, YOU GET 635 00:23:48,126 --> 00:23:52,531 THE PICTURE, TWO CLOCKS WHERE 636 00:23:52,597 --> 00:23:55,534 HE'S STIMULATION, TWO BLOCKS NOT 637 00:23:55,600 --> 00:23:57,169 RECEIVING STIMULATION, VARYING 638 00:23:57,235 --> 00:23:57,936 DEPENDING WHICH BLOCK HE'S 639 00:23:58,003 --> 00:24:00,338 RANDOMLY ASSIGNED TO. 640 00:24:00,405 --> 00:24:03,408 IT'S A TRIPLE MASKED STUDY. 641 00:24:03,475 --> 00:24:06,144 THE CLINICIAN WHO IS TREATING 642 00:24:06,211 --> 00:24:06,812 HIM AND INVESTIGATOR TEAM 643 00:24:06,878 --> 00:24:08,747 DOESN'T KNOW WHAT HE'S 644 00:24:08,814 --> 00:24:10,315 RECEIVING, HE DOESN'T KNOW, AND 645 00:24:10,382 --> 00:24:11,383 THE PERSON PROGRAMMING THE 646 00:24:11,449 --> 00:24:12,918 DEVICE DOESN'T KNOW WHAT HE'S 647 00:24:12,984 --> 00:24:14,019 RECEIVING EITHER. 648 00:24:14,085 --> 00:24:15,387 SO NOBODY KNOWS WHAT'S GOING ON. 649 00:24:15,453 --> 00:24:19,925 THEY JUST KNOW THEY ARE FLIPPING 650 00:24:19,991 --> 00:24:21,660 A SWITCH. 651 00:24:21,726 --> 00:24:23,762 NEXT SLIDE. 652 00:24:23,829 --> 00:24:25,831 SO SOME ITEMS FOR DISCUSSION, I 653 00:24:25,897 --> 00:24:28,233 DON'T KNOW THAT THERE ARE SOLID 654 00:24:28,300 --> 00:24:29,768 100% ANSWERS BUT THESE ARE THE 655 00:24:29,835 --> 00:24:31,970 SORTS OF THINGS THAT I THINK 656 00:24:32,037 --> 00:24:33,939 ABOUT WHEN SOMETHING LIKE THIS 657 00:24:34,005 --> 00:24:35,006 COMES UP. 658 00:24:35,073 --> 00:24:37,509 WHAT IF THE OPTIMAL TIME FOR 659 00:24:37,576 --> 00:24:38,543 INTERVENTION, THIS IS A 660 00:24:38,610 --> 00:24:40,178 PEDIATRIC-SPECIFIC ISSUE, IS IN 661 00:24:40,245 --> 00:24:40,545 PRE-ADOLESCENCE? 662 00:24:40,612 --> 00:24:42,681 THAT IS LESS THAN IS IT YEARS OF 663 00:24:42,747 --> 00:24:44,616 AGE, BASED ON NATURAL HISTORY 664 00:24:44,683 --> 00:24:46,284 STUDIES SHOWING THAT THE RISK OF 665 00:24:46,351 --> 00:24:48,587 DEATH IS GREATEST AT LESS THAN 666 00:24:48,653 --> 00:24:49,888 12 YEARS OF AGE. 667 00:24:49,955 --> 00:24:51,556 SO, IN THIS PARTICULAR CASE THE 668 00:24:51,623 --> 00:24:58,797 RISK VARIES BY AGE. 669 00:24:58,864 --> 00:25:01,733 WHAT I'M SHOWING IN THIS GRAPH, 670 00:25:01,800 --> 00:25:03,568 TREATMENT IN CLINIC, I THINK OF 671 00:25:03,635 --> 00:25:04,569 RISK AND BENEFIT. 672 00:25:04,636 --> 00:25:07,505 THERE IS A RISK, IT'S NOT HUGE 673 00:25:07,572 --> 00:25:09,174 BUT IT'S MEASURABLE AND KNOWN, 674 00:25:09,241 --> 00:25:10,242 TO SOME DEGREE. 675 00:25:10,308 --> 00:25:12,110 SO THAT RISK SLOWLY DECREASES 676 00:25:12,177 --> 00:25:12,644 OVER TIME. 677 00:25:12,711 --> 00:25:14,212 WHEN WE THINK ABOUT THE 678 00:25:14,279 --> 00:25:15,280 POTENTIAL BENEFIT, THIS IS 679 00:25:15,347 --> 00:25:18,316 DRIVEN BY THAT RISK OF DEATH, IT 680 00:25:18,383 --> 00:25:21,753 REALLY DOES PEAK IN THE EARLIER 681 00:25:21,820 --> 00:25:22,954 YEARS, PRE-ADOLESCENT YEARS, THE 682 00:25:23,021 --> 00:25:24,356 BENEFIT DECREASES OVER TIME. 683 00:25:24,422 --> 00:25:26,658 IT'S NOT ZERO BUT AS YOU CAN SEE 684 00:25:26,725 --> 00:25:29,494 THERE'S VARIABILITY IN THAT RISK 685 00:25:29,561 --> 00:25:31,162 TO BENEFIT RATIO DEPENDING ON 686 00:25:31,229 --> 00:25:31,463 AGE. 687 00:25:31,529 --> 00:25:32,797 IT'S NOT LINEAR EARLIER BETTER, 688 00:25:32,864 --> 00:25:35,834 LATER NOT AS GOOD KIND OF THING 689 00:25:35,901 --> 00:25:36,501 OR CONVERSE. 690 00:25:36,568 --> 00:25:38,270 AND THE REASON I RAISE THIS IS 691 00:25:38,336 --> 00:25:40,105 BECAUSE SOMETIMES THIS QUESTION 692 00:25:40,171 --> 00:25:41,439 IS RAISED IF NEUROMODULATION IS 693 00:25:41,506 --> 00:25:49,648 SUSPECTED TO HAVE A 694 00:25:49,714 --> 00:25:54,452 DISEASE-MODIFYING EFFECT. 695 00:25:54,519 --> 00:26:01,259 THAT IS WHY THIS IS PERTINENT TO 696 00:26:01,326 --> 00:26:02,694 BRAIN INITIATIVE DISCUSSION. 697 00:26:02,761 --> 00:26:04,429 THEY ARE NOT NATURALLY PEDIATRIC 698 00:26:04,496 --> 00:26:07,599 SPECIFIC BUT THEY HIT THE 699 00:26:07,666 --> 00:26:08,800 PEDIATRIC POPULATION DIFFERENTLY 700 00:26:08,867 --> 00:26:11,303 THAN THEY DO OLDER PEOPLE. 701 00:26:11,369 --> 00:26:14,572 AND SO IF HE ACHIEVES RELIEF IN 702 00:26:14,639 --> 00:26:16,708 ONE STUDY BLOCK IS IT ETHICAL TO 703 00:26:16,775 --> 00:26:19,611 MOVE TO THE NEXT ONE? 704 00:26:19,678 --> 00:26:21,346 IT'S TRIPLE MASKED, BUT THE 705 00:26:21,413 --> 00:26:23,682 FAMILY MIGHT SEE THESE EVENTS 706 00:26:23,748 --> 00:26:24,549 REALLY STOP HAPPENING. 707 00:26:24,616 --> 00:26:25,650 WE DON'T KNOW. 708 00:26:25,717 --> 00:26:31,756 IS HE IN A PLACEBO BLOCK OR 709 00:26:31,823 --> 00:26:33,391 TREATMENT BLOCK? 710 00:26:33,458 --> 00:26:36,728 WHAT IF HE DOES NOT LIKE THE 711 00:26:36,795 --> 00:26:39,464 EFFECTS AND WANTS IT REMOVED 712 00:26:39,531 --> 00:26:42,500 WHEN OLDER. 713 00:26:42,567 --> 00:26:44,235 ONCE YOU'VE HAD THAT EFFECT IT'S 714 00:26:44,302 --> 00:26:46,438 NOT GOING AWAY, BECAUSE OF BRAIN 715 00:26:46,504 --> 00:26:47,973 MATURATION, WHAT IF HIS PARENTS 716 00:26:48,039 --> 00:26:49,507 DISAGREE WITH THAT DECISION HE'S 717 00:26:49,574 --> 00:26:51,142 MAKING? 718 00:26:51,209 --> 00:26:52,777 HE HAS SOMEWHAT LIMITED DECISION 719 00:26:52,844 --> 00:26:53,545 MAKING CAPABILITIES. 720 00:26:53,611 --> 00:26:56,181 WHAT'S THE BEST WAY TO HANDLE 721 00:26:56,247 --> 00:26:58,616 HIS ASSENT TO PARTICIPATE? 722 00:26:58,683 --> 00:27:01,786 SOMETHING THAT'S BEEN DISCUSSED 723 00:27:01,853 --> 00:27:04,055 IN THE LITERATURE BUT IS THIS 724 00:27:04,122 --> 00:27:05,824 COMMUNICATING THAT VARIABLE 725 00:27:05,890 --> 00:27:07,459 RISK/BENEFIT RATIO IS DIFFERENT 726 00:27:07,525 --> 00:27:08,760 THAN MORE STRAIGHTFORWARD, YOU 727 00:27:08,827 --> 00:27:11,396 KNOW, IF BOTH LINES WERE LINEAR 728 00:27:11,463 --> 00:27:13,465 OR HAD A FIXED SLOPE. 729 00:27:13,531 --> 00:27:15,567 AND THEN THIS COMES UP, THE LAST 730 00:27:15,633 --> 00:27:17,502 ONE, A LOT. 731 00:27:17,569 --> 00:27:18,303 VERY REAL WORLD. 732 00:27:18,370 --> 00:27:25,510 I FACED THIS BEFORE IN MY CLINIC 733 00:27:25,577 --> 00:27:27,746 MULTIPLE TYPES. 734 00:27:27,812 --> 00:27:28,580 SO FAMILY'S LOGISTICS CHALLENGES 735 00:27:28,646 --> 00:27:30,081 AFFECT WHETHER HE SHOULD BE 736 00:27:30,148 --> 00:27:32,117 OFFERED THE OPPORTUNITY IN THE 737 00:27:32,183 --> 00:27:35,387 STUDY GIVEN THERE'S HIGH DEMAND 738 00:27:35,453 --> 00:27:36,621 FOR PARTICIPATION, PARTICULARLY 739 00:27:36,688 --> 00:27:38,289 EARLY IN THE STUDY. 740 00:27:38,356 --> 00:27:40,759 AND I THINK AS WE GO TO THE NEXT 741 00:27:40,825 --> 00:27:43,361 SLIDE, I BELIEVE THAT WAS IT. 742 00:27:43,428 --> 00:27:45,463 I WANTED TO THANK EVERYONE FOR 743 00:27:45,530 --> 00:27:46,231 INVITING MY PARTICIPATION AND 744 00:27:46,297 --> 00:27:48,733 HOPEFULLY WE CAN HAVE A RICH 745 00:27:48,800 --> 00:27:54,305 DISCUSSION ABOUT SOME OF THESE 746 00:27:54,372 --> 00:27:58,610 ISSUES. 747 00:27:58,676 --> 00:28:02,847 >> THAT WAS GREAT SETUP. 748 00:28:02,914 --> 00:28:06,051 DO ANY OF THE NEWG MEMBERS HAVE 749 00:28:06,117 --> 00:28:09,754 QUESTIONS FOR ADAM CLARIFYING 750 00:28:09,821 --> 00:28:12,290 THE SITUATION OR MORE ABOUT THE 751 00:28:12,357 --> 00:28:14,692 DISCUSSION TOPICS? 752 00:28:14,759 --> 00:28:15,794 YES, CHRISTINE? 753 00:28:15,860 --> 00:28:17,562 >> A QUICK QUESTION, ADAM, MAYBE 754 00:28:17,629 --> 00:28:18,863 YOU SAID IT. 755 00:28:18,930 --> 00:28:21,599 HOW LONG ARE THE PERIODS OF 756 00:28:21,666 --> 00:28:23,435 STIMULATION AND THEN NO 757 00:28:23,501 --> 00:28:23,968 STIMULATION? 758 00:28:24,035 --> 00:28:25,203 >> GOOD QUESTION. 759 00:28:25,270 --> 00:28:26,971 I DIDN'T SAY IT. 760 00:28:27,038 --> 00:28:28,506 WHY DON'T WE SAY THREE MONTHS. 761 00:28:28,573 --> 00:28:31,376 >> THREE MONTHS ON, THREE MONTHS 762 00:28:31,443 --> 00:28:32,243 OFF. 763 00:28:32,310 --> 00:28:32,944 >> YEAH. 764 00:28:33,011 --> 00:28:34,846 >> A PATTERN. 765 00:28:34,913 --> 00:28:44,055 >> YEAH, A YEAR-LONG STUDY. 766 00:28:44,122 --> 00:28:45,256 >> THANK YOU. 767 00:28:45,323 --> 00:28:45,824 >> SAMEER? 768 00:28:45,890 --> 00:28:48,560 >> WHAT WOULD YOU IDENTIFY AS 769 00:28:48,626 --> 00:28:49,861 THE PEDIATRIC-SPECIFIC 770 00:28:49,928 --> 00:28:50,161 COMPONENTS? 771 00:28:50,228 --> 00:28:54,299 THE ONE OBVIOUSLY I THINK IS 772 00:28:54,365 --> 00:28:56,701 THAT THERE'S A DEVELOPING BRAIN, 773 00:28:56,768 --> 00:28:58,336 AND SO THE KIND OF CURVE YOU 774 00:28:58,403 --> 00:28:59,804 SHOWED IN TERMS OF RISK AND 775 00:28:59,871 --> 00:29:01,139 BENEFIT OVER TIME WILL BE A BIT 776 00:29:01,206 --> 00:29:06,344 SPECIFIC TO THE DEVELOPING BRAIN 777 00:29:06,411 --> 00:29:07,312 VERSUS THE ADULT BRAIN, OTHERS 778 00:29:07,378 --> 00:29:10,148 WHETHER THE PERSON IS ABLE TO 779 00:29:10,215 --> 00:29:11,583 CONSENT VERSUS ASSENT, TRUE, BUT 780 00:29:11,649 --> 00:29:16,721 THAT ALSO HAPPENS IN IN ADULTS 781 00:29:16,788 --> 00:29:17,689 WHO ARE DEPENDENT. 782 00:29:17,755 --> 00:29:19,224 THE FIRST IS CRITICAL. 783 00:29:19,290 --> 00:29:22,460 ARE THERE OTHERS YOU CONSIDER 784 00:29:22,527 --> 00:29:23,061 PEDIATRIC SPECIFIC? 785 00:29:23,128 --> 00:29:24,095 >> YEAH, GOOD QUESTION. 786 00:29:24,162 --> 00:29:25,563 THE FIRST IS THE MOST PEDIATRIC 787 00:29:25,630 --> 00:29:27,098 SPECIFIC ONE. 788 00:29:27,165 --> 00:29:28,867 YOU COULD SAY THAT THIS HAPPENS 789 00:29:28,933 --> 00:29:30,201 IN ADULTS TOO BUT THIS IS THE 790 00:29:30,268 --> 00:29:32,704 ONE THAT COMES UP THE MOST IN 791 00:29:32,770 --> 00:29:33,037 DISCUSSION. 792 00:29:33,104 --> 00:29:34,672 I THINK THE OTHER COMPONENT 793 00:29:34,739 --> 00:29:35,707 AGAIN IT'S NOT PEDIATRIC 794 00:29:35,773 --> 00:29:37,408 SPECIFIC BUT I THINK IT HITS THE 795 00:29:37,475 --> 00:29:39,711 PEDIATRIC POPULATION A LITTLE 796 00:29:39,777 --> 00:29:41,346 BIT DIFFERENTLY IS THE LIFE 797 00:29:41,412 --> 00:29:43,014 CIRCUMSTANCES AND SOME OF THE 798 00:29:43,081 --> 00:29:44,749 SOCIAL DETERMINANTS OF HEALTH. 799 00:29:44,816 --> 00:29:46,718 AGAIN, THOSE AREN'T NECESSARILY 800 00:29:46,784 --> 00:29:49,888 UNIQUE BUT I THINK TO -- TO 801 00:29:49,954 --> 00:29:50,321 PEDIATRIC. 802 00:29:50,388 --> 00:29:51,823 BUT THE WAY THEY IMPACT THE 803 00:29:51,890 --> 00:29:53,825 PEDIATRIC POPULATION IS A LITTLE 804 00:29:53,892 --> 00:29:56,261 BIT DIFFERENT THAN IT IMPACTS 805 00:29:56,327 --> 00:29:56,528 ADULTS. 806 00:29:56,594 --> 00:29:58,963 AND FINALLY I THINK WE HAVE THIS 807 00:29:59,030 --> 00:30:01,166 ISSUE OF EXPLANTATION, WHICH IS 808 00:30:01,232 --> 00:30:04,569 NOT UNIQUE TO PEDIATRICS BUT I 809 00:30:04,636 --> 00:30:06,304 THINK THAT HIS LIMITED 810 00:30:06,371 --> 00:30:07,405 DECISION-MAKING ABILITY AND THE 811 00:30:07,472 --> 00:30:09,841 TIME FRAME OVER WHICH -- WE'RE 812 00:30:09,908 --> 00:30:11,776 EXPECTING THIS PERSON ORDINARILY 813 00:30:11,843 --> 00:30:15,113 LIVING, YOU KNOW, 70, 80 YEARS, 814 00:30:15,180 --> 00:30:18,049 AND SO I THINK THAT THE TIME 815 00:30:18,116 --> 00:30:19,884 SCALE, I THINK THINGS GET 816 00:30:19,951 --> 00:30:30,328 WEIGHTED A LITTLE BIT 817 00:30:31,129 --> 00:30:31,663 DIFFERENTLY. 818 00:30:31,729 --> 00:30:34,399 >> I WAS WONDERING WILL 819 00:30:34,465 --> 00:30:35,633 LONG-TERM CIRCUIT EFFECTS. 820 00:30:35,700 --> 00:30:40,405 IS IT REINFORCEMENT OF CIRCUITS? 821 00:30:40,471 --> 00:30:41,739 IS IT NEW NEUROGENESIS, 822 00:30:41,806 --> 00:30:44,442 SYNAPTOGENESIS, IS THERE 823 00:30:44,509 --> 00:30:45,109 POTENTIAL ENHANCEMENT AS OPPOSED 824 00:30:45,176 --> 00:30:46,744 TO MAINTENANCE ASSOCIATED WITH 825 00:30:46,811 --> 00:30:47,412 THE STIMULATION? 826 00:30:47,478 --> 00:30:49,280 >> GREAT QUESTION. 827 00:30:49,347 --> 00:30:51,082 WE TRIED TO MAKE THIS SOMEWHAT 828 00:30:51,149 --> 00:30:52,350 DISEASE AGNOSTIC SO I THINK ANY 829 00:30:52,417 --> 00:31:02,093 OF THOSE WOULD BE FAIR GAME FOR 830 00:31:02,160 --> 00:31:04,262 DISCUSSION. 831 00:31:04,329 --> 00:31:05,163 >> OKAY. 832 00:31:05,230 --> 00:31:07,465 SEEING NO OTHER HANDS, GOING 833 00:31:07,532 --> 00:31:08,666 ONCE, GOING TWICE. 834 00:31:08,733 --> 00:31:09,867 ALL RIGHT. 835 00:31:09,934 --> 00:31:15,707 LET'S MOVE TO OUR SECOND 836 00:31:15,773 --> 00:31:15,940 SPEAKER. 837 00:31:16,007 --> 00:31:18,643 NEXT UP WE HAVE DR. MARTY 838 00:31:18,710 --> 00:31:21,179 MORRELL, SHE'S A CLINICAL 839 00:31:21,246 --> 00:31:22,880 PROFESSOR OF NEUROLOGY AT 840 00:31:22,947 --> 00:31:26,084 STANFORD UNIVERSITY, GRADUATE OF 841 00:31:26,150 --> 00:31:26,851 THE STANFORD MEDICAL SCHOOL, 842 00:31:26,918 --> 00:31:28,820 RESIDENCY TRAINING IN NEUROLOGY 843 00:31:28,886 --> 00:31:30,121 AT UNIVERSITY OF PENNSYLVANIA, 844 00:31:30,188 --> 00:31:36,928 AS WELL AS FELLOWSHIP TRAINING 845 00:31:36,995 --> 00:31:39,297 IN GENE EPILEPS, ACTIVE IN 846 00:31:39,364 --> 00:31:44,002 BRINGING DEVICES TO PEOPLE WITH 847 00:31:44,068 --> 00:31:45,570 EPILEPSY, AND CHIEF MEDICAL 848 00:31:45,637 --> 00:31:47,305 OFFICER SINCE 2004 WITH A 849 00:31:47,372 --> 00:31:49,607 COMPANY THAT DEVELOPED 850 00:31:49,674 --> 00:31:51,242 RESPONSIVE NEUROSTIMULATOR FOR 851 00:31:51,309 --> 00:31:53,444 TREATMENT OF MEDICALLY 852 00:31:53,511 --> 00:31:55,880 UNCONTROLLED PARTIAL SEIZURES. 853 00:31:55,947 --> 00:31:57,715 >> THANK YOU SO MUCH. 854 00:31:57,782 --> 00:32:00,018 AND I'LL JUST CONFIRM YOU SEE MY 855 00:32:00,084 --> 00:32:02,287 SLIDE. 856 00:32:04,155 --> 00:32:05,423 >> WE DON'T SEE IT YET. 857 00:32:05,490 --> 00:32:07,191 >> YOU DON'T SEE IT YET? 858 00:32:07,258 --> 00:32:07,725 OKAY. 859 00:32:07,792 --> 00:32:14,399 SO WHAT I WILL NEED TO DO IS TO 860 00:32:14,465 --> 00:32:14,732 SHARE. 861 00:32:14,799 --> 00:32:15,833 HERE WE GO. 862 00:32:15,900 --> 00:32:22,373 NOW YOU SHOULD BE ABLE TO SEE 863 00:32:22,440 --> 00:32:22,540 IT. 864 00:32:22,607 --> 00:32:23,708 EXCUSE ME. 865 00:32:23,775 --> 00:32:25,343 IT IS UPLOADING. 866 00:32:25,410 --> 00:32:31,249 I'LL BEGIN BY SAYING MY TITLE IS 867 00:32:31,316 --> 00:32:32,550 DELIVERING NEW NEURAL 868 00:32:32,617 --> 00:32:33,651 STIMULATION THERAPIES TO 869 00:32:33,718 --> 00:32:37,822 CHILDREN, I'M NOT AT ETHICIST 870 00:32:37,889 --> 00:32:40,792 BUT WILL ATTEMPT TO DISCUSS 871 00:32:40,858 --> 00:32:42,660 ETHICAL CONSIDERATIONS, ALSO 872 00:32:42,727 --> 00:32:43,294 PRAGMATIC. 873 00:32:43,361 --> 00:32:44,595 AND I'LL ALSO BEGIN WHILE 874 00:32:44,662 --> 00:32:48,766 THERE'S SOME PROBLEMS WITH MY 875 00:32:48,833 --> 00:32:51,703 SLIDES LOADING, TO PROVIDE SOME 876 00:32:51,769 --> 00:32:51,936 CONTEXT. 877 00:32:52,003 --> 00:32:54,339 SO, I DO HAVE CONFLICTS OF 878 00:32:54,405 --> 00:32:55,406 INTEREST. 879 00:32:55,473 --> 00:32:57,075 I'M CHIEF MEDICAL CENTER OF 880 00:32:57,141 --> 00:32:59,577 NEURAL PACE, A COMPANY THAT 881 00:32:59,644 --> 00:33:04,248 DEVELOPED AND BRINGS TO PATIENTS 882 00:33:04,315 --> 00:33:05,917 RESPONSIVE NEUROSTIMULATION FOR 883 00:33:05,983 --> 00:33:06,184 EPILEPSY. 884 00:33:06,250 --> 00:33:09,354 I ALSO AM AN EMPLOYEE, AND 885 00:33:09,420 --> 00:33:11,422 OFFICER OF THE COMPANY. 886 00:33:11,489 --> 00:33:14,492 IN ADDITION I'M A PRINCIPAL 887 00:33:14,559 --> 00:33:19,530 INVESTIGATOR OF AN NIH UH3 GRANT 888 00:33:19,597 --> 00:33:22,367 IN EPILEPSY, AND LIKE ADAM I'M A 889 00:33:22,433 --> 00:33:25,570 PHYSICIAN WHO IS ACTIVELY 890 00:33:25,636 --> 00:33:28,406 TREATING PERSONS WITH EPILEPSY. 891 00:33:28,473 --> 00:33:32,110 AND I APOLOGIZE FOR THIS SNAFU. 892 00:33:32,176 --> 00:33:34,312 I DON'T KNOW WHY IT IS NOT 893 00:33:34,379 --> 00:33:34,979 WORKING. 894 00:33:35,046 --> 00:33:37,248 >> WOULD IT BE HELPFUL IF YOU 895 00:33:37,315 --> 00:33:38,449 SHARED YOUR SLIDES WITH ONE OF 896 00:33:38,516 --> 00:33:41,085 THE ORGANIZERS AND WE CAN TRY TO 897 00:33:41,152 --> 00:33:41,853 PROJECT IT? 898 00:33:41,919 --> 00:33:47,658 >> YEAH, WHY DON'T WE DO THAT. 899 00:33:47,725 --> 00:33:49,727 >> I'M GOING TO ASK NINA, WHO IS 900 00:33:49,794 --> 00:33:53,131 THE BEST PERSON FOR MARTY TO 901 00:33:53,197 --> 00:33:55,199 SEND HER SLIDES TO? 902 00:33:55,266 --> 00:33:57,034 >> DR. MORRELL, THE BEST PERSON 903 00:33:57,101 --> 00:33:59,237 TO E-MAIL THEM IS REBECCA, I 904 00:33:59,303 --> 00:34:01,105 WILL DROP HER E-MAIL IN THE 905 00:34:01,172 --> 00:34:04,275 CHAT. 906 00:34:04,342 --> 00:34:04,909 >> OKAY. 907 00:34:04,976 --> 00:34:05,576 VERY GOOD. 908 00:34:05,643 --> 00:34:06,811 >> WHILE THAT'S HAPPENING FEEL 909 00:34:06,878 --> 00:34:10,281 FREE TO CONTINUE TO TALK YOUR 910 00:34:10,348 --> 00:34:12,150 WAY THROUGH. 911 00:34:12,216 --> 00:34:16,320 >> WELL, I MAY BE ABLE TO DO 912 00:34:16,387 --> 00:34:25,730 THIS A DIFFERENT WAY. 913 00:34:25,797 --> 00:34:31,636 SO, I AM IT IS PUTTING ME INTO A 914 00:34:31,702 --> 00:34:34,705 DIFFERENT -- I'M JUST GOING TO 915 00:34:34,772 --> 00:34:37,241 ACTUALLY PROBABLY -- LET'S SEE 916 00:34:37,308 --> 00:34:38,309 IF I CAN PRESENT. 917 00:34:38,376 --> 00:34:40,278 >> MAYBE WHILE YOU SEND THE 918 00:34:40,344 --> 00:34:41,813 SLIDES TO REBECCA SHALL WE SKIP 919 00:34:41,879 --> 00:34:43,548 TO THE NEXT SPEAKER AND HAVE YOU 920 00:34:43,614 --> 00:34:44,315 COME BACK? 921 00:34:44,382 --> 00:34:46,284 DOES THAT WORK FOR YOU? 922 00:34:46,350 --> 00:34:51,422 >> THAT WOULD WORK BETTER. 923 00:34:51,489 --> 00:34:52,190 THANK YOU. 924 00:34:52,256 --> 00:34:52,957 >> ASSUMING THAT THE NEXT 925 00:34:53,024 --> 00:34:54,392 SPEAKER IS READY. 926 00:34:54,459 --> 00:34:58,129 SORRY, DIDN'T MEAN TO CAUSE A 927 00:34:58,196 --> 00:34:59,096 CASCADE HERE. 928 00:34:59,163 --> 00:35:02,266 >> I'M THE NEXT SPEAKER AND I'M 929 00:35:02,333 --> 00:35:02,500 READY. 930 00:35:02,567 --> 00:35:03,468 >> OKAY, GREAT. 931 00:35:03,534 --> 00:35:05,770 >> I JUST FOUND MY VIDEO BUTTON. 932 00:35:05,837 --> 00:35:07,638 THANKS VERY MUCH. 933 00:35:07,705 --> 00:35:10,341 >> THANKS FOR BEING 934 00:35:10,408 --> 00:35:11,476 ACCOMMODATING, BEN. 935 00:35:11,542 --> 00:35:20,318 NEXT SPEAKER IS DR. BEN 936 00:35:20,384 --> 00:35:23,521 WILFOND, INVESTIGATOR AT CENTER 937 00:35:23,588 --> 00:35:27,692 FOR PEDIATRIC AND BIOETHICS AND 938 00:35:27,758 --> 00:35:31,496 PULMONARY CARE, SEATTLE 939 00:35:31,562 --> 00:35:33,030 CHILDREN'S HOSPITAL, PROFESSOR 940 00:35:33,097 --> 00:35:36,767 IN PULMONARY AND SLEEP MEDICINE, 941 00:35:36,834 --> 00:35:37,768 PEDIATRICS, UNIVERSITY OF 942 00:35:37,835 --> 00:35:40,404 WASHINGTON SCHOOL OF MEDICINE. 943 00:35:40,471 --> 00:35:41,806 AND I WILL TURN IT OVER TO HIM. 944 00:35:41,873 --> 00:35:42,240 THANK YOU. 945 00:35:42,306 --> 00:35:45,510 >> I WILL SEE IF I CAN 946 00:35:45,576 --> 00:35:48,679 SUCCESSFULLY SHARE MY SLIDES. 947 00:35:48,746 --> 00:35:56,554 LET ME SEE IF THIS WORKS. 948 00:35:56,621 --> 00:35:58,256 OKAY. 949 00:35:58,322 --> 00:35:59,824 CAN YOU SEE THOSE? 950 00:35:59,891 --> 00:36:00,758 >> YES. 951 00:36:00,825 --> 00:36:02,793 THEY ARE NOT IN PRESENTATION 952 00:36:02,860 --> 00:36:03,227 MODE. 953 00:36:03,294 --> 00:36:13,871 >> I'M HITTING THAT BUTTON NOW. 954 00:36:41,632 --> 00:36:41,899 >> PERFECT. 955 00:36:41,966 --> 00:36:44,201 >> I'M ON THE WRONG SLIDE. 956 00:36:44,268 --> 00:36:45,536 OKAY. 957 00:36:45,603 --> 00:36:47,271 SO, FIRST OF ALL, I'M READY TO 958 00:36:47,338 --> 00:36:47,505 GO. 959 00:36:47,572 --> 00:36:49,340 FIRST OF ALL, THANK YOU FOR 960 00:36:49,407 --> 00:36:50,875 HAVING ME HERE. 961 00:36:50,942 --> 00:36:54,312 I'M NOT A NEUROLOGIST, I'M A 962 00:36:54,378 --> 00:36:54,979 PEDIATRIC PULMONOLOGIST. 963 00:36:55,046 --> 00:36:58,215 MY FOCUS IS ON INFANTS WITH 964 00:36:58,282 --> 00:37:00,952 CHRONIC LUNG DISEASE AND 965 00:37:01,018 --> 00:37:02,253 PREMATURITY, SPECIFICALLY MEANS 966 00:37:02,320 --> 00:37:04,956 I'M REALLY USED TO DEALING WITH 967 00:37:05,022 --> 00:37:08,292 SMALL BABIES. 968 00:37:08,359 --> 00:37:13,464 FOR ME, I WOULD DESCRIBE IT AS 969 00:37:13,531 --> 00:37:16,300 THE PEDIATRICS IS INHERENT IN 970 00:37:16,367 --> 00:37:18,469 EVERYTHING I DO. 971 00:37:18,536 --> 00:37:20,104 FOR ME, LESS RELEVANT TO ADULTS 972 00:37:20,171 --> 00:37:22,406 BECAUSE THIS IS KIND OF MY BREAD 973 00:37:22,473 --> 00:37:22,974 AND BUTTER. 974 00:37:23,040 --> 00:37:25,242 WHEN NINA FIRST ASKED ME TO GIVE 975 00:37:25,309 --> 00:37:26,577 THIS PRESENTATION, I HAVE TO 976 00:37:26,644 --> 00:37:27,778 ACKNOWLEDGE I WAS QUITE 977 00:37:27,845 --> 00:37:29,313 INTIMIDATED BECAUSE I DON'T 978 00:37:29,380 --> 00:37:31,616 NORMALLY THINK ABOUT ISSUES OF 979 00:37:31,682 --> 00:37:34,418 NEUROLOGY BUT ALSO TOPIC WAS 980 00:37:34,485 --> 00:37:37,855 BROAD, REMINDED ME OF A FRESHMAN 981 00:37:37,922 --> 00:37:40,257 PHILOSOPHY EXAM THAT WE HAD ONE 982 00:37:40,324 --> 00:37:42,226 QUESTION, WHICH WAS DEFINE THE 983 00:37:42,293 --> 00:37:44,762 UNIVERSE AND GIVE TWO EXAMPLES. 984 00:37:44,829 --> 00:37:46,931 AND SO I ASKED NINA, I WISH WE 985 00:37:46,998 --> 00:37:49,867 COULD HAVE A CASE TO FOCUS ON. 986 00:37:49,934 --> 00:37:51,502 I APPRECIATE, I'M GLAD ADAM 987 00:37:51,569 --> 00:37:53,270 PRESENTED THAT CASE BECAUSE MY 988 00:37:53,337 --> 00:37:55,373 INTENTION IS TO TRY TO ADDRESS 989 00:37:55,439 --> 00:37:58,643 MANY OF THE ISSUES THAT ADAM 990 00:37:58,709 --> 00:38:00,277 IDENTIFIED AS WELL AS TALK ABOUT 991 00:38:00,344 --> 00:38:01,579 A FEW OTHERS. 992 00:38:01,646 --> 00:38:03,347 BECAUSE I ONLY HAVE 15 MINUTES 993 00:38:03,414 --> 00:38:04,982 I'M IN GENERAL TALKING ABOUT 994 00:38:05,049 --> 00:38:08,386 THIS AT A FAIRLY HIGH LEVEL. 995 00:38:08,452 --> 00:38:10,321 THERE'S MUCH ROOM FOR FURTHER 996 00:38:10,388 --> 00:38:11,522 CONVERSATION AS WELL. 997 00:38:11,589 --> 00:38:14,058 I'M ACTUALLY GOING TO BEGIN WITH 998 00:38:14,125 --> 00:38:16,961 A SLIDE THAT'S BASED UPON A 999 00:38:17,028 --> 00:38:20,398 PAPER THAT CHRISTINE GRADY WAS A 1000 00:38:20,464 --> 00:38:21,932 CO-AUTHOR ON, FROM ALMOST 25 1001 00:38:21,999 --> 00:38:24,435 YEARS AGO, THAT HAS BEEN THE 1002 00:38:24,502 --> 00:38:25,970 FRAMEWORK I'VE USED SINCE THEN 1003 00:38:26,037 --> 00:38:28,372 FOR THINKING ABOUT ANY ETHICAL 1004 00:38:28,439 --> 00:38:31,542 ISSUE WHICH IS TO IDENTIFY THESE 1005 00:38:31,609 --> 00:38:32,877 EIGHT COMPONENTS, BENCHMARKS, 1006 00:38:32,943 --> 00:38:34,979 FOR THINKING ABOUT ETHICAL 1007 00:38:35,046 --> 00:38:36,414 CLINICAL RESEARCH, AND YOU'LL 1008 00:38:36,480 --> 00:38:39,450 SEE MY COMMENTS ADDRESS MANY OF 1009 00:38:39,517 --> 00:38:40,718 THESE TOPICS. 1010 00:38:40,785 --> 00:38:42,086 THIS FRAMEWORK DOES NOT SOLVE 1011 00:38:42,153 --> 00:38:44,388 THE PROBLEM BUT HELPS IDENTIFY 1012 00:38:44,455 --> 00:38:47,758 WHERE THE ISSUE IS AND SO YOU'LL 1013 00:38:47,825 --> 00:38:50,327 SEE ME COMMENTING ON THESE 1014 00:38:50,394 --> 00:38:51,495 BENCHMARKS DURING MY TALK. 1015 00:38:51,562 --> 00:38:55,633 THE OTHER THING I'M GOING TO 1016 00:38:55,700 --> 00:38:57,201 BRING FOR ORIENTATION IS ANOTHER 1017 00:38:57,268 --> 00:38:59,737 SPECIFIC FOR PEDIATRIC RESEARCH 1018 00:38:59,804 --> 00:39:01,439 THAT WAS ACTUALLY FIRST ABOUT 1019 00:39:01,505 --> 00:39:10,648 TEN YEARS AGO BY SKIP NELSON AND 1020 00:39:10,715 --> 00:39:16,654 RALPH KLEIN, BASED UPON -- ROTH 1021 00:39:16,721 --> 00:39:21,692 CLINE, IT PUTS IT IN A 1022 00:39:21,759 --> 00:39:30,334 DIGESTIBLE STRUCTURE, A CRITICAL 1023 00:39:30,401 --> 00:39:33,504 ISSUE, ONLY TO ENROLL CHILDREN 1024 00:39:33,571 --> 00:39:34,338 WHEN SCIENTIFICALLY IMPORTANT. 1025 00:39:34,405 --> 00:39:35,272 ADAM TALKED ABOUT THE POTENTIAL 1026 00:39:35,339 --> 00:39:36,674 ISSUE OF THE DEVELOPING BRAIN. 1027 00:39:36,741 --> 00:39:38,209 FOR ME THAT'S NOT A PROBLEM. 1028 00:39:38,275 --> 00:39:40,611 THAT'S THE REASON FOR DOING 1029 00:39:40,678 --> 00:39:40,978 THIS. 1030 00:39:41,045 --> 00:39:42,480 AND THE PARTICULAR IMPORTANT 1031 00:39:42,546 --> 00:39:44,215 REASON FOR WHY WE WANT TO THINK 1032 00:39:44,281 --> 00:39:47,518 HOW TO DO IT IN YOUNG CHILDREN. 1033 00:39:47,585 --> 00:39:49,153 ANOTHER PART OF THIS FRAMEWORK 1034 00:39:49,220 --> 00:39:51,455 IS THINKING ABOUT RISKS AND 1035 00:39:51,522 --> 00:39:53,424 CONCEPTUALLY THE MAIN IDEA ALL 1036 00:39:53,491 --> 00:39:56,260 THINGS BEING EQUAL WE WANT TO 1037 00:39:56,327 --> 00:39:57,895 HAVE LOWER RISKS THAN WE MIGHT 1038 00:39:57,962 --> 00:40:01,866 BE WILLING TO ACCEPT IN ADULTS. 1039 00:40:01,932 --> 00:40:03,467 AND IDEALLY WE WANT TO ENSURE 1040 00:40:03,534 --> 00:40:04,635 THAT THERE'S SOME OPPORTUNITY 1041 00:40:04,702 --> 00:40:06,337 FOR DIRECT BENEFIT WHEN 1042 00:40:06,403 --> 00:40:06,604 POSSIBLE. 1043 00:40:06,670 --> 00:40:08,539 PARTICULARLY THINGS BEING DONE 1044 00:40:08,606 --> 00:40:10,407 FOR THERAPEUTIC INTENT. 1045 00:40:10,474 --> 00:40:12,476 SOME RESEARCH DOES NOT HAVE A 1046 00:40:12,543 --> 00:40:14,011 THERAPEUTIC INTENT, AND THERE 1047 00:40:14,078 --> 00:40:15,212 ARE NO DIRECT BENEFITS, BUT AT 1048 00:40:15,279 --> 00:40:17,848 LEAST WE WANT TO MAKE SURE 1049 00:40:17,915 --> 00:40:19,683 PEOPLE ARE NOT DISADVANTAGED BY 1050 00:40:19,750 --> 00:40:21,018 PARTICIPATING IN THE RESEARCH, 1051 00:40:21,085 --> 00:40:25,489 NOT EXPOSED TO EITHER EXCESSES 1052 00:40:25,556 --> 00:40:28,559 OF RISK OR OTHERWISE LIMIT 1053 00:40:28,626 --> 00:40:30,528 OTHERWISE AVAILABLE CARE. 1054 00:40:30,594 --> 00:40:34,031 THE FOURTH ISSUE IS ASSENT WHICH 1055 00:40:34,098 --> 00:40:35,232 WE'LL TALK ABOUT, ADAM SUGGESTED 1056 00:40:35,299 --> 00:40:37,635 THIS WAS MORE COVERED, I DON'T 1057 00:40:37,701 --> 00:40:39,303 KNOW HOW YOU THINK IT'S BEING 1058 00:40:39,370 --> 00:40:40,704 COVERED SO I'M GOING TO SPEND 1059 00:40:40,771 --> 00:40:44,208 MORE TIME TALKING ABOUT ASSENT 1060 00:40:44,275 --> 00:40:45,209 THAN OTHER ISSUES. 1061 00:40:45,276 --> 00:40:51,916 THE FINAL ISSUE IS NOT IN THE 1062 00:40:51,982 --> 00:40:53,450 ROTH-CLINE-NELSON FRAMEWORK BUT 1063 00:40:53,517 --> 00:40:54,819 I ADDED THE NOTION OF COMMUNITY 1064 00:40:54,885 --> 00:40:57,588 ENGAGEMENT AND PUBLIC REVIEW. 1065 00:40:57,655 --> 00:41:00,324 YOU'LL HEAR ABOUT WHAT IN 1066 00:41:00,391 --> 00:41:01,992 ANOTHER PRESENTATION, TALKING 1067 00:41:02,059 --> 00:41:03,961 ABOUT DATA FROM COMMUNITY 1068 00:41:04,028 --> 00:41:05,029 ENGAGEMENT, I THINK PARTICULARLY 1069 00:41:05,095 --> 00:41:06,463 IMPORTANT AND THIS MEETING 1070 00:41:06,530 --> 00:41:09,200 ITSELF IS AN EXAMPLE OF THE TYPE 1071 00:41:09,266 --> 00:41:10,501 OF ENGAGEMENT THAT'S NECESSARY. 1072 00:41:10,568 --> 00:41:17,074 SO I'M GOING TO TALK ABOUT FOUR 1073 00:41:17,141 --> 00:41:18,642 ISSUES BRIEFLY. 1074 00:41:18,709 --> 00:41:20,177 COMMENTS ABOUT 1075 00:41:20,244 --> 00:41:21,278 PLACEBO-CONTROLLED TRIALS, 1076 00:41:21,345 --> 00:41:23,013 POST-TRIAL OBLIGATIONS, AND WITH 1077 00:41:23,080 --> 00:41:24,548 PERMISSION AND ASSENT. 1078 00:41:24,615 --> 00:41:26,350 I WANT TO TAKE ADAM'S QUESTION, 1079 00:41:26,417 --> 00:41:30,154 TRY TO GIVE SHORT SIMPLE ANSWERS 1080 00:41:30,221 --> 00:41:31,589 THAT CLEARLY NEED MORE NUANCE 1081 00:41:31,655 --> 00:41:35,292 BUT THIS IS MY SHORT VERSION, 1082 00:41:35,359 --> 00:41:36,927 LIKE MY PHILOSOPHY EXAM WHERE 1083 00:41:36,994 --> 00:41:39,029 YOU HAD TO FIND THE UNIVERSE AND 1084 00:41:39,096 --> 00:41:40,431 GIVE TWO EXAMPLES. 1085 00:41:40,497 --> 00:41:41,532 SELECTION OF CHILDREN, ONE OF 1086 00:41:41,599 --> 00:41:44,935 THE BIG ISSUES THAT COMES UP FOR 1087 00:41:45,002 --> 00:41:46,570 NEW DEVICES PARTICULARLY, NEW 1088 00:41:46,637 --> 00:41:50,174 MEDICATIONS, IS NOTION THAT WE 1089 00:41:50,241 --> 00:41:51,609 TYPICALLY DO THINGS IN ADULTS 1090 00:41:51,675 --> 00:41:53,244 BEFORE CHILDREN. 1091 00:41:53,310 --> 00:41:54,778 THIS BECOMES CHALLENGING WHEN 1092 00:41:54,845 --> 00:41:56,847 THE DISEASE IS EITHER DIFFERENT 1093 00:41:56,914 --> 00:41:59,583 IN CHILDREN OR HAS DIFFERENT 1094 00:41:59,650 --> 00:42:00,251 IMPLICATIONS. 1095 00:42:00,317 --> 00:42:05,723 AND I THINK THE CONCEPTS OF THE 1096 00:42:05,789 --> 00:42:07,691 FRAMEWORK OF SCIENTIFIC VALIDITY 1097 00:42:07,758 --> 00:42:09,460 AND SOCIAL VALUE DRIVE TOWARDS 1098 00:42:09,526 --> 00:42:12,830 EARLIER INCLUSION OF CHILDREN TO 1099 00:42:12,897 --> 00:42:13,731 ANSWER THOSE QUESTIONS 1100 00:42:13,797 --> 00:42:15,566 SCIENTIFICALLY NECESSARY AND AS 1101 00:42:15,633 --> 00:42:16,667 IMPORTANTLY ARE CRITICALLY 1102 00:42:16,734 --> 00:42:18,335 SOCIALLY IMPORTANT FOR THOSE 1103 00:42:18,402 --> 00:42:18,936 CHILDREN THEMSELVES. 1104 00:42:19,003 --> 00:42:25,209 I THINK IT'S GOOD TO INCLUDE 1105 00:42:25,276 --> 00:42:25,643 CHILDREN. 1106 00:42:25,709 --> 00:42:26,310 SECONDLY, THE QUESTION ABOUT THE 1107 00:42:26,377 --> 00:42:29,246 AGE OF THE CHILDREN. 1108 00:42:29,313 --> 00:42:30,714 THERE'S ALL SORTS, PARTICULARLY 1109 00:42:30,781 --> 00:42:33,384 BECAUSE OF NOTION OF ASSENT FOR 1110 00:42:33,450 --> 00:42:34,818 AGE DEESCALATION. 1111 00:42:34,885 --> 00:42:37,321 START IN ADULTS, GO 1112 00:42:37,388 --> 00:42:38,989 17-YEAR-OLDS, THEN 15-YEAR-OLD, 1113 00:42:39,056 --> 00:42:39,790 THEN 12-YEAR-OLDS, AND WORK YOUR 1114 00:42:39,857 --> 00:42:40,624 WAY DOWN. 1115 00:42:40,691 --> 00:42:45,095 THIS IS A COMMON PRACTICE. 1116 00:42:45,162 --> 00:42:46,764 AGAIN, AS A PULMONOLOGIST TAKING 1117 00:42:46,830 --> 00:42:48,065 CARE OF BABIES IT'S FRUSTRATING 1118 00:42:48,132 --> 00:42:49,500 WHEN I HAVE TO WAIT A LONG TIME 1119 00:42:49,566 --> 00:42:51,902 FOR THINGS TO COME UP AND 1120 00:42:51,969 --> 00:42:52,903 CLEARLY THERE'S VALUE TO 1121 00:42:52,970 --> 00:42:55,873 THINKING ABOUT YOUNG CHILDREN 1122 00:42:55,940 --> 00:42:56,640 MORE PARTICULARLY WHEN THERE'S 1123 00:42:56,707 --> 00:42:59,043 SCIENTIFIC REASONS AS WELL AS 1124 00:42:59,109 --> 00:43:00,144 RISK/BENEFIT RATIO MAY BE 1125 00:43:00,210 --> 00:43:01,445 DIFFERENT IN THESE YOUNGER 1126 00:43:01,512 --> 00:43:02,212 CHILDREN. 1127 00:43:02,279 --> 00:43:04,748 I WANT TO MAKE MORE COMMENTS 1128 00:43:04,815 --> 00:43:07,685 WILL INCLUDE OF CHILDREN WITH 1129 00:43:07,751 --> 00:43:10,888 FUNDED RESOURCES AND SAY THAT A 1130 00:43:10,955 --> 00:43:16,994 VARIETY OF REASONS THIS IS TO ME 1131 00:43:17,061 --> 00:43:18,529 UNAMBIGUOUS, HOW TO DO BETTER, 1132 00:43:18,595 --> 00:43:19,630 FOR MANY REASONS. 1133 00:43:19,697 --> 00:43:22,666 IN PART THESE CHILDREN ARE NOT 1134 00:43:22,733 --> 00:43:24,535 RESPONSIBLE FOR THEIR SOCIAL 1135 00:43:24,601 --> 00:43:25,302 CIRCUMSTANCES. 1136 00:43:25,369 --> 00:43:26,203 PARTICULARLY WE'RE THINKING 1137 00:43:26,270 --> 00:43:30,774 ABOUT THE TYPES OF 1138 00:43:30,841 --> 00:43:31,442 INTERVENTIONS, MAKING 1139 00:43:31,508 --> 00:43:32,509 ACCOMMODATIONS TO INCLUDE THEM 1140 00:43:32,576 --> 00:43:37,114 IN TRIALS IN THE SAME WAY, 1141 00:43:37,181 --> 00:43:37,715 ACCOMMODATIONS TO INCLUDES 1142 00:43:37,781 --> 00:43:39,283 CHILDREN IN SCHOOL WHO OTHERWISE 1143 00:43:39,350 --> 00:43:44,888 HAVE ISSUES, IS CRITICALLY 1144 00:43:44,955 --> 00:43:45,956 IMPORTANT. 1145 00:43:46,023 --> 00:43:46,991 PARTICULARLY, ADAM, YOU PROBABLY 1146 00:43:47,057 --> 00:43:48,292 HAVE MAYBE MORE RESOURCES THAN 1147 00:43:48,359 --> 00:43:50,394 OTHERS MIGHT HAVE BUT THE NOTION 1148 00:43:50,461 --> 00:43:52,296 OF ASKING WHAT CAN WE DO TO 1149 00:43:52,363 --> 00:43:56,967 SUPPORT THOSE FAMILIES, TO HELP 1150 00:43:57,034 --> 00:43:59,136 THEM BE ABLE TO PARTICIPATE IN 1151 00:43:59,203 --> 00:44:01,438 TRIALS IS WHAT WE SHOULD BE 1152 00:44:01,505 --> 00:44:04,942 DOING RATHER THAN EXCLUDING 1153 00:44:05,009 --> 00:44:06,310 THEM, FIGURE OUT HOW TO MEET 1154 00:44:06,377 --> 00:44:10,214 THEM WHERE THEY ARE. 1155 00:44:10,280 --> 00:44:13,384 QUICKLY REGARDING RISK/BENEFIT, 1156 00:44:13,450 --> 00:44:14,818 THE ISSUE HERE, PRIMARY 1157 00:44:14,885 --> 00:44:18,422 OBLIGATION IS TO MINIMIZE RISK, 1158 00:44:18,489 --> 00:44:20,057 AVOIDING MAKING SURE THEY ARE 1159 00:44:20,124 --> 00:44:24,661 WORSE OFF AS THE 1160 00:44:24,728 --> 00:44:26,530 ROTH-CLINE-NELSON PAPER 1161 00:44:26,597 --> 00:44:27,031 DESCRIBED. 1162 00:44:27,097 --> 00:44:30,467 YOU'RE GOING TO BE -- EVERY 1163 00:44:30,534 --> 00:44:32,669 INDIVIDUAL IS RECEIVING BOTH 1164 00:44:32,736 --> 00:44:34,338 PLACEBO AS WELL AS STIMULATION. 1165 00:44:34,405 --> 00:44:36,407 I DON'T THINK IT'S A PROBLEM 1166 00:44:36,473 --> 00:44:39,009 THAT DURING THIS ONE YEAR SOME 1167 00:44:39,076 --> 00:44:41,145 MONTHS ARE MAYBE BETTER, IF THIS 1168 00:44:41,211 --> 00:44:42,379 IS EFFECTIVE, SOME MONTHS MAY BE 1169 00:44:42,446 --> 00:44:45,783 BETTER THAN OTHERS. 1170 00:44:45,849 --> 00:44:52,389 BUT IN GENERAL, PEOPLE MAY BE 1171 00:44:52,456 --> 00:44:57,094 WORSE OFF BY PARTICIPATING IN 1172 00:44:57,161 --> 00:44:58,629 THE TRIAL, THERE'S PROBABLY 1173 00:44:58,695 --> 00:44:59,296 IMPORTANT SCIENTIFIC QUESTIONS 1174 00:44:59,363 --> 00:45:01,131 THAT WILL BE ANSWERED BY 1175 00:45:01,198 --> 00:45:03,000 CONTINUING THE TRIAL FOR THE 1176 00:45:03,067 --> 00:45:05,135 FULL PERIOD OF TIME AND I THINK 1177 00:45:05,202 --> 00:45:06,637 THE OTHER POINT I WANT TO BRING 1178 00:45:06,703 --> 00:45:08,272 UP IS THAT IF THERE ARE 1179 00:45:08,338 --> 00:45:09,373 QUESTIONS ABOUT THAT, THAT'S 1180 00:45:09,440 --> 00:45:11,442 WHAT WE TYPICALLY HAVE A DATA 1181 00:45:11,508 --> 00:45:12,209 MONITORING COMMITTEE FOR, TO 1182 00:45:12,276 --> 00:45:14,044 PLAY A ROLE IN THOSE DECISIONS. 1183 00:45:14,111 --> 00:45:16,013 I THINK THERE THE ISSUE IS 1184 00:45:16,080 --> 00:45:18,882 ENSURING THAT THE DATA 1185 00:45:18,949 --> 00:45:20,851 MONITORING COMMITTEE HAVE THE 1186 00:45:20,918 --> 00:45:21,952 SOPHISTICATION AND EXPERIENCE TO 1187 00:45:22,019 --> 00:45:24,788 MAKE THOSE DECISIONS IN A 1188 00:45:24,855 --> 00:45:26,190 NUANCED WAY, SIMPLY HAVING DATA 1189 00:45:26,256 --> 00:45:27,391 MONITORING COMMITTEE DOESN'T 1190 00:45:27,458 --> 00:45:30,794 SOLVE THE PROBLEM, THEY HAVE TO 1191 00:45:30,861 --> 00:45:33,097 HAVE CAPACITY TO MAKE 1192 00:45:33,163 --> 00:45:34,731 INDEPENDENT DECISION WITH NUANCE 1193 00:45:34,798 --> 00:45:45,309 AND ADVISE SPONSORS ABOUT THE 1194 00:45:46,443 --> 00:45:47,878 WAY TO. 1195 00:45:47,945 --> 00:45:50,147 POST TRIBAL OBLIGATIONS, FIRST 1196 00:45:50,214 --> 00:45:52,349 QUESTION CAN OLDER CHILD REQUEST 1197 00:45:52,416 --> 00:45:59,790 DISCONTINUATION OF DEVICE, AND I 1198 00:45:59,857 --> 00:46:01,024 THINK RESPECT REQUIRES 1199 00:46:01,091 --> 00:46:02,192 CONSIDERATION, OLDER CHILDREN 1200 00:46:02,259 --> 00:46:03,193 MIGHT DECIDE I DON'T LIKE WHAT 1201 00:46:03,260 --> 00:46:04,495 THIS IS DOING OR WHAT IT'S DONE, 1202 00:46:04,561 --> 00:46:05,929 I WANT THIS OUT. 1203 00:46:05,996 --> 00:46:08,665 I THINK IT'S SOMETHING THAT TO 1204 00:46:08,732 --> 00:46:09,900 ME AT A CONVERSATION LEVEL OF 1205 00:46:09,967 --> 00:46:11,668 COURSE I WANT TO FIGURE OUT HOW 1206 00:46:11,735 --> 00:46:15,005 TO ACCOMMODATE IF IT WAS 1207 00:46:15,072 --> 00:46:16,507 APPROPRIATELY FEASIBLE TO DO. 1208 00:46:16,573 --> 00:46:21,578 ADAM ASKED WHAT IS THE PROBLEM 1209 00:46:21,645 --> 00:46:23,213 WITH THINGS AREN'T REVERSIBLE, 1210 00:46:23,280 --> 00:46:26,617 SO MY COMMENT MAY BE MISPLACED, 1211 00:46:26,683 --> 00:46:32,823 BUT I THINK THE FACT THAT 1212 00:46:32,890 --> 00:46:33,457 THERE'S IRREVERSIBILITY IN 1213 00:46:33,524 --> 00:46:36,793 GENERAL HAPPENS ALL THE TIME I 1214 00:46:36,860 --> 00:46:37,761 DESCRIBED MARTY McFLY FROM 1215 00:46:37,828 --> 00:46:39,396 BACK TO THE FUTURE, YOU CAN GO 1216 00:46:39,463 --> 00:46:42,032 BACK AND CHANGE YOUR PATH BUT 1217 00:46:42,099 --> 00:46:47,171 NORMALLY ALL OF US HAVE 1218 00:46:47,237 --> 00:46:48,472 IRREVERSIBLE PASTS AND ALL 1219 00:46:48,539 --> 00:46:50,007 DECISIONS MADE FOR US WE LIVE 1220 00:46:50,073 --> 00:46:51,708 WITH MOST OF OUR LIVES, TRUE FOR 1221 00:46:51,775 --> 00:46:54,745 THIS AS MUCH AS ANYTHING ELSE. 1222 00:46:54,811 --> 00:46:57,147 BUT I WANT TO BRING UP ONE FINAL 1223 00:46:57,214 --> 00:47:00,117 ISSUE THAT ADAM DID NOT RAISE 1224 00:47:00,184 --> 00:47:04,454 BUT NINA HAD MENTIONED, 1225 00:47:04,521 --> 00:47:05,255 IMPORTANT, REGARDING OBLIGATIONS 1226 00:47:05,322 --> 00:47:07,424 TO PROVIDE CLOSE CARE AFTER THE 1227 00:47:07,491 --> 00:47:07,624 STUDY. 1228 00:47:07,691 --> 00:47:11,195 I DO THINK IN THE CONTEXT OF 1229 00:47:11,261 --> 00:47:13,864 IMPLANTED DEVICES I THINK IT 1230 00:47:13,931 --> 00:47:16,066 DOES REQUIRE GREATER OBLIGATIONS 1231 00:47:16,133 --> 00:47:17,467 TO THINK THROUGH WHAT HAPPENS 1232 00:47:17,534 --> 00:47:18,702 AFTER THE PERSON IS OFF THE 1233 00:47:18,769 --> 00:47:20,437 TRIAL, WHAT OBLIGATION IS THERE 1234 00:47:20,504 --> 00:47:22,673 TO MAINTAIN THE DEVICE, TO 1235 00:47:22,739 --> 00:47:24,474 UTILIZE THE DEVICE, I THINK 1236 00:47:24,541 --> 00:47:25,676 THAT'S ONE THAT ALTHOUGH I 1237 00:47:25,742 --> 00:47:29,213 HAVEN'T THOUGHT A LOT ABOUT IT, 1238 00:47:29,279 --> 00:47:32,382 MY INCLINATION WOULD BE TO THINK 1239 00:47:32,449 --> 00:47:33,050 THOUGHTFULLY ABOUT MAKING 1240 00:47:33,116 --> 00:47:34,451 PROVISIONS FOR DOING THAT. 1241 00:47:34,518 --> 00:47:36,620 IT WOULD REQUIRE CONSIDERATION 1242 00:47:36,687 --> 00:47:37,120 OF PLANNING FOR ONGOING 1243 00:47:37,187 --> 00:47:40,023 RESOURCES BUT THIS IS A UNIQUE 1244 00:47:40,090 --> 00:47:43,627 ASPECT OF THESE TYPES OF TRIALS 1245 00:47:43,694 --> 00:47:45,028 THAT STRIKES ME AS BEING 1246 00:47:45,095 --> 00:47:45,696 IMPORTANT TO THINK ABOUT. 1247 00:47:45,762 --> 00:47:50,767 I WANT TO END BY MAKING A FEW 1248 00:47:50,834 --> 00:47:52,502 MORE COMMENTS, THIS IS THE WAY 1249 00:47:52,569 --> 00:47:58,976 ADAM DESCRIBED IT. 1250 00:47:59,042 --> 00:48:01,578 THE BEST WAY TO HANDLE ASSENT, 1251 00:48:01,645 --> 00:48:03,113 GENERAL THOUGHTS ABOUT ASSENT. 1252 00:48:03,180 --> 00:48:05,315 I THINK IT'S IMPORTANT TO THINK 1253 00:48:05,382 --> 00:48:07,484 ABOUT IN CHILDREN WE DON'T TALK 1254 00:48:07,551 --> 00:48:10,988 ABOUT CONSENT, WE TALK ABOUT ON 1255 00:48:11,054 --> 00:48:13,624 ONE HAND PARENTAL PERMISSION, 1256 00:48:13,690 --> 00:48:17,327 WHAT PARENTS DO, WHICH IS A 1257 00:48:17,394 --> 00:48:18,262 DIFFERENT ACTIVITY. 1258 00:48:18,328 --> 00:48:20,831 IT MEANS THE PARENTS HAVE TO 1259 00:48:20,897 --> 00:48:21,431 THINK ABOUT THEIR CHILDREN'S 1260 00:48:21,498 --> 00:48:23,467 INTEREST AND IT ALSO MEANS THE 1261 00:48:23,533 --> 00:48:26,203 PROVIDERS AND RESEARCHERS HAVE A 1262 00:48:26,270 --> 00:48:27,771 GREATER ROLE IN DECISION MAKING 1263 00:48:27,838 --> 00:48:30,440 THAN THEY OTHERWISE WOULD IF IT 1264 00:48:30,507 --> 00:48:31,141 WAS ADULTS. 1265 00:48:31,208 --> 00:48:34,211 THE QUESTION IS WHAT DOES ASSENT 1266 00:48:34,278 --> 00:48:34,411 MEAN? 1267 00:48:34,478 --> 00:48:38,348 AND SO ASSENT IS ACTUALLY NOT -- 1268 00:48:38,415 --> 00:48:39,783 IT'S ACTUALLY -- IT'S NOW LIKE 1269 00:48:39,850 --> 00:48:46,990 40 YEARS OLD BUT WAS A CONCEPT 1270 00:48:47,057 --> 00:48:51,295 ARGUED PROFOUNDLY BY BARTHOLOMEW 1271 00:48:51,361 --> 00:48:52,562 IN 1980s, FINALLY ADOPTING BY 1272 00:48:52,629 --> 00:48:54,331 AMERICAN ACADEMY OF PEDIATRICS 1273 00:48:54,398 --> 00:48:55,732 IN 1995. 1274 00:48:55,799 --> 00:48:58,068 BUT IT'S A CONCEPT THAT TALKS 1275 00:48:58,135 --> 00:49:02,005 ABOUT HAVING PEOPLE THINK ABOUT 1276 00:49:02,072 --> 00:49:06,143 DEVELOPMENTALLY, ABOUT WHAT IT'S 1277 00:49:06,209 --> 00:49:07,577 APPROPRIATE AWARENESS OF 1278 00:49:07,644 --> 00:49:09,446 CONDITION, ENSURING EXPECTATIONS 1279 00:49:09,513 --> 00:49:11,515 FOR TESTING TREATMENTS, EFFORTS 1280 00:49:11,581 --> 00:49:14,685 TO TRY TO UNDERSTAND, ASSESS 1281 00:49:14,751 --> 00:49:16,653 UNDERSTANDING AND VOLUNTARINESS, 1282 00:49:16,720 --> 00:49:18,422 AND WHEN APPROPRIATE SOLICITING 1283 00:49:18,488 --> 00:49:18,722 PREFERENCES. 1284 00:49:18,789 --> 00:49:21,458 I POINT I WANT TO BRING UP 1285 00:49:21,525 --> 00:49:25,429 ASSENT IS NOT SIMPLY ABOUT YES 1286 00:49:25,495 --> 00:49:27,698 OR NO BUT OTHER DIMENSIONS AS 1287 00:49:27,764 --> 00:49:28,465 WELL. 1288 00:49:28,532 --> 00:49:30,801 SO CONCEPTUALLY THE NOTION OF 1289 00:49:30,867 --> 00:49:33,070 ENGAGING EVEN YOUNG CHILDREN 5 1290 00:49:33,136 --> 00:49:35,739 YEARS OLD, 4, 3, IS INCREDIBLY 1291 00:49:35,806 --> 00:49:42,946 IMPORTANT AS YOU ENGAGE. 1292 00:49:43,013 --> 00:49:44,414 BARTHOLOMEW WAS INTERESTED IN 1293 00:49:44,481 --> 00:49:48,618 THINKING ABOUT CHILDREN WHO THEY 1294 00:49:48,685 --> 00:49:52,589 ARE AND WHAT THEY ARE AT AND 1295 00:49:52,656 --> 00:49:53,256 TREAT THEM APPROPRIATELY 1296 00:49:53,323 --> 00:49:53,623 DEVELOPMENTALLY. 1297 00:49:53,690 --> 00:49:55,992 WE CAN THINK OF A WAY TO 1298 00:49:56,059 --> 00:50:00,897 ENGAGING CHILDREN AT ALL AGES, 1299 00:50:00,964 --> 00:50:03,200 AND A PARTICULAR CHILD AND 1300 00:50:03,266 --> 00:50:07,804 CHILDREN IN GENERAL AND 1301 00:50:07,871 --> 00:50:08,538 WELL-BEING. 1302 00:50:08,605 --> 00:50:09,773 THERE'S DIFFERENT WAYS PARENTS 1303 00:50:09,840 --> 00:50:11,308 OFTEN ENGAGE OUR CHILDREN. 1304 00:50:11,375 --> 00:50:13,810 THEY MIGHT THINK ABOUT ASSENT 1305 00:50:13,877 --> 00:50:14,277 DIFFERENTLY. 1306 00:50:14,344 --> 00:50:16,246 I WANT TO GIVE EXAMPLES OUTSIDE 1307 00:50:16,313 --> 00:50:20,417 RESEARCH PARENTS HAVE TO MAKE 1308 00:50:20,484 --> 00:50:21,284 DECISIONS ABOUT SPORTS 1309 00:50:21,351 --> 00:50:22,786 ACTIVITIES, PARTICIPATION IN 1310 00:50:22,853 --> 00:50:24,354 RELIGIOUS ACTIVITIES, VISITING 1311 00:50:24,421 --> 00:50:25,655 RELATIVES, HELPING NEIGHBORS. 1312 00:50:25,722 --> 00:50:27,090 THERE'S ENGAGEMENT WITH CHILDREN 1313 00:50:27,157 --> 00:50:28,525 BY THEIR PARENTS ABOUT THESE 1314 00:50:28,592 --> 00:50:30,293 ACTIVITIES IS THE POINT. 1315 00:50:30,360 --> 00:50:33,597 THAT USUALLY RESULTS IN SOME 1316 00:50:33,663 --> 00:50:36,233 DECISION FOR THAT CHILD TO DO OR 1317 00:50:36,299 --> 00:50:37,434 NOT, THE CHILD IS INVOLVED IN 1318 00:50:37,501 --> 00:50:39,302 THE DECISION SOMETIMES. 1319 00:50:39,369 --> 00:50:41,705 THEY MAY PLAY A FAIRLY HEAVY 1320 00:50:41,772 --> 00:50:43,006 HAND, YES, WE'RE GOING SEE 1321 00:50:43,073 --> 00:50:44,641 GRANDMA TODAY EVEN THOUGH YOU 1322 00:50:44,708 --> 00:50:46,076 DON'T WANT TO OR NO, IF YOU 1323 00:50:46,143 --> 00:50:48,145 DON'T WANT TO PLAY SOCCER THAT'S 1324 00:50:48,211 --> 00:50:48,345 OKAY. 1325 00:50:48,412 --> 00:50:50,347 SO THERE'S A LOT OF WAYS THIS 1326 00:50:50,414 --> 00:50:51,748 GETS PLAYED OUT. 1327 00:50:51,815 --> 00:50:53,150 THAT'S RELEVANT AS WE THINK 1328 00:50:53,216 --> 00:50:54,384 ABOUT RESEARCH. 1329 00:50:54,451 --> 00:50:56,353 THIS IS MY LAST -- TWO MORE 1330 00:50:56,420 --> 00:50:57,621 SLIDES AND I'LL BE DONE. 1331 00:50:57,687 --> 00:51:00,624 I THINK WE SHOULD BE THINKING 1332 00:51:00,690 --> 00:51:02,492 ABOUT ASSENT FOR RESEARCH AS THE 1333 00:51:02,559 --> 00:51:11,468 WAY WE DO IT AS A OTHER LIFE 1334 00:51:11,535 --> 00:51:14,104 DECISIONS AND NOT CONSENT FOR 1335 00:51:14,171 --> 00:51:20,243 ADULTS IN CLINICAL RESEARCH. 1336 00:51:20,310 --> 00:51:22,245 SOME PARENTAL PRESSURE MAY BE 1337 00:51:22,312 --> 00:51:22,546 APPROPRIATE. 1338 00:51:22,612 --> 00:51:23,580 THERE'S A NUMBER OF SCHOLARS 1339 00:51:23,647 --> 00:51:25,449 THAT HAVE WRITTEN ABOUT THIS 1340 00:51:25,515 --> 00:51:25,916 TOPIC. 1341 00:51:25,982 --> 00:51:28,952 SOME OF THESE PEOPLE HAVE 1342 00:51:29,019 --> 00:51:31,788 IDENTIFIED THE WAY WHICH ASSENT 1343 00:51:31,855 --> 00:51:34,958 IS INCORPORATED INTO REGULATIONS 1344 00:51:35,025 --> 00:51:37,160 DOESN'T MAKE SENSE FROM A 1345 00:51:37,227 --> 00:51:37,961 CLINICAL PERSPECTIVE. 1346 00:51:38,028 --> 00:51:42,732 SO THE NOTION OF WAIVING ASSENT 1347 00:51:42,799 --> 00:51:44,468 IS NOT CONSIST WENT STANDARD FOR 1348 00:51:44,534 --> 00:51:45,702 CLINICAL CARE. 1349 00:51:45,769 --> 00:51:47,537 WE TYPICALLY GET ASSENT FOR 1350 00:51:47,604 --> 00:51:50,373 DOING THINGS CLINICALLY FOR 1351 00:51:50,440 --> 00:51:52,242 KIDS. 1352 00:51:52,309 --> 00:51:55,212 MORE IMPORTANTLY, REQUIRING 1353 00:51:55,278 --> 00:51:55,879 ASSENT FOR NON-BENEFICIAL 1354 00:51:55,946 --> 00:51:57,647 RESEARCH, I.E. THEY MUST SAY 1355 00:51:57,714 --> 00:52:00,717 YES, IS ALSO NOT CONSISTENT WITH 1356 00:52:00,784 --> 00:52:06,156 ACCEPTING DISCRETION FOR 1357 00:52:06,223 --> 00:52:06,590 INVOLVING CHILDREN. 1358 00:52:06,656 --> 00:52:09,326 THE LAST SLIDE HAS TO DO WITH 1359 00:52:09,392 --> 00:52:09,493 AGE. 1360 00:52:09,559 --> 00:52:12,395 THIS IS FROM 20 YEARS AGO, THERE 1361 00:52:12,462 --> 00:52:15,165 WAS A SERIES OF PAPERS IN THE 1362 00:52:15,232 --> 00:52:17,334 AMERICAN JOURNAL OF BIOETHICS 1363 00:52:17,400 --> 00:52:20,504 THAT TALKED ABOUT THE QUESTION 1364 00:52:20,570 --> 00:52:22,739 OF AGE, AND CONSENT AND ASSENT. 1365 00:52:22,806 --> 00:52:25,208 I WANT TO POINT OUT FROM THE 1366 00:52:25,275 --> 00:52:27,544 FOUR AUTHORS THE WAY IN WHICH 1367 00:52:27,611 --> 00:52:28,845 THEY USE DIFFERENT WORDS TO TALK 1368 00:52:28,912 --> 00:52:30,547 ABOUT HOW WE SHOULD BE THINKING 1369 00:52:30,614 --> 00:52:32,415 AND HOW WE SHOULD BE RESPECTING 1370 00:52:32,482 --> 00:52:36,253 CHILDREN, AND THEY TALK ABOUT 1371 00:52:36,319 --> 00:52:42,659 THE NOTION OF DISSENT, DISTRESS, 1372 00:52:42,726 --> 00:52:44,160 ASSENT, INVOLVEMENT. 1373 00:52:44,227 --> 00:52:46,897 THE ONE I FOUND MOST VALUABLE 1374 00:52:46,963 --> 00:52:49,633 WAS THE MANUSCRIPT BY JOFFE, 1375 00:52:49,699 --> 00:52:50,834 NOTION OF INVOLVEMENT AND 1376 00:52:50,901 --> 00:52:52,269 AGREEMENT AS BEING RELEVANT BUT 1377 00:52:52,335 --> 00:52:55,205 THE KEY HERE IS THAT EVEN IN HIS 1378 00:52:55,272 --> 00:52:58,074 NOTION OF AGREEMENT PROBABLY 1379 00:52:58,141 --> 00:52:59,476 DOESN'T BEGIN FOR AGE 11 OR 12 1380 00:52:59,543 --> 00:53:02,212 BUT PRIOR TO THAT MORE ABOUT 1381 00:53:02,279 --> 00:53:02,546 INVOLVEMENT. 1382 00:53:02,612 --> 00:53:05,715 I'M GOING TO END WITH TWO FINAL 1383 00:53:05,782 --> 00:53:06,316 CONSIDERATIONS. 1384 00:53:06,383 --> 00:53:08,218 I THINK ALL OF THESE ISSUES 1385 00:53:08,285 --> 00:53:10,186 REALLY THAT WE'RE THINKING OF AS 1386 00:53:10,253 --> 00:53:13,356 REGARDING THIS FIELD OF 1387 00:53:13,423 --> 00:53:15,759 NEUROSTIMULATION IN CHILDREN 1388 00:53:15,825 --> 00:53:16,760 REQUIRES ONGOING COMMUNITY 1389 00:53:16,826 --> 00:53:18,328 ENGAGEMENT OF PARENTS AND 1390 00:53:18,395 --> 00:53:21,131 CHILDREN THINKING ABOUT THESE 1391 00:53:21,197 --> 00:53:22,999 ISSUES AND IDEALLY EVEN DURING 1392 00:53:23,066 --> 00:53:25,535 THE TRIAL MAKING SURE WE INCLUDE 1393 00:53:25,602 --> 00:53:27,037 EVALUATION OF FAMILY EXPERIENCE 1394 00:53:27,103 --> 00:53:29,239 DURING THE TRIALS, AS WE HAVE 1395 00:53:29,306 --> 00:53:31,441 MORE SCIENTIFIC KNOWLEDGE WE CAN 1396 00:53:31,508 --> 00:53:33,410 ALSO BE ACCUMULATING ETHICAL 1397 00:53:33,476 --> 00:53:34,611 KNOWLEDGE BASED UPON 1398 00:53:34,678 --> 00:53:35,679 UNDERSTANDING WHAT'S WORKING, 1399 00:53:35,745 --> 00:53:37,113 WHAT'S NOT WORKING, AND CONTINUE 1400 00:53:37,180 --> 00:53:44,120 TO WORK TO REFINE THAT GOING 1401 00:53:44,187 --> 00:53:44,988 FORWARD. 1402 00:53:45,055 --> 00:53:48,291 I'LL STOP SHARING. 1403 00:53:48,358 --> 00:53:50,794 HOPEFULLY I'VE SUCCEEDED, NINA, 1404 00:53:50,860 --> 00:53:53,396 IN THE TASK YOU'VE ASSIGNED ME. 1405 00:53:53,463 --> 00:53:56,700 >> I'LL SPEAK FOR NINA AND SAY 1406 00:53:56,766 --> 00:53:59,669 YES. 1407 00:53:59,736 --> 00:54:01,938 THAT WAS GREAT. 1408 00:54:02,005 --> 00:54:10,313 WE HAVE TIME FOR ONE OR TWO 1409 00:54:10,380 --> 00:54:14,351 QUICK CLARIFYING QUESTIONS. 1410 00:54:14,417 --> 00:54:15,185 YES, CHRISTINE? 1411 00:54:15,251 --> 00:54:16,586 >> THANK YOU, BEN. 1412 00:54:16,653 --> 00:54:19,022 I WANTED TO ASK ABOUT YOUR 1413 00:54:19,089 --> 00:54:19,789 REFERENCE TO COMMUNITY 1414 00:54:19,856 --> 00:54:20,190 ENGAGEMENT. 1415 00:54:20,256 --> 00:54:22,959 DO YOU THINK THERE'S SOMETHING 1416 00:54:23,026 --> 00:54:23,960 DIFFERENT ABOUT NEUROSTIMULATION 1417 00:54:24,027 --> 00:54:25,695 RESEARCH THAT REQUIRES COMMUNITY 1418 00:54:25,762 --> 00:54:26,696 ENGAGEMENT, THAT'S ONE PART OF 1419 00:54:26,763 --> 00:54:27,330 THE QUESTION. 1420 00:54:27,397 --> 00:54:28,932 SECOND WHEN YOU'RE THINKING 1421 00:54:28,999 --> 00:54:32,268 ABOUT COMMUNITY ENGAGEMENT, ARE 1422 00:54:32,335 --> 00:54:35,572 YOU THINKING ABOUT FAMILIES OF 1423 00:54:35,639 --> 00:54:37,107 CHILDREN WHO MIGHT BE 1424 00:54:37,173 --> 00:54:38,341 PROSPECTIVE PARTICIPANTS OR 1425 00:54:38,408 --> 00:54:39,609 SOMETHING BROADER THAN THAT? 1426 00:54:39,676 --> 00:54:40,377 >> THANK YOU. 1427 00:54:40,443 --> 00:54:42,779 FIRST OF ALL, I THINK COMMUNITY 1428 00:54:42,846 --> 00:54:45,415 ENGAGEMENT FRANKLY IS LIKE THE 1429 00:54:45,482 --> 00:54:46,449 ESSENCE OF ETHICAL RESEARCH. 1430 00:54:46,516 --> 00:54:53,289 AND SO THIS IS NOT UNIQUE.. 1431 00:54:53,356 --> 00:54:54,958 I LEARNED THIS FROM YOU SO I'M 1432 00:54:55,025 --> 00:54:56,860 CHANNELED YOUR WISDOM. 1433 00:54:56,926 --> 00:54:57,994 THIS IS THE FUNDAMENTAL ISSUE, 1434 00:54:58,061 --> 00:54:58,862 ALL THE TIME. 1435 00:54:58,928 --> 00:55:00,730 DOESN'T SOLVE EVERYTHING BUT 1436 00:55:00,797 --> 00:55:02,232 IT'S A FOUNDATION FOR HOW WE 1437 00:55:02,298 --> 00:55:04,334 THINK ABOUT THIS. 1438 00:55:04,401 --> 00:55:07,003 I ALSO THINK THAT COMMUNITY 1439 00:55:07,070 --> 00:55:09,139 ENGAGEMENT SHOULD BE THOUGHT OF 1440 00:55:09,205 --> 00:55:10,473 BROADLY. 1441 00:55:10,540 --> 00:55:12,642 YES, OF COURSE, INCLUDES THE 1442 00:55:12,709 --> 00:55:13,510 FAMILIES, POTENTIALLY THE 1443 00:55:13,576 --> 00:55:14,711 CHILDREN DEPENDING ON 1444 00:55:14,778 --> 00:55:15,612 CIRCUMSTANCES WHO WILL BE 1445 00:55:15,679 --> 00:55:16,813 PARTICIPANTS IN THESE TRIALS. 1446 00:55:16,880 --> 00:55:19,215 WE OUGHT TO THINK BROADLY WHAT 1447 00:55:19,282 --> 00:55:22,919 THE COMMUNITY IS, COMMUNITY 1448 00:55:22,986 --> 00:55:23,687 INCLUDES RESEARCHERS, 1449 00:55:23,753 --> 00:55:25,221 COORDINATORS, COMPANIES DOING 1450 00:55:25,288 --> 00:55:25,655 THIS WORK. 1451 00:55:25,722 --> 00:55:27,557 WE'RE ALL IN THIS TOGETHER. 1452 00:55:27,624 --> 00:55:30,460 SO I THINK IT'S IMPORTANT TO 1453 00:55:30,527 --> 00:55:33,863 HEAR FROM EVERYBODY'S 1454 00:55:33,930 --> 00:55:35,932 PERSPECTIVE SO FRANKLY I'M 1455 00:55:35,999 --> 00:55:37,467 EXCITED TO HEAR BECAUSE 1456 00:55:37,534 --> 00:55:38,334 PERSPECTIVE OF SOMEBODY WHO 1457 00:55:38,401 --> 00:55:40,870 WORKS FOR A COMPANY TRYING TO 1458 00:55:40,937 --> 00:55:41,971 BRING THINGS TO MARKET, 1459 00:55:42,038 --> 00:55:43,373 CRITICALLY IMPORTANT TO THINK 1460 00:55:43,440 --> 00:55:48,645 ABOUT HOW WE DO THIS WELL. 1461 00:55:48,712 --> 00:55:49,946 >> I SEE JEN'S HAND. 1462 00:55:50,013 --> 00:55:50,947 >> THANK YOU. 1463 00:55:51,014 --> 00:55:52,582 YEAH, BEN, GREAT PRESENTATION. 1464 00:55:52,649 --> 00:55:54,217 I'M GOING TO DOVETAIL OFF THE 1465 00:55:54,284 --> 00:55:56,619 PREVIOUS QUESTION ABOUT 1466 00:55:56,686 --> 00:55:58,888 COMMUNITY ENGAGEMENT. 1467 00:55:58,955 --> 00:56:01,524 I'M WONDERING A LOT OF TIMES WE 1468 00:56:01,591 --> 00:56:02,959 THINK OF COMMUNITY ENGAGEMENT 1469 00:56:03,026 --> 00:56:04,694 ONCE THE TRIAL HAS STARTED 1470 00:56:04,761 --> 00:56:05,695 RATHER THAN COMMUNITY ENGAGEMENT 1471 00:56:05,762 --> 00:56:06,663 EVEN PRIOR. 1472 00:56:06,730 --> 00:56:09,733 AND WONDERING ABOUT YOUR 1473 00:56:09,799 --> 00:56:11,568 PERSPECTIVES OF ASSENT AND 1474 00:56:11,634 --> 00:56:15,338 CONSENT PARTICULARLY WHEN A LOT 1475 00:56:15,405 --> 00:56:17,173 OF NEUROMODULATION TRIALS ARE 1476 00:56:17,240 --> 00:56:18,308 WROUGHT WITH TECHNICAL LANGUAGE 1477 00:56:18,374 --> 00:56:21,010 THAT MAKES IT DIFFICULT TO 1478 00:56:21,077 --> 00:56:21,311 UNDERSTAND. 1479 00:56:21,377 --> 00:56:23,947 ONE OTHER QUESTION ALONG WITH 1480 00:56:24,013 --> 00:56:29,686 THAT THINKING -- HAVE YOU 1481 00:56:29,753 --> 00:56:30,787 ENCOUNTERED REAL COMMUNITY 1482 00:56:30,854 --> 00:56:32,288 ENGAGEMENT OF THE BURDEN OF 1483 00:56:32,355 --> 00:56:33,590 UNDERSTANDING OF PARENTS OR 1484 00:56:33,656 --> 00:56:36,893 CAREGIVER TO INVOLVEMENT IN 1485 00:56:36,960 --> 00:56:37,260 TRIALS? 1486 00:56:37,327 --> 00:56:40,964 >> YEAH, WELL, THANK YOU FOR 1487 00:56:41,030 --> 00:56:41,898 THOSE QUESTIONS. 1488 00:56:41,965 --> 00:56:45,401 I THINK -- I'LL TRY TO ANSWER 1489 00:56:45,468 --> 00:56:46,202 QUICKLY. 1490 00:56:46,269 --> 00:56:47,937 >> I OPENED A CAN OF WORMS, 1491 00:56:48,004 --> 00:56:49,606 DIDN'T I? 1492 00:56:49,672 --> 00:56:51,341 >> IT'S SOMETHING I COULD TALK 1493 00:56:51,407 --> 00:56:51,674 ABOUT FOREVER. 1494 00:56:51,741 --> 00:56:54,310 I WANT TO BE RESPECTFUL OF TIME. 1495 00:56:54,377 --> 00:56:55,512 COMMUNITY ENGAGEMENT CAN ALWAYS 1496 00:56:55,578 --> 00:56:57,480 OCCUR BEFORE AS WELL AS DURING. 1497 00:56:57,547 --> 00:56:59,949 WHAT IS THE BEST WAY TO DO THESE 1498 00:57:00,016 --> 00:57:03,052 TRIALS CAN BE A VALUABLE THING. 1499 00:57:03,119 --> 00:57:04,988 AND I ALSO THINK YOUR POINT 1500 00:57:05,054 --> 00:57:07,290 ABOUT THE BURDEN AND IMPACT ON 1501 00:57:07,357 --> 00:57:08,291 FAMILIES IS CRITICAL, THAT CAN 1502 00:57:08,358 --> 00:57:10,894 BE DONE AHEAD OF TIME TO LEARN 1503 00:57:10,960 --> 00:57:12,762 WHAT CAN REDUCE THAT BURDEN. 1504 00:57:12,829 --> 00:57:16,833 FOR EXAMPLE, MY OTHER AREA AS A 1505 00:57:16,900 --> 00:57:19,569 PULMONOLGIST I WORK IN CYSTIC 1506 00:57:19,636 --> 00:57:20,069 FIBROSIS. 1507 00:57:20,136 --> 00:57:22,305 THE BIGGEST BURDEN IS TRAVEL TO 1508 00:57:22,372 --> 00:57:22,539 PLACES. 1509 00:57:22,605 --> 00:57:27,544 AND SO THINKING ABOUT THIS AS 1510 00:57:27,610 --> 00:57:29,412 NOW WITH COVID, DECENTRALIZED 1511 00:57:29,479 --> 00:57:30,313 RESEARCH, HOW TO MEET PEOPLE 1512 00:57:30,380 --> 00:57:33,149 WHERE THEY LIVE RATHER THAN 1513 00:57:33,216 --> 00:57:35,118 MAKING THEM TRAVEL LONG 1514 00:57:35,185 --> 00:57:37,187 DISTANCES WHEN POSSIBLE IS 1515 00:57:37,253 --> 00:57:38,721 INCREDIBLY VALUABLE FOR PEOPLE, 1516 00:57:38,788 --> 00:57:40,256 REMOTE TECHNOLOGIES FOR RESEARCH 1517 00:57:40,323 --> 00:57:41,558 WHEN FEASIBLE IS ALSO REALLY 1518 00:57:41,624 --> 00:57:44,093 HELPFUL SO THAT NOTION OF BURDEN 1519 00:57:44,160 --> 00:57:45,929 THAT YOU'RE IDENTIFYING IS A 1520 00:57:45,995 --> 00:57:47,697 CRITICAL ISSUE AND WE HAVE TO 1521 00:57:47,764 --> 00:57:49,032 THINK CAREFUL FROM PERSPECTIVE 1522 00:57:49,098 --> 00:57:50,667 OF PARTICIPANTS WHAT WILL MAKE 1523 00:57:50,733 --> 00:58:00,176 THESE FEASIBLE, NOT WANTS 1524 00:58:00,243 --> 00:58:00,710 CONVENIENT FOR US. 1525 00:58:00,777 --> 00:58:03,813 SO MUCH OF MY WORK IS REGARDING 1526 00:58:03,880 --> 00:58:05,281 CONSENT FOR CLINICAL RESEARCH. 1527 00:58:05,348 --> 00:58:07,951 IN FACT I'M WORKING ON A PROJECT 1528 00:58:08,017 --> 00:58:09,686 WITH THE CYSTIC FIBROSIS 1529 00:58:09,752 --> 00:58:11,421 FOUNDATION ON GENE THERAPY 1530 00:58:11,487 --> 00:58:11,688 RESEARCH. 1531 00:58:11,754 --> 00:58:13,323 AGAIN, TECHNICAL AREA, THAT'S 1532 00:58:13,389 --> 00:58:14,691 WHY THEY ARE FAMILIAR. 1533 00:58:14,757 --> 00:58:16,993 WE DON'T HAVE TO MAKE IT 1534 00:58:17,060 --> 00:58:17,460 TECHNICAL. 1535 00:58:17,527 --> 00:58:21,598 OTHER AREA OF FOCUS IS GENETICS, 1536 00:58:21,664 --> 00:58:28,037 JUST COMPLETED A VERY LARGE 1537 00:58:28,104 --> 00:58:31,574 TRIAL OF SEQUENCING, 900 HEALTHY 1538 00:58:31,641 --> 00:58:32,876 ADULTS FROM DIVERSE BACKGROUNDS 1539 00:58:32,942 --> 00:58:34,644 INCLUDING PEOPLE WHO SPOKE 1540 00:58:34,711 --> 00:58:37,247 SPANISH WITH GENOME SEQUENCING. 1541 00:58:37,313 --> 00:58:39,983 YOU DON'T NEED TO KNOW ABOUT 1542 00:58:40,049 --> 00:58:46,556 BASE PAIRS TO BE INVOLVED . 1543 00:58:46,623 --> 00:58:49,859 WE CREATE EXTRA COMPLEXITY AND 1544 00:58:49,926 --> 00:58:51,294 NEED TO FIND OUT WHAT'S 1545 00:58:51,361 --> 00:58:52,195 IMPORTANT TO PARTICIPANTS. 1546 00:58:52,262 --> 00:58:54,030 THERE'S OPPORTUNITY WITH CHANGE 1547 00:58:54,097 --> 00:58:55,798 IN FEDERAL REGULATIONS THAT 1548 00:58:55,865 --> 00:58:56,766 REQUIRE KEY INFORMATION SECTION, 1549 00:58:56,833 --> 00:59:00,737 A SHORT SECTION ABOUT THE MOST 1550 00:59:00,803 --> 00:59:01,804 IMPORTANT INFORMATION TO MAKE A 1551 00:59:01,871 --> 00:59:03,106 DECISION AND FIGURE OUT HOW TO 1552 00:59:03,172 --> 00:59:05,508 MAKE A DECISION WITH IMPORTANT 1553 00:59:05,575 --> 00:59:07,377 INFORMATION, NOT THE DETAILS, 1554 00:59:07,443 --> 00:59:10,013 SIMILAR TO MAKING DECISIONS IN 1555 00:59:10,079 --> 00:59:11,214 LIFE CHOICES INCLUDING BUYING A 1556 00:59:11,281 --> 00:59:12,215 HOUSE, MOST DON'T UNDERSTAND ALL 1557 00:59:12,282 --> 00:59:13,716 THE THINGS IN THERE. 1558 00:59:13,783 --> 00:59:16,452 WE NEED TO KNOW THE IMPORTANT 1559 00:59:16,519 --> 00:59:16,886 STUFF. 1560 00:59:16,953 --> 00:59:18,121 COMMUNITY ENGAGEMENT IS THE WAY 1561 00:59:18,187 --> 00:59:20,290 WHICH YOU FIGURE OUT WHAT IS 1562 00:59:20,356 --> 00:59:23,359 IMPORTANT AND THE LAST THING IS 1563 00:59:23,426 --> 00:59:25,962 ONE THING I'M FOND IS FOR ANY 1564 00:59:26,029 --> 00:59:28,598 CLINICAL RESEARCH STUDY THROUGH 1565 00:59:28,665 --> 00:59:29,799 COMMUNITY ENGAGEMENT WITH 1566 00:59:29,866 --> 00:59:31,000 FAMILIES IS FINDING OUT THREE 1567 00:59:31,067 --> 00:59:33,736 REASONS WHY A PERSON MAY WANT TO 1568 00:59:33,803 --> 00:59:36,172 JOIN, MAY NOT WANT TO JOIN, 1569 00:59:36,239 --> 00:59:39,309 COMMUNICATING THAT TO FUTURE 1570 00:59:39,375 --> 00:59:40,843 PEOPLE HELPS THEM DECIDE WHAT 1571 00:59:40,910 --> 00:59:42,612 THEY EXPECT AND THAT'S PERHAPS 1572 00:59:42,679 --> 00:59:46,449 THE MOST EFFICIENT WAY OF SIMPLY 1573 00:59:46,516 --> 00:59:47,517 HELPING PEOPLE MAKE DECISIONS 1574 00:59:47,583 --> 00:59:48,952 ABOUT JOINING A TRIAL KNOWING 1575 00:59:49,018 --> 00:59:50,586 WHAT ARE THE MAJOR REASONS SOME 1576 00:59:50,653 --> 00:59:53,756 MAY SAY YES AND SOME SAY NO. 1577 00:59:53,823 --> 00:59:54,424 I'LL STOP THERE. 1578 00:59:54,490 --> 00:59:56,592 >> THANK YOU. 1579 00:59:56,659 --> 00:59:58,361 THAT WAS GREAT. 1580 00:59:58,428 --> 00:59:59,762 AND WE'LL COME BACK ON THE 1581 00:59:59,829 --> 01:00:00,063 DISCUSSION. 1582 01:00:00,129 --> 01:00:01,197 WE HAVE TIME AT THE END. 1583 01:00:01,264 --> 01:00:02,732 TWO MORE TALKS I WANT TO MAKE 1584 01:00:02,799 --> 01:00:06,369 SURE WE GIVE OUR OTHER SPEAKERS 1585 01:00:06,436 --> 01:00:07,136 THEIR ALLOTTED TIME. 1586 01:00:07,203 --> 01:00:16,980 I THINK WE HAVE DR. MORRELL'S 1587 01:00:17,046 --> 01:00:17,847 SLIDES READY. 1588 01:00:17,914 --> 01:00:20,350 >> GO TO THE SECOND SUPPLIED. 1589 01:00:20,416 --> 01:00:21,684 I APOLOGIZE, TEAMS HAD TAKEN 1590 01:00:21,751 --> 01:00:23,152 CONTROL OF MY COMPUTER. 1591 01:00:23,219 --> 01:00:29,325 I DO NEED TO BEGIN BY SAYING I 1592 01:00:29,392 --> 01:00:32,161 EXPLAINED MY CONFLICTS OF 1593 01:00:32,228 --> 01:00:32,795 INTEREST, PROVIDING PERSPECTIVE 1594 01:00:32,862 --> 01:00:34,263 I MIGHT OFFER AND I'VE BEEN 1595 01:00:34,330 --> 01:00:35,665 INVOLVED IN DESIGN AND CONDUCT 1596 01:00:35,732 --> 01:00:38,301 OF CLINICAL TRIALS FOR DRUG 1597 01:00:38,368 --> 01:00:39,435 RESISTANT EPILEPSY. 1598 01:00:39,502 --> 01:00:42,572 I DO WANT TO SAY, AND THIS IS 1599 01:00:42,638 --> 01:00:45,742 HISTORICAL, THAT WHEN WE BEGAN 1600 01:00:45,808 --> 01:00:46,609 THE INITIAL TRIALS TO 1601 01:00:46,676 --> 01:00:49,245 DEMONSTRATE THE SAFETY AND 1602 01:00:49,312 --> 01:00:50,780 EFFECTIVENESS OF THIS 1603 01:00:50,847 --> 01:00:51,981 NEUROMODULATION DEVICE, IN 1604 01:00:52,048 --> 01:00:54,484 DISCUSSIONS IN THE EARLY 2000s 1605 01:00:54,550 --> 01:00:56,786 WITH FDA, THE REQUEST WAS THAT 1606 01:00:56,853 --> 01:00:59,122 THESE TRIALS BE CONDUCTED ONLY 1607 01:00:59,188 --> 01:01:01,758 IN INDIVIDUALS 18 YEARS OF AGE 1608 01:01:01,824 --> 01:01:02,592 OR OLDER. 1609 01:01:02,658 --> 01:01:06,329 I THINK IT'S A TESTAMENT TO 1610 01:01:06,396 --> 01:01:07,964 EVOLUTION AND THINKING ABOUT 1611 01:01:08,031 --> 01:01:11,467 ACCESS TO TREATMENT FOR CHILDREN 1612 01:01:11,534 --> 01:01:15,838 THAT THE CURRENT TRIALS WHICH 1613 01:01:15,905 --> 01:01:16,839 ARE INVESTIGATIONAL DEVICE 1614 01:01:16,906 --> 01:01:18,574 EXEMPTION CLINICAL TRIALS IN TWO 1615 01:01:18,641 --> 01:01:22,078 TYPES OF EPILEPSY HAVE BEEN ABLE 1616 01:01:22,145 --> 01:01:24,247 TO INCLUDE PARTICIPANTS AGES 12 1617 01:01:24,313 --> 01:01:26,315 AND ABOVE. 1618 01:01:26,382 --> 01:01:27,083 NEXT SLIDE. 1619 01:01:27,150 --> 01:01:29,952 AS I THINK ABOUT THIS, THIS 1620 01:01:30,019 --> 01:01:34,957 REALLY SPEAKS TO WHAT BEN AND 1621 01:01:35,024 --> 01:01:36,959 WHAT ADAM WERE SPEAKING, WHEN 1622 01:01:37,026 --> 01:01:39,262 YOU'RE THINKING ABOUT TRIALS IN 1623 01:01:39,328 --> 01:01:40,763 PEDIATRIC THERAPIES, OF COURSE I 1624 01:01:40,830 --> 01:01:43,633 HAVE TO BE UNDERSTANDING OF THE 1625 01:01:43,699 --> 01:01:45,968 DISORDER ACROSS THE LIFESPAN, 1626 01:01:46,035 --> 01:01:47,236 WHETHER THE DISEASE IN CHILDREN 1627 01:01:47,303 --> 01:01:51,174 IS THE SAME AS THE DISEASE IN 1628 01:01:51,240 --> 01:01:54,777 ADULTS, THERE'S ALSO ELEMENT OF 1629 01:01:54,844 --> 01:01:55,178 URGENCY. 1630 01:01:55,244 --> 01:01:57,113 HOW GREAT IS THE NEED, HOW MUCH 1631 01:01:57,180 --> 01:02:03,252 TIME DO WE HAVE TO HELP THESE 1632 01:02:03,319 --> 01:02:03,519 CHILDREN. 1633 01:02:03,586 --> 01:02:04,887 WHEN OF COURSE CLINICAL TRIAL 1634 01:02:04,954 --> 01:02:09,692 DESIGN MAY BE DIFFERENT FOR 1635 01:02:09,759 --> 01:02:11,127 CHILDREN THAN ADULTS, TOTALITY 1636 01:02:11,194 --> 01:02:12,228 OF RISK, WHAT BENEFITS MEANS TO 1637 01:02:12,295 --> 01:02:13,963 A CHILD THAT MAY BE DIFFERENT 1638 01:02:14,030 --> 01:02:18,634 THAN WHAT BENEFIT IS TO AN 1639 01:02:18,701 --> 01:02:18,835 ADULT. 1640 01:02:18,901 --> 01:02:20,269 WE'RE ALSO CONSIDERING THE VALUE 1641 01:02:20,336 --> 01:02:21,838 OF CONTROLLED CLINICAL TRIALS 1642 01:02:21,904 --> 01:02:25,007 WHICH WITH BIASED IN MANY WAYS, 1643 01:02:25,074 --> 01:02:28,344 WE TALKED ABOUT WILLINGNESS OR 1644 01:02:28,411 --> 01:02:30,313 ABILITY TO ACCESS CLINICAL 1645 01:02:30,379 --> 01:02:33,216 TRIALS VERSUS THE REAL WORLD 1646 01:02:33,282 --> 01:02:37,720 EXPERIENCE THAT IS OFTEN THE 1647 01:02:37,787 --> 01:02:38,454 CASE IN PEDIATRICS SINCE 1648 01:02:38,521 --> 01:02:42,725 CLINICAL TRIALS TEND TO 1649 01:02:42,792 --> 01:02:44,360 REPRESENT CHILDREN LESS OFTEN 1650 01:02:44,427 --> 01:02:45,261 THAN ADULTS. 1651 01:02:45,328 --> 01:02:46,662 THERE'S EXECUTION. 1652 01:02:46,729 --> 01:02:49,732 SO FINANCIAL SUPPORT FOR 1653 01:02:49,799 --> 01:02:52,468 PEDIATRIC TRIALS, REALITY IS 1654 01:02:52,535 --> 01:02:54,137 PATIENTS GENERALLY ARE LESS 1655 01:02:54,203 --> 01:02:56,072 PREVALENT THAN ADULT PATIENTS. 1656 01:02:56,139 --> 01:02:59,008 FOR COMPANIES MAKING FINANCIAL 1657 01:02:59,075 --> 01:03:01,744 DECISIONS, THE MARKET SIZE FOR 1658 01:03:01,811 --> 01:03:02,612 MANY PEDIATRIC APPLICATIONS IS 1659 01:03:02,678 --> 01:03:07,650 NOT AS GREAT AS FOR ADULTS, AND 1660 01:03:07,717 --> 01:03:10,086 THEN WHY DO FAMILIES CHOOSE TO 1661 01:03:10,153 --> 01:03:11,320 PARTICIPATE IN TRIALS, 1662 01:03:11,387 --> 01:03:13,022 PARTICULARLY IF THERAPIES THAT 1663 01:03:13,089 --> 01:03:15,324 ARE APPROVED IN ADULTS THAT ARE 1664 01:03:15,391 --> 01:03:16,959 USED BY PHYSICIANS BECAUSE OF 1665 01:03:17,026 --> 01:03:22,098 THE NEED AND CAN BE ACCESSED, 1666 01:03:22,165 --> 01:03:27,470 WHY ASSUME THE ADDITIONAL BURDEN 1667 01:03:27,537 --> 01:03:29,672 OF THE ACTIVITIES INVOLVED WITH 1668 01:03:29,739 --> 01:03:31,874 CLINICAL TRIAL ALSO THE 1669 01:03:31,941 --> 01:03:32,942 POSSIBILITY A CHILD WILL AT 1670 01:03:33,009 --> 01:03:35,111 LEAST FOR SOME PERIOD OF TIME 1671 01:03:35,178 --> 01:03:38,881 NOT RECEIVE ACCESS TO THE 1672 01:03:38,948 --> 01:03:40,082 THERAPY. 1673 01:03:40,149 --> 01:03:41,617 SOMETHING I'M BEEN CONVINCED OF 1674 01:03:41,684 --> 01:03:43,886 WE CAN'T DO PEDIATRIC TRIALS, 1675 01:03:43,953 --> 01:03:45,655 CAN'T DO ADULT TRIALS EITHER BUT 1676 01:03:45,721 --> 01:03:50,359 MORE SO PEDIATRIC TRIALS WITHOUT 1677 01:03:50,426 --> 01:03:51,894 CONSIDERING THE ENTIRE 1678 01:03:51,961 --> 01:03:54,263 CRITICALITY OF PARTNERSHIP FOR 1679 01:03:54,330 --> 01:04:02,605 EVERYONE WHO TOUCHES DELIVERY OF 1680 01:04:02,672 --> 01:04:03,039 THERAPY. 1681 01:04:03,105 --> 01:04:05,341 NEXT SLIDE. 1682 01:04:05,408 --> 01:04:06,642 I STRUGGLED WITH DETERMINING 1683 01:04:06,709 --> 01:04:08,077 ENDPOINTS IN TRIALS. 1684 01:04:08,144 --> 01:04:09,045 FOR EPILEPSY, IT'S OBVIOUS WE 1685 01:04:09,111 --> 01:04:15,518 HAVE TO LOOK AT SEIZURE 1686 01:04:15,585 --> 01:04:16,886 FREQUENCY, SEVERITY OF SEIZURES, 1687 01:04:16,953 --> 01:04:17,486 BUT THERE'S INFORMATION 1688 01:04:17,553 --> 01:04:19,255 INCLUDING DATA FROM OUR OWN 1689 01:04:19,322 --> 01:04:21,090 TRIALS THOSE ONLY HAVE MODERATE 1690 01:04:21,157 --> 01:04:22,291 CORRELATIONS WITH QUALITY OF 1691 01:04:22,358 --> 01:04:26,329 LIFE AND IT IS IN FACT 1692 01:04:26,395 --> 01:04:28,965 MODERATING FACTORS YOU SEE 1693 01:04:29,031 --> 01:04:36,639 LISTED THERE THAT ARE AS 1694 01:04:36,706 --> 01:04:43,512 IMPORTANT AND MAYBE MORE 1695 01:04:43,579 --> 01:04:44,080 DIFFICULT, WHERE ENENDPOINTS 1696 01:04:44,146 --> 01:04:45,481 HAVE TO BE OBJECTIVE BECAUSE 1697 01:04:45,548 --> 01:04:47,383 THEIR LEADING TO A REGULATORY 1698 01:04:47,450 --> 01:04:47,917 DECISION. 1699 01:04:47,984 --> 01:04:48,684 NEXT SLIDE. 1700 01:04:48,751 --> 01:04:50,953 AND THEN TIME. 1701 01:04:51,020 --> 01:04:54,790 I FEEL BEING A CARE PROVIDER AS 1702 01:04:54,857 --> 01:04:56,559 WELL AS HOPEFULLY CARE DELIVERER 1703 01:04:56,626 --> 01:04:58,427 WE HAVE TO REALIZE THAT THESE 1704 01:04:58,494 --> 01:05:00,596 TAKE A LONG TIME. 1705 01:05:00,663 --> 01:05:02,798 WE HAVE TO TO BE COGNIZANT THAT 1706 01:05:02,865 --> 01:05:04,767 WE'RE DEALING WITH A CHILD WHO 1707 01:05:04,834 --> 01:05:06,535 MAY NOT HAVE YEARS. 1708 01:05:06,602 --> 01:05:07,803 NERVOUS SYSTEM MAY NOT HAVE 1709 01:05:07,870 --> 01:05:08,070 YEARS. 1710 01:05:08,137 --> 01:05:12,108 WE REALLY HAVE TO CONSIDER WHAT 1711 01:05:12,174 --> 01:05:13,876 THE COSTS OF DOING NOTHING ARE 1712 01:05:13,943 --> 01:05:15,211 BECAUSE THAT'S A VERY REAL COST 1713 01:05:15,278 --> 01:05:17,413 THAT NEEDS TO BE WEIGHTED 1714 01:05:17,480 --> 01:05:19,682 AGAINST THE RISK OF THE DEVICE. 1715 01:05:19,749 --> 01:05:22,752 HOW LONG DO THESE TRIALS NEED TO 1716 01:05:22,818 --> 01:05:24,920 BE, PARTICULARLY THOSE TRIALS 1717 01:05:24,987 --> 01:05:26,922 DURING WHICH A CHILD MIGHT NOT 1718 01:05:26,989 --> 01:05:31,060 RECEIVE ACCESS TO A POTENTIALLY 1719 01:05:31,127 --> 01:05:31,927 BENEFICIAL THERAPY? 1720 01:05:31,994 --> 01:05:34,664 AS I MENTIONED BEFORE IT CAN BE 1721 01:05:34,730 --> 01:05:36,766 VERY DIFFICULT TO RECRUIT IN 1722 01:05:36,832 --> 01:05:39,402 PEDIATRIC TRIALS WHEN THE DEVICE 1723 01:05:39,468 --> 01:05:40,703 IS ACCESSIBLE BECAUSE OF ADULT 1724 01:05:40,770 --> 01:05:44,640 APPROVALS AND WE HAVE FOUND THIS 1725 01:05:44,707 --> 01:05:45,041 OURSELVES. 1726 01:05:45,107 --> 01:05:47,376 AND SO INTEREST IN WHETHER WE 1727 01:05:47,443 --> 01:05:50,212 CAN EXTRAPOLATE DATA FROM ADULT 1728 01:05:50,279 --> 01:05:52,081 EXPERIENCES TO CHILDREN. 1729 01:05:52,148 --> 01:05:53,849 AND NEXT SLIDE. 1730 01:05:53,916 --> 01:05:57,019 AND FDA HAS BEEN LOOKING AT THIS 1731 01:05:57,086 --> 01:06:01,857 AND ACKNOWLEDGING THAT THERE IS 1732 01:06:01,924 --> 01:06:04,026 NOT ENOUGH SCIENTIFIC EVIDENCE 1733 01:06:04,093 --> 01:06:07,296 TO SUPPORT THE APPROVAL OF 1734 01:06:07,363 --> 01:06:10,166 DEVICES THAT COULD BE INDICATED 1735 01:06:10,232 --> 01:06:14,003 FOR TREATMENT OF CHILDREN. 1736 01:06:14,070 --> 01:06:15,971 AND SO, LEVERAGING CLINICAL DATA 1737 01:06:16,038 --> 01:06:18,240 ACROSS THE BOARD, WHETHER THIS 1738 01:06:18,307 --> 01:06:20,242 BE ADULTS IN CONTROL OF CLINICAL 1739 01:06:20,309 --> 01:06:24,146 TRIALS OR REAL WORLD EVIDENCE 1740 01:06:24,213 --> 01:06:27,350 MAY BE SUFFICIENT TO SUPPORT 1741 01:06:27,416 --> 01:06:28,751 APPROVAL FOR USE IN PEDIATRICS. 1742 01:06:28,818 --> 01:06:32,922 THERE'S AN EXAMPLE OF THIS, 1743 01:06:32,988 --> 01:06:36,726 RELATIVELY RECENT EXAMPLE, IN 1744 01:06:36,792 --> 01:06:39,261 2017 OF EXTRAPOLATION OF DATA 1745 01:06:39,328 --> 01:06:40,596 FROM ADULTS, FROM RELATIVELY 1746 01:06:40,663 --> 01:06:43,432 SMALL NUMBER OF CHILDREN IN A 1747 01:06:43,499 --> 01:06:51,507 REGISTRY IN JAPAN, ACTUALLY JUST 1748 01:06:51,574 --> 01:06:52,942 30, TO EXTEND APPROVAL, AGAIN AS 1749 01:06:53,008 --> 01:06:54,910 TO CHILDREN. 1750 01:06:54,977 --> 01:06:58,314 IN FACT, CDER, THE DRUG GROUP, 1751 01:06:58,381 --> 01:07:03,252 HAS COME FORWARD WITH A VERY 1752 01:07:03,319 --> 01:07:04,687 STRONG RECOMMENDATION THAT 1753 01:07:04,754 --> 01:07:06,756 EXTRAPOLATION BE APPROPRIATE FOR 1754 01:07:06,822 --> 01:07:08,290 CHILDREN EVEN LESS THAN ONE YEAR 1755 01:07:08,357 --> 01:07:10,593 OF AGE. 1756 01:07:10,659 --> 01:07:11,360 NEXT SLIDE. 1757 01:07:11,427 --> 01:07:13,896 IN TERMS OF WHO IS GOING TO DO 1758 01:07:13,963 --> 01:07:16,165 THESE TRIALS, PARTICULARLY IF 1759 01:07:16,232 --> 01:07:17,533 THE POPULATION IS RELATIVELY 1760 01:07:17,600 --> 01:07:20,903 SMALLER, AS IS THE CASE FOR MANY 1761 01:07:20,970 --> 01:07:21,437 PEDIATRIC NEUROLOGICAL 1762 01:07:21,504 --> 01:07:24,273 DISORDERS, MANY FALL INTO THE 1763 01:07:24,340 --> 01:07:28,677 RARE DISEASE CATEGORY, NIH HAS 1764 01:07:28,744 --> 01:07:31,714 REALLY BEEN VERY PROGRESSIVE AND 1765 01:07:31,781 --> 01:07:34,650 ENABLING, AND THIS IS OFTEN 1766 01:07:34,717 --> 01:07:37,353 THROUGH THE BRAIN INITIATIVE. 1767 01:07:37,420 --> 01:07:41,290 BUT ONE EXAMPLE IS A TRIAL THAT 1768 01:07:41,357 --> 01:07:44,460 NEUROPACE IS CONDUCTING IN A 1769 01:07:44,527 --> 01:07:46,462 CHILDHOOD EPILEPSY, AND THE 1770 01:07:46,529 --> 01:07:48,330 NETWORKS INVOLVED IN THIS TRIAL 1771 01:07:48,397 --> 01:07:50,299 ARE NOT WELL UNDERSTOOD. 1772 01:07:50,366 --> 01:07:55,471 AND SO THIS IS A TRIAL THAT HAS 1773 01:07:55,538 --> 01:07:56,639 CLINICAL OBJECTIVES TO 1774 01:07:56,705 --> 01:07:58,974 DEMONSTRATE SAFETY OR TO EXPLORE 1775 01:07:59,041 --> 01:08:01,210 SAFETY AND SHOW SOME EVIDENCE 1776 01:08:01,277 --> 01:08:03,546 FOR EFFICACY, BUT IT IS ALSO A 1777 01:08:03,612 --> 01:08:07,516 TRIAL OF BASIC SCIENCE TO 1778 01:08:07,583 --> 01:08:11,320 FUNDAMENTALLY UNDERSTAND. 1779 01:08:11,387 --> 01:08:12,922 AND THIS INITIATIVE HAS INVOLVED 1780 01:08:12,988 --> 01:08:14,390 MANY CLINICAL CENTERS AND 1781 01:08:14,457 --> 01:08:17,326 ENABLED A STUDY IN AN EPILEPSY 1782 01:08:17,393 --> 01:08:19,728 THAT AFFECTS LESS THAN 5,000 OR 1783 01:08:19,795 --> 01:08:21,263 6,000 CHILDREN IN THE UNITED 1784 01:08:21,330 --> 01:08:23,666 STATES, AND THAT WOULD NOT HAVE 1785 01:08:23,732 --> 01:08:27,403 HAPPENED OTHERWISE. 1786 01:08:27,470 --> 01:08:29,805 NEXT SLIDE. 1787 01:08:29,872 --> 01:08:31,574 OTHER OPPORTUNITIES ARE TO 1788 01:08:31,640 --> 01:08:34,710 COLLABORATE WITH THE CARE 1789 01:08:34,777 --> 01:08:37,246 PROVIDER GROUPS THAT ARE 1790 01:08:37,313 --> 01:08:40,416 PROFOUNDLY INTERESTED IN 1791 01:08:40,483 --> 01:08:43,586 DELIVERING CARE TO PEDIATRICS. 1792 01:08:43,652 --> 01:08:47,089 ONE EXAMPLE FROM EPILEPSY IS 1793 01:08:47,156 --> 01:08:49,058 RESEARCH CONSORTIUM, MORE THAN 1794 01:08:49,125 --> 01:08:52,361 60 CENTERS IN THE UNITED STATES, 1795 01:08:52,428 --> 01:08:54,430 AND MANY PROVIDERS WHO TREAT 1796 01:08:54,497 --> 01:08:58,067 CHILDREN WITH EPILEPSY AND ON 1797 01:08:58,134 --> 01:09:00,236 THEIR OWN THEY HAVE FORMED 11 1798 01:09:00,302 --> 01:09:03,973 YEARS AGO A VERY EFFECTIVE 1799 01:09:04,039 --> 01:09:06,242 CONSORTIUM TO PROVIDE A NETWORK 1800 01:09:06,308 --> 01:09:09,512 AND INFRASTRUCTURE IN ORDER TO 1801 01:09:09,578 --> 01:09:10,880 COLLECT DATA THAT REPRESENTS 1802 01:09:10,946 --> 01:09:13,816 WHAT IS IMPORTANT TO CHILDREN 1803 01:09:13,883 --> 01:09:15,684 AND FAMILIES DEALING WITH 1804 01:09:15,751 --> 01:09:18,521 EPILEPSY, AND TO ALSO PROVIDE 1805 01:09:18,587 --> 01:09:19,522 INFORMATION TO SUPPORT OUR 1806 01:09:19,588 --> 01:09:23,359 UNDERSTANDING OF THE SAFETY AND 1807 01:09:23,425 --> 01:09:25,427 EFFECTIVENESS OF THERAPIES, IN 1808 01:09:25,494 --> 01:09:28,063 THIS POPULATION. 1809 01:09:28,130 --> 01:09:29,298 THE NEXT SLIDE. 1810 01:09:29,365 --> 01:09:34,203 AND SO I WANT TO TALK ABOUT AND 1811 01:09:34,270 --> 01:09:36,705 CLOSE WITH WHAT HAS REALLY BEEN 1812 01:09:36,772 --> 01:09:39,775 SOBERING TO ME, AND THAT IS THAT 1813 01:09:39,842 --> 01:09:42,645 -- AND I WILL HOLD MYSELF 1814 01:09:42,711 --> 01:09:44,513 RESPONSIBLE FOR THIS -- 1815 01:09:44,580 --> 01:09:47,483 BELIEVING I UNDERSTAND WHAT 1816 01:09:47,550 --> 01:09:49,652 CHILDREN AND FAMILIES NEED 1817 01:09:49,718 --> 01:09:52,354 WITHOUT SUFFICIENTLY LISTENING 1818 01:09:52,421 --> 01:09:53,789 TO THE ADVOCATES. 1819 01:09:53,856 --> 01:09:57,192 AND I THINK THAT MANY OF THE 1820 01:09:57,259 --> 01:10:00,262 GROUPS THAT ARE REPRESENTING THE 1821 01:10:00,329 --> 01:10:03,132 INTERESTS OF PATIENTS AND FAMILY 1822 01:10:03,198 --> 01:10:07,169 MEMBERS HAVE TURNED TO THE 1823 01:10:07,236 --> 01:10:07,703 DISABILITY COMMUNITY, AND 1824 01:10:07,770 --> 01:10:09,438 PERHAPS, YOU KNOW, MOST FAMILIAR 1825 01:10:09,505 --> 01:10:13,842 TO US THROUGH THE HIV COMMUNITY 1826 01:10:13,909 --> 01:10:15,377 AND DENVER PRINCIPLES IN 1983, 1827 01:10:15,444 --> 01:10:17,680 SPEAKING TO THE NEEDS OF PEOPLE 1828 01:10:17,746 --> 01:10:20,816 WITH LIVED EXPERIENCE TO BE 1829 01:10:20,883 --> 01:10:24,119 MAKING DECISIONS ABOUT POLICY 1830 01:10:24,186 --> 01:10:26,288 AND PROGRAMMING, AND MAYBE NOT 1831 01:10:26,355 --> 01:10:28,924 SO MUCH THE PROVIDERS, MAYBE NOT 1832 01:10:28,991 --> 01:10:32,094 SO MUCH OR ENTIRELY OR PRIMARILY 1833 01:10:32,161 --> 01:10:34,496 THE REGULATORY AGENCIES THAT I 1834 01:10:34,563 --> 01:10:38,300 THINK THOSE IN THE BEST POSITION 1835 01:10:38,367 --> 01:10:40,369 TO WEIGH RISK VERSUS BENEFITS 1836 01:10:40,436 --> 01:10:43,839 AND THE EFFECT ON THE TOTALITY 1837 01:10:43,906 --> 01:10:46,475 OF THE CHILD ARE THOSE WHO ARE 1838 01:10:46,542 --> 01:10:48,777 LIVING WITH THE DISORDER. 1839 01:10:48,844 --> 01:10:53,248 AND THE NEXT SLIDE, TO PROVIDE 1840 01:10:53,315 --> 01:10:54,583 AN EXAMPLE, THE FOUNDATION WHO 1841 01:10:54,650 --> 01:10:55,884 HAS BECOME A VERY IMPORTANT 1842 01:10:55,951 --> 01:10:59,622 PARTNER TO OUR WORK IN TREATING 1843 01:10:59,688 --> 01:11:02,024 THIS RARE DISEASE, AND IT IS OF 1844 01:11:02,091 --> 01:11:03,892 INTEREST TO ME, THERE ARE MANY 1845 01:11:03,959 --> 01:11:05,628 TREATMENTS FOR THIS CONDITION 1846 01:11:05,694 --> 01:11:08,030 THAT ARE NOT APPROVED BY FDA AND 1847 01:11:08,097 --> 01:11:09,698 SO COMPANIES ARE NOT ABLE TO 1848 01:11:09,765 --> 01:11:12,735 SPEAK TO THEM. 1849 01:11:12,801 --> 01:11:19,975 NOT ABLE TO PROVIDE INFORMATION. 1850 01:11:20,042 --> 01:11:21,377 BUT THE LENNOX-GASTAULT HAS THIS 1851 01:11:21,443 --> 01:11:23,278 STATEMENT, THE DISORDER OF THE 1852 01:11:23,345 --> 01:11:26,982 DISEASE IS TOUGH, FINDING 1853 01:11:27,049 --> 01:11:28,517 INFORMATION SHOULDN'T BE. 1854 01:11:28,584 --> 01:11:31,353 THEY PROVIDE INFORMATION ABOUT 1855 01:11:31,420 --> 01:11:34,523 ALL THERAPIES, THAT COULD BE OF 1856 01:11:34,590 --> 01:11:38,894 BENEFIT TO CHILDREN WITH THE 1857 01:11:38,961 --> 01:11:42,398 DISORDER THAT OTHERWISE IS 1858 01:11:42,464 --> 01:11:50,472 THE -- THE OUTCOMES ARE ALWAYS 1859 01:11:50,539 --> 01:11:51,106 POOR. 1860 01:11:51,173 --> 01:11:52,241 THIS INFORMATION IS PROVIDED SO 1861 01:11:52,307 --> 01:11:53,575 THOSE IMPACTED BY THE DISEASE 1862 01:11:53,642 --> 01:11:54,343 CAN NAVIGATE. 1863 01:11:54,410 --> 01:11:56,078 I THINK THIS IS EXTREMELY 1864 01:11:56,145 --> 01:12:00,449 IMPORTANT IN CHOOSING TO BE 1865 01:12:00,516 --> 01:12:01,984 IGNORANT ABOUT A THERAPY FOR 1866 01:12:02,051 --> 01:12:05,487 CHILDREN IN DESPERATE NEED MAY 1867 01:12:05,554 --> 01:12:09,124 NOT BE THE CHOICE THOSE IMPACTED 1868 01:12:09,191 --> 01:12:11,393 BY THE DISEASE WOULD MAKE. 1869 01:12:11,460 --> 01:12:16,532 AND I BELIEVE THAT I HAVE MY 1870 01:12:16,598 --> 01:12:19,935 OBLIGATORY LAST SLIDE, WHICH IS 1871 01:12:20,002 --> 01:12:22,104 THE HUB AND SPOKE SHOWING THE 1872 01:12:22,171 --> 01:12:28,010 HUSBAND IS THE CHILD BUT JUST 1873 01:12:28,077 --> 01:12:29,445 REMINDING US OF ALL THE PLAYERS, 1874 01:12:29,511 --> 01:12:31,480 ALL OF THOSE WHO ARE NECESSARY 1875 01:12:31,547 --> 01:12:41,323 IN ORDER TO ADVANCE THERAPIES 1876 01:12:41,390 --> 01:12:48,697 FOR CHILDREN. 1877 01:12:48,764 --> 01:12:49,131 THANKS. 1878 01:12:49,198 --> 01:12:49,932 >> THANK YOU, MARTY. 1879 01:12:49,998 --> 01:12:51,767 THAT WAS GREAT. 1880 01:12:51,834 --> 01:12:53,702 IF I CAN TAKE MY PREROGATIVE AS 1881 01:12:53,769 --> 01:12:57,039 CHAIR, I'D LIKE TO POINT OUT 1882 01:12:57,106 --> 01:12:59,541 SOME WORK BEING DONE BETWEEN 1883 01:12:59,608 --> 01:13:03,278 NIH, FDA, BARDA, AND THE 1884 01:13:03,345 --> 01:13:06,014 FOUNDATION FOR NIH, DEVELOPMENT 1885 01:13:06,081 --> 01:13:07,249 OF PEDIATRIC MEDICAL DEVICES AND 1886 01:13:07,316 --> 01:13:09,618 ABOUT SIX MONTHS AGO WE STARTED 1887 01:13:09,685 --> 01:13:12,488 THE DESIGN PHASE, TRYING TO 1888 01:13:12,554 --> 01:13:14,556 DEVELOP A BETTER ECOSYSTEM TO 1889 01:13:14,623 --> 01:13:16,525 REALLY SUPPORT MEDICAL DEVICES 1890 01:13:16,592 --> 01:13:17,726 FOR THE PEDIATRIC INDICATIONS 1891 01:13:17,793 --> 01:13:22,765 FOR ALL OF THE REASONS THAT YOU 1892 01:13:22,831 --> 01:13:25,968 MENTIONED. 1893 01:13:26,034 --> 01:13:28,137 STAY TUNED FOR MORE. 1894 01:13:28,203 --> 01:13:32,241 WE HAVE TIME FOR ONE QUESTION. 1895 01:13:32,307 --> 01:13:35,210 CLARIFYING QUESTION FOR DR. 1896 01:13:35,277 --> 01:13:41,250 MORRELL? 1897 01:13:41,316 --> 01:13:48,056 SEEING NONE, WE HAVE ONE MORE 1898 01:13:48,123 --> 01:13:48,590 SPEAKER. 1899 01:13:48,657 --> 01:13:52,661 FINAL SPEAKER OF THE SESSION IS 1900 01:13:52,728 --> 01:13:57,766 DR. JENNY BLUMENTHAL-BARBY, 1901 01:13:57,833 --> 01:14:03,939 ASSOCIATE DIRECTOR OF CENTER FOR 1902 01:14:04,006 --> 01:14:09,444 MEDICALET ETHICS AND HEALTH 1903 01:14:09,511 --> 01:14:11,713 POLICY, BAYLOR, SHE'S A 1904 01:14:11,780 --> 01:14:13,816 PHILOSOPHER, RESEARCH FOCUSES 1905 01:14:13,882 --> 01:14:14,917 PRIMARILY ON ETHICAL ISSUES 1906 01:14:14,983 --> 01:14:18,086 RAISED BY RESEARCH ON HUMAN 1907 01:14:18,153 --> 01:14:19,955 JUDGMENT AND DECISION MAKING. 1908 01:14:20,022 --> 01:14:23,058 I'LL TURN IT OVER. 1909 01:14:26,228 --> 01:14:28,564 >> THANK YOU, CHRISTINE. 1910 01:14:28,630 --> 01:14:30,465 THERESA, LET ME TRY TO SCREEN 1911 01:14:30,532 --> 01:14:32,935 SHARE. 1912 01:14:42,578 --> 01:14:43,478 SLIDES OKAY? 1913 01:14:43,545 --> 01:14:44,346 >> LOOKS GOOD. 1914 01:14:44,413 --> 01:14:44,847 >> GREAT. 1915 01:14:44,913 --> 01:14:45,981 ALL RIGHT. 1916 01:14:46,048 --> 01:14:47,649 I'M GOING TO START OUT, I 1917 01:14:47,716 --> 01:14:49,051 APPRECIATED THE FRAMING OF THE 1918 01:14:49,117 --> 01:14:50,919 TASK WHICH IS TO THINK A LITTLE 1919 01:14:50,986 --> 01:14:54,756 BIT ABOUT WHAT IS UNIQUE WITH 1920 01:14:54,823 --> 01:14:55,924 RESPECT TO PEDIATRIC 1921 01:14:55,991 --> 01:14:56,625 NEUROSTIMULATION. 1922 01:14:56,692 --> 01:15:03,065 AS OPPOSED TO SOME OF THE MORE 1923 01:15:03,131 --> 01:15:04,466 GENERAL ETHICAL ISSUES IN 1924 01:15:04,533 --> 01:15:05,801 PEDIATRICS. 1925 01:15:05,868 --> 01:15:06,869 I PUT TOGETHER THIS VENN 1926 01:15:06,935 --> 01:15:08,403 DIAGRAM, I WAS TRYING TO THINK 1927 01:15:08,470 --> 01:15:11,373 ABOUT SORT OF ALL OF THE MAJOR 1928 01:15:11,440 --> 01:15:14,443 CATEGORIES OF CONSIDERATION WITH 1929 01:15:14,509 --> 01:15:15,477 RESPECT TO PEDIATRIC 1930 01:15:15,544 --> 01:15:15,911 NEUROSTIMULATION. 1931 01:15:15,978 --> 01:15:19,448 WHAT I WOULD SAY IS THAT IT'S 1932 01:15:19,514 --> 01:15:22,317 THIS SORT OF CONGLOMERATION THAT 1933 01:15:22,384 --> 01:15:24,152 MAKES THE ETHICS OF 1934 01:15:24,219 --> 01:15:25,921 NEUROSTIMULATION UNIQUE, THAT WE 1935 01:15:25,988 --> 01:15:28,657 HAVE ALL OF THESE FACTORS 1936 01:15:28,724 --> 01:15:29,725 FEATURED TOGETHER AT ONCE. 1937 01:15:29,791 --> 01:15:34,329 AND I'M GOING TO TALK A LITTLE 1938 01:15:34,396 --> 01:15:38,400 BIT ABOUT SOME OF THESE 1939 01:15:38,467 --> 01:15:38,934 SPECIFICALLY. 1940 01:15:39,001 --> 01:15:41,904 THINKING ABOUT THIS ETHICAL 1941 01:15:41,970 --> 01:15:44,740 ISSUE OF UNCERTAINTY, SO MY TEAM 1942 01:15:44,806 --> 01:15:47,676 AS PART OF A BRAIN-FUNDED 1943 01:15:47,743 --> 01:15:49,177 PROJECT, MY STRUCTURED 1944 01:15:49,244 --> 01:15:51,513 INTERVIEWS WITH 29 CLINICIANS 1945 01:15:51,580 --> 01:15:55,651 WHO CARE FOR CHILDREN WITH 1946 01:15:55,717 --> 01:15:57,519 REFRACTORY DYSTONIA, ABOUT 1947 01:15:57,586 --> 01:15:59,354 EXPERIENCE ENGAGING IN DECISION 1948 01:15:59,421 --> 01:16:02,157 MAKING ABOUT DEEP BRAIN 1949 01:16:02,224 --> 01:16:02,457 STIMULATION. 1950 01:16:02,524 --> 01:16:04,092 72% SAID THE MOST CHALLENGING 1951 01:16:04,159 --> 01:16:06,194 ETHICAL ISSUE WAS DEALING WITH 1952 01:16:06,261 --> 01:16:08,263 UNCERTAINTY ABOUT RISKS AND 1953 01:16:08,330 --> 01:16:11,133 BENEFITS AND MANAGEMENT FOR THIS 1954 01:16:11,199 --> 01:16:11,433 POPULATION. 1955 01:16:11,500 --> 01:16:13,635 AND THEY TALKED A LOT ABOUT JUST 1956 01:16:13,702 --> 01:16:15,604 THE LACK OF RESEARCH, THE LACK 1957 01:16:15,671 --> 01:16:18,907 OF TRIALS, THE FACT THAT MANY 1958 01:16:18,974 --> 01:16:19,641 DIFFERENT INTERVENTIONS WERE 1959 01:16:19,708 --> 01:16:21,710 STILL IN THE TRIAL PHASE, THEY 1960 01:16:21,777 --> 01:16:23,378 WERE STILL HAVING RESEARCH DONE 1961 01:16:23,445 --> 01:16:27,015 AROUND THEM, THEY WEREN'T, 1962 01:16:27,082 --> 01:16:27,449 QUOTE, FDA STAMPED. 1963 01:16:27,516 --> 01:16:30,152 A LOT MIGHT HAVE HAD HD 1964 01:16:30,218 --> 01:16:31,019 EXEMPTION, THEY WEREN'T WIDELY 1965 01:16:31,086 --> 01:16:31,320 USED. 1966 01:16:31,386 --> 01:16:32,888 THEY TALKED ABOUT HOW THERE WAS 1967 01:16:32,955 --> 01:16:35,390 A LOT OF UNCERTAINTY ABOUT MORE 1968 01:16:35,457 --> 01:16:37,059 LONG-TERM EFFECTS AND OUTCOMES 1969 01:16:37,125 --> 01:16:38,894 ESPECIALLY WHEN IT CAME TO 1970 01:16:38,961 --> 01:16:39,761 CHILDREN. 1971 01:16:39,828 --> 01:16:41,363 ALSO JUST THE ASPECT OF 1972 01:16:41,430 --> 01:16:42,497 PEDIATRIC NOVELTY THAT HAS BEEN 1973 01:16:42,564 --> 01:16:43,532 MENTIONED WHEN YOU'RE DEALING 1974 01:16:43,598 --> 01:16:45,033 WITH CHILDREN YOU'RE DEALING 1975 01:16:45,100 --> 01:16:46,902 WITH DIFFERENT TARGETS FOR 1976 01:16:46,969 --> 01:16:47,970 STIMULATION. 1977 01:16:48,036 --> 01:16:51,239 AND ALL OF THIS TOGETHER JUST 1978 01:16:51,306 --> 01:16:52,341 CREATED SOME REALLY ETHICALLY 1979 01:16:52,407 --> 01:16:53,775 COMPLEX DECISION MAKING TO TRY 1980 01:16:53,842 --> 01:16:54,443 TO NAVIGATE. 1981 01:16:54,509 --> 01:16:59,348 ONE CLINICS SAID HOW DO YOU 1982 01:16:59,414 --> 01:16:59,781 PROGRAM PEOPLE? 1983 01:16:59,848 --> 01:17:01,416 EVERYBODY DOES WHAT THEY LEARNED 1984 01:17:01,483 --> 01:17:02,284 IN TRAINING. 1985 01:17:02,351 --> 01:17:04,353 KIND OF GO OFF WHAT THEY ARE 1986 01:17:04,419 --> 01:17:04,720 COMFORTABLE. 1987 01:17:04,786 --> 01:17:05,821 I DON'T THINK ANYBODY REALLY 1988 01:17:05,887 --> 01:17:11,693 KNOWS WHAT THE IDEAL WAY IS OF 1989 01:17:11,760 --> 01:17:12,094 PROGRAMMING KIDS. 1990 01:17:12,160 --> 01:17:13,228 SO, I THINK, YOU KNOW, FOR ME 1991 01:17:13,295 --> 01:17:15,630 ONE OF THE MAJOR TAKEHOMES 1992 01:17:15,697 --> 01:17:18,066 THROUGH THIS RESEARCH IS THAT WE 1993 01:17:18,133 --> 01:17:20,268 JUST NEED A LOT MORE 1994 01:17:20,335 --> 01:17:21,336 NEUROSTIMULATION TRIALS IN THE 1995 01:17:21,403 --> 01:17:22,671 CONTEXT OF PEDIATRICS. 1996 01:17:22,738 --> 01:17:24,406 WE NEED MORE DATA. 1997 01:17:24,473 --> 01:17:25,974 WE NEED MORE INCENTIVES FOR 1998 01:17:26,041 --> 01:17:28,543 THESE TRIALS TO TAKE PLACE. 1999 01:17:28,610 --> 01:17:29,878 WE NEED INFRASTRUCTURE AND 2000 01:17:29,945 --> 01:17:30,846 INCENTIVES FOR DATA SHARING AS 2001 01:17:30,912 --> 01:17:34,149 HAS BEEN MENTIONED IN SOME OF 2002 01:17:34,216 --> 01:17:36,218 THE PREVIOUS PRESENTATIONS 2003 01:17:36,284 --> 01:17:36,985 AROUND COLLABORATIVE AND 2004 01:17:37,052 --> 01:17:38,320 CONSORTIUM, THOSE ARE ALL GREAT 2005 01:17:38,387 --> 01:17:40,489 AVENUES TO TRY TO JUST CREATE 2006 01:17:40,555 --> 01:17:43,692 MORE DATA FOR PEOPLE TO MAKE 2007 01:17:43,759 --> 01:17:45,093 INFORMED DECISION MAKING AROUND. 2008 01:17:45,160 --> 01:17:47,529 I THINK WE ALSO THEN NEED TO 2009 01:17:47,596 --> 01:17:49,798 TRANSLATE THIS RESEARCH TO FAIR 2010 01:17:49,865 --> 01:17:51,800 AND BALANCED MATERIALS TO 2011 01:17:51,867 --> 01:17:53,335 SUPPORT FAMILY DECISION MAKING 2012 01:17:53,402 --> 01:17:54,536 ABOUT WHETHER TO ENGAGE IN 2013 01:17:54,603 --> 01:17:56,405 RESEARCH OR WHETHER TO ENGAGE IN 2014 01:17:56,471 --> 01:17:57,839 EVEN A CLINICAL MEDICAL DECISION 2015 01:17:57,906 --> 01:17:59,875 ABOUT WHETHER TO GET A 2016 01:17:59,941 --> 01:18:02,310 NEUROSTIMULATION DEVICE FOR 2017 01:18:02,377 --> 01:18:03,712 THEIR KIDS, AND SET 2018 01:18:03,779 --> 01:18:05,047 EXPECTATIONS. 2019 01:18:05,113 --> 01:18:07,215 ONE OF THE INTERESTING ASPECTS 2020 01:18:07,282 --> 01:18:10,652 IN OUR RESEARCH WE FOUND AROUND 2021 01:18:10,719 --> 01:18:11,953 SETTING EXPECTATIONS WITH 2022 01:18:12,020 --> 01:18:14,790 PATIENTS IS THAT WE DID THESE 2023 01:18:14,856 --> 01:18:15,791 INTERVIEWS, 44 INTERVIEWS WITH 2024 01:18:15,857 --> 01:18:18,093 CAREGIVERS WHO WERE THE PARENTS, 2025 01:18:18,160 --> 01:18:20,829 WE ALSO TALKED TO 29 CLINICIANS. 2026 01:18:20,896 --> 01:18:23,432 AND 86% OF THE CLINICIANS THAT 2027 01:18:23,498 --> 01:18:24,966 WE TALKED WITH EXPRESSED A LOT 2028 01:18:25,033 --> 01:18:27,636 OF CONCERNS TO US ABOUT PARENTS 2029 01:18:27,702 --> 01:18:30,172 AND CAREGIVERS HAVING FALSE 2030 01:18:30,238 --> 01:18:32,674 HOPES, AND 69% EVEN SAID THEY 2031 01:18:32,741 --> 01:18:35,510 INTENTIONALLY TRIED TO LOWER 2032 01:18:35,577 --> 01:18:37,813 PARENTS' EXPECTATIONS ABOUT WHAT 2033 01:18:37,879 --> 01:18:39,314 SOME OF THESE NEUROSTIMULATION 2034 01:18:39,381 --> 01:18:42,050 DEVICES COULD DO FOR A CONDITION 2035 01:18:42,117 --> 01:18:42,951 LIKE DYSTONIA. 2036 01:18:43,018 --> 01:18:45,587 WHEN WE TALKED WITH CAREGIVERS 2037 01:18:45,654 --> 01:18:48,323 WE FOUND 73% OF THEM DESCRIBED 2038 01:18:48,390 --> 01:18:50,292 THEMSELVES AS HAVING HIGH HOPES 2039 01:18:50,358 --> 01:18:51,293 BUT REASONABLE EXPECTATIONS. 2040 01:18:51,359 --> 01:18:56,565 AND I THOUGHT THAT WAS A REALLY 2041 01:18:56,631 --> 01:18:58,400 INTERESTING AND IMPORTANT 2042 01:18:58,467 --> 01:18:58,800 FINDING. 2043 01:18:58,867 --> 01:19:00,602 SO, WE HAVE ALL THIS UNCERTAINTY 2044 01:19:00,669 --> 01:19:02,137 BECAUSE WE DON'T HAVE A LOT OF 2045 01:19:02,204 --> 01:19:04,172 DATA, AND I'M SAYING THAT WE 2046 01:19:04,239 --> 01:19:06,908 NEED MORE RESEARCH IN PEDIATRIC 2047 01:19:06,975 --> 01:19:09,678 NEUROSTIMULATION, THAT LEADS TO 2048 01:19:09,744 --> 01:19:11,413 THIS ETHICAL CONCERN ABOUT 2049 01:19:11,480 --> 01:19:11,947 VULNERABILITY. 2050 01:19:12,013 --> 01:19:17,419 I WOULD SAY THAT TRUE CHILDREN 2051 01:19:17,486 --> 01:19:19,855 ARE VULNERABLE TO RESEARCH HARMS 2052 01:19:19,921 --> 01:19:23,158 AND RISKS, CANNOT PROVIDE 2053 01:19:23,225 --> 01:19:24,326 CONSENT FOR THEMSELVES, ALSO 2054 01:19:24,392 --> 01:19:25,794 BEEN ALLUDED TO AS WELL CHILDREN 2055 01:19:25,861 --> 01:19:27,629 ARE VULNERABLE BECAUSE OF A LACK 2056 01:19:27,696 --> 01:19:29,965 OF RESEARCH, THAT SHOULD NOT BE 2057 01:19:30,031 --> 01:19:30,265 LOST. 2058 01:19:30,332 --> 01:19:31,900 I THINK THERE ARE INTERESTING 2059 01:19:31,967 --> 01:19:33,401 LESSONS TO DRAW FROM OTHER 2060 01:19:33,468 --> 01:19:36,605 CONTEXTS SO THIS SLIDE IS 2061 01:19:36,671 --> 01:19:39,307 BORROWED FROM MY COLLEAGUE 2062 01:19:39,374 --> 01:19:42,911 MIRANDA WAGNER, WHO HAS DONE 2063 01:19:42,978 --> 01:19:44,546 WORK TALKING ABOUT 2064 01:19:44,613 --> 01:19:45,147 PROTECTIONISM, VULNERABILITY, 2065 01:19:45,213 --> 01:19:47,082 HARM, IN THE CONTEXT OF RESEARCH 2066 01:19:47,149 --> 01:19:48,850 WITH PREGNANT WOMEN. 2067 01:19:48,917 --> 01:19:50,685 SHE REMINDS US HOW THE 2068 01:19:50,752 --> 01:19:53,655 THALIDOMIDE TRAGEDY IN THE 2069 01:19:53,722 --> 01:19:54,856 '60s PROMPTED A PROTECTIONIST 2070 01:19:54,923 --> 01:19:57,259 ETHIC THAT LED TO THE EXCLUSION 2071 01:19:57,325 --> 01:20:00,195 OF PREGNANT PEOPLE FROM CLINICAL 2072 01:20:00,262 --> 01:20:00,662 RESEARCH STUDIES. 2073 01:20:00,729 --> 01:20:02,964 SO THE FDA EXCLUDED WOMEN WHO 2074 01:20:03,031 --> 01:20:04,399 WERE PREGNANT OR OF CHILD 2075 01:20:04,466 --> 01:20:05,600 BREAKER POTENTIAL FROM EARLY 2076 01:20:05,667 --> 01:20:07,569 PHASE STUDIES IN THE LATE 2077 01:20:07,636 --> 01:20:10,739 '70s, ANOTHER EXAMPLE IS 2078 01:20:10,805 --> 01:20:14,576 PREGNANT PERSONS DEEMED 2079 01:20:14,643 --> 01:20:16,011 VULNERABLE IN FEDERAL 2080 01:20:16,077 --> 01:20:17,312 REGULATIONS UNTIL THE MOST 2081 01:20:17,379 --> 01:20:20,615 RECENT RESCISSION TO THE COMMON 2082 01:20:20,682 --> 01:20:20,949 RULE. 2083 01:20:21,016 --> 01:20:23,351 THERE'S A LACK OF KNOWLEDGE 2084 01:20:23,418 --> 01:20:25,954 ABOUT SAFETY AND CORRECT DOSING, 2085 01:20:26,021 --> 01:20:27,455 AND THAT PUTS PREGNANT PEOPLE 2086 01:20:27,522 --> 01:20:29,691 AND FETUSES AT RISK. 2087 01:20:29,758 --> 01:20:34,296 SHE HAS DISTINGUISHED BETWEEN A 2088 01:20:34,362 --> 01:20:37,966 PROTECTIONIST ETHIC AND ETHICS 2089 01:20:38,033 --> 01:20:38,300 OF PROTECTION. 2090 01:20:38,366 --> 01:20:40,835 THEY CALLED FOR THIS 2091 01:20:40,902 --> 01:20:41,937 PROTECTIONIST ETHIC THAT 2092 01:20:42,003 --> 01:20:44,539 PRIORITIZED ELIMINATION OF 2093 01:20:44,606 --> 01:20:46,074 REPRODUCTIVE RISK BY PROTECTING 2094 01:20:46,141 --> 01:20:47,175 VULNERABLE POPULATIONS FROM 2095 01:20:47,242 --> 01:20:49,144 RESEARCH BE ELIMINATED, FOR US 2096 01:20:49,211 --> 01:20:51,446 TO MOVE TOWARDS ETHICS OF 2097 01:20:51,513 --> 01:20:52,447 PROTECTION WHICH RECOGNIZES THAT 2098 01:20:52,514 --> 01:20:55,717 HARMS THAT STEM FROM RESEARCH 2099 01:20:55,784 --> 01:20:56,718 EXCLUSION WOULD PRIORITIZE 2100 01:20:56,785 --> 01:20:57,285 PROTECTION THROUGH RESEARCH. 2101 01:20:57,352 --> 01:20:59,454 I THINK THERE ARE KIND OF 2102 01:20:59,521 --> 01:21:02,324 SIMILAR LESSONS TO DRAW HERE IN 2103 01:21:02,390 --> 01:21:04,159 THE CONTEXT OF RESEARCH AROUND 2104 01:21:04,226 --> 01:21:07,429 PEDIATRIC NEUROSTIMULATION THAT 2105 01:21:07,495 --> 01:21:12,267 WE WANT TO EMBRACE IN ETHICS OF 2106 01:21:12,334 --> 01:21:14,236 PROTECTION RATHER THAN 2107 01:21:14,302 --> 01:21:15,103 PROTECTIONIST ETHICS. 2108 01:21:15,170 --> 01:21:16,304 ANOTHER ASPECT IMPORTANT TO 2109 01:21:16,371 --> 01:21:19,708 CONSIDER IN THE CONTEXT OF 2110 01:21:19,774 --> 01:21:20,475 PEDIATRIC NEUROSTIMULATION 2111 01:21:20,542 --> 01:21:23,411 RESEARCH AND CARE IS THIS ISSUE 2112 01:21:23,478 --> 01:21:24,779 OF ACCESS AND COST AND INSURANCE 2113 01:21:24,846 --> 01:21:26,715 THAT HAS COME UP IN OTHER 2114 01:21:26,781 --> 01:21:28,016 PRESENTATIONS AS WELL. 2115 01:21:28,083 --> 01:21:32,287 THERE ARE REALLY LARGE ISSUES IN 2116 01:21:32,354 --> 01:21:34,289 PARITY AND ACCESS SO INTEREST 2117 01:21:34,356 --> 01:21:38,960 DOES NOT COVER THESE 2118 01:21:39,027 --> 01:21:40,395 INTERVENTIONS, ONLY SOME FAMILY 2119 01:21:40,462 --> 01:21:42,230 CAN AFFORD INTERVENTION OR HAVE 2120 01:21:42,297 --> 01:21:45,634 ACCESS TO PARTICIPATION IN THE 2121 01:21:45,700 --> 01:21:46,001 TRIALS. 2122 01:21:46,067 --> 01:21:48,270 SO, HERE IS AGAIN FROM OUR 2123 01:21:48,336 --> 01:21:49,904 RESEARCH ONE OF THE PERSPECTIVES 2124 01:21:49,971 --> 01:21:53,308 FROM A CLINICIAN WE INTERVIEWED 2125 01:21:53,375 --> 01:21:54,309 THAT EXPLAINED RECHARGEABLE 2126 01:21:54,376 --> 01:21:56,244 BATTERIES ARE NOT INCLUDED IN 2127 01:21:56,311 --> 01:21:56,845 THE HUMANITARIAN DEVICE 2128 01:21:56,911 --> 01:21:58,013 EXEMPTION, SO THEY ARE NOT 2129 01:21:58,079 --> 01:22:02,250 APPROVED FOR PATIENTS WHO 2130 01:22:02,317 --> 01:22:03,818 ACTUALLY NEED RECHARGEABLE 2131 01:22:03,885 --> 01:22:08,390 BATTERIES LIKE OBSESSIVE 2132 01:22:08,456 --> 01:22:10,025 COMPULSIVE DISORDER AND DYSTONIA 2133 01:22:10,091 --> 01:22:11,559 WHERE THEY NEED MORE BATTERY 2134 01:22:11,626 --> 01:22:11,993 CHANGES. 2135 01:22:12,060 --> 01:22:13,228 THOSE THAT NEED IT MOST CAN'T 2136 01:22:13,295 --> 01:22:15,630 GET IT PAID FOR. 2137 01:22:15,697 --> 01:22:16,698 SOME CLINICIANS EXPRESSED 2138 01:22:16,765 --> 01:22:18,300 UNCERTAINTY EVEN EXASPERATION 2139 01:22:18,366 --> 01:22:20,001 OVER WHO SHOULD BE EXPECTED TO 2140 01:22:20,068 --> 01:22:26,308 PAY FOR CONTINUED CARE. 2141 01:22:26,374 --> 01:22:29,711 RESPONDENT ABOVE, WHO IS 2142 01:22:29,778 --> 01:22:31,579 FIGHTING, YOU, BILLING PEOPLE, 2143 01:22:31,646 --> 01:22:32,881 PARENTS, EVERYBODY? 2144 01:22:32,947 --> 01:22:34,416 AND THEN THE FINAL ASPECT THAT 2145 01:22:34,482 --> 01:22:36,418 I'LL TOUCH ON IS SORT OF THIS 2146 01:22:36,484 --> 01:22:38,486 CHUNK OF ISSUES IN THINKING 2147 01:22:38,553 --> 01:22:40,789 ABOUT IMPACTS ON THE SELF AND 2148 01:22:40,855 --> 01:22:42,023 LONG-TERM EFFECTS BECAUSE THIS 2149 01:22:42,090 --> 01:22:44,426 IS ONE AREA WHERE 2150 01:22:44,492 --> 01:22:44,959 NEUROSTIMULATION SINCE IT 2151 01:22:45,026 --> 01:22:46,928 INVOLVES THE BRAIN DOES HAVE 2152 01:22:46,995 --> 01:22:49,097 SOMEWHAT UNIQUE ASPECTS IN TERMS 2153 01:22:49,164 --> 01:22:50,865 OF EFFECTS ON THE SELF IN A MORE 2154 01:22:50,932 --> 01:22:53,501 PERSONAL IDENTITY SORT OF WAY AS 2155 01:22:53,568 --> 01:22:57,105 OPPOSED TOKER ISSUES IN 2156 01:22:57,172 --> 01:22:57,772 PEDIATRICS. 2157 01:22:57,839 --> 01:23:00,275 SO, I THINK ONE WAY TO THINK 2158 01:23:00,342 --> 01:23:02,911 ABOUT OR FRAME THIS ISSUE IS 2159 01:23:02,977 --> 01:23:05,880 ADMIT AND ACKNOWLEDGE THAT OF 2160 01:23:05,947 --> 01:23:07,082 COURSE IT'S THAT 2161 01:23:07,148 --> 01:23:08,483 NEUROSTIMULATION CAN HAVE 2162 01:23:08,550 --> 01:23:10,151 POTENTIAL IMPACTS ON THE CHILD'S 2163 01:23:10,218 --> 01:23:11,986 SELF, AND SOME OF THOSE MIGHT BE 2164 01:23:12,053 --> 01:23:14,189 LONG TERM, AND THEY MIGHT EVEN 2165 01:23:14,255 --> 01:23:16,491 BE IRREVERSIBLE IN THE CONTEXT 2166 01:23:16,558 --> 01:23:18,560 OF A DEVELOPING BRAIN. 2167 01:23:18,626 --> 01:23:20,495 ALSO TO REMIND OURSELVES THERE 2168 01:23:20,562 --> 01:23:22,263 ARE LONG-TERM EFFECTS ON THE 2169 01:23:22,330 --> 01:23:27,202 PEDIATRIC SELF IF WE DO NOT 2170 01:23:27,268 --> 01:23:27,469 INTERVENE. 2171 01:23:27,535 --> 01:23:29,938 ONE OF THE PAPERS FROM OUR 2172 01:23:30,004 --> 01:23:32,907 PROJECT THAT IS STILL IN 2173 01:23:32,974 --> 01:23:35,076 PREPARATION KIND OF TOUCHES ON 2174 01:23:35,143 --> 01:23:38,446 THIS, AND INVOLVED TALKING TO 2175 01:23:38,513 --> 01:23:41,216 THE ACTUAL ADOLESCENT PATIENTS, 2176 01:23:41,282 --> 01:23:44,586 WITH SEVERE OCD, ABOUT 21 OF 2177 01:23:44,652 --> 01:23:46,087 THEM, ALSO THEIR PARENTS, 19 OF 2178 01:23:46,154 --> 01:23:46,588 THEM. 2179 01:23:46,654 --> 01:23:49,424 WE WERE ASKING THEM THEIR 2180 01:23:49,491 --> 01:23:50,725 OPINION ON POTENTIAL FUTURE DEEP 2181 01:23:50,792 --> 01:23:51,926 BRAIN STIMULATION FOR TREATMENT 2182 01:23:51,993 --> 01:23:53,361 FOR THEIR CONDITION, WHICH IS 2183 01:23:53,428 --> 01:23:56,097 NOT APPROVED FOR CHILDREN YET, 2184 01:23:56,164 --> 01:23:59,267 NOT EVEN UNDER HDE, THOUGH IT IS 2185 01:23:59,334 --> 01:24:00,268 FOR ADULTS UNDER HDE. 2186 01:24:00,335 --> 01:24:02,003 IT WAS INTERESTING A LITTLE OVER 2187 01:24:02,070 --> 01:24:05,607 HALF OF THEM EXPRESSED THE VIEW 2188 01:24:05,673 --> 01:24:07,575 AND TO US THE INSIGHT DEEP 2189 01:24:07,642 --> 01:24:10,211 BRAINSTEM LAYINGS WOULD HAVE A 2190 01:24:10,278 --> 01:24:11,613 POTENTIAL POSITIVE IMPACT ON 2191 01:24:11,679 --> 01:24:14,382 THEIR PERCEPTIONS OF SELF AND 2192 01:24:14,449 --> 01:24:15,350 IDENTITY. 2193 01:24:15,417 --> 01:24:17,385 IT REALLY TALKED TO US ABOUT THE 2194 01:24:17,452 --> 01:24:20,488 IMPACT OF OCD ON THE SELF, AND 2195 01:24:20,555 --> 01:24:22,791 SOME OF THOSE IMPACTS ON THEIR 2196 01:24:22,857 --> 01:24:25,326 SELF FROM THE OCD WERE LONG TERM 2197 01:24:25,393 --> 01:24:26,294 AND THEY WERE UNWANTED. 2198 01:24:26,361 --> 01:24:28,830 THEY TALKED ABOUT THE KIND OF 2199 01:24:28,897 --> 01:24:30,698 SOCIAL IMPACTS OF OCD ON THEIR 2200 01:24:30,765 --> 01:24:33,535 IDENTITY AND ON THEIR SELF THAT 2201 01:24:33,601 --> 01:24:34,469 WERE UNWANTED IMPACTS. 2202 01:24:34,536 --> 01:24:37,372 AND HERE IS A QUOTE FROM ONE OF 2203 01:24:37,439 --> 01:24:38,139 THE PARTICIPANTS. 2204 01:24:38,206 --> 01:24:39,674 WHEN THINKING ABOUT THE 2205 01:24:39,741 --> 01:24:41,342 POTENTIAL FOR DEEP BRAIN 2206 01:24:41,409 --> 01:24:42,410 STIMULATION, IF IT WOULD 2207 01:24:42,477 --> 01:24:44,379 POTENTIALLY WORK, THEY SAID I 2208 01:24:44,446 --> 01:24:45,780 WOULD JUST BE ABLE TO EXPERIENCE 2209 01:24:45,847 --> 01:24:48,416 MORE AND FIND OUT WHO I AM 2210 01:24:48,483 --> 01:24:49,717 WITHOUT THE OCD BECAUSE IT'S A 2211 01:24:49,784 --> 01:24:51,786 PRETTY BIG PART OF ME, IT TAKES 2212 01:24:51,853 --> 01:24:55,723 UP A LOT OF TIME. 2213 01:24:55,790 --> 01:24:58,593 SO, JUST TO END WITH THIS, THIS 2214 01:24:58,660 --> 01:25:00,995 FIGURE AGAIN, AND SAY I THINK 2215 01:25:01,062 --> 01:25:02,030 THAT PEDIATRIC NEUROSTIMULATION 2216 01:25:02,096 --> 01:25:04,499 BRINGS IN A LOT OF KIND OF 2217 01:25:04,566 --> 01:25:05,366 TRADITIONAL PEDIATRIC ETHICS 2218 01:25:05,433 --> 01:25:08,236 ISSUES BUT IT BRINGS IN SOME NEW 2219 01:25:08,303 --> 01:25:09,437 ONES, UNIQUE ONES, AROUND 2220 01:25:09,504 --> 01:25:10,638 IMPACTS ON THE SELF FOR EXAMPLE 2221 01:25:10,705 --> 01:25:12,807 BUT FOR ME IT REALLY IS JUST 2222 01:25:12,874 --> 01:25:14,342 THIS COMBINATION OF ALL THESE 2223 01:25:14,409 --> 01:25:15,977 THINGS TOGETHER THAT I THINK 2224 01:25:16,044 --> 01:25:19,180 MAKES THIS SPACE SORT OF 2225 01:25:19,247 --> 01:25:21,916 ETHICALLY RICH AND COMPLEX. 2226 01:25:21,983 --> 01:25:23,318 AND THERE'S ONE FINAL THING THAT 2227 01:25:23,384 --> 01:25:25,386 I WANTED TO MENTION TO THIS 2228 01:25:25,453 --> 01:25:27,222 GROUP THAT WAS A LESSON FROM THE 2229 01:25:27,288 --> 01:25:29,224 RESEARCH OUR TEAM HAS BEEN DOING 2230 01:25:29,290 --> 01:25:31,960 THAT'S NOT PART OF THAT FIGURE 2231 01:25:32,026 --> 01:25:34,262 BUT IT'S THINKING ABOUT SOME OF 2232 01:25:34,329 --> 01:25:36,798 THE REQUIREMENTS FOR SOCIAL 2233 01:25:36,865 --> 01:25:38,333 SUPPORT OR FAMILY SUPPORT FOR -- 2234 01:25:38,399 --> 01:25:40,401 THIS HAS BEEN MENTIONED BEFORE, 2235 01:25:40,468 --> 01:25:41,836 FOR ENTRY IN TRIALS, WHAT KIND 2236 01:25:41,903 --> 01:25:43,571 OF SUPPORT AND STRUCTURE IS 2237 01:25:43,638 --> 01:25:46,441 THERE BUT ALSO FOR ACTUAL 2238 01:25:46,508 --> 01:25:47,575 TREATMENT. 2239 01:25:47,642 --> 01:25:50,245 SO, WHEN WE DID THE 29 2240 01:25:50,311 --> 01:25:51,446 INTERVIEWS WITH CLINICIANS WHO 2241 01:25:51,513 --> 01:25:53,348 CARE FOR CHILDREN WITH 2242 01:25:53,414 --> 01:25:54,883 REFRACTORY DYSTONIA AND REFERRED 2243 01:25:54,949 --> 01:25:57,385 SOME TO GET DEEP BRAIN 2244 01:25:57,452 --> 01:25:59,587 STIMULATION, 97% OF THEM SAID 2245 01:25:59,654 --> 01:26:02,423 THAT THEY CONSIDER FAMILY OR 2246 01:26:02,490 --> 01:26:04,626 SOCIAL SUPPORT IN DETERMINING 2247 01:26:04,692 --> 01:26:06,160 CANDIDACY FOR DEEP BRAIN 2248 01:26:06,227 --> 01:26:06,594 STIMULATION. 2249 01:26:06,661 --> 01:26:08,329 THIS MAKES SENSE BECAUSE 2250 01:26:08,396 --> 01:26:09,430 CHILDREN ARE DEPENDENT ON THEIR 2251 01:26:09,497 --> 01:26:11,499 PARENTS OR THEIR FAMILY FOR CARE 2252 01:26:11,566 --> 01:26:12,500 AND FOR FOLLOW-UP. 2253 01:26:12,567 --> 01:26:14,569 BUT I WANT TO POINT OUT I THINK 2254 01:26:14,636 --> 01:26:16,871 THERE'S A REAL CONCERN THAT THIS 2255 01:26:16,938 --> 01:26:20,575 KIND OF IDEA OR CONCEPT CAN 2256 01:26:20,642 --> 01:26:22,544 FUNCTION TO SMUGGLE IN BIAS, 2257 01:26:22,610 --> 01:26:24,412 DISPARITIES, UNFAIR TREATMENT. 2258 01:26:24,479 --> 01:26:27,916 WE CAN TAKE LESSONS FROM TOTALLY 2259 01:26:27,982 --> 01:26:29,350 DIFFERENT CONTEXT WHICH IS ORGAN 2260 01:26:29,417 --> 01:26:29,817 TRANSPLANTATION. 2261 01:26:29,884 --> 01:26:32,287 ONE OF MY COLLEAGUES KAREN LA 2262 01:26:32,353 --> 01:26:35,323 DEAN HAS DONE WORK LOOKING AT 2263 01:26:35,390 --> 01:26:38,326 THE CRITERIA OF SOCIAL OR FAMILY 2264 01:26:38,393 --> 01:26:40,728 SUPPORT AS A CRITERION FOR ORGAN 2265 01:26:40,795 --> 01:26:42,297 TRANSPLANTATION, WHAT THAT MEANS 2266 01:26:42,363 --> 01:26:44,198 AND HOW IT IS USED. 2267 01:26:44,265 --> 01:26:48,803 AND IN HER WORK THEY DID A LARGE 2268 01:26:48,870 --> 01:26:58,212 SURVEY OF 551 PROVIDERS FROM 2269 01:26:58,279 --> 01:26:59,113 202 TRANSPLANTERS IS, 86% USED 2270 01:26:59,180 --> 01:27:01,950 LACK OF SOCIAL SUPPORT TO 2271 01:27:02,016 --> 01:27:02,850 EXCLUDE CANDIDATES FROM 2272 01:27:02,917 --> 01:27:03,217 TRANSPLANTATION. 2273 01:27:03,284 --> 01:27:05,153 BUT THEY ALSO FOUND THAT THERE 2274 01:27:05,219 --> 01:27:07,121 WAS WIDE VARIATION IN WHAT THAT 2275 01:27:07,188 --> 01:27:10,959 MEANT, LIKE THE CONCEPT OF 2276 01:27:11,025 --> 01:27:13,595 FAMILY OR SOCIAL SUPPORT MEANT, 2277 01:27:13,661 --> 01:27:15,563 HOW IT WAS ASSESSED, ALSO A 2278 01:27:15,630 --> 01:27:16,931 CONCERNING AND SIGNIFICANT LACK 2279 01:27:16,998 --> 01:27:19,200 OF EVIDENCE ON THE IMPACT OF 2280 01:27:19,267 --> 01:27:21,102 SOCIAL OR FAMILY SUPPORT ON 2281 01:27:21,169 --> 01:27:21,936 ACTUAL OUTCOMES. 2282 01:27:22,003 --> 01:27:24,872 I THINK THAT'S SOMETHING THAT WE 2283 01:27:24,939 --> 01:27:26,407 IN ETHICS AND CLINICAL COMMUNITY 2284 01:27:26,474 --> 01:27:29,243 NEED TO BE CAUTIOUS ABOUT AS WE 2285 01:27:29,310 --> 01:27:31,779 KIND OF DEVELOP CRITERIA FOR 2286 01:27:31,846 --> 01:27:32,847 PEDIATRIC NEUROSTIMULATION 2287 01:27:32,914 --> 01:27:33,948 THERAPIES AND PARTICIPATION IN 2288 01:27:34,015 --> 01:27:35,483 TRIALS, TRYING TO GET THIS 2289 01:27:35,550 --> 01:27:37,585 BALANCE OF OF COURSE ESPECIALLY 2290 01:27:37,652 --> 01:27:39,087 BECAUSE IT'S CHILDREN, YOU KNOW, 2291 01:27:39,153 --> 01:27:41,155 WE HAVE TO THINK ABOUT FAMILY 2292 01:27:41,222 --> 01:27:42,323 SUPPORT AND SOCIAL SUPPORT, BUT 2293 01:27:42,390 --> 01:27:44,559 WE ALSO WANT TO BE REALLY 2294 01:27:44,626 --> 01:27:45,760 CAREFUL TO CLARIFY WHAT WE MEAN 2295 01:27:45,827 --> 01:27:48,496 BY THAT AND WHAT EVIDENCE WE 2296 01:27:48,563 --> 01:27:50,565 HAVE AND WHETHER WE CAN MAKE 2297 01:27:50,632 --> 01:27:52,333 ACCOMMODATIONS AS SOME OF THE 2298 01:27:52,400 --> 01:27:53,635 OTHER PRESENTATIONS HAVE ALLUDED 2299 01:27:53,701 --> 01:27:53,868 TO. 2300 01:27:53,935 --> 01:27:55,703 SO THAT'S ALL I HAVE. 2301 01:27:55,770 --> 01:27:58,039 I JUST WANT TO THANK THE NIH FOR 2302 01:27:58,106 --> 01:27:59,440 THE FUNDING FOR OUR RESEARCH AND 2303 01:27:59,507 --> 01:28:01,643 OF COURSE MY TEAM MEMBERS WHO 2304 01:28:01,709 --> 01:28:03,378 HAVE HELPED CONTRIBUTE TO THIS 2305 01:28:03,444 --> 01:28:04,912 RESEARCH THAT WE'VE BEEN 2306 01:28:04,979 --> 01:28:06,147 PRESENTING SOME OF TODAY. 2307 01:28:06,214 --> 01:28:11,786 I WILL STOP SHARING MY SLIDES. 2308 01:28:14,756 --> 01:28:15,356 >> THANK YOU. 2309 01:28:15,423 --> 01:28:16,658 WE'RE DOING GREAT ON TIME. 2310 01:28:16,724 --> 01:28:18,393 I'M GOING TO OPEN UP THE FLOOR 2311 01:28:18,459 --> 01:28:23,564 TO SEE IF THERE ARE ANY 2312 01:28:23,631 --> 01:28:30,271 QUESTIONS FOR JENNY. 2313 01:28:30,338 --> 01:28:34,308 I'LL SAY THANK YOU FOR BRINGING 2314 01:28:34,375 --> 01:28:36,644 UP PREGNANT PEOPLE. 2315 01:28:36,711 --> 01:28:41,649 THAT'S A HUGE AREA OF CONCERN 2316 01:28:41,716 --> 01:28:43,851 FOR NICHD, AND SUPPORTING THE 2317 01:28:43,918 --> 01:28:45,386 INCLUSION OF PREGNANT PEOPLE IN 2318 01:28:45,453 --> 01:28:45,620 TRIALS. 2319 01:28:45,687 --> 01:28:48,022 NOW I SEE A BUNCH OF HANDS SO 2320 01:28:48,089 --> 01:28:48,923 I'LL BE QUIET. 2321 01:28:48,990 --> 01:28:51,893 THEY ARE JUMPING AROUND. 2322 01:28:51,959 --> 01:28:55,263 WE'LL START WITH SYD PLEASE. 2323 01:28:55,329 --> 01:28:55,563 >> THANKS. 2324 01:28:55,630 --> 01:28:57,899 SO, I REALLY APPRECIATE ALL OF 2325 01:28:57,965 --> 01:29:02,470 THE SPEAKERS WHO MENTIONED THIS 2326 01:29:02,537 --> 01:29:04,772 ISSUE OF ACCOMMODATIONS AND 2327 01:29:04,839 --> 01:29:07,275 INCLUSION FOR CHILDREN WHOSE 2328 01:29:07,341 --> 01:29:10,712 FAMILIES HAVE DIFFICULTY GETTING 2329 01:29:10,778 --> 01:29:13,748 THEM TO APPOINTMENTS OR VARIOUS 2330 01:29:13,815 --> 01:29:16,918 OTHER THINGS BECAUSE OBVIOUSLY 2331 01:29:16,984 --> 01:29:20,855 THESE ISSUES OF LIMITED ACCESS 2332 01:29:20,922 --> 01:29:22,256 EXTEND WELL BEYOND THE CLINICAL 2333 01:29:22,323 --> 01:29:23,157 TRIAL PHASE AND INTO WHO IS 2334 01:29:23,224 --> 01:29:29,397 GOING TO BE ABLE TO ACCESS THESE 2335 01:29:29,464 --> 01:29:30,164 THERAPIES, EXPENSIVE THERAPIES, 2336 01:29:30,231 --> 01:29:31,566 AFTERWARDS, SHOULD THESE THINGS 2337 01:29:31,632 --> 01:29:34,535 BE APPROVED AND WE NEED TO WORRY 2338 01:29:34,602 --> 01:29:35,636 OF COURSE ABOUT EXPLOITING 2339 01:29:35,703 --> 01:29:39,674 CHILDREN WHO WILL NEVER BE ABLE 2340 01:29:39,741 --> 01:29:41,209 TO AFFORD THESE THERAPIES LATER 2341 01:29:41,275 --> 01:29:42,877 ON SHOULD THEY BECOME AVAILABLE. 2342 01:29:42,944 --> 01:29:48,783 I WONDER IF ANY OF THE SPEAKERS 2343 01:29:48,850 --> 01:29:52,153 HAVE ANY SPECIFIC THOUGHTS ABOUT 2344 01:29:52,220 --> 01:29:53,387 WHAT KINDS OF ACCOMMODATIONS 2345 01:29:53,454 --> 01:29:56,991 WOULD BE USEFUL OR EFFECTIVE, 2346 01:29:57,058 --> 01:29:58,526 THERE'S OBVIOUSLY TRANSPORTATION 2347 01:29:58,593 --> 01:29:58,760 ISSUES. 2348 01:29:58,826 --> 01:30:02,029 I REVIEWED A GRANT RECENTLY THAT 2349 01:30:02,096 --> 01:30:03,765 WAS TRYING TO RECRUIT PEOPLE 2350 01:30:03,831 --> 01:30:05,767 WITH SPINAL CORD INJURIES, THEY 2351 01:30:05,833 --> 01:30:08,369 MENTIONED SPECIFICALLY THEY 2352 01:30:08,436 --> 01:30:10,304 WOULD PROVIDE TRANSPORTATION FOR 2353 01:30:10,371 --> 01:30:11,873 THESE INDIVIDUALS BECAUSE THE 2354 01:30:11,939 --> 01:30:13,541 LACK OF TRANSPORTATION AVAILABLE 2355 01:30:13,608 --> 01:30:15,476 FOR THEM MADE IT DIFFICULT FOR 2356 01:30:15,543 --> 01:30:20,414 THEM TO ACCESS THE CLINICAL 2357 01:30:20,481 --> 01:30:20,715 SITE. 2358 01:30:20,782 --> 01:30:22,683 IF YOU HAVE THOUGHTS ABOUT WHAT 2359 01:30:22,750 --> 01:30:24,152 KINDS OF ACCOMMODATIONS WOULD BE 2360 01:30:24,218 --> 01:30:27,288 HELPFUL OR USEFUL THAT WOULD 2361 01:30:27,355 --> 01:30:28,623 INCREASE THE DIVERSITY OF THE 2362 01:30:28,689 --> 01:30:33,995 PARTICIPANTS IN THESE TRIALS, 2363 01:30:34,061 --> 01:30:35,630 AND INCREASE ACCESS. 2364 01:30:35,696 --> 01:30:37,131 >> ADAM RAISED A HAND TO ANSWER. 2365 01:30:37,198 --> 01:30:38,366 >> I WOULD BE HAPPY TO TAKE A 2366 01:30:38,432 --> 01:30:41,435 FIRST STAB. 2367 01:30:41,502 --> 01:30:43,738 ONE THING THAT'S UNIQUE HERE 2368 01:30:43,805 --> 01:30:48,109 WITH A TRIAL IS DIFFERENT THAN 2369 01:30:48,176 --> 01:30:50,845 ROUTINE CLINICAL CARE. 2370 01:30:50,912 --> 01:30:53,581 SOMETIMES THERE'S FREQUENTSLY 2371 01:30:53,648 --> 01:30:55,783 ENDS POINTS THAT HAVE TO BE MET. 2372 01:30:55,850 --> 01:30:58,753 IT'S NOT UNIQUE TO DEVICES. 2373 01:30:58,820 --> 01:31:04,125 WE SEE IT WITH 2374 01:31:04,192 --> 01:31:06,194 NEURODEVELOPMENTAL OUTCOMES, ET 2375 01:31:06,260 --> 01:31:06,427 CETERA. 2376 01:31:06,494 --> 01:31:09,063 TRIAL CONTEXT IS DIFFERENT. 2377 01:31:09,130 --> 01:31:09,831 THERE'S DISCUSSION ABOUT 2378 01:31:09,897 --> 01:31:11,566 DECENTRALIZED CLINICAL TRIALS 2379 01:31:11,632 --> 01:31:12,667 PARTICULARLY WITH TECHNOLOGY IF 2380 01:31:12,733 --> 01:31:16,604 THERE ARE WAYS THAT THERE CAN BE 2381 01:31:16,671 --> 01:31:17,138 REMOTE PROGRAMMING, REMOTE 2382 01:31:17,205 --> 01:31:19,040 SENSING, SOME OF WHAT I TALKED 2383 01:31:19,106 --> 01:31:20,975 ABOUT WITH REQUIREMENT, I 2384 01:31:21,042 --> 01:31:22,643 INTENTIONALLY DID THAT, WHEN I 2385 01:31:22,710 --> 01:31:23,411 MENTIONED THIS, WHERE YOU HAVE 2386 01:31:23,477 --> 01:31:28,983 TO COME INTO THE CLINIC TO HAVE 2387 01:31:29,050 --> 01:31:29,517 THAT DONE. 2388 01:31:29,584 --> 01:31:32,053 IF THAT CAN BE DONE REMOTELY 2389 01:31:32,119 --> 01:31:32,787 THAT'S FANTASTIC. 2390 01:31:32,854 --> 01:31:34,889 ANOTHER THING TO THINK ABOUT, 2391 01:31:34,956 --> 01:31:37,491 SOME PUBLIC AID AGENCIES ALSO 2392 01:31:37,558 --> 01:31:40,161 HAVE SOCIAL WORKERS AND CASE 2393 01:31:40,228 --> 01:31:42,029 MANAGERS WHO CAN HELP WITH SOME 2394 01:31:42,096 --> 01:31:43,464 ASPECTS OF THIS. 2395 01:31:43,531 --> 01:31:46,400 THE STUDY ITSELF MAY BE ABLE TO 2396 01:31:46,467 --> 01:31:49,036 PROVIDE SOME ACCOMMODATIONS. 2397 01:31:49,103 --> 01:31:51,105 I MEAN, YOU CAN'T RUN UP 2398 01:31:51,172 --> 01:31:52,707 NECESSARILY THE BILL ON ONE OR 2399 01:31:52,773 --> 01:31:55,476 TWO PATIENTS, BUT THERE ARE SOME 2400 01:31:55,543 --> 01:31:56,143 REASONABLE ACCOMMODATIONS I 2401 01:31:56,210 --> 01:31:59,413 THINK THAT CAN BE MADE AND I 2402 01:31:59,480 --> 01:32:01,082 THINK THERE'S A POINT THAT -- I 2403 01:32:01,148 --> 01:32:04,018 CAN'T REMEMBER WHO MADE IT, 2404 01:32:04,085 --> 01:32:05,419 ABOUT FORETHOUGHT WITH ENGAGING 2405 01:32:05,486 --> 01:32:07,255 COMMUNITY MEMBERS WHEN YOU'RE AT 2406 01:32:07,321 --> 01:32:09,156 THE DESIGN STAGE OF THE TRIAL SO 2407 01:32:09,223 --> 01:32:10,691 YOU HAVE SOME OF IDEA WHO YOU 2408 01:32:10,758 --> 01:32:12,994 WANT TO INCLUDE IN YOUR TRIAL 2409 01:32:13,060 --> 01:32:15,396 AND HOW YOU CAN BEST DESIGN THIS 2410 01:32:15,463 --> 01:32:17,999 STUDY SO THAT YOU'RE NOT 2411 01:32:18,065 --> 01:32:19,333 WALKING -- SAME ARGUMENT WITH 2412 01:32:19,400 --> 01:32:20,434 STATISTICS, YOU COME IN LATER, 2413 01:32:20,501 --> 01:32:23,738 HERE ARE MY NUMBERS, FIND 2414 01:32:23,804 --> 01:32:27,108 SOMETHING FOR ME. 2415 01:32:27,174 --> 01:32:30,711 THAT SORT OF THING WE'RE MORE 2416 01:32:30,778 --> 01:32:35,383 THOUGHTFUL NOW THAN THE PAST. 2417 01:32:35,449 --> 01:32:39,020 >> ANY OTHER COMMENTS TO SYD'S 2418 01:32:39,086 --> 01:32:40,288 QUESTION ABOUT ACCOMMODATIONS? 2419 01:32:40,354 --> 01:32:41,923 WE HAVE A LOT OF HANDS. 2420 01:32:41,989 --> 01:32:43,424 >> I'LL JUST SAY WHAT I PUT IN 2421 01:32:43,491 --> 01:32:45,293 THE CHAT, SOMETHING TO THINK 2422 01:32:45,359 --> 01:32:48,229 ABOUT, TOTALLY AGREE WITH THE 2423 01:32:48,296 --> 01:32:50,531 REMOTE ASPECT, IT'S A BIG 2424 01:32:50,598 --> 01:32:52,500 COUNTRY AND PEOPLE CAN BE ALL 2425 01:32:52,566 --> 01:32:55,569 OVER, CENTERS OF FOR EXCELLENCE. 2426 01:32:55,636 --> 01:32:56,570 THE LICENSING LIMITATION IS 2427 01:32:56,637 --> 01:33:00,574 BASED ON, YOU KNOW, STATE 2428 01:33:00,641 --> 01:33:01,509 LICENSING BOARDS, A REAL LOW 2429 01:33:01,575 --> 01:33:04,245 CEILING ON HOW MUCH WE CAN DO 2430 01:33:04,312 --> 01:33:05,112 THAT PRACTICALLY. 2431 01:33:05,179 --> 01:33:09,350 A WAY TO GET AROUND THAT, THAT 2432 01:33:09,417 --> 01:33:10,651 CAN REALLY DEMOCRATIZE ACCESS, 2433 01:33:10,718 --> 01:33:12,186 WHEREVER PATIENTS ARE, TO BE 2434 01:33:12,253 --> 01:33:17,992 TREATED BY AND CARED FOR BY 2435 01:33:18,059 --> 01:33:22,163 EXPERTS WHEREVER THEY ARE. 2436 01:33:22,229 --> 01:33:22,830 >> JOHN? 2437 01:33:22,897 --> 01:33:24,131 >> HI, THANKS. 2438 01:33:24,198 --> 01:33:25,132 THANKS, JENNY, GREAT 2439 01:33:25,199 --> 01:33:25,933 PRESENTATION. 2440 01:33:26,000 --> 01:33:27,735 ONE THING IN PARTICULAR, KIND OF 2441 01:33:27,802 --> 01:33:29,437 STRUCK ME, MAYBE BECAUSE I'M A 2442 01:33:29,503 --> 01:33:31,038 BIT NAIVE IN THIS SPACE, BUT 2443 01:33:31,105 --> 01:33:32,807 IT'S YOUR COMMENT THAT GIVEN 2444 01:33:32,873 --> 01:33:35,209 THAT WE ARE -- MANY STUDIES ARE 2445 01:33:35,276 --> 01:33:36,410 BEING LIMITED BECAUSE WE DON'T 2446 01:33:36,477 --> 01:33:37,812 HAVE KNOWLEDGE OR DATA ABOUT 2447 01:33:37,878 --> 01:33:39,714 WHAT THE RISKS ARE, THE WAY TO 2448 01:33:39,780 --> 01:33:43,084 OVERCOME THAT IS TO DO MORE 2449 01:33:43,150 --> 01:33:43,851 EXPERIMENTS, MORE STUDIES, WHICH 2450 01:33:43,918 --> 01:33:46,487 AT ONCE IS FOR ME AT LEAST 2451 01:33:46,554 --> 01:33:48,189 COUNTERINTUITIVE, ALSO A BIT 2452 01:33:48,255 --> 01:33:50,091 OBVIOUS IN RETROSPECT, I THINK 2453 01:33:50,157 --> 01:33:51,525 THAT'S INTERESTING BUT ALSO 2454 01:33:51,592 --> 01:33:54,595 POSES A VERY INTERESTING AND 2455 01:33:54,662 --> 01:33:58,532 CHALLENGING CONUNDRUM FOR US TO 2456 01:33:58,599 --> 01:33:58,833 SOLVE. 2457 01:33:58,899 --> 01:34:00,267 SO, THAT REALLY STRUCK ME. 2458 01:34:00,334 --> 01:34:02,370 THE OTHER PIECE YOU AND OTHER 2459 01:34:02,436 --> 01:34:03,904 FOLKS MENTIONED IS THAT DOING 2460 01:34:03,971 --> 01:34:05,306 NOTHING IS A DECISION. 2461 01:34:05,373 --> 01:34:06,741 AND ESPECIALLY WHEN YOU'RE 2462 01:34:06,807 --> 01:34:10,111 DEALING WITH DEVELOPING BRAINS 2463 01:34:10,177 --> 01:34:11,445 IT'S PARTICULARLY -- IT'S A 2464 01:34:11,512 --> 01:34:12,413 WEIGHTY DECISION. 2465 01:34:12,480 --> 01:34:14,081 JUST THE IDEA THAT, OH, WE'RE 2466 01:34:14,148 --> 01:34:17,351 NOT GOING TO -- OF COURSE WE 2467 01:34:17,418 --> 01:34:22,490 HAVE THIS INGRAINED ETHOS OF 2468 01:34:22,556 --> 01:34:23,924 DOING NO MARM BUT DOING NOTHING 2469 01:34:23,991 --> 01:34:26,761 CAN DO HARM AS WELL, IT'S ABOUT 2470 01:34:26,827 --> 01:34:28,162 BALANCING ASSESSING RISK IN 2471 01:34:28,229 --> 01:34:28,963 VULNERABLE POPULATIONS. 2472 01:34:29,030 --> 01:34:30,698 I HOPE WE CAN HAVE FURTHER 2473 01:34:30,765 --> 01:34:36,270 DISCUSSION AROUND THESE POINTS. 2474 01:34:36,337 --> 01:34:37,371 >> I'LL BRIEFLY RESPOND. 2475 01:34:37,438 --> 01:34:38,005 I AGREE. 2476 01:34:38,072 --> 01:34:40,608 FOR ME A BIG TAKEHOME MOMENT WAS 2477 01:34:40,674 --> 01:34:44,912 INTERACTING WITH SOME OF THE 2478 01:34:44,979 --> 01:34:46,647 FOLKS WHO -- YOU KNOW, BRAIN 2479 01:34:46,714 --> 01:34:46,914 PIONEERS. 2480 01:34:46,981 --> 01:34:49,183 I WAS TRYING TO GET A MEETING 2481 01:34:49,250 --> 01:34:50,951 WITH THEM ABOUT A PROJECT, AND 2482 01:34:51,018 --> 01:34:52,253 THERE WAS A LOT OF HESITATION 2483 01:34:52,319 --> 01:34:55,856 FOR THEM TO TALK WITH ME BECAUSE 2484 01:34:55,923 --> 01:34:58,159 I WAS AN ETHICIST. 2485 01:34:58,225 --> 01:34:59,693 THE PERSON I ENDED UP MEETING 2486 01:34:59,760 --> 01:35:01,228 WITH SAID TO ME WE'RE JUST 2487 01:35:01,295 --> 01:35:04,298 REALLY TIRED OF YOU GUYS LIKE 2488 01:35:04,365 --> 01:35:06,133 SHUTTING DOWN OUR RESEARCH. 2489 01:35:06,200 --> 01:35:07,768 WE'RE RESEARCH THAT WE REALIZE 2490 01:35:07,835 --> 01:35:09,970 IT'S NEW, IT'S RISKY, NOT A LOT 2491 01:35:10,037 --> 01:35:11,906 IS KNOWN BUT LIKE PEOPLE HAVE TO 2492 01:35:11,972 --> 01:35:13,674 TAKE THOSE RISKS SO WE CAN 2493 01:35:13,741 --> 01:35:15,209 ACTUALLY GET THE DATA SO 2494 01:35:15,276 --> 01:35:16,644 IMPROVEMENTS CAN BE MADE. 2495 01:35:16,710 --> 01:35:19,480 IT WAS SUCH A POWERFUL POINT. 2496 01:35:19,547 --> 01:35:21,549 IT GETS MORE COMPLICATED IN THE 2497 01:35:21,615 --> 01:35:22,650 PEDIATRIC CONTEXT BECAUSE 2498 01:35:22,716 --> 01:35:23,784 SOMEBODY ELSE IS CONSENTING FOR 2499 01:35:23,851 --> 01:35:28,989 SOMEBODY ELSE TO TAKE ON THOSE 2500 01:35:29,056 --> 01:35:30,958 RISKS, BUT I JUST NEED TO POINT. 2501 01:35:31,025 --> 01:35:33,828 >> CAN I ADD TO THAT? 2502 01:35:33,894 --> 01:35:35,863 >> GO AHEAD, BEN. 2503 01:35:35,930 --> 01:35:37,098 >> YEAH, JOHN, YOUR QUESTION IS 2504 01:35:37,164 --> 01:35:38,499 A GOOD ONE. 2505 01:35:38,566 --> 01:35:43,003 IT ACTUALLY POINTS OUT A TENSION 2506 01:35:43,070 --> 01:35:44,438 BETWEEN WHAT JENNY AND I WERE 2507 01:35:44,505 --> 01:35:45,739 PRESENTING IN OUR TALKS ABOUT 2508 01:35:45,806 --> 01:35:48,909 NEED FOR MORE TRIALS VERSUS -- 2509 01:35:48,976 --> 01:35:51,112 WHEN YOU WERE TALKING ABOUT THE 2510 01:35:51,178 --> 01:35:52,079 ISSUE OF EXTRAPOLATION I WORRY 2511 01:35:52,146 --> 01:35:52,947 ABOUT THAT. 2512 01:35:53,013 --> 01:35:55,049 IN OTHER WORDS, TO ME, THERE'S A 2513 01:35:55,116 --> 01:35:57,017 LOT OF RISK FROM THE 2514 01:35:57,084 --> 01:35:58,319 EXTRAPOLATION AND APPROVAL 2515 01:35:58,385 --> 01:35:59,753 WITHOUT THOSE STUDIES. 2516 01:35:59,820 --> 01:36:01,489 I THINK WHAT'S REALLY CRITICAL 2517 01:36:01,555 --> 01:36:03,557 IS FIGURING OUT HOW TO DO MORE 2518 01:36:03,624 --> 01:36:04,992 STUDIES IN PEDIATRICS BECAUSE 2519 01:36:05,059 --> 01:36:06,427 ALTERNATIVE IS NOT TO DO NOTHING 2520 01:36:06,494 --> 01:36:08,162 BUT DO IT WITHOUT STUDIES IS 2521 01:36:08,229 --> 01:36:09,697 EXTRAPOLATE AND WE THINK WE'VE 2522 01:36:09,763 --> 01:36:11,465 GOT IT RIGHT AND AT LEAST THE 2523 01:36:11,532 --> 01:36:12,967 HISTORY OF PEDIATRICS WE ALWAYS 2524 01:36:13,033 --> 01:36:14,301 GET IT WRONG. 2525 01:36:14,368 --> 01:36:15,603 AND WE ARE CONSTANTLY FIGURING 2526 01:36:15,669 --> 01:36:17,671 OUT ALL THE THINGS WE'VE MESSED 2527 01:36:17,738 --> 01:36:19,540 UP IN TERMS OF THINGS WE THOUGHT 2528 01:36:19,607 --> 01:36:20,774 WORKED UNTIL WE FIGURED OUT THEY 2529 01:36:20,841 --> 01:36:21,308 DIDN'T WORK. 2530 01:36:21,375 --> 01:36:24,812 I WORRY ABOUT THAT ALL THE TIME. 2531 01:36:24,879 --> 01:36:26,313 TO ME, TRIALS ARE CRITICAL 2532 01:36:26,380 --> 01:36:28,048 BECAUSE WE OFTEN DON'T KNOW OR 2533 01:36:28,115 --> 01:36:30,584 DON'T DO THE RIGHT TRIALS. 2534 01:36:30,651 --> 01:36:33,354 >> SO, BEN, I AGREE, BUT I THINK 2535 01:36:33,420 --> 01:36:36,190 THAT IN MANY INSTANCES WE CAN 2536 01:36:36,257 --> 01:36:38,592 IDENTIFY THE DISORDER AS 2537 01:36:38,659 --> 01:36:40,461 BEHAVING SIMILARLY IN CHILDREN 2538 01:36:40,528 --> 01:36:44,732 AS IN ADULTS, SO THAT'S ONE 2539 01:36:44,798 --> 01:36:51,372 DISTINCTION. 2540 01:36:51,438 --> 01:36:52,173 IF YOU FEEL UNDERLYING 2541 01:36:52,239 --> 01:36:54,141 MECHANISMS ARE THE SAME, THAT'S 2542 01:36:54,208 --> 01:36:54,909 ONE THING. 2543 01:36:54,975 --> 01:36:59,280 I'M SPEAKING FOR MYSELF RIGHT 2544 01:36:59,346 --> 01:37:03,651 NOW, THE CRITICALITY OF REAL 2545 01:37:03,717 --> 01:37:03,984 WORLD DATA. 2546 01:37:04,051 --> 01:37:05,853 AND BECAUSE YOU CAN'T SAY TO A 2547 01:37:05,920 --> 01:37:08,155 CHILD OR PARENT, YOU CAN'T HAVE 2548 01:37:08,222 --> 01:37:10,891 ACCESS TO A TREATMENT THAT HAS 2549 01:37:10,958 --> 01:37:12,593 BEEN EFFECTIVE IN THOUSANDS AND 2550 01:37:12,660 --> 01:37:13,527 THOUSANDS OF ADULTS, WE'RE NOT 2551 01:37:13,594 --> 01:37:16,463 GOING TO LET YOU HAVE ACCESS 2552 01:37:16,530 --> 01:37:18,365 BECAUSE THERE'S NOT BEEN THE 2553 01:37:18,432 --> 01:37:22,803 TIME OR THE WILL OR THE APPROVAL 2554 01:37:22,870 --> 01:37:24,138 TO DO THESE CONTROLLED TRIALS. 2555 01:37:24,205 --> 01:37:26,674 WHAT YOU CAN SAY IS YOU CAN HAVE 2556 01:37:26,740 --> 01:37:29,410 ACCESS TO THIS TREATMENT BUT WE 2557 01:37:29,476 --> 01:37:31,579 CANNOT USE YOUR EXPERIENCE 2558 01:37:31,645 --> 01:37:34,215 BECAUSE THE EXPERIENCE OF EVERY 2559 01:37:34,281 --> 01:37:38,819 CHILD RECEIVING THIS NEW THERAPY 2560 01:37:38,886 --> 01:37:39,787 IS IMPORTANT. 2561 01:37:39,853 --> 01:37:47,461 MANY ADVERSE EFFECTS OF THESE 2562 01:37:47,528 --> 01:37:48,796 THERAPIES YOU CAN'T SEE, TOO 2563 01:37:48,862 --> 01:37:50,864 SHORT, AND WE'RE DEALING WITH 2564 01:37:50,931 --> 01:37:52,399 POPULATION OF PARENTS WHO ARE 2565 01:37:52,466 --> 01:37:54,935 MOTIVATED, ABLE TO TRAVEL, WHO 2566 01:37:55,002 --> 01:37:56,570 TRUST THE RESEARCH SYSTEM, YOU 2567 01:37:56,637 --> 01:37:58,305 KNOW, AS WE KNOW THERE ARE 2568 01:37:58,372 --> 01:37:59,106 CULTURES WITHIN THE UNITED 2569 01:37:59,173 --> 01:38:01,375 STATES THAT ARE MUCH LESS LIKELY 2570 01:38:01,442 --> 01:38:07,281 TO FEEL COMFORTABLE ENGAGING IN 2571 01:38:07,348 --> 01:38:07,548 RESEARCH. 2572 01:38:07,615 --> 01:38:12,453 SO, I DO BELIEVE THAT WE HAVE 2573 01:38:12,519 --> 01:38:16,490 PUT MORE WEIGHT ON CLINICAL 2574 01:38:16,557 --> 01:38:20,227 TRIALS AND LESS VALUED THE REAL 2575 01:38:20,294 --> 01:38:22,296 WORLD DATA NOT SUFFICIENTLY. 2576 01:38:22,363 --> 01:38:23,497 >> CAN I JUMP IN? 2577 01:38:23,564 --> 01:38:26,000 MY QUESTION WAS ON THAT. 2578 01:38:26,066 --> 01:38:27,534 THANKS, MARTHA. 2579 01:38:27,601 --> 01:38:30,337 I WAS WONDERING ARE WE THINKING 2580 01:38:30,404 --> 01:38:32,239 ABOUT RESEARCH TOO NARROWLY AS 2581 01:38:32,306 --> 01:38:33,807 RANDOMIZED CLINICAL TRIALS, AND 2582 01:38:33,874 --> 01:38:35,175 THEN IT BEGS THE QUESTION SO 2583 01:38:35,242 --> 01:38:37,911 WE'VE DEALT WITH THIS IN OTHER 2584 01:38:37,978 --> 01:38:38,112 AREAS. 2585 01:38:38,178 --> 01:38:40,981 WE HAVE BEEN WORKING ON A PAPER 2586 01:38:41,048 --> 01:38:42,750 AROUND LIKE COMMERCIAL SPACE, 2587 01:38:42,816 --> 01:38:44,585 TOTALLY DIFFERENT, IT'S THIS 2588 01:38:44,652 --> 01:38:46,687 IDEA YOU'RE GETTING ACCESS TO 2589 01:38:46,754 --> 01:38:49,623 SOMETHING THAT VERY FEW PEOPLE 2590 01:38:49,690 --> 01:38:52,493 GET ACCESS TO, IS THERE SOCIAL 2591 01:38:52,559 --> 01:38:53,794 OBLIGATION TO CONTRIBUTE DATA 2592 01:38:53,861 --> 01:38:54,528 AND PARTICIPATE IN RESEARCH 2593 01:38:54,595 --> 01:38:56,997 RELATED TO THAT. 2594 01:38:57,064 --> 01:38:58,065 IF YOU'RE PRESCRIBING OFF-LABEL 2595 01:38:58,132 --> 01:39:04,171 USE TO CHILDREN OF THESE SORT OF 2596 01:39:04,238 --> 01:39:06,607 NOT EASILY ACCESSIBLE VERY 2597 01:39:06,674 --> 01:39:09,443 EXPENSIVE DEVICES, DO WE HAVE -- 2598 01:39:09,510 --> 01:39:13,047 IS THERE SOME SORT OF BIGGER, 2599 01:39:13,113 --> 01:39:14,615 BROADER SOCIAL OBLIGATION TO 2600 01:39:14,682 --> 01:39:15,916 PARTICIPATE IN REAL WORLD TRIALS 2601 01:39:15,983 --> 01:39:18,652 OR OTHER TYPES OF STUDIES, DATA 2602 01:39:18,719 --> 01:39:19,386 COLLECTION, DATA SHARING, THAN 2603 01:39:19,453 --> 01:39:21,388 YOU MIGHT HAVE IN A TYPICAL 2604 01:39:21,455 --> 01:39:22,489 RESEARCH SETTING AND HOW DO WE 2605 01:39:22,556 --> 01:39:24,258 THINK ABOUT ETHICS OF THAT? 2606 01:39:24,325 --> 01:39:25,559 I JUST WANTED TO THANK YOU FOR 2607 01:39:25,626 --> 01:39:28,395 SAYING THAT BECAUSE I TOTALLY 2608 01:39:28,462 --> 01:39:29,029 AGREE. 2609 01:39:29,096 --> 01:39:30,898 >> IT GETS TO THE COMMENTS, THE 2610 01:39:30,964 --> 01:39:32,433 OTHER COMMENTS, WE HAVE TO DO 2611 01:39:32,499 --> 01:39:39,006 EVERYTHING WE CAN TO LESSEN THE 2612 01:39:39,073 --> 01:39:40,307 BURDEN OF PARTICIPATION. 2613 01:39:40,374 --> 01:39:42,609 >> CAN I MAKE ONE QUICK COMMENT 2614 01:39:42,676 --> 01:39:43,711 ABOUT EXTRAPOLATION BEFORE WE 2615 01:39:43,777 --> 01:39:45,346 LOSE IT BECAUSE IT'S SOMETHING 2616 01:39:45,412 --> 01:39:48,082 THAT BEN AND MARTY BROUGHT UP. 2617 01:39:48,148 --> 01:39:51,151 PEDIATRIC EPILEPSY IS AN AREA 2618 01:39:51,218 --> 01:39:53,454 THERE'S BEEN FDA DID PRETTY 2619 01:39:53,520 --> 01:39:57,057 FORWARD LEANING ON EXTRAPOLATION 2620 01:39:57,124 --> 01:39:58,258 WITH MEDICATIONS. 2621 01:39:58,325 --> 01:40:00,227 AND SO THE CAVEAT I'M NOT FROM 2622 01:40:00,294 --> 01:40:02,296 FDA, CAN'T SPEAK FOR FDA, THE 2623 01:40:02,363 --> 01:40:03,731 WAY THAT THE EFFORT HAS 2624 01:40:03,797 --> 01:40:06,033 BASICALLY COME TOGETHER IN A 2625 01:40:06,100 --> 01:40:08,102 PRACTICAL SENSE, BECAUSE BEN AND 2626 01:40:08,168 --> 01:40:09,436 I PRESCRIBE MEDICATIONS ALL THE 2627 01:40:09,503 --> 01:40:11,372 TIME IN AN OFF-LABEL WAY. 2628 01:40:11,438 --> 01:40:13,774 IT'S ALMOST THE JOKE, IT'S 2629 01:40:13,841 --> 01:40:15,109 ALMOST MALPRACTICE IF WE 2630 01:40:15,175 --> 01:40:16,410 PRESCRIBE SOMETHING THAT'S ON 2631 01:40:16,477 --> 01:40:17,945 LABEL BECAUSE IT'S SO UNCOMMON. 2632 01:40:18,011 --> 01:40:18,946 THAT'S BETTING A LITTLE BIT 2633 01:40:19,012 --> 01:40:21,548 BETTER BUT IN THE EXTRAPOLATION 2634 01:40:21,615 --> 01:40:23,317 SPACE THERE'S TWO COMPONENTS, WE 2635 01:40:23,384 --> 01:40:27,788 HIGHLIGHTED IN OTHER COMMENTS. 2636 01:40:27,855 --> 01:40:31,825 FIRST IS THAT FOCAL ONSET 2637 01:40:31,892 --> 01:40:32,459 SEIZURES, BASIC PATHOPHYSIOLOGY 2638 01:40:32,526 --> 01:40:33,394 IS LARGELY THE SAME BETWEEN 2639 01:40:33,460 --> 01:40:35,996 CHILDREN ALL THE WAY DOWN TO, 2640 01:40:36,063 --> 01:40:38,098 YOU KNOW, AT LEAST A YEAR OF AGE 2641 01:40:38,165 --> 01:40:39,833 UP THROUGH ADULTS. 2642 01:40:39,900 --> 01:40:43,437 FDA HAS REQUIRED SAFETY STUDIES 2643 01:40:43,504 --> 01:40:45,973 IN THOSE, IN THAT CONTEXT, TO 2644 01:40:46,039 --> 01:40:47,274 BETTER FRAME THAT RISK/BENEFIT. 2645 01:40:47,341 --> 01:40:50,577 SO IT'S NOT LIKE THERE'S A MAGIC 2646 01:40:50,644 --> 01:40:51,545 WAND PRACTICALLY SPEAKING, 2647 01:40:51,612 --> 01:40:53,414 HASN'T BEEN A MAGIC WAND, ALL OF 2648 01:40:53,480 --> 01:40:55,082 A SUDDEN EVERYTHING IS FINE. 2649 01:40:55,149 --> 01:40:57,451 BUT WITH THE ADDITION OF AND 2650 01:40:57,518 --> 01:40:59,987 SAFETY STUDIES LOOKING DIFFERENT 2651 01:41:00,053 --> 01:41:02,289 THAN COMBINED EFFICACY 2652 01:41:02,356 --> 01:41:03,056 EFFECTIVENESS IN SAFETY STUDIES, 2653 01:41:03,123 --> 01:41:06,460 AND SO THERE HAVE BEEN I THINK 2654 01:41:06,527 --> 01:41:09,963 OVER TIME THIS HAS BEEN VERY 2655 01:41:10,030 --> 01:41:10,497 POSITIVE DEVELOPMENT, IT'S 2656 01:41:10,564 --> 01:41:13,767 LIMITED AND SO ONE WOULD LIKE TO 2657 01:41:13,834 --> 01:41:15,769 SEE THAT EFFORT SCIENTIFICALLY 2658 01:41:15,836 --> 01:41:17,304 AND THOUGHTFULLY EXPANDS, THAT 2659 01:41:17,371 --> 01:41:18,806 GETS TO THE POINT THAT BEN IS 2660 01:41:18,872 --> 01:41:21,341 MAKING IN RESPONSE TO JOHN'S 2661 01:41:21,408 --> 01:41:23,310 QUESTION ABOUT THIS TENSION 2662 01:41:23,377 --> 01:41:26,280 BETWEEN HOW DO WE WORK OUR WAY 2663 01:41:26,346 --> 01:41:27,681 INTO THAT MEANINGFUL AND 2664 01:41:27,748 --> 01:41:29,183 IMPACTFUL STUDY SPACE SO WE CAN 2665 01:41:29,249 --> 01:41:32,419 LOOK A FAMILY IN THE EYE AND 2666 01:41:32,486 --> 01:41:35,789 SAY WE HAVE SOME LARGER 2667 01:41:35,856 --> 01:41:40,494 KNOWLEDGE, MORE THAN MY 2668 01:41:40,561 --> 01:41:41,395 N-of-1 OR N-OF-2 ANECDOTAL 2669 01:41:41,462 --> 01:41:45,866 EXPERIENCE WHEN WE WRITE THAT 2670 01:41:45,933 --> 01:41:46,467 PRESCRIPTION. 2671 01:41:46,533 --> 01:41:48,035 >> I'M GOING TO PASS THE BATON 2672 01:41:48,101 --> 01:41:49,670 TO CHRISTINE TO CONTINUE WITH 2673 01:41:49,736 --> 01:41:51,605 THE DISCUSSION. 2674 01:41:51,672 --> 01:41:51,872 THANK YOU. 2675 01:41:51,939 --> 01:41:53,173 >> THANK YOU SO MUCH. 2676 01:41:53,240 --> 01:41:55,375 BEFORE I ASK MY QUESTION AND 2677 01:41:55,442 --> 01:41:56,677 THEN CONTINUE THE MODERATION, I 2678 01:41:56,743 --> 01:41:58,412 WANT TO WELCOME AMY BECAUSE WE 2679 01:41:58,479 --> 01:42:00,180 WELCOMED YOU BEFORE YOU CAME, 2680 01:42:00,247 --> 01:42:02,816 AMY BUT NOW THAT YOU'RE HERE, 2681 01:42:02,883 --> 01:42:04,051 NICE TO HAVE YOU. 2682 01:42:04,117 --> 01:42:06,420 I WAS GOING TO ASK ABOUT 2683 01:42:06,487 --> 01:42:06,854 EXTRAPOLATION. 2684 01:42:06,920 --> 01:42:08,088 SINCE ADAM SAID WHAT HE SAID 2685 01:42:08,155 --> 01:42:09,723 I'LL MOVE TO A DIFFERENT 2686 01:42:09,790 --> 01:42:09,990 QUESTION. 2687 01:42:10,057 --> 01:42:11,892 THE ONE I WAS GOING TO THINK 2688 01:42:11,959 --> 01:42:14,428 ABOUT WAS BUILDING ON WHAT SYD 2689 01:42:14,495 --> 01:42:14,761 SAID. 2690 01:42:14,828 --> 01:42:18,031 I REALLY THINK THAT WE DO NEED 2691 01:42:18,098 --> 01:42:19,333 TO PROVIDE MORE ACCOMMODATIONS 2692 01:42:19,399 --> 01:42:20,534 FOR PEOPLE WHO CANNOT OTHERWISE 2693 01:42:20,601 --> 01:42:22,836 AFFORD TO BE IN A TRIAL OR 2694 01:42:22,903 --> 01:42:25,806 AFFORD SOME THINGS TRIALS 2695 01:42:25,873 --> 01:42:27,641 REQUIRE. 2696 01:42:27,708 --> 01:42:29,943 BUT I THINK WE ARE AT ODDS WITH 2697 01:42:30,010 --> 01:42:32,246 OURSELVES IN TERMS OF HOW TO DO 2698 01:42:32,312 --> 01:42:34,114 THAT BECAUSE WE'RE ALWAYS 2699 01:42:34,181 --> 01:42:36,617 FIGHTING ABOUT HOW MUCH 2700 01:42:36,683 --> 01:42:38,819 INCENTIVE TO PROVIDE, AND BEN 2701 01:42:38,886 --> 01:42:40,988 RAISED THE POST TRIAL QUESTION, 2702 01:42:41,054 --> 01:42:42,189 THE BIG QUESTION, WHO IS GOING 2703 01:42:42,256 --> 01:42:44,057 TO PAY FOR IT? 2704 01:42:44,124 --> 01:42:47,427 IT'S ALWAYS HOW DO WE DO THOSE 2705 01:42:47,494 --> 01:42:49,296 ACCOMMODATIONS IN REAL LIFE, IN 2706 01:42:49,363 --> 01:42:50,998 THE WORLD OF THE INFRASTRUCTURE 2707 01:42:51,064 --> 01:42:52,833 OF THE CLINICAL TRIAL WORLD WE 2708 01:42:52,900 --> 01:42:54,768 LIVE IN, AND I DON'T KNOW IF 2709 01:42:54,835 --> 01:42:56,637 PEOPLE HAVE IDEAS BUT IT'S A 2710 01:42:56,703 --> 01:43:01,141 REAL -- WE BUTT HEADS. 2711 01:43:01,208 --> 01:43:02,910 IF ANYONE WANTS TO ANSWER THAT 2712 01:43:02,976 --> 01:43:04,711 I'D LOVE AN ANSWER, OTHERWISE 2713 01:43:04,778 --> 01:43:12,419 I'LL TURN TO DAVID FOR THE NEXT 2714 01:43:12,486 --> 01:43:12,819 COMMENT. 2715 01:43:12,886 --> 01:43:14,721 >> I'LL MAKE A COMMENT. 2716 01:43:14,788 --> 01:43:18,959 >> GO AHEAD, BEN. 2717 01:43:19,026 --> 01:43:19,860 >> TWO THINGS. 2718 01:43:19,927 --> 01:43:23,130 I FEEL LIKE IN GENERAL I'M IN 2719 01:43:23,196 --> 01:43:24,464 FAVOR OF MORE CLINICAL TRIALS 2720 01:43:24,531 --> 01:43:26,967 BUT I WANT TO ACKNOWLEDGE MORE 2721 01:43:27,034 --> 01:43:28,502 THAT'S POINT ABOUT THE REAL 2722 01:43:28,569 --> 01:43:33,206 WORLD DATA WHICH I COMPLETELY 2723 01:43:33,273 --> 01:43:36,343 AGREE WITH THAT NO -- I THINK OF 2724 01:43:36,410 --> 01:43:39,913 FDA APPROVAL AS A LOW BAR, IT 2725 01:43:39,980 --> 01:43:41,782 MEANS WE'RE PRETTY SURE IT'S NOT 2726 01:43:41,848 --> 01:43:43,417 GOING TO KILL ANYBODY OR NOT 2727 01:43:43,483 --> 01:43:44,952 KILL TOO MANY PEOPLE, BUT WE 2728 01:43:45,018 --> 01:43:47,788 ALWAYS NEED MORE DATA ABOUT THE 2729 01:43:47,854 --> 01:43:48,989 ACTUAL EXPERIENCE AFTER WHICH, 2730 01:43:49,056 --> 01:43:50,524 ALL THE NOTIONS OF TRYING TO GET 2731 01:43:50,591 --> 01:43:52,926 REAL WORLD DATA IS CRITICAL BUT 2732 01:43:52,993 --> 01:43:56,096 I THINK THE ISSUE ABOUT 2733 01:43:56,163 --> 01:43:59,266 ACCOMMODATIONS, AND I HEAR FOCUS 2734 01:43:59,333 --> 01:44:00,901 FROM SPECIFICALLY ON POST-TRIAL 2735 01:44:00,968 --> 01:44:01,902 ACCOMMODATIONS THAT I BELIEVE IS 2736 01:44:01,969 --> 01:44:04,004 THE PLACE WE CAN FIND COMMON 2737 01:44:04,071 --> 01:44:04,438 GROUND. 2738 01:44:04,504 --> 01:44:06,540 IN OTHER WORDS, I THINK THAT 2739 01:44:06,607 --> 01:44:10,243 EVEN WHEN WE HAVE A NEED FOR 2740 01:44:10,310 --> 01:44:12,779 MORE TRIALS, THINGS APPROVED, I 2741 01:44:12,846 --> 01:44:13,347 THINK THINKING THOUGHTFULLY 2742 01:44:13,413 --> 01:44:15,716 ABOUT WHAT WE CAN DO FOR THOSE 2743 01:44:15,782 --> 01:44:17,384 PARTICIPANTS TO ENSURE IF WE 2744 01:44:17,451 --> 01:44:21,622 HAVE EVIDENCE OF SOME EFFICACY 2745 01:44:21,688 --> 01:44:24,257 TO CONTINUE THOSE INDIVIDUALS ON 2746 01:44:24,324 --> 01:44:26,994 THOSE DEVICES I THINK IS 2747 01:44:27,060 --> 01:44:27,628 (INDISCERNIBLE). 2748 01:44:27,694 --> 01:44:30,631 >> I COMPLETELY DISAGREE WITH 2749 01:44:30,697 --> 01:44:31,865 YOUR COMMENT ABOUT FDA APPROVAL 2750 01:44:31,932 --> 01:44:34,034 BEING A LOW BAR. 2751 01:44:34,101 --> 01:44:38,338 I COMPLETELY DISAGREE. 2752 01:44:38,405 --> 01:44:39,272 >> OKAY. 2753 01:44:39,339 --> 01:44:40,374 >> WANT TO SAY WHY? 2754 01:44:40,440 --> 01:44:41,475 I THINK ACTUALLY THERE'S -- 2755 01:44:41,541 --> 01:44:43,644 WELL, I DON'T KNOW. 2756 01:44:43,710 --> 01:44:48,348 I THINK THERE'S BEEN AN 2757 01:44:48,415 --> 01:44:51,084 APPROPRIATELY HIGH BAR AND IT'S 2758 01:44:51,151 --> 01:44:56,223 THE ASSESSMENT OF BENEFIT WHERE 2759 01:44:56,289 --> 01:44:57,858 I BELIEVE THE PATIENT'S VOICE 2760 01:44:57,924 --> 01:45:00,160 COULD BE BETTER HEARD, THAT'S MY 2761 01:45:00,227 --> 01:45:00,560 PERSONAL OPINION. 2762 01:45:00,627 --> 01:45:03,030 WE MAY NOT HAVE ALL THE RIGHT 2763 01:45:03,096 --> 01:45:04,731 PEOPLE AT THE TABLE DISCUSSING 2764 01:45:04,798 --> 01:45:11,638 WHAT THE RESULTS OF THE TRIAL 2765 01:45:11,705 --> 01:45:11,838 MEAN. 2766 01:45:11,905 --> 01:45:13,340 ACTUALLY WE HAVE DR. McMULLEN 2767 01:45:13,407 --> 01:45:17,244 WHO CAN BE THE VOICE OF FDA. 2768 01:45:17,310 --> 01:45:20,647 >> CAN I CLARIFY? 2769 01:45:20,714 --> 01:45:22,382 MAYBE I OVERSPOKE. 2770 01:45:22,449 --> 01:45:24,251 I'M SAYING THIS BASED ON HAVING 2771 01:45:24,317 --> 01:45:25,686 BEEN ON THE FDA ADVISORY 2772 01:45:25,752 --> 01:45:28,321 COMMITTEE AS WELL AS CONSULTING 2773 01:45:28,388 --> 01:45:31,858 FOR MANY YEARS, HUGE AMOUNT OF 2774 01:45:31,925 --> 01:45:33,226 ENTHUSIASM FOR THE WORK OF THE 2775 01:45:33,293 --> 01:45:33,560 FDA. 2776 01:45:33,627 --> 01:45:35,762 I WAS NOT TRYING TO BE CRITICAL 2777 01:45:35,829 --> 01:45:37,297 OF THE FDA. 2778 01:45:37,364 --> 01:45:39,366 BUT MY POINT IS THAT WHEN WE 2779 01:45:39,433 --> 01:45:41,768 MAKE DECISIONS FOR APPROVAL OF 2780 01:45:41,835 --> 01:45:44,171 DRUGS, IT'S OFTEN THE CASE THAT 2781 01:45:44,237 --> 01:45:46,373 IT HAS MET A THRESHOLD TO GO 2782 01:45:46,440 --> 01:45:46,606 FORWARD. 2783 01:45:46,673 --> 01:45:50,310 AS YOU POINTED OUT IT'S ONLY 2784 01:45:50,377 --> 01:45:51,678 AFTER WE DO ADDITIONAL RESEARCH 2785 01:45:51,745 --> 01:45:53,313 WE UNDERSTAND HOW WELL TO USE 2786 01:45:53,380 --> 01:45:53,714 THAT. 2787 01:45:53,780 --> 01:45:55,816 AND I THINK ONE OF THE 2788 01:45:55,882 --> 01:45:57,184 CHALLENGES IN CLINICAL PRACTICE 2789 01:45:57,250 --> 01:46:00,287 IS THAT MANY OF THE QUESTIONS 2790 01:46:00,353 --> 01:46:02,923 THAT CLINICIANS HAVE ARE NOT 2791 01:46:02,989 --> 01:46:04,124 ANSWERED BY FDA APPROVAL. 2792 01:46:04,191 --> 01:46:06,760 HOW DO WE CHOOSE BETWEEN DRUG A 2793 01:46:06,827 --> 01:46:08,829 VERSUS DRUG B, HOW DO WE COMBINE 2794 01:46:08,895 --> 01:46:09,029 THESE? 2795 01:46:09,096 --> 01:46:10,931 THERE'S A LOT OF WORK OUTSIDE 2796 01:46:10,997 --> 01:46:14,367 FDA APPROVAL THAT IS NEEDED FOR 2797 01:46:14,434 --> 01:46:15,502 CLINICAL PRACTICE. 2798 01:46:15,569 --> 01:46:17,270 A LOW BAR, WE HAVE REASON TO 2799 01:46:17,337 --> 01:46:19,005 BELIEVE IT'S SAME. 2800 01:46:19,072 --> 01:46:20,774 WE HAVE REASONS TO BELIEVE IT 2801 01:46:20,841 --> 01:46:21,975 CAN BE EFFECTIVE. 2802 01:46:22,042 --> 01:46:23,176 BUT WE STILL DON'T REALLY KNOW 2803 01:46:23,243 --> 01:46:25,011 WHAT TO DO WITH IT WHEN THE 2804 01:46:25,078 --> 01:46:30,317 PERSON SHOWS UP IN CLINIC THE 2805 01:46:30,383 --> 01:46:30,817 NEXT DAY. 2806 01:46:30,884 --> 01:46:33,487 I'M TRYING TO MODIFY MY 2807 01:46:33,553 --> 01:46:33,854 COMMENTS. 2808 01:46:33,920 --> 01:46:35,322 >> THANK YOU, BEN, FOR 2809 01:46:35,388 --> 01:46:35,622 CLARIFYING. 2810 01:46:35,689 --> 01:46:37,491 DAVID, NOW YOU CAN DEFEND THE 2811 01:46:37,557 --> 01:46:37,991 FDA. 2812 01:46:38,058 --> 01:46:43,363 NO, YOU DON'T HAVE TO. 2813 01:46:43,430 --> 01:46:46,233 >> I WANT TO FOLLOW UP, JENNY, 2814 01:46:46,299 --> 01:46:54,908 WITH YOUR CONCEPT OF 2815 01:46:54,975 --> 01:46:56,109 PROTECTIONISM, AT FDA WE HAVE 2816 01:46:56,176 --> 01:46:59,713 LEVERS TO USE, ONE IS WHEN WE 2817 01:46:59,780 --> 01:47:02,015 DETERMINE STUDY SIGNIFICANT RISK 2818 01:47:02,082 --> 01:47:04,417 REQUIRE STUDY TO BE CONDUCTED 2819 01:47:04,484 --> 01:47:05,185 UNDER INVESTIGATIONAL DEVICE 2820 01:47:05,252 --> 01:47:07,821 EXEMPTION WHICH MAY BE 2821 01:47:07,888 --> 01:47:09,990 ADDITIONAL LAYER OF OVERSIGHT 2822 01:47:10,056 --> 01:47:11,858 OVER AN IRB. 2823 01:47:11,925 --> 01:47:14,027 HOWEVER, WE CAN LOOK AT THE 2824 01:47:14,094 --> 01:47:16,663 DEVICE AND RISKS IT POSES, ALSO 2825 01:47:16,730 --> 01:47:20,267 THE STUDY ITSELF IN TOTALITY 2826 01:47:20,333 --> 01:47:21,168 INCLUDING THE PATIENT 2827 01:47:21,234 --> 01:47:21,701 POPULATION. 2828 01:47:21,768 --> 01:47:26,306 I WONDER WHAT YOUR THOUGHTS ARE 2829 01:47:26,373 --> 01:47:27,274 THINKING THROUGH WEIGHING THIS 2830 01:47:27,340 --> 01:47:29,810 IDEA, THIS FEELS LIKE A 2831 01:47:29,876 --> 01:47:30,544 VULNERABLE PATIENT POPULATION, 2832 01:47:30,610 --> 01:47:35,816 SO OF COURSE WE WANT TO PROVIDE 2833 01:47:35,882 --> 01:47:37,250 ADDITIONAL OVERSIGHT, BUT THE 2834 01:47:37,317 --> 01:47:39,853 RISK OF THAT WHICH OFTEN LEAD TO 2835 01:47:39,920 --> 01:47:43,890 PATIENT POPULATIONS BEING 2836 01:47:43,957 --> 01:47:45,225 UNDERSTUDIED, HOW DO YOU THINK 2837 01:47:45,292 --> 01:47:47,194 ABOUT THAT TENSION AND HOW FOLKS 2838 01:47:47,260 --> 01:47:48,361 EVALUATE IT? 2839 01:47:48,428 --> 01:47:50,564 >> I'LL JUST SAY I ALMOST PUT IN 2840 01:47:50,630 --> 01:47:52,232 THIS SLIDE LIKE A COMMENT ABOUT 2841 01:47:52,299 --> 01:47:54,201 THE OMISSION BIAS BECAUSE MY 2842 01:47:54,267 --> 01:47:55,836 MAIN RESEARCH IS IN DECISION 2843 01:47:55,902 --> 01:47:58,271 MAKING AND BIASES IN HUERISTICS. 2844 01:47:58,338 --> 01:48:00,140 THIS PLACE A HUGE ROLE HERE THAT 2845 01:48:00,207 --> 01:48:05,912 WE HAVE THIS SORT OF TENDENCY TO 2846 01:48:05,979 --> 01:48:07,480 NOT WANT TO CAUSE HARM BUT WE'RE 2847 01:48:07,547 --> 01:48:09,115 OKAY WITH ALLOWING HARM EVEN IF 2848 01:48:09,182 --> 01:48:10,851 THE HARM IS GREATER, RIGHT? 2849 01:48:10,917 --> 01:48:13,820 AND THIS HAS COME UP, THIS 2850 01:48:13,887 --> 01:48:15,355 OMISSION, AND WE JUST NEED TO 2851 01:48:15,422 --> 01:48:17,457 OWN LIKE A NON-DECISION IS ALSO 2852 01:48:17,524 --> 01:48:22,696 A DECISION, A DECISION TO DO 2853 01:48:22,762 --> 01:48:24,564 NOTHING ALSO POSES RISKS AND 2854 01:48:24,631 --> 01:48:26,299 POTENTIAL ARMS, KEEPING THAT IN 2855 01:48:26,366 --> 01:48:27,601 MIND, CHECKING OURSELVES ABOUT 2856 01:48:27,667 --> 01:48:31,438 THAT I THINK IS REALLY CENTRAL 2857 01:48:31,504 --> 01:48:31,638 HERE. 2858 01:48:31,705 --> 01:48:31,938 >> GREAT. 2859 01:48:32,005 --> 01:48:32,772 THANKS. 2860 01:48:32,839 --> 01:48:35,175 ADAM, IF YOU DO WANT TO SPEAK ON 2861 01:48:35,242 --> 01:48:40,013 BEHALF OF FDA WE'RE ALWAYS 2862 01:48:40,080 --> 01:48:40,347 HIRING. 2863 01:48:40,413 --> 01:48:42,849 >> DON'T YOU DARE, ADAM. 2864 01:48:42,916 --> 01:48:45,785 >> HEY, WATCH IT, DAVID. 2865 01:48:45,852 --> 01:48:52,359 [LAUGHTER] 2866 01:48:52,425 --> 01:48:53,026 >> WINSTON? 2867 01:48:53,093 --> 01:48:54,995 >> I GUESS BROADENING THE 2868 01:48:55,061 --> 01:48:55,795 DISCUSSION ABOUT ACCOMMODATIONS 2869 01:48:55,862 --> 01:48:57,197 AND BIASES OF INDIVIDUAL 2870 01:48:57,264 --> 01:48:59,032 JUDGMENTS, SOCIAL AND FAMILY 2871 01:48:59,099 --> 01:49:00,267 SUPPORT, I THINK THAT THIS IS 2872 01:49:00,333 --> 01:49:03,536 SOMETHING I SEE IN DEMENTIA AND 2873 01:49:03,603 --> 01:49:04,871 I IMAGINE ANALOGOUS CASES IN 2874 01:49:04,938 --> 01:49:06,039 PEDIATRICS, THE DESIGN OF OUR 2875 01:49:06,106 --> 01:49:09,442 TRIALS AND DESIGN OF OUR 2876 01:49:09,509 --> 01:49:10,443 INTERVENTIONS ENCODES ECONOMIC 2877 01:49:10,510 --> 01:49:13,280 BIAS ABOUT THINGS LIKE WHAT 2878 01:49:13,346 --> 01:49:17,350 FAMILY SUPPORT LOOKS LIKE, WHAT 2879 01:49:17,417 --> 01:49:18,618 SOCIAL SUPPORT LOOKS LIKE. 2880 01:49:18,685 --> 01:49:20,153 A LOT OF OUR TRIALS REQUIRE 2881 01:49:20,220 --> 01:49:22,789 PRESENCE OF A SPOUSE CAREGIVER, 2882 01:49:22,856 --> 01:49:24,424 TURNS OUT IN REPRESENTATIVE DATA 2883 01:49:24,491 --> 01:49:27,060 LESS THAN 10% OF DEMENTIA 2884 01:49:27,127 --> 01:49:27,827 CAREGIVERS ARE SPOUSE 2885 01:49:27,894 --> 01:49:29,596 CAREGIVERS, BLACK AND HISPANIC 2886 01:49:29,663 --> 01:49:31,765 CAREGIVERS ARE MORE LIKELY TO BE 2887 01:49:31,831 --> 01:49:33,500 YOUNGER WORKING AGE CAREGIVERS 2888 01:49:33,566 --> 01:49:34,301 LIKE CHILDREN OR GRANDCHILDREN 2889 01:49:34,367 --> 01:49:36,269 WHO CAN'T SHOW UP FOR THE KINDS 2890 01:49:36,336 --> 01:49:37,671 OF TRIALS THAT OFTEN ASSUME 2891 01:49:37,737 --> 01:49:38,972 PEOPLE WITH WILLING TO 2892 01:49:39,039 --> 01:49:41,408 PARTICIPATE DURING THE DAY TIME, 2893 01:49:41,474 --> 01:49:42,709 WORKING HOURS, THAT'S ONE THING 2894 01:49:42,776 --> 01:49:44,477 WE'RE LEARNING THAT'S BEEN A 2895 01:49:44,544 --> 01:49:46,112 BARRIER TO INCLUSIVE 2896 01:49:46,179 --> 01:49:46,446 PARTICIPATION. 2897 01:49:46,513 --> 01:49:48,848 I THINK THAT THIS MIGHT CONNECT 2898 01:49:48,915 --> 01:49:50,583 UP WITH THE POINT ABOUT 2899 01:49:50,650 --> 01:49:51,685 COMMUNITY ENGAGEMENT EARLY, NOT 2900 01:49:51,751 --> 01:49:56,089 JUST A POINT OF HAVING SOMETHING 2901 01:49:56,156 --> 01:49:57,257 AND ENROLLING PEOPLE BUT WHAT'S 2902 01:49:57,324 --> 01:49:58,825 THE DESIGN OF THE INTERVENTION, 2903 01:49:58,892 --> 01:50:00,126 WHAT'S THE WAY THIS IS SUPPOSED 2904 01:50:00,193 --> 01:50:02,095 TO WORK, IS THIS SOMETHING THAT 2905 01:50:02,162 --> 01:50:04,364 CAN WORK FOR ALL FAMILIES OR ARE 2906 01:50:04,431 --> 01:50:05,799 WE MAKING SOME ASSUMPTIONS ABOUT 2907 01:50:05,865 --> 01:50:08,868 WHAT THE PARENTS LOOK LIKE, WHAT 2908 01:50:08,935 --> 01:50:10,103 THE PARENTS' AVAILABILITY IS, 2909 01:50:10,170 --> 01:50:11,371 WHAT RESEARCH PARENTS HAVE. 2910 01:50:11,438 --> 01:50:12,906 THOSE PROBLEMS ARE GOING TO 2911 01:50:12,973 --> 01:50:14,240 PERSIST NOT JUST IN THE DESIGN 2912 01:50:14,307 --> 01:50:15,875 OF A TRIAL BUT ALSO IN WHETHER 2913 01:50:15,942 --> 01:50:17,477 OR NOT THESE INTERVENTIONS ARE 2914 01:50:17,544 --> 01:50:20,447 USEFUL TO A LOT OF PEOPLE WHO 2915 01:50:20,513 --> 01:50:21,348 NEED THEM. 2916 01:50:21,414 --> 01:50:22,882 JUST A WAY OF POTENTIALLY 2917 01:50:22,949 --> 01:50:23,750 BROADENING THAT DISCUSSION AND 2918 01:50:23,817 --> 01:50:25,618 MAKING A PLEA FOR REALLY EARLY 2919 01:50:25,685 --> 01:50:26,486 ENGAGEMENT WITH COMMUNITIES THAT 2920 01:50:26,553 --> 01:50:30,023 MAY NOT LOOK LIKE THE ONES WE 2921 01:50:30,090 --> 01:50:32,225 SEE IN TERTIARY CARE SETTINGS, 2922 01:50:32,292 --> 01:50:37,697 PEOPLE WHO HAVE ACCESS TO 2923 01:50:37,764 --> 01:50:41,167 CURRENT HIGH TECHNOLOGY 2924 01:50:41,234 --> 01:50:45,872 INTERVENTIONS. 2925 01:50:45,939 --> 01:50:47,474 >> GREAT POINT. 2926 01:50:47,540 --> 01:50:49,275 SAMEER? 2927 01:50:49,342 --> 01:50:49,709 >> THANKS. 2928 01:50:49,776 --> 01:50:50,276 REALLY FUN DISCUSSION. 2929 01:50:50,343 --> 01:50:52,612 A BIT OF A NEW TOPIC WHICH HAS 2930 01:50:52,679 --> 01:50:54,314 TO DO WITH THE QUESTION THAT 2931 01:50:54,381 --> 01:50:58,385 ADAM ASKED AFTER YOUR TALK, WHAT 2932 01:50:58,451 --> 01:51:00,353 OF THESE THINGS IS PEDIATRIC 2933 01:51:00,420 --> 01:51:00,620 SPECIFIC. 2934 01:51:00,687 --> 01:51:02,455 OVER THE COURSE OF THE TALKS I 2935 01:51:02,522 --> 01:51:04,290 WAS THINKING ABOUT THIS IDEA 2936 01:51:04,357 --> 01:51:06,826 WHICH IS RELATED TO THE THING 2937 01:51:06,893 --> 01:51:09,929 THAT YOU SAID, PROBABLY THE MOST 2938 01:51:09,996 --> 01:51:12,232 SPECIFIC, THE DEVELOPING BRAIN. 2939 01:51:12,298 --> 01:51:15,135 BUT IT'S NOT THE SAME. 2940 01:51:15,201 --> 01:51:18,538 THIS POINT IS ONE OF UNINTENDED 2941 01:51:18,605 --> 01:51:19,639 CONSEQUENCES, NEUROMODULATION, 2942 01:51:19,706 --> 01:51:26,746 IN TERMS OF CHANGING SOMETHING 2943 01:51:26,813 --> 01:51:27,647 ABOUT THE IDENTITY PERSONALITY 2944 01:51:27,714 --> 01:51:31,785 ET CETERA OF THE INDIVIDUAL, AND 2945 01:51:31,851 --> 01:51:35,288 MAYBE THIS IS MORE LIKELY TO 2946 01:51:35,355 --> 01:51:37,457 HAPPEN IN YOUNG INDIVIDUALS, 2947 01:51:37,524 --> 01:51:39,559 PEDIATRIC POPULATION, BECAUSE OF 2948 01:51:39,626 --> 01:51:44,030 BRAIN DEVELOPMENT, ET CETERA. 2949 01:51:44,097 --> 01:51:47,000 AND A COUPLE EXAMPLES, JEN 2950 01:51:47,067 --> 01:51:49,302 TALKED ABOUT THE OCD PATIENTS. 2951 01:51:49,369 --> 01:51:52,138 REALLY AGREE LIKE THE EXAMPLE 2952 01:51:52,205 --> 01:51:54,607 YOU GAVE WAS THE QUOTE SOMETHING 2953 01:51:54,674 --> 01:52:00,080 WHO SAID KNOW WHO I AM BETTER, 2954 01:52:00,146 --> 01:52:03,116 OCD TAKES OVER, YOU KNOW, YOU 2955 01:52:03,183 --> 01:52:05,185 AND ERIC, MANY OTHERS. 2956 01:52:05,251 --> 01:52:11,558 A LOT PATIENTS WITH OCD, ADULTS, 2957 01:52:11,624 --> 01:52:12,659 WITH NEUROMODULATION, EVERYONE 2958 01:52:12,725 --> 01:52:14,094 SEES IT AS SOMETHING OTHER THAN 2959 01:52:14,160 --> 01:52:15,962 THEMSELVES, HAPPY TO SEE IT GONE 2960 01:52:16,029 --> 01:52:18,364 AS MUCH AS POSSIBLE. 2961 01:52:18,431 --> 01:52:19,899 THERE'S BEEN NO REGRET, I WISH I 2962 01:52:19,966 --> 01:52:21,301 HAD SOME OF THAT BACK. 2963 01:52:21,367 --> 01:52:24,037 ON THE OTHER HAND, THERE'S 2964 01:52:24,104 --> 01:52:27,540 DISCUSSION IN KIND OF PUBLIC 2965 01:52:27,607 --> 01:52:32,245 MEDIA STUFF REGARDING ASD 2966 01:52:32,312 --> 01:52:35,482 VERSION AND SOME, YOU KNOW, 2967 01:52:35,548 --> 01:52:41,788 THINGS FROM - AFFECTED 2968 01:52:41,855 --> 01:52:43,423 INDIVIDUALS AND CAREGIVERS, 2969 01:52:43,490 --> 01:52:44,491 NON-INVASIVE NEUROMODULATION, 2970 01:52:44,557 --> 01:52:47,460 ASD, THIS PERSON HAS CHANGED, IN 2971 01:52:47,527 --> 01:52:49,095 SOME WAYS BETTER, OTHER WAYS 2972 01:52:49,162 --> 01:52:50,630 KIND OF I AS A PARENT DON'T 2973 01:52:50,697 --> 01:52:53,032 APPRECIATE OR I AS THE 2974 01:52:53,099 --> 01:52:53,833 INDIVIDUAL MISS. 2975 01:52:53,900 --> 01:52:56,035 I WONDER IF THIS MIGHT HAPPEN OR 2976 01:52:56,102 --> 01:52:57,871 MIGHT BE PRONE TO HAPPENING MORE 2977 01:52:57,937 --> 01:52:59,072 IN YOUNGER INDIVIDUALS BECAUSE 2978 01:52:59,139 --> 01:53:00,807 THINGS ARE CHANGING AND WE 2979 01:53:00,874 --> 01:53:02,675 ALWAYS HAVE TO DECIDE, YOU KNOW, 2980 01:53:02,742 --> 01:53:06,279 WHEN TOE INTERVENE WITH THESE 2981 01:53:06,346 --> 01:53:07,714 KINDS OF NEUROMODULATION 2982 01:53:07,780 --> 01:53:08,581 INTERVENTIONS IN TERMS OF 2983 01:53:08,648 --> 01:53:10,016 NATIONAL COURSE OF THE DISORDER 2984 01:53:10,083 --> 01:53:12,619 ITSELF AND WHETHER THINGS MAY 2985 01:53:12,685 --> 01:53:15,088 IMPROVE AND HOW THEY MAY 2986 01:53:15,155 --> 01:53:16,055 SPECIFICALLY CHANGE WITH 2987 01:53:16,122 --> 01:53:16,756 NEUROMODULATION. 2988 01:53:16,823 --> 01:53:18,691 WHEN WE'RE TALKING ABOUT 2989 01:53:18,758 --> 01:53:20,226 INVASIVE NEUROMODULATION, SORT 2990 01:53:20,293 --> 01:53:24,164 OF A TWO-EDGED SWORD, YOU KNOW, 2991 01:53:24,230 --> 01:53:25,465 INVASIVENESS IS, OKAY, NOT GREAT 2992 01:53:25,532 --> 01:53:28,301 BUT THE GOOD THING IS IT BRINGS 2993 01:53:28,368 --> 01:53:31,037 SPECIFICITY IN TERMS OF CIRCUIT 2994 01:53:31,104 --> 01:53:31,404 SPECIFICITY. 2995 01:53:31,471 --> 01:53:32,739 OFF-TARGET EFFECTS ARE IN 2996 01:53:32,805 --> 01:53:33,907 GENERAL LESS COMMON, A GOOD 2997 01:53:33,973 --> 01:53:36,075 THING IN TERMS OF UNINTENDED 2998 01:53:36,142 --> 01:53:36,743 SIDE EFFECTS. 2999 01:53:36,809 --> 01:53:38,411 THAT'S THE WHERE. 3000 01:53:38,478 --> 01:53:40,346 THERE'S ALSO THE HOW. 3001 01:53:40,413 --> 01:53:41,915 MARTY WITH YOUR DEVICE, THERE'S 3002 01:53:41,981 --> 01:53:43,550 A SENSE OF STIMULATING WHEN 3003 01:53:43,616 --> 01:53:45,518 NEEDED, NOT WHEN IT'S NOT. 3004 01:53:45,585 --> 01:53:49,222 THAT'S ANOTHER LEVER THAT WE 3005 01:53:49,289 --> 01:53:49,656 HAVE. 3006 01:53:49,722 --> 01:53:55,562 AS WE'RE TRYING TO MINIMIZE 3007 01:53:55,628 --> 01:53:57,530 UNINTENDED IMPACT, AWARE, THE 3008 01:53:57,597 --> 01:53:58,965 HOW AND WHEN, WHICH I THINK WILL 3009 01:53:59,032 --> 01:54:01,701 BE IMPORTANT FOR EVERYBODY BUT I 3010 01:54:01,768 --> 01:54:07,874 THINK MAYBE MOST SO IN THE 3011 01:54:07,941 --> 01:54:08,775 PEDIATRIC POPULATION. 3012 01:54:08,841 --> 01:54:10,643 >> I THINK THAT THIS IS GOING TO 3013 01:54:10,710 --> 01:54:12,946 BE A TOPIC THAT'S NOT JUST 3014 01:54:13,012 --> 01:54:13,246 PEDIATRICS. 3015 01:54:13,313 --> 01:54:14,380 IF WE'RE TALKING ABOUT 3016 01:54:14,447 --> 01:54:15,915 RESTORATION OF FUNCTION WHICH I 3017 01:54:15,982 --> 01:54:18,218 BELIEVE WE'RE ALL TALKING ABOUT, 3018 01:54:18,284 --> 01:54:20,620 THAT'S VERY DIFFERENT THAN 3019 01:54:20,687 --> 01:54:21,387 ENHANCEMENT OF FUNCTION. 3020 01:54:21,454 --> 01:54:25,091 SO I LIKE TO THINK THAT THE 3021 01:54:25,158 --> 01:54:26,426 INTENT AT LEAST OF WHAT WE'RE 3022 01:54:26,492 --> 01:54:30,563 TRYING TO DO IS TO RESTORE 3023 01:54:30,630 --> 01:54:31,130 HEALTH. 3024 01:54:31,197 --> 01:54:32,165 LEAVE EVERYTHING ALONE AND 3025 01:54:32,232 --> 01:54:32,999 RESTORE HEALTH. 3026 01:54:33,066 --> 01:54:36,035 OF COURSE THEN YOU HAVE TO 3027 01:54:36,102 --> 01:54:37,136 DECIDE WHAT A HEALTHY BRAIN 3028 01:54:37,203 --> 01:54:38,104 LOOKS LIKES. 3029 01:54:38,171 --> 01:54:39,539 IF WE'RE TALKING ABOUT 3030 01:54:39,606 --> 01:54:43,243 BEHAVIORAL HEALTH AS WELL AS 3031 01:54:43,309 --> 01:54:46,112 PHYSICAL HEALTH, THEN WHO 3032 01:54:46,179 --> 01:54:50,149 DECIDES WHAT IS HEALTHY VERSUS 3033 01:54:50,216 --> 01:54:53,086 UNHEALTHY BEHAVIORS, THERE'S 3034 01:54:53,152 --> 01:54:53,486 SPECTRUM. 3035 01:54:53,553 --> 01:54:55,488 AND OCD IS ONE END OF THE 3036 01:54:55,555 --> 01:54:57,924 SPECTRUM BUT I WAS INTRIGUED BY 3037 01:54:57,991 --> 01:55:00,326 COMMENTS ABOUT ASD. 3038 01:55:00,393 --> 01:55:01,861 >> SOMETHING WE CAN PAY 3039 01:55:01,928 --> 01:55:03,296 ATTENTION TO IN RESEARCH IN 3040 01:55:03,363 --> 01:55:08,968 TERMS OF PATIENT AND CAREGIVER 3041 01:55:09,035 --> 01:55:09,469 EXPECTATIONS AND HOPES, 3042 01:55:09,535 --> 01:55:12,705 EXPECTATION AND REALITY IN TERMS 3043 01:55:12,772 --> 01:55:14,007 OF WHAT HAS CHANGED, WHAT THEY 3044 01:55:14,073 --> 01:55:20,813 ARE HAPPY ABOUT, WHAT THEY 3045 01:55:20,880 --> 01:55:21,481 REGRET. 3046 01:55:21,547 --> 01:55:24,617 >> I'LL COMMENT ON THAT. 3047 01:55:24,684 --> 01:55:25,385 >> SURE. 3048 01:55:25,451 --> 01:55:28,921 >> I THINK I AGREE WITH YOUR 3049 01:55:28,988 --> 01:55:29,889 QUESTION, MARTY'S RESPONSE. 3050 01:55:29,956 --> 01:55:32,292 I WANT TO ADD THOUGH THAT I 3051 01:55:32,358 --> 01:55:35,495 THINK TWO POINTS. 3052 01:55:35,561 --> 01:55:39,198 ONE IS THAT ALL OF US EXPERIENCE 3053 01:55:39,265 --> 01:55:41,934 LIFE-ALTERING THINGS THAT HAPPEN 3054 01:55:42,001 --> 01:55:43,336 THROUGH CHILDHOOD THAT SHAPE WHO 3055 01:55:43,403 --> 01:55:44,003 WE ARE. 3056 01:55:44,070 --> 01:55:48,374 SO I THINK THIS NOTION THAT -- 3057 01:55:48,441 --> 01:55:51,210 THE FACT THIS MIGHT HAVE SOME 3058 01:55:51,277 --> 01:55:52,545 SORT OF IMPACT, THAT'S PART OF 3059 01:55:52,612 --> 01:55:52,745 LIFE. 3060 01:55:52,812 --> 01:55:55,081 THAT WAS MY JOKE ABOUT MARTY 3061 01:55:55,148 --> 01:55:55,615 McFLY. 3062 01:55:55,682 --> 01:55:58,451 THE REALITY IS WE ALL FACE 3063 01:55:58,518 --> 01:56:00,553 ISSUES THAT CHANGE WHO WE ARE, 3064 01:56:00,620 --> 01:56:02,655 CHANGE HOW WE THINK IN MANY 3065 01:56:02,722 --> 01:56:03,923 THINGS. 3066 01:56:03,990 --> 01:56:07,894 I'M GOING TO GIVE YOU, IN MY 3067 01:56:07,960 --> 01:56:10,763 CLINICAL AREA, PULMONOLOGY, 3068 01:56:10,830 --> 01:56:12,932 CYSTIC FIBROSIS AND DEVELOPMENT 3069 01:56:12,999 --> 01:56:15,234 OF THE MODULATORS COMPLETELY 3070 01:56:15,301 --> 01:56:16,903 EFFECTIVE IN CHANGING THE COURSE 3071 01:56:16,969 --> 01:56:20,173 OF THE DISEASE HAS HAD MANY 3072 01:56:20,239 --> 01:56:21,708 UNINTENDED CONSEQUENCES BECAUSE 3073 01:56:21,774 --> 01:56:25,511 IT HAS CHANGED WHAT PEOPLE'S 3074 01:56:25,578 --> 01:56:26,846 GOALS AND ASPIRATIONS WERE BASED 3075 01:56:26,913 --> 01:56:28,481 ON APPRECIATION THEIR LIFE 3076 01:56:28,548 --> 01:56:29,449 TRAJECTORY WAS CHANGING. 3077 01:56:29,515 --> 01:56:33,286 AND PEOPLE HAVE TO GRAPPLE WITH 3078 01:56:33,353 --> 01:56:33,619 THAT. 3079 01:56:33,686 --> 01:56:36,122 BUT I THINK -- THEY MAY OR NOT 3080 01:56:36,189 --> 01:56:39,425 REGRET IT, I CAN'T SPEAK TO 3081 01:56:39,492 --> 01:56:39,859 THAT. 3082 01:56:39,926 --> 01:56:41,294 MY POINT IS THAT LIFE CHANGES 3083 01:56:41,361 --> 01:56:43,563 AND WE HAVE TO SORT OF DEAL WITH 3084 01:56:43,629 --> 01:56:47,433 WHERE WE'RE AT, AT THE MOMENT, 3085 01:56:47,500 --> 01:56:48,801 AND I DON'T THINK THIS IS 3086 01:56:48,868 --> 01:56:49,469 UNIQUE. 3087 01:56:49,535 --> 01:56:54,407 WE ALL FACE THIS ALL THE TIME 3088 01:56:54,474 --> 01:56:56,142 FOR ALL OF US. 3089 01:56:56,209 --> 01:57:02,715 >> DO YOU WANT TO RESPOND, 3090 01:57:02,782 --> 01:57:03,516 SAMEER? 3091 01:57:03,583 --> 01:57:03,883 >> YEAH. 3092 01:57:03,950 --> 01:57:10,923 NO, IT'S A GOOD POINT, YEAH. 3093 01:57:10,990 --> 01:57:11,190 >> OKAY. 3094 01:57:11,257 --> 01:57:11,357 AMY? 3095 01:57:11,424 --> 01:57:12,792 >> YEAH, I HAVE A QUESTION BUT 3096 01:57:12,859 --> 01:57:14,861 I'LL FOLLOW UP REAL QUICK. 3097 01:57:14,927 --> 01:57:16,496 I WAS JUST THINKING AS WE WERE 3098 01:57:16,562 --> 01:57:18,297 HAVING THIS CONVERSATION I AGREE 3099 01:57:18,364 --> 01:57:20,233 WITH YOU, BEN, BUT I ALSO THINK 3100 01:57:20,299 --> 01:57:21,534 IT DOES RAISE QUESTIONS ABOUT 3101 01:57:21,601 --> 01:57:24,137 SORT OF WHERE IS THE LINE OF 3102 01:57:24,203 --> 01:57:25,338 ENHANCEMENT VERSUS TREATMENT, 3103 01:57:25,405 --> 01:57:25,705 RIGHT? 3104 01:57:25,772 --> 01:57:27,006 IT'S FUNNY BECAUSE I WAS HAVING 3105 01:57:27,073 --> 01:57:28,207 THIS DISCUSSION WITH MY HIGH 3106 01:57:28,274 --> 01:57:29,409 SCHOOL SON THIS WEEKEND, HE HAD 3107 01:57:29,475 --> 01:57:32,645 TO DO A REPORT ON GENE EDITING, 3108 01:57:32,712 --> 01:57:34,680 HE DIDN'T SHOW IT TO ME EVEN 3109 01:57:34,747 --> 01:57:37,950 THOUGH THAT'S WHAT I DO. 3110 01:57:38,017 --> 01:57:39,819 WHAT DID YOU ARGUE FOR? 3111 01:57:39,886 --> 01:57:40,486 THERE'S ETHICAL BOUNDARIES. 3112 01:57:40,553 --> 01:57:41,320 WHAT ARE THEY? 3113 01:57:41,387 --> 01:57:42,755 YOU SHOULD USE IT FOR TREATMENT 3114 01:57:42,822 --> 01:57:44,190 BUT NOT ENHANCEMENT. 3115 01:57:44,257 --> 01:57:45,491 WHAT'S ENHANCEMENT? 3116 01:57:45,558 --> 01:57:50,963 WE GET INTO THIS DEBATE. 3117 01:57:51,030 --> 01:57:52,165 HE HAS ADHD. 3118 01:57:52,231 --> 01:57:54,867 IS TREATING THAT TREATMENT? 3119 01:57:54,934 --> 01:57:56,102 HE SAID ENHANCEMENT, NOT 3120 01:57:56,169 --> 01:57:56,536 TREATMENT. 3121 01:57:56,602 --> 01:57:58,638 THIS BRINGS UP HOW DO THE 3122 01:57:58,704 --> 01:58:02,141 PATIENTS AND THEIR FAMILIES 3123 01:58:02,208 --> 01:58:04,010 THINK ABOUT THESE THINGS. 3124 01:58:04,076 --> 01:58:05,545 IT GOT ME THINKING ABOUT THAT 3125 01:58:05,611 --> 01:58:06,746 STORY, I THOUGHT IT WAS 3126 01:58:06,813 --> 01:58:07,280 INTERESTING. 3127 01:58:07,346 --> 01:58:09,382 MY REAL QUESTION FOR JENNY, WE 3128 01:58:09,449 --> 01:58:10,683 TALKED ABOUT -- I'M GOING BACK 3129 01:58:10,750 --> 01:58:12,752 BUT WE TALKED ABOUT SORT OF TWO 3130 01:58:12,819 --> 01:58:16,055 THINGS, WE TALKED ABOUT KIND OF 3131 01:58:16,122 --> 01:58:19,125 EXTRAPOLATING FROM ADULT TRIALS 3132 01:58:19,192 --> 01:58:20,660 AND ALLOWING OFF-LABEL CLINICAL 3133 01:58:20,726 --> 01:58:24,831 USE ENHANCING OUR ABILITY TO USE 3134 01:58:24,897 --> 01:58:26,332 REALTIME DATA AND COLLECT OTHER 3135 01:58:26,399 --> 01:58:29,535 TYPES OF RESEARCH DATA TO INFORM 3136 01:58:29,602 --> 01:58:30,369 PEDIATRIC PRACTICE. 3137 01:58:30,436 --> 01:58:34,540 AND THEN WE ALSO TALKED ABOUT 3138 01:58:34,607 --> 01:58:36,175 INCREASING ENROLLMENT IN 3139 01:58:36,242 --> 01:58:37,977 PEDIATRIC TRIALS THEMSELVES, AND 3140 01:58:38,044 --> 01:58:39,812 DOING THAT THROUGH TWO 3141 01:58:39,879 --> 01:58:41,180 MECHANISMS, ONE REDUCING 3142 01:58:41,247 --> 01:58:43,015 BARRIERS THROUGH ACCOMMODATIONS, 3143 01:58:43,082 --> 01:58:44,283 AND THE OTHER MENTIONED, JENNY 3144 01:58:44,350 --> 01:58:45,952 TALKED ABOUT THIS AS INCENTIVES, 3145 01:58:46,018 --> 01:58:49,589 CURIOUS WHAT HAD YOU IN MIND IN 3146 01:58:49,655 --> 01:58:50,556 TERMS OF INCENTIVES, WHETHER 3147 01:58:50,623 --> 01:58:53,059 LIMITING TO FINANCIAL OR OTHER 3148 01:58:53,125 --> 01:58:56,128 TYPES THAT WE MIGHT USE TO 3149 01:58:56,195 --> 01:58:57,430 PROMOTE PARTICIPATION IN 3150 01:58:57,497 --> 01:58:58,498 RESEARCH. 3151 01:58:58,564 --> 01:58:59,532 >> YEAH, THANKS. 3152 01:58:59,599 --> 01:59:01,400 WITH INCENTIVES I WAS THINKING 3153 01:59:01,467 --> 01:59:03,002 AROUND INCENTIVES FOR LIKE 3154 01:59:03,069 --> 01:59:04,370 RESEARCHERS ACTUALLY DOING 3155 01:59:04,437 --> 01:59:05,304 CLINICAL TRIALS IF THEY CAN 3156 01:59:05,371 --> 01:59:09,509 ALREADY DO A LOT OF THIS STUFF 3157 01:59:09,575 --> 01:59:10,510 OFF-LABEL, LIKE WHAT'S INCENTIVE 3158 01:59:10,576 --> 01:59:16,616 TO DO RESEARCH OR DATA SHARING, 3159 01:59:16,682 --> 01:59:18,818 LIKE REALLY INCENTIVES FOR DATA 3160 01:59:18,885 --> 01:59:19,585 SHARING, REPOSITORIES, CONSORTIA 3161 01:59:19,652 --> 01:59:20,553 AND THINGS LIKE THAT. 3162 01:59:20,620 --> 01:59:23,756 SO THAT WAS THE TARGET OF THE 3163 01:59:23,823 --> 01:59:34,166 INCENTIVES COMMENT. 3164 01:59:35,368 --> 01:59:39,038 JUST TO CLARIFY. 3165 01:59:39,105 --> 01:59:40,940 >> THANK YOU TO THE SPEAKERS FOR 3166 01:59:41,007 --> 01:59:42,008 THIS INTERESTING SESSION. 3167 01:59:42,074 --> 01:59:43,442 I HAVE A QUESTION FOLLOWING 3168 01:59:43,509 --> 01:59:47,613 ON -- I THINK IT WAS BEN'S 3169 01:59:47,680 --> 01:59:48,247 PRESENTATION, PERHAPS OTHER 3170 01:59:48,314 --> 01:59:49,448 SPEAKERS WOULD BE ABLE TO 3171 01:59:49,515 --> 01:59:52,618 COMMENT ON THIS AS WELL. 3172 01:59:52,685 --> 01:59:55,922 BEN, I THINK IN YOUR TALK YOU 3173 01:59:55,988 --> 01:59:57,890 HAD MENTIONED ASSENT AND 3174 01:59:57,957 --> 02:00:00,860 COMMUNITY ENGAGEMENT. 3175 02:00:00,927 --> 02:00:03,763 YOU ALSO PROVIDED THE SUGGESTION 3176 02:00:03,829 --> 02:00:04,864 AROUND ASSENT THAT FAMILIES 3177 02:00:04,931 --> 02:00:08,067 COULD BE PROVIDED A RANGE OF 3178 02:00:08,134 --> 02:00:09,268 EXAMPLES FOR DECISION MAKING, 3179 02:00:09,335 --> 02:00:11,571 MAJOR FACTORS THAT OTHER 3180 02:00:11,637 --> 02:00:13,205 FAMILIES HAVE CONSIDERED. 3181 02:00:13,272 --> 02:00:15,274 AND THAT COULD BE USEFUL FOR 3182 02:00:15,341 --> 02:00:16,609 OTHER FAMILIES COMING INTO THESE 3183 02:00:16,676 --> 02:00:18,344 STUDIES TO DETERMINE WHERE THEY 3184 02:00:18,411 --> 02:00:23,382 FALL IN THAT SPECTRUM OF 3185 02:00:23,449 --> 02:00:23,716 CONSIDERATION. 3186 02:00:23,783 --> 02:00:26,986 I WAS CURIOUS WHETHER THESE 3187 02:00:27,053 --> 02:00:27,620 SPECTRUM-BASED DECISION 3188 02:00:27,687 --> 02:00:29,088 FRAMEWORKS HAVE BEEN USED IN 3189 02:00:29,155 --> 02:00:32,358 OTHER COMMUNITIES PERHAPS EVEN 3190 02:00:32,425 --> 02:00:35,761 THE PEDIATRIC EPILEPSY COMMUNITY 3191 02:00:35,828 --> 02:00:39,165 WHICH IS QUITE LARGE AND HOW TO 3192 02:00:39,231 --> 02:00:40,333 UTILIZE FRAMEWORKS FOR EFFECTIVE 3193 02:00:40,399 --> 02:00:42,201 DECISION MAKING THAT BALANCES 3194 02:00:42,268 --> 02:00:44,837 THE NEED FOR DEEPER 3195 02:00:44,904 --> 02:00:49,008 UNDERSTANDING SO IT'S NOT SO 3196 02:00:49,075 --> 02:00:51,143 NUANCED AND NITTY-GRITTY BUT 3197 02:00:51,210 --> 02:00:51,510 UNDERSTANDABLE. 3198 02:00:51,577 --> 02:00:54,413 >> I'LL TRY TO RESPOND BRIEFLY. 3199 02:00:54,480 --> 02:01:02,288 THIS IS SOMETHING I CAN'T SAY IS 3200 02:01:02,355 --> 02:01:02,955 UNIVERSALLY DONE. 3201 02:01:03,022 --> 02:01:06,125 SOMETHING I'VE BEEN PASSIONATE 3202 02:01:06,192 --> 02:01:09,629 ABOUT, STUDY RELATED, EVEN 3203 02:01:09,695 --> 02:01:12,565 REVISION OF COMMON RULE, I DON'T 3204 02:01:12,632 --> 02:01:15,301 KNOW WHETHER THAT'S IN THERE BUT 3205 02:01:15,368 --> 02:01:17,837 IN KEY INFORMATION SECTION THEY 3206 02:01:17,903 --> 02:01:19,138 SUGGEST THAT SHOULD HELP PEOPLE 3207 02:01:19,205 --> 02:01:21,607 BE ABLE TO MAKE THOSE DECISIONS 3208 02:01:21,674 --> 02:01:23,275 BASED UPON THAT. 3209 02:01:23,342 --> 02:01:25,277 EVEN OUTSIDE RESEARCH I THINK 3210 02:01:25,344 --> 02:01:26,679 THERE'S A LOT OF OPPORTUNITIES 3211 02:01:26,746 --> 02:01:29,749 TO SORT OF UNDERSTAND FROM THE 3212 02:01:29,815 --> 02:01:33,052 PERSPECTIVE OF FAMILIES, ONE OF 3213 02:01:33,119 --> 02:01:35,354 MY OTHER AREAS IS DECISION 3214 02:01:35,421 --> 02:01:37,423 MAKING ABOUT TRACHEOSTOMY IN 3215 02:01:37,490 --> 02:01:38,024 CHILDREN UNDERSTANDING REASONS 3216 02:01:38,090 --> 02:01:40,192 PEOPLE MAY DECIDE TO DO IT OR 3217 02:01:40,259 --> 02:01:43,829 NOT, BASED UPON THEIR VALUES, 3218 02:01:43,896 --> 02:01:44,697 BASED UPON THEIR PERSPECTIVES, 3219 02:01:44,764 --> 02:01:47,099 ALLOWS FAMILIES TO THINK ABOUT 3220 02:01:47,166 --> 02:01:47,299 THIS. 3221 02:01:47,366 --> 02:01:48,634 I THINK THERE'S A LOT OF 3222 02:01:48,701 --> 02:01:50,302 OPPORTUNITY TO DO THIS. 3223 02:01:50,369 --> 02:01:55,841 I THINK IT REQUIRES SOME 3224 02:01:55,908 --> 02:01:57,076 EMPIRICAL RESEARCH ENGAGEMENT 3225 02:01:57,143 --> 02:01:58,611 UNDERSTANDING WHAT OTHERS ARE 3226 02:01:58,678 --> 02:01:59,078 THINKING. 3227 02:01:59,145 --> 02:02:00,880 I WOULDN'T SAY IT'S WIDESPREAD 3228 02:02:00,946 --> 02:02:05,618 AS APPROACH BUT ONE I FEEL IS A 3229 02:02:05,685 --> 02:02:07,153 GOOD APPROACH, IT'S SOMETHING TO 3230 02:02:07,219 --> 02:02:08,120 THINK ABOUT DECISION MAKING, TO 3231 02:02:08,187 --> 02:02:12,425 ME THIS IS A WAY OF TRYING TO 3232 02:02:12,491 --> 02:02:16,562 TAKE SOME OF THIS COMPLEX AND 3233 02:02:16,629 --> 02:02:19,432 TRYING TO IDENTIFY THE POLES AND 3234 02:02:19,498 --> 02:02:21,233 REASONS, EVEN IF NOT CAPTURING 3235 02:02:21,300 --> 02:02:23,169 EVERYTHING, SOMETHING TO ANCHOR 3236 02:02:23,235 --> 02:02:24,336 ON, OTHERWISE THEY ARE OFTEN 3237 02:02:24,403 --> 02:02:24,970 ADRIFT. 3238 02:02:25,037 --> 02:02:26,872 HOW DO I THINK ABOUT THIS? 3239 02:02:26,939 --> 02:02:30,810 I'M NOT SURE WHAT TO DO NEXT. 3240 02:02:30,876 --> 02:02:33,012 >> I THINK THE CONCEPT IS 3241 02:02:33,079 --> 02:02:34,647 HELPFUL OF GIVING PEOPLE LIKE 3242 02:02:34,714 --> 02:02:36,182 HERE'S SOME MAIN REASONS PEOPLE 3243 02:02:36,248 --> 02:02:37,483 DO THIS, HERE'S SOME MAIN 3244 02:02:37,550 --> 02:02:38,918 REASONS PEOPLE DON'T. 3245 02:02:38,984 --> 02:02:40,453 THAT'S SUPER HELPFUL. 3246 02:02:40,519 --> 02:02:41,887 WHERE IT BECOMES MORE 3247 02:02:41,954 --> 02:02:44,290 COMPLICATED TO NAVIGATE IF THE 3248 02:02:44,356 --> 02:02:47,927 PROPOSAL IS SOMETHING MORE LIKE 3249 02:02:47,993 --> 02:02:48,661 PICKING FIVE NARRATIVES THAT 3250 02:02:48,728 --> 02:02:49,995 REPRESENT LIKE, YOU KNOW, PEOPLE 3251 02:02:50,062 --> 02:02:53,165 WHO DECIDE TO DO IT AND DON'T, 3252 02:02:53,232 --> 02:02:54,467 AND WHY THEY MIGHT, THE 3253 02:02:54,533 --> 02:02:56,335 BACKGROUND, THEN WE KNOW THERE'S 3254 02:02:56,402 --> 02:02:57,536 BIAS, SOMEBODY MIGHT IDENTIFY 3255 02:02:57,603 --> 02:02:59,171 WITH, OH, THIS PERSON LOOKS LIKE 3256 02:02:59,238 --> 02:03:00,706 ME, THEY COME FROM THE SAME 3257 02:03:00,773 --> 02:03:06,312 BACKGROUND AS ME, THAT SHOULD 3258 02:03:06,378 --> 02:03:09,715 NOT BE DRIVING THE DECISION 3259 02:03:09,782 --> 02:03:10,149 ULTIMATELY. 3260 02:03:10,216 --> 02:03:19,391 I WOULD SAY "YES AND," THAT THAT 3261 02:03:19,458 --> 02:03:21,794 APPROACH IS REALLY HELPFUL. 3262 02:03:21,861 --> 02:03:22,261 >> ADAM? 3263 02:03:22,328 --> 02:03:23,562 >> TWO QUICK COMMENTS AND A 3264 02:03:23,629 --> 02:03:25,765 QUESTION FOR FELLOW SPEAKERS. 3265 02:03:25,831 --> 02:03:30,002 FIRST COMMENT, AMY, WHEN YOU 3266 02:03:30,069 --> 02:03:31,403 MENTIONED ADHD AND ENHANCEMENT, 3267 02:03:31,470 --> 02:03:33,272 THAT QUESTION, AS SOMEONE WHO 3268 02:03:33,339 --> 02:03:38,210 TREATED A LOT PEOPLE WITH ADHD, 3269 02:03:38,277 --> 02:03:40,112 MY APPROACH, WE WANTED TO 3270 02:03:40,179 --> 02:03:42,081 TREAT -- THIS IS WITH MEDICATION 3271 02:03:42,148 --> 02:03:49,321 BUT APPLIES TO DEVICES TOO, TO 3272 02:03:49,388 --> 02:03:50,723 ANYTHING, TREAT JUST ENOUGH SO 3273 02:03:50,790 --> 02:03:53,425 THEY ARE FUNCTIONAL IN SCHOOL, 3274 02:03:53,492 --> 02:03:55,127 BECAUSE THERE ARE A LOT OF 3275 02:03:55,194 --> 02:03:57,730 POSITIVE THINGS ABOUT HAVING 3276 02:03:57,797 --> 02:04:02,101 ADHD AS WELL, AND THAT FINE LINE 3277 02:04:02,168 --> 02:04:02,568 IS DIFFERENT. 3278 02:04:02,635 --> 02:04:03,969 IT'S CHALLENGING, A POSITIVE 3279 02:04:04,036 --> 02:04:05,538 SENSE SCENARIO. 3280 02:04:05,604 --> 02:04:07,940 THE OTHER QUICK COMMENT WAS JUST 3281 02:04:08,007 --> 02:04:11,210 SO EVERYONE KNOWS WE HAVE A -- 3282 02:04:11,277 --> 02:04:14,480 I'LL PLUG NINDS HERE, WE HAVE A 3283 02:04:14,547 --> 02:04:15,815 FUNDING OPPORTUNITY FOR 3284 02:04:15,881 --> 02:04:16,682 PROSPECTIVE OBSERVATIONAL 3285 02:04:16,749 --> 02:04:18,684 STUDIES THAT CAN USE REAL WORLD 3286 02:04:18,751 --> 02:04:18,884 DATA. 3287 02:04:18,951 --> 02:04:21,320 THEY DO NEED TO BE OBVIOUSLY 3288 02:04:21,387 --> 02:04:26,792 PROBESSED AS A STUD -- PROPOSED 3289 02:04:26,859 --> 02:04:28,861 IN A WAY TO MAKE SENSE BUT HAPPY 3290 02:04:28,928 --> 02:04:30,062 TO TALK ABOUT THAT OFFLINE. 3291 02:04:30,129 --> 02:04:31,597 MY QUESTION FOR FELLOW 3292 02:04:31,664 --> 02:04:33,365 PANELISTS, IT GETS BACK TO THE 3293 02:04:33,432 --> 02:04:35,534 ORIGINAL PANEL WHAT'S UNIQUE 3294 02:04:35,601 --> 02:04:36,969 ABOUT PEDIATRICS, HOW DO YOU 3295 02:04:37,036 --> 02:04:40,139 THINK -- HOW DO WE FRAME THE 3296 02:04:40,206 --> 02:04:42,975 QUESTION OF THIS VARIABLE 3297 02:04:43,042 --> 02:04:43,309 RISK/BENEFIT. 3298 02:04:43,375 --> 02:04:45,611 SO IS IS AGE DEESCALATION ALWAYS 3299 02:04:45,678 --> 02:04:46,078 NECESSARY? 3300 02:04:46,145 --> 02:04:48,113 I'M HOPING THAT'S A USEFUL 3301 02:04:48,180 --> 02:04:50,850 QUESTION, USEFUL DISCUSSION FOR 3302 02:04:50,916 --> 02:04:52,718 MY FELLOW NIH STAFF AS WELL. 3303 02:04:52,785 --> 02:04:56,655 DO WE ALWAYS NEED TO DEESCALATE? 3304 02:04:56,722 --> 02:04:59,491 IF NOT HOW DO PRE-FRAME THAT, 3305 02:04:59,558 --> 02:05:00,159 APPROACH THAT, NOT LESS AEXPECT 3306 02:05:00,226 --> 02:05:10,302 AN AN NOT NECESSARILY EXPECT AN 3307 02:05:10,369 --> 02:05:10,703 ANSWER. 3308 02:05:10,769 --> 02:05:12,137 >> YOU SAID AGE DEESCALATION? 3309 02:05:12,204 --> 02:05:12,404 >> YES. 3310 02:05:12,471 --> 02:05:14,506 >> WHAT IS THAT? 3311 02:05:14,573 --> 02:05:15,808 >> YOU START WITH STUDIES IN 3312 02:05:15,875 --> 02:05:18,677 ADULTS, MARCH DOWN TO OLDER AND 3313 02:05:18,744 --> 02:05:21,247 YOUNGER ADOLESCENTS. 3314 02:05:21,313 --> 02:05:22,147 >> OH, AGE, OKAY. 3315 02:05:22,214 --> 02:05:23,582 >> IS THAT ALWAYS NECESSARY, OR 3316 02:05:23,649 --> 02:05:26,619 IS THERE A SITUATION WHERE IT'S 3317 02:05:26,685 --> 02:05:28,621 CLEAR THAT THE RISK/BENEFIT IS 3318 02:05:28,687 --> 02:05:29,555 VARIABLE, GOING BACK TO THE 3319 02:05:29,622 --> 02:05:31,257 GRAPH I PRESENTED IN THE CASE. 3320 02:05:31,323 --> 02:05:33,325 HOW DO YOU FRAME THE QUESTIONS 3321 02:05:33,392 --> 02:05:36,929 ABOUT SKIPPING THAT OR AT LEAST 3322 02:05:36,996 --> 02:05:37,830 MODIFYING THAT. 3323 02:05:37,897 --> 02:05:42,301 THAT WAS FOR BEN, YOU, AND 3324 02:05:42,368 --> 02:05:42,501 JENNY. 3325 02:05:42,568 --> 02:05:50,242 >> WE'LL START WITH BEN. 3326 02:05:50,309 --> 02:05:51,744 >> I ACTUALLY -- I THINK THE WAY 3327 02:05:51,810 --> 02:05:54,713 TO FRAME THE QUESTION IS TO ASK 3328 02:05:54,780 --> 02:05:56,282 ARE THERE GOOD REASONS TO 3329 02:05:56,348 --> 02:05:58,651 BELIEVE THAT THE RISK/BENEFIT 3330 02:05:58,717 --> 02:06:00,486 PROFILE WILL BE DIFFERENT AND 3331 02:06:00,552 --> 02:06:01,921 OFTEN THERE ARE. 3332 02:06:01,987 --> 02:06:03,322 I THINK WE SHOULD HAVE -- I 3333 02:06:03,389 --> 02:06:05,557 DON'T THINK WE SHOULD ASSUME 3334 02:06:05,624 --> 02:06:07,927 THERE'S A -- PERHAPS THERE'S 3335 02:06:07,993 --> 02:06:09,595 DOGMA OF AGE DEESCALATION, AND I 3336 02:06:09,662 --> 02:06:12,197 THINK FOR MANY YEARS I THINK IT 3337 02:06:12,264 --> 02:06:15,935 BECOMES PROBLEMATIC BECAUSE IT'S 3338 02:06:16,001 --> 02:06:17,870 NOT UNIQUE TO AGAIN PULMONARY AS 3339 02:06:17,937 --> 02:06:18,971 WELL, OFTEN THERE ARE 3340 02:06:19,038 --> 02:06:20,639 DIFFERENCES IN DEVELOPING LUNG 3341 02:06:20,706 --> 02:06:22,942 AT EARLIER TIMING THAT THE 3342 02:06:23,008 --> 02:06:28,080 THINGS ARE -- BENEFITS AND RISKS 3343 02:06:28,147 --> 02:06:29,181 ARE DIFFERENT INCLUDING 3344 02:06:29,248 --> 02:06:30,816 BENEFITS, ONE CONCEPTUAL RISK OF 3345 02:06:30,883 --> 02:06:32,818 AGE DEESCALATION IS THAT WE FAIL 3346 02:06:32,885 --> 02:06:34,219 TO APPRECIATE WHAT BENEFITS ARE, 3347 02:06:34,286 --> 02:06:36,188 ONLY WHEN WE DID THEM IN THE 3348 02:06:36,255 --> 02:06:38,624 EARLIER TRIALS THAT WE CAN DO 3349 02:06:38,691 --> 02:06:38,824 THAT. 3350 02:06:38,891 --> 02:06:42,027 SO I THINK IN TERMS OF PEDIATRIC 3351 02:06:42,094 --> 02:06:43,662 ISSUE I THINK WE SHOULD BE 3352 02:06:43,729 --> 02:06:44,630 LOOKING CRITICALLY AT THAT. 3353 02:06:44,697 --> 02:06:49,435 AND WE SHOULD BE LOOKING FOR 3354 02:06:49,501 --> 02:06:50,703 WHEN THERE ARE GOOD REASONS TO 3355 02:06:50,769 --> 02:06:53,172 NOT DO THAT AS LONG AS WE HAVE 3356 02:06:53,238 --> 02:06:54,306 SOME BASELINE INFORMATION ABOUT 3357 02:06:54,373 --> 02:06:56,342 SAFETY IN GENERAL THAT WE 3358 02:06:56,408 --> 02:06:57,977 SHOULDN'T HAVE TO PUT SAFETY ALL 3359 02:06:58,043 --> 02:06:59,078 THE WAY DOWN THE LINE TO 3360 02:06:59,144 --> 02:07:03,882 UNDERSTAND HOW THIS CAN BE 3361 02:07:03,949 --> 02:07:04,350 IMPACTFUL. 3362 02:07:04,416 --> 02:07:08,620 >> YEAH, I GET CONCERNED FROM 3363 02:07:08,687 --> 02:07:09,922 THE PERSPECTIVE OF A COMPANY 3364 02:07:09,989 --> 02:07:15,394 DECIDING WHERE TO PUT, IN OUR 3365 02:07:15,461 --> 02:07:16,261 CASE, LIMITED RESOURCES. 3366 02:07:16,328 --> 02:07:21,367 THE PROBLEM IS, YOU KNOW, IT IT 3367 02:07:21,433 --> 02:07:26,472 CAN BE A DECADE OR LONGER BEFORE 3368 02:07:26,538 --> 02:07:29,575 A SIMILAR TYPE OF CLINICAL 3369 02:07:29,641 --> 02:07:34,580 TRIALS DONE FOR A PEDIATRIC 3370 02:07:34,646 --> 02:07:38,283 THERAPY, AND THAT IS SO -- IT'S 3371 02:07:38,350 --> 02:07:43,756 JUST UNACCEPTABLY LONG, I THINK. 3372 02:07:43,822 --> 02:07:48,360 AND SO PERHAPS THE BAR FOR WHAT 3373 02:07:48,427 --> 02:07:49,328 IS ACCEPTABLE SAFETY INFORMATION 3374 02:07:49,395 --> 02:07:52,197 SHOULD BE LIKE REALLY LOW TO 3375 02:07:52,264 --> 02:07:55,467 START TO INTRODUCE TO A 3376 02:07:55,534 --> 02:08:01,140 PEDIATRIC POPULATION BUT WITH 3377 02:08:01,206 --> 02:08:02,207 VIGILANCE OVERSIGHT. 3378 02:08:02,274 --> 02:08:03,675 VIGILANT OVERSIGHT. 3379 02:08:03,742 --> 02:08:04,676 WE DEAL WITH A CONDITION, ADAM 3380 02:08:04,743 --> 02:08:07,279 AND I DO, RISK OF SUDDEN DEATH 3381 02:08:07,346 --> 02:08:10,816 IS VERY HIGH. 3382 02:08:10,883 --> 02:08:14,987 WHERE KIDS' SELF-IDENTITY CAN BE 3383 02:08:15,054 --> 02:08:15,487 DESTROYED. 3384 02:08:15,554 --> 02:08:16,088 AND NEVER RECORD. 3385 02:08:16,155 --> 02:08:18,390 WE FIND IN OUR STUDIES IF PEOPLE 3386 02:08:18,457 --> 02:08:20,759 ARE TREATED WITHIN TEN YEARS OF 3387 02:08:20,826 --> 02:08:21,460 DIAGNOSIS THERE'S BIG 3388 02:08:21,527 --> 02:08:22,861 IMPROVEMENT IN QUALITY OF LIFE. 3389 02:08:22,928 --> 02:08:25,097 IF THEY ARE TREATED AFTER 20 3390 02:08:25,164 --> 02:08:28,767 YEARS, EVEN WITH THE SAME 3391 02:08:28,834 --> 02:08:29,635 REDUCTION FEATURES THEY NEVER 3392 02:08:29,701 --> 02:08:31,270 GET A BETTER QUALITY OF LIFE. 3393 02:08:31,336 --> 02:08:36,008 THEY HAVE LOST THAT WINDOW. 3394 02:08:36,075 --> 02:08:38,210 I THINK A DECADE, THAT'S A TIME 3395 02:08:38,277 --> 02:08:39,445 DURING WHICH A LOT OF KIDS ARE 3396 02:08:39,511 --> 02:08:44,950 GOING TO BE OUT OF THAT WINDOW. 3397 02:08:45,017 --> 02:08:46,285 >> AND TECHNOLOGY HAS CHANGED A 3398 02:08:46,351 --> 02:08:48,253 TON IN TEN YEARS, YOU'RE GOING 3399 02:08:48,320 --> 02:08:49,888 TO DO A VERY DIFFERENT KIND OF 3400 02:08:49,955 --> 02:08:50,222 STUDY. 3401 02:08:50,289 --> 02:08:51,957 >> THAT'S TRUE. 3402 02:08:52,024 --> 02:08:54,793 >> FOR ME IT'S REALLY THINKING 3403 02:08:54,860 --> 02:08:59,731 ABOUT THE HARMS OF THE AGE 3404 02:08:59,798 --> 02:09:02,334 DEESCALATION, AND AGAIN IT MAKES 3405 02:09:02,401 --> 02:09:03,569 SENSE THAT WE GRAVITATE TO THE 3406 02:09:03,635 --> 02:09:05,737 IDEA OF WANTING TO PROTECT KIDS, 3407 02:09:05,804 --> 02:09:07,172 RATCHETING DOWN, BUT THAT IS A 3408 02:09:07,239 --> 02:09:10,642 KIND OF ETHICAL HUER I.ISTIC BUT 3409 02:09:10,709 --> 02:09:12,711 IF WE THINK ABOUT THE GROUNDS, 3410 02:09:12,778 --> 02:09:14,847 IS IT OMISSION BY AS, LIKE A 3411 02:09:14,913 --> 02:09:16,048 PROTECTIONIST ETHIC WE SHOULD 3412 02:09:16,115 --> 02:09:17,883 HAVE LEARNED LESSONS ABOUT FROM 3413 02:09:17,950 --> 02:09:19,218 OTHER CONTEXTS, I THINK WE 3414 02:09:19,284 --> 02:09:24,456 SHOULD HAVE A HEALTHY SKEPTICISM 3415 02:09:24,523 --> 02:09:25,357 ABOUT THAT NOTION. 3416 02:09:25,424 --> 02:09:29,294 >> EVERY CASE IS GOING TO BE 3417 02:09:29,361 --> 02:09:33,365 SLIGHTLY DIFFERENT, EVERY 3418 02:09:33,432 --> 02:09:35,300 DISEASE/STUDY, WHATEVER. 3419 02:09:35,367 --> 02:09:35,467 JEN? 3420 02:09:35,534 --> 02:09:36,201 >> THANKS. 3421 02:09:36,268 --> 02:09:37,936 WHAT A GREAT DISCUSSION. 3422 02:09:38,003 --> 02:09:40,772 I WANTED TO BACK TO THE 3423 02:09:40,839 --> 02:09:42,941 POST-TRIAL OBLIGATION, A TOPIC 3424 02:09:43,008 --> 02:09:44,943 FOR THIS AFTERNOON, A LITTLE BIT 3425 02:09:45,010 --> 02:09:52,384 LATER BUT NIGHT BE AMPLIFIED IN 3426 02:09:52,451 --> 02:09:53,352 THE PEDIATRIC SPACE. 3427 02:09:53,418 --> 02:09:57,089 TO JENNY IN TERMS OF DECISION 3428 02:09:57,156 --> 02:09:59,091 TREES DO YOU HAVE REFERENCE 3429 02:09:59,158 --> 02:10:00,492 ABOUT DECISION MAKING FOR TRIALS 3430 02:10:00,559 --> 02:10:02,027 IN REGARD TO WHAT HAPPENS ONCE 3431 02:10:02,094 --> 02:10:03,662 THE TRIAL IS OVER WITH? 3432 02:10:03,729 --> 02:10:05,631 WE FOCUS A LOT ON RISK/BENEFIT 3433 02:10:05,697 --> 02:10:11,103 DECISION AT THE BEGINNING OF THE 3434 02:10:11,170 --> 02:10:12,504 TRIAL AND I'M WONDERING IF 3435 02:10:12,571 --> 02:10:14,473 THERE'S DECISION TREE OR 3436 02:10:14,540 --> 02:10:15,574 DECISION MODELS FOR PEOPLE 3437 02:10:15,641 --> 02:10:16,441 PARTICIPATING BECAUSE OF WHAT 3438 02:10:16,508 --> 02:10:19,411 HAPPENS AFTER THE TRIAL AND MY 3439 02:10:19,478 --> 02:10:20,846 SECOND QUESTION IS DIRECTED TO 3440 02:10:20,913 --> 02:10:24,449 MARTY BUT SOME OTHER PANELISTS 3441 02:10:24,516 --> 02:10:29,154 AS WELL, IN TERMS OF OUR -- POST 3442 02:10:29,221 --> 02:10:30,822 TRIALS WE SAY WHO IS GOING TO 3443 02:10:30,889 --> 02:10:32,558 PAY FOR IT, RIGHT? 3444 02:10:32,624 --> 02:10:35,727 I WONDER IF DEVICES IF WE HAVE A 3445 02:10:35,794 --> 02:10:37,062 UNIQUE OPPORTUNITY WHERE WE CAN 3446 02:10:37,129 --> 02:10:38,030 GATHER REAL WORLD DATA AND 3447 02:10:38,096 --> 02:10:40,432 THERE'S GOT TO BE VALUE TO THAT. 3448 02:10:40,499 --> 02:10:42,301 WHY ARE WE NOT VALUING IT? 3449 02:10:42,367 --> 02:10:44,836 I WANTED TO THROW THAT OUT TO 3450 02:10:44,903 --> 02:10:48,006 THE PANEL AS WELL, I'LL START 3451 02:10:48,073 --> 02:10:48,774 WITH JENNY. 3452 02:10:48,840 --> 02:10:51,944 >> I'LL POP HIS NAME IN THE 3453 02:10:52,010 --> 02:10:53,812 CHAT, MY COLLEAGUE GABE HAS DONE 3454 02:10:53,879 --> 02:10:56,448 WORK ON POST TRIAL OBLIGATIONS 3455 02:10:56,515 --> 02:10:57,316 INCLUDING PEDIATRIC CONTEXT. 3456 02:10:57,382 --> 02:11:01,787 HIS WORK IS GREAT TO CHECK OUT. 3457 02:11:01,853 --> 02:11:02,988 I'LL DROP HIS NAME IS. 3458 02:11:03,055 --> 02:11:06,491 >> I WANT TO MAKE A COUPLE 3459 02:11:06,558 --> 02:11:08,594 COMMENTS. 3460 02:11:08,660 --> 02:11:16,668 CMS IS VERY HELPFUL IN DIRECTING 3461 02:11:16,735 --> 02:11:17,536 DECISIONS THAT INSURERS MAKE. 3462 02:11:17,603 --> 02:11:24,443 MOST LARGE ONES WILL FOLLOW CMS 3463 02:11:24,509 --> 02:11:25,777 N A PATRIOTIC SITUATION CMS WILL 3464 02:11:25,844 --> 02:11:26,778 NOT MAKE A DECISION BECAUSE 3465 02:11:26,845 --> 02:11:28,280 WE'RE NOT TALKING ABOUT A 3466 02:11:28,347 --> 02:11:29,414 MEDICARE POPULATION SO THERE'S 3467 02:11:29,481 --> 02:11:31,783 NO ONE TO SET THE STANDARD AND 3468 02:11:31,850 --> 02:11:35,220 WHEN WE STARTED OUR PEDIATRIC 3469 02:11:35,287 --> 02:11:38,290 TRIALS MANY OF THE INSURERS AND 3470 02:11:38,357 --> 02:11:41,193 CENTERS SAID WHAT IS CMS' POLICY 3471 02:11:41,260 --> 02:11:41,460 DECISION? 3472 02:11:41,526 --> 02:11:47,666 THERE ISN'T ONE, OF COURSE. 3473 02:11:47,733 --> 02:11:52,404 BUT GETTING TO THE POINT ABOUT 3474 02:11:52,471 --> 02:11:54,172 REAL WORLD DAD, DEVICES ARE 3475 02:11:54,239 --> 02:11:55,240 DIFFERENT THAN DRUGS BECAUSE WE 3476 02:11:55,307 --> 02:11:57,876 KNOW WHO THE PATIENTS ARE. 3477 02:11:57,943 --> 02:11:59,745 AND WE CONTINUE TO FOLLOW THEM. 3478 02:11:59,811 --> 02:12:05,884 SO THERE IS A VISIBILITY THAT 3479 02:12:05,951 --> 02:12:07,219 REALLY ENHANCES THE ABILITY TO 3480 02:12:07,286 --> 02:12:07,753 GET TRIAL DATA. 3481 02:12:07,819 --> 02:12:10,188 IN THE CASE OF OUR DEVICE AND 3482 02:12:10,255 --> 02:12:12,924 OTHER DEVICES THERE IS BRAIN 3483 02:12:12,991 --> 02:12:15,560 DATA BEING COLLECTED AND STORED 3484 02:12:15,627 --> 02:12:20,032 SECURELY BUT IT'S STORED. 3485 02:12:20,098 --> 02:12:21,433 AND MOST PATIENTS OPT TO ALLOW 3486 02:12:21,500 --> 02:12:23,335 THAT BRAIN DATA TO BE EVALUATED 3487 02:12:23,402 --> 02:12:25,704 TO BENEFIT THE INDIVIDUAL BUT 3488 02:12:25,771 --> 02:12:27,172 ALSO TO APPLY TO GREATER 3489 02:12:27,239 --> 02:12:29,007 UNDERSTANDING OF THE DEVICE. 3490 02:12:29,074 --> 02:12:33,845 SO THERE IS AN OPPORTUNITY WITH 3491 02:12:33,912 --> 02:12:36,014 DEVICES THAT YOU DON'T REALLY 3492 02:12:36,081 --> 02:12:41,119 HAVE WITH DRUGS. 3493 02:12:47,125 --> 02:12:47,759 >> GREAT. 3494 02:12:47,826 --> 02:12:47,993 SASKIA? 3495 02:12:48,060 --> 02:12:50,228 >> THANK YOU FOR A TERRIFIC 3496 02:12:50,295 --> 02:12:50,429 PANEL. 3497 02:12:50,495 --> 02:12:56,234 I THINK I JUST HAVE A COMMENT 3498 02:12:56,301 --> 02:12:59,604 AND QUESTION AND WE CAN TACKLE 3499 02:12:59,671 --> 02:13:01,707 IN THE LATER SESSION. 3500 02:13:01,773 --> 02:13:04,976 SO MY COMMENT WAS JUST TO REMIND 3501 02:13:05,043 --> 02:13:06,978 LISTENERS WHO ARE MAYBE LESS 3502 02:13:07,045 --> 02:13:10,148 WELL VERSED IN SOME OF THE 3503 02:13:10,215 --> 02:13:13,452 REGULATIONS ABOUT RESEARCH, THAT 3504 02:13:13,518 --> 02:13:16,621 A LOT OF THIS DISCUSSION IS 3505 02:13:16,688 --> 02:13:22,627 ASSUMING PROTECTIONS IN PLACE IN 3506 02:13:22,694 --> 02:13:26,131 THE RESEARCH REGS THAT LIMIT 3507 02:13:26,198 --> 02:13:27,199 RISKS, SOME ARE ASSUMING 3508 02:13:27,265 --> 02:13:29,601 REGULATORY PROTECTION THAT ARE 3509 02:13:29,668 --> 02:13:30,402 IN PLACE. 3510 02:13:30,469 --> 02:13:33,105 THE OTHER QUESTION THAT I HAD 3511 02:13:33,171 --> 02:13:36,274 WAS -- AND WE MIGHT TACKLE THIS 3512 02:13:36,341 --> 02:13:39,444 IN THE NEXT SESSION, IS WHAT IF 3513 02:13:39,511 --> 02:13:41,780 ANY NEUROETHICS RESEARCH SHOULD 3514 02:13:41,847 --> 02:13:48,353 WE BE DOING TO SUPPORT THIS 3515 02:13:48,420 --> 02:13:50,555 FUTURE TRIALS IN TERMS OF 3516 02:13:50,622 --> 02:13:52,391 NEUROSTIMULATION IN CHILDREN? 3517 02:13:52,457 --> 02:13:54,926 IS THERE A NEED FOR -- WE'VE 3518 02:13:54,993 --> 02:13:59,197 HEARD ABOUT COMMUNITY 3519 02:13:59,264 --> 02:14:01,066 ENGAGEMENT, ABOUT RESEARCH WITH 3520 02:14:01,133 --> 02:14:02,167 PERHAPS OTHER STAKEHOLDERS ABOUT 3521 02:14:02,234 --> 02:14:04,136 INFORMED CONSENT. 3522 02:14:04,202 --> 02:14:06,438 ARE THERE OTHER NEUROETHICS 3523 02:14:06,505 --> 02:14:07,939 STUDIES WE NEED IN ORDER TO 3524 02:14:08,006 --> 02:14:11,643 CONDUCT THESE TYPES OF TRIALS IN 3525 02:14:11,710 --> 02:14:16,815 THE MOST ETHICALLY APPROPRIATE 3526 02:14:16,882 --> 02:14:17,616 WAY? 3527 02:14:17,682 --> 02:14:18,049 >> GREAT QUESTION. 3528 02:14:18,116 --> 02:14:24,689 CERTAINLY BEN RAISED SOME IDEAS 3529 02:14:24,756 --> 02:14:25,323 EARLIER ABOUT COMMUNITY 3530 02:14:25,390 --> 02:14:27,993 ENGAGEMENT WORK. 3531 02:14:28,059 --> 02:14:30,695 >> I'LL ADD ONE THING. 3532 02:14:30,762 --> 02:14:33,331 I THINK ONE WAY OF ADDRESSING 3533 02:14:33,398 --> 02:14:37,936 YOUR QUESTION, SASKIA, IS ALSO 3534 02:14:38,003 --> 02:14:38,804 THROUGH COMMUNITY ENGAGEMENT, 3535 02:14:38,870 --> 02:14:43,508 FINDING OUT ISSUES THEY ARE 3536 02:14:43,575 --> 02:14:44,910 STRUGGLING WITH. 3537 02:14:44,976 --> 02:14:46,812 I ALSO THINK, I MADE THIS 3538 02:14:46,878 --> 02:14:50,849 COMMENT BUT I WANT TO SAY THIS 3539 02:14:50,916 --> 02:14:53,485 MORE EXPLICITLY, I THINK THE 3540 02:14:53,552 --> 02:14:55,821 OPPORTUNITY WHEN TRIALS ARE 3541 02:14:55,887 --> 02:15:00,525 BEING CONDUCTED TO BE 3542 02:15:00,592 --> 02:15:01,726 SIMULTANEOUSLY ENGAGING, TRYING 3543 02:15:01,793 --> 02:15:04,229 TO NOT GET -- UNDERSTANDING MORE 3544 02:15:04,296 --> 02:15:05,564 ABOUT MOST PEOPLE'S EXPERIENCE 3545 02:15:05,630 --> 02:15:06,765 DOING RESEARCH WITH THEM, 3546 02:15:06,832 --> 02:15:08,834 ENGAGING THEM ABOUT ISSUES THEY 3547 02:15:08,900 --> 02:15:10,802 ARE FACING CAN BE DONE IN THE 3548 02:15:10,869 --> 02:15:13,638 CONTEXT OF THOSE TRIALS AS AN 3549 02:15:13,705 --> 02:15:17,909 OPPORTUNITY TO LEARN MORE SO I 3550 02:15:17,976 --> 02:15:19,878 THINK THAT KIND OF -- I WISH 3551 02:15:19,945 --> 02:15:22,347 MORE STUDIES WERE LIKE THIS, NOT 3552 02:15:22,414 --> 02:15:24,382 JUST STUDYING BIOLOGY BUT THE 3553 02:15:24,449 --> 02:15:26,885 SOCIAL DIMENSION OF THE 3554 02:15:26,952 --> 02:15:27,986 INTERVENTIONS AND WE ARE SEEING 3555 02:15:28,053 --> 02:15:32,491 THAT HAPPENING MORE AND MORE. 3556 02:15:32,557 --> 02:15:34,893 THAT'S THE DIRECTION I LIKE TO 3557 02:15:34,960 --> 02:15:44,636 SEE THINGS GO. 3558 02:15:44,703 --> 02:15:44,936 >> GREAT. 3559 02:15:45,003 --> 02:15:45,570 JENNY? 3560 02:15:45,637 --> 02:15:46,872 >> THE NOTION OF NEUROETHICS 3561 02:15:46,938 --> 02:15:47,906 IMPLEMENTATION RESEARCH, I DON'T 3562 02:15:47,973 --> 02:15:49,674 KNOW IF THAT'S A THING BUT IT'S 3563 02:15:49,741 --> 02:15:51,743 JUST SOME OF THE IDEAS WE'RE 3564 02:15:51,810 --> 02:15:54,913 TALKING THROUGH WE HAVE -- THOSE 3565 02:15:54,980 --> 02:15:57,549 WHO DO NEUROETHICS RESEARCH, YOU 3566 02:15:57,616 --> 02:16:01,052 KNOW, WE DO ENGAGE WITH 3567 02:16:01,119 --> 02:16:01,720 COMMUNITY STAKEHOLDERS AND 3568 02:16:01,786 --> 02:16:02,954 PATIENTS AND LEARN WHAT'S ON 3569 02:16:03,021 --> 02:16:04,856 THEIR MIND BUT I DON'T KNOW HOW 3570 02:16:04,923 --> 02:16:08,059 MUCH THAT GETS CARRIED OVER, AND 3571 02:16:08,126 --> 02:16:10,295 SO IF THERE'S LIKE A RESEARCH 3572 02:16:10,362 --> 02:16:12,330 MECHANISM THAT COULD BE 3573 02:16:12,397 --> 02:16:13,965 DEVELOPED AROUND LIKE 3574 02:16:14,032 --> 02:16:15,166 IMPLEMENTATION, LIKE IN THE 3575 02:16:15,233 --> 02:16:16,468 DECISION SCIENCES FOR EXAMPLE IF 3576 02:16:16,535 --> 02:16:18,670 THAT DOESN'T ALREADY EXIST THAT 3577 02:16:18,737 --> 02:16:21,640 COULD BE REALLY USEFUL. 3578 02:16:21,706 --> 02:16:22,007 >> THANK YOU. 3579 02:16:22,073 --> 02:16:25,143 IN THE INTEREST OF TIME I WANT 3580 02:16:25,210 --> 02:16:28,213 TO SUM UP AND THANK THE 3581 02:16:28,280 --> 02:16:29,614 PRESENTERS, WHO WERE WONDERFUL. 3582 02:16:29,681 --> 02:16:31,483 EACH BROUGHT INTERESTING THINGS 3583 02:16:31,550 --> 02:16:32,183 TO THINK ABOUT. 3584 02:16:32,250 --> 02:16:34,019 THANK YOU FOR BEING HERE AND FOR 3585 02:16:34,085 --> 02:16:36,388 BEING PART OF THE CONVERSATION. 3586 02:16:36,454 --> 02:16:37,455 I THANK THERESA FOR MODERATING 3587 02:16:37,522 --> 02:16:39,891 THE FIRST HALF OF THE PANEL AND 3588 02:16:39,958 --> 02:16:45,263 SAY IT SEEMS LIKE THEMES ARE, 3589 02:16:45,330 --> 02:16:46,665 ONE, SOMETHING THAT ADAM STARTED 3590 02:16:46,731 --> 02:16:48,333 WITH WE SHOULD BE PROTECTING 3591 02:16:48,400 --> 02:16:50,302 CHILDREN THROUGH RESEARCH, NOT 3592 02:16:50,368 --> 02:16:51,836 FROM RESEARCH. 3593 02:16:51,903 --> 02:16:54,039 AND THIS APPLIES TO 3594 02:16:54,105 --> 02:16:54,806 NEUROSTIMULATION RESEARCH AS 3595 02:16:54,873 --> 02:17:02,280 WELL AS ANY OTHER KIND AND BE 3596 02:17:02,347 --> 02:17:04,549 THOUGHTFUL ABOUT THE KNEE-JERK 3597 02:17:04,616 --> 02:17:05,984 INSTINCTS, ADULTS BEFORE KIDS, 3598 02:17:06,051 --> 02:17:11,256 OLDER KIDS BEFORE YOUNGER KIDS, 3599 02:17:11,323 --> 02:17:15,961 ALL THOSE THINGS WE DO OUT OF 3600 02:17:16,027 --> 02:17:17,629 HABIT, WE NEED REASONS. 3601 02:17:17,696 --> 02:17:20,899 WE NEED REASONS TO MAKE THOSE 3602 02:17:20,966 --> 02:17:24,803 DETERMINATIONS IN EVERY CASE. 3603 02:17:24,869 --> 02:17:27,205 I THINK PEOPLE TALKED ABOUT 3604 02:17:27,272 --> 02:17:29,207 ACCOMMODATIONS TO INCLUDE PEOPLE 3605 02:17:29,274 --> 02:17:31,476 WITH OTHERWISE DIFFICULT SOCIAL 3606 02:17:31,543 --> 02:17:34,746 CIRCUMSTANCES TO MAKE IT HARD TO 3607 02:17:34,813 --> 02:17:37,048 PARTICIPATE, BEN GAVE IDEAS 3608 02:17:37,115 --> 02:17:37,949 ABOUT ASSENT. 3609 02:17:38,016 --> 02:17:40,452 I STILL THINK WE WANT TO ANSWER 3610 02:17:40,518 --> 02:17:43,088 THE QUESTION WHAT HAPPENS IF A 3611 02:17:43,154 --> 02:17:45,357 YOUNG CHILD WANTS THE DEVICE OUT 3612 02:17:45,423 --> 02:17:51,596 AND PARENTS DON'T. 3613 02:17:51,663 --> 02:17:52,831 THAT'S A HARD SITUATION. 3614 02:17:52,897 --> 02:17:55,133 HOPEFULLY WE'LL SUMMARIZE THIS 3615 02:17:55,200 --> 02:17:56,868 IN A USEFUL WAY AND HAVE MORE 3616 02:17:56,935 --> 02:17:59,304 CONVERSATION WHAT WE CAN DO IF 3617 02:17:59,371 --> 02:17:59,638 ANYTHING. 3618 02:17:59,704 --> 02:18:01,673 SO THANK YOU ALL. 3619 02:18:01,740 --> 02:18:03,441 I THINK IT'S ABOUT TIME TO TAKE 3620 02:18:03,508 --> 02:18:06,811 A BREAK. 3621 02:18:06,878 --> 02:18:12,717 SHOULD I SAY 15 MINUTES, NITA, 3622 02:18:12,784 --> 02:18:15,787 OR MORE? 3623 02:18:15,854 --> 02:18:18,089 >> WE'RE AHEAD OF SCHEDULE SO WE 3624 02:18:18,156 --> 02:18:19,858 CAN GIVE MORE. 3625 02:18:19,924 --> 02:18:25,997 >> LET'S COME BACK AT 2:35. 3626 02:18:26,064 --> 02:18:27,399 >> WE'RE LOOKING FORWARD TO THE 3627 02:18:27,465 --> 02:18:31,036 NEXT SET OF SPEAKERS AND 3628 02:18:31,102 --> 02:18:33,104 CONVERSATION, DOING HORIZON 3629 02:18:33,171 --> 02:18:35,407 SCANNING ON EMERGING 3630 02:18:35,473 --> 02:18:36,941 OPPORTUNITIES IN NEUROETHICS 3631 02:18:37,008 --> 02:18:38,243 RESEARCH, TRYING TO LOOK A 3632 02:18:38,309 --> 02:18:39,878 LITTLE BIT TO BOTH THE FUTURE 3633 02:18:39,944 --> 02:18:43,281 AND TO SEE WHAT SHOULD BE ON THE 3634 02:18:43,348 --> 02:18:45,150 AGENDA FOR NEW GOING FORWARD. 3635 02:18:45,216 --> 02:18:47,652 WE HAVE THREE TERRIFIC PEOPLE 3636 02:18:47,719 --> 02:18:50,622 JOINING US FOR PRESENTATIONS 3637 02:18:50,689 --> 02:18:55,093 WHICH ARE DR. JOE FINS, ALEX 3638 02:18:55,160 --> 02:18:56,961 HUTH AND DR. TRISTAN McINTOSH. 3639 02:18:57,028 --> 02:19:00,899 I'M GOING TO INTRODUCE JOE FINS, 3640 02:19:00,965 --> 02:19:03,401 NO STRANGER TO EVERYONE HERE. 3641 02:19:03,468 --> 02:19:06,271 AND AFTER HE'S DONE I WILL 3642 02:19:06,337 --> 02:19:10,608 INTRODUCE OUR LATER SPEAKERS. 3643 02:19:10,675 --> 02:19:15,346 DR. JOSEPH FINS IS PROFESSOR OF 3644 02:19:15,413 --> 02:19:18,416 MEDICAL ETHICS, PROFESSOR OF 3645 02:19:18,483 --> 02:19:20,819 MEDICINE AT WEILL CORNELL 3646 02:19:20,885 --> 02:19:22,120 MEDICAL CENTER, NEW 3647 02:19:22,187 --> 02:19:23,354 YORK-PRESBYTERIAN, ATTENDING 3648 02:19:23,421 --> 02:19:30,028 PHYSICIAN AND DIRECTOR OF 3649 02:19:30,095 --> 02:19:32,197 MEDICAL ETHICS, IMMEDIATE PAST 3650 02:19:32,263 --> 02:19:34,499 PRESIDENT OF INTERNATIONAL 3651 02:19:34,566 --> 02:19:35,166 NEUROETHICS SOCIETY, SOMEBODY 3652 02:19:35,233 --> 02:19:42,507 WHO IS AN IMPORTANT FIGURE IN MY 3653 02:19:42,574 --> 02:19:43,775 LIFE, INSPIRATION AS WELL. 3654 02:19:43,842 --> 02:19:44,342 TAKE IT AWAY. 3655 02:19:44,409 --> 02:19:46,845 >> THANK YOU TO EVERYBODY FOR 3656 02:19:46,911 --> 02:19:48,713 THE GRACIOUS INVITATION TO BE 3657 02:19:48,780 --> 02:19:48,913 HERE. 3658 02:19:48,980 --> 02:19:50,815 I WAS LISTENING TO THE FIRST 3659 02:19:50,882 --> 02:19:52,884 HALF OF THE PROGRAM AND A LOT OF 3660 02:19:52,951 --> 02:19:54,953 WHAT I AM GOING TO SAY DOVETAILS 3661 02:19:55,019 --> 02:19:57,489 NICELY WITH WHAT YOU GUYS WERE 3662 02:19:57,555 --> 02:19:58,356 TALKING ABOUT. 3663 02:19:58,423 --> 02:19:59,991 AND HOPEFULLY THE SAME THING 3664 02:20:00,058 --> 02:20:04,062 WON'T HAPPEN TO MY SLIDES THAT 3665 02:20:04,129 --> 02:20:05,697 HAPPENED EARLIER TO OUR 3666 02:20:05,764 --> 02:20:06,898 COLLEAGUE'S SLIDES BUT I THINK 3667 02:20:06,965 --> 02:20:09,400 CAN YOU SEE MY SLIDES NOW? 3668 02:20:09,467 --> 02:20:10,402 YES, OKAY. 3669 02:20:10,468 --> 02:20:13,338 I'M GOING TO TALK ABOUT POST 3670 02:20:13,404 --> 02:20:15,406 TRIAL OBLIGATION AND DISABILITY 3671 02:20:15,473 --> 02:20:17,175 RIGHTS, A THEME THAT EMERGED 3672 02:20:17,242 --> 02:20:19,477 EARLIER, AND REFLECT ON THE 3673 02:20:19,544 --> 02:20:24,048 STUDY TALKED ABOUT IN THE 3674 02:20:24,115 --> 02:20:32,390 STIMULATION FOR TRAUMATIC BRAIN 3675 02:20:32,457 --> 02:20:35,760 INJURY, DRAWING ON EARLIER WORK. 3676 02:20:35,827 --> 02:20:37,061 BEN WAS TALKING ABOUT EMBEDDED 3677 02:20:37,128 --> 02:20:41,699 RESEARCH IN A TRIAL, EMBEDDED 3678 02:20:41,766 --> 02:20:43,968 RESEARCH IN THAT UH3, DONE 3679 02:20:44,035 --> 02:20:49,774 SIMULTANEOUSLY, AND THIS IS THE 3680 02:20:49,841 --> 02:20:57,415 "NATURE MEDICINE'S" PAPER, 3681 02:20:57,482 --> 02:21:00,385 IMPLANTED ELECTRODES IN THE 3682 02:21:00,451 --> 02:21:01,820 THALAMUS BILATERALLY AND FIVE 3683 02:21:01,886 --> 02:21:04,756 WHO COMPLETED HAD AT LEAST 10% 3684 02:21:04,823 --> 02:21:06,724 INCREASE IN TRAIL MARKING TEST 3685 02:21:06,791 --> 02:21:09,160 PART B, A MEASURE OF PROCESSING 3686 02:21:09,227 --> 02:21:09,360 SPEED. 3687 02:21:09,427 --> 02:21:13,965 TWO OF THE FIVE SUBJECTS HAD A 3688 02:21:14,032 --> 02:21:16,267 1-POINT INCREASE IN THE GHOSTY 3689 02:21:16,334 --> 02:21:19,304 SKILL IN THREE MONTHS OF 3690 02:21:19,370 --> 02:21:20,738 STIMULATION, THIS IS 3691 02:21:20,805 --> 02:21:22,707 TRACTOGRAPHY OF THE PROJECTIONS 3692 02:21:22,774 --> 02:21:25,543 FROM THE THALAMUS, EACH OF THE 3693 02:21:25,610 --> 02:21:26,778 FIVE SUBJECTS, DIFFERENT COLORS 3694 02:21:26,845 --> 02:21:29,581 SHOWS IT'S GOING TO THE FRONTAL 3695 02:21:29,647 --> 02:21:29,948 CORTEX. 3696 02:21:30,014 --> 02:21:33,852 THERE'S MORE TO BE SAID ABOUT 3697 02:21:33,918 --> 02:21:35,820 THE SCIENCE BUT I'LL FOCUS ON 3698 02:21:35,887 --> 02:21:36,487 THE NEUROETHICS. 3699 02:21:36,554 --> 02:21:38,990 I WANT TO TELL YOU HOW THIS WORK 3700 02:21:39,057 --> 02:21:39,858 GOT STARTED. 3701 02:21:39,924 --> 02:21:47,665 WE WERE PLANNING THE UH3 I SAID 3702 02:21:47,732 --> 02:21:48,967 TO MY COLLEAGUES, WHO SAID WHAT 3703 02:21:49,033 --> 02:21:50,401 HAPPENS IF THE SUBJECTS THINK 3704 02:21:50,468 --> 02:21:52,036 THEY ARE BETTER BUT THE DATA 3705 02:21:52,103 --> 02:21:53,137 DOESN'T MAKE IT? 3706 02:21:53,204 --> 02:21:55,840 OR WE DON'T HIT THE FDA 3707 02:21:55,907 --> 02:21:57,509 MILESTONES OF 10% IN THE 3708 02:21:57,575 --> 02:22:01,579 AGGREGATE BUT SOME DO AND SOME 3709 02:22:01,646 --> 02:22:03,748 DON'T, WHAT ABOUT VOICES OF THE 3710 02:22:03,815 --> 02:22:04,249 PARTICIPANTS? 3711 02:22:04,315 --> 02:22:04,883 ISN'T THERE KNOWLEDGE IN WHAT 3712 02:22:04,949 --> 02:22:06,851 THEY ARE SAYING? 3713 02:22:06,918 --> 02:22:08,786 WE'RE TALKING ABOUT SUBJECTIVE 3714 02:22:08,853 --> 02:22:09,287 EXPERIENCE. 3715 02:22:09,354 --> 02:22:10,321 MEANWHILE FOR THE LAST TEN YEARS 3716 02:22:10,388 --> 02:22:12,757 OR SO I'VE BEEN WORKING AT YALE 3717 02:22:12,824 --> 02:22:15,159 LAW SCHOOL ON DISABILITY LAW, 3718 02:22:15,226 --> 02:22:16,160 DISABILITY RIGHTS, AND THIS 3719 02:22:16,227 --> 02:22:18,429 STATEMENT WHICH CAME UP ALSO 3720 02:22:18,496 --> 02:22:19,764 THIS MORNING NOTHING ABOUT US 3721 02:22:19,831 --> 02:22:20,465 WITHOUT US. 3722 02:22:20,531 --> 02:22:25,136 IF WE'RE GOING TO DO THIS WITH 3723 02:22:25,203 --> 02:22:28,206 THESE COLLABORATORS, THEY WERE 3724 02:22:28,273 --> 02:22:28,973 CALLED PIONEERS, IF WE'RE GOING 3725 02:22:29,040 --> 02:22:31,042 TO BE ON THIS WAGON TRAIN WITH 3726 02:22:31,109 --> 02:22:32,477 THEM GOING ACROSS THE WEST WE 3727 02:22:32,543 --> 02:22:34,712 NEED TO KNOW WHAT THEY ARE 3728 02:22:34,779 --> 02:22:36,614 THINKING ABOUT. 3729 02:22:36,681 --> 02:22:39,584 AND SO WE WROTE A SUPPLEMENT SO 3730 02:22:39,651 --> 02:22:41,686 WE WOULDN'T LOSE ANY OF THE 3731 02:22:41,753 --> 02:22:44,322 DATA, I'M GRATEFUL TO JAY AND 3732 02:22:44,389 --> 02:22:47,392 CHURCHILL FOR HIS HELP WITH 3733 02:22:47,458 --> 02:22:48,493 ORCHESTRATING SOME EARLY WORK, 3734 02:22:48,559 --> 02:22:51,229 AND WE GOT A SUPPLEMENT SO WE 3735 02:22:51,296 --> 02:22:52,730 WOULDN'T LOSE DATA, INTERVIEWED 3736 02:22:52,797 --> 02:22:57,435 THE FIRST SUBJECT IN THE TRIAL. 3737 02:22:57,502 --> 02:23:00,405 WE GOT THIS RF1, REALLY AN R01 3738 02:23:00,471 --> 02:23:00,905 MECHANISM. 3739 02:23:00,972 --> 02:23:05,143 ONE, WE'VE BEEN TALKING ABOUT 3740 02:23:05,209 --> 02:23:06,477 REPRESENTATION THAT WHY THIS IS 3741 02:23:06,544 --> 02:23:08,212 IMPORTANT SO THESE FOLKS CAN 3742 02:23:08,279 --> 02:23:09,747 ARTICULATE THEIR REASONS AND WHY 3743 02:23:09,814 --> 02:23:15,219 THEY PARTICIPATE IN THE 3744 02:23:15,286 --> 02:23:16,321 PROBLEMS, STRENGTHS AND WEAKNESS 3745 02:23:16,387 --> 02:23:17,989 OF THE STUDY, ALSO THERE'S 3746 02:23:18,056 --> 02:23:19,724 SCIENTIFIC VALUE BECAUSE A LOT 3747 02:23:19,791 --> 02:23:22,994 OF WHAT THEY SAID WAS HYPOTHESIS 3748 02:23:23,061 --> 02:23:23,294 GENERATING. 3749 02:23:23,361 --> 02:23:25,063 THINGS WE DID NOT STUDY FORMALLY 3750 02:23:25,129 --> 02:23:27,498 IN THE STUDY WILL NOW BE 3751 02:23:27,565 --> 02:23:30,101 QUESTIONS THAT WE'RE GOING ASK 3752 02:23:30,168 --> 02:23:32,036 MORE SYSTEMATICALLY IN FUTURE 3753 02:23:32,103 --> 02:23:32,270 STUDIES. 3754 02:23:32,337 --> 02:23:35,473 SO IT'S NOT ONLY 3755 02:23:35,540 --> 02:23:37,709 REPRESENTATIONAL QUALITIES OF 3756 02:23:37,775 --> 02:23:39,010 GETTING A MORE CAPACIOUS VIEW 3757 02:23:39,077 --> 02:23:40,912 THROUGH NARRATIVE BUT ALSO THE 3758 02:23:40,979 --> 02:23:42,213 SCIENTIFIC VALUE. 3759 02:23:42,280 --> 02:23:47,552 THIS IS AN ARGUMENT FOR 3760 02:23:47,618 --> 02:23:49,554 EPISTEMIC PLURALISM AND STUDIES 3761 02:23:49,620 --> 02:23:51,055 THAT WITH MULTI-DIMENSIONAL. 3762 02:23:51,122 --> 02:23:52,890 IF YOU HAVE INSOMNIA AND YOU 3763 02:23:52,957 --> 02:23:55,693 NEED SOMETHING TO HELP YOU TO 3764 02:23:55,760 --> 02:23:58,863 SLEEP, I WROTE TWO PAPERS ABOUT 3765 02:23:58,930 --> 02:24:00,531 OUR NARRATIVES, VERY THICK 3766 02:24:00,598 --> 02:24:02,700 DESCRIPTIONS, EACH OF THESE 3767 02:24:02,767 --> 02:24:04,135 PAPERS ARE NEARLY 18,000 WORDS 3768 02:24:04,202 --> 02:24:04,469 EACH. 3769 02:24:04,535 --> 02:24:06,004 IN WHICH WE GIVE VOICE TO WHAT 3770 02:24:06,070 --> 02:24:07,939 THE PATIENTS AND THEIR SUBJECTS 3771 02:24:08,006 --> 02:24:13,578 AND THEIR FAMILIES SAID, PART 1 3772 02:24:13,644 --> 02:24:16,948 SUMMARIZES, IN CAMBRIDGE 3773 02:24:17,015 --> 02:24:18,249 QUARTERLY, SUMMARIZES 3774 02:24:18,316 --> 02:24:20,218 PREOPERATIVE NARRATIVES BEFORE 3775 02:24:20,284 --> 02:24:21,619 IMPLANTED, PART 2 IS 3776 02:24:21,686 --> 02:24:22,587 POSTOPERATIVE NARRATIVE. 3777 02:24:22,653 --> 02:24:25,023 WE TALKED ABOUT ALL KINDS OF 3778 02:24:25,089 --> 02:24:26,891 THINGS, ABOUT INFORMED CONSENT, 3779 02:24:26,958 --> 02:24:29,627 THERAPEUTIC MISCONCEPTION, THE 3780 02:24:29,694 --> 02:24:33,431 USUAL SUSPECTS. 3781 02:24:33,498 --> 02:24:38,836 I WANT TO FOCUS ON PERSONAL 3782 02:24:38,903 --> 02:24:41,105 IDENTITY. 3783 02:24:41,172 --> 02:24:41,606 WE HAD SEMI STRUCTURED 3784 02:24:41,672 --> 02:24:44,475 INTERVIEWS PRE AND POST OP, 3785 02:24:44,542 --> 02:24:46,277 EVERYBODY ASSESSED INDEPENDENTLY 3786 02:24:46,344 --> 02:24:47,578 BY A CONSULTATION LIAISON 3787 02:24:47,645 --> 02:24:48,346 PSYCHIATRY FOR THEIR OWN 3788 02:24:48,413 --> 02:24:50,114 DECISION MAKING CAPACITY AND 3789 02:24:50,181 --> 02:24:51,749 THEIR ABILITY TO PROVIDE 3790 02:24:51,816 --> 02:24:53,851 AUTONOMOUS CONSENT. 3791 02:24:53,918 --> 02:24:57,321 I WORKED PREVIOUSLY WITH 3792 02:24:57,388 --> 02:24:58,956 PATIENTS IN MINIMALLY CONSCIOUS 3793 02:24:59,023 --> 02:24:59,157 STATE. 3794 02:24:59,223 --> 02:25:01,492 HOW DID YOU INTERVIEW THEM? 3795 02:25:01,559 --> 02:25:02,527 IT'S A DIFFERENT POPULATION, 3796 02:25:02,593 --> 02:25:11,969 MODERATE TO SEVERE BRAIN INJURY, 3797 02:25:12,036 --> 02:25:18,743 GOSI 5-7, SIX PEOPLE IMPLANTED, 3798 02:25:18,810 --> 02:25:22,380 ONE PERSON EXPLANTED FOR MINE 3799 02:25:22,447 --> 02:25:22,680 ORINFECTION. 3800 02:25:22,747 --> 02:25:25,583 FIVE DYADS COMPLETED. 3801 02:25:25,650 --> 02:25:28,186 WE HAD PREOPERATIVE WORD COUNT 3802 02:25:28,252 --> 02:25:33,558 IN TRANSCRIPTS OF 69,000 WORDS, 3803 02:25:33,624 --> 02:25:35,860 RANGE WAS 6800 TO 15,000, 3804 02:25:35,927 --> 02:25:42,633 FAMILIES 3800 TO 18,000. 3805 02:25:42,700 --> 02:25:46,370 WE LOST ONE SUBJECT, HAD A 3806 02:25:46,437 --> 02:25:49,740 SIMILAR RANGE AND THE LIKE. 3807 02:25:49,807 --> 02:25:51,509 TRANSCRIPTS WERE CODED 3808 02:25:51,576 --> 02:25:52,810 DEDUCTIVELY AND INDUCTIVELY TO 3809 02:25:52,877 --> 02:25:53,911 CONCEPTUAL CODES. 3810 02:25:53,978 --> 02:25:58,382 I WAS GREATLY SISSED IT BY 3811 02:25:58,449 --> 02:25:59,817 MAYING -- ASSISTED BY MEGAN 3812 02:25:59,884 --> 02:26:02,286 WRIGHT, YALE LAW SCHOOL, IN OUR 3813 02:26:02,353 --> 02:26:05,423 GROUP, ALSO TRAINED AS A Ph.D. 3814 02:26:05,490 --> 02:26:06,290 SOCIOLOGIST. 3815 02:26:06,357 --> 02:26:08,025 WE USED HER EXPERTISE TO THIS 3816 02:26:08,092 --> 02:26:08,493 REGARD. 3817 02:26:08,559 --> 02:26:10,561 THERE WERE LOTS OF THEMES THAT I 3818 02:26:10,628 --> 02:26:12,196 WON'T FOCUS ON BECAUSE WE'RE 3819 02:26:12,263 --> 02:26:14,265 SORT OF FORWARD LOOKING ON HERE. 3820 02:26:14,332 --> 02:26:17,535 I REALLY WANT TO FOCUS ON 3821 02:26:17,602 --> 02:26:18,236 PERSONAL IDENTITY. 3822 02:26:18,302 --> 02:26:21,772 AND ONE OF THE TROPES THAT WE 3823 02:26:21,839 --> 02:26:25,877 OFTEN HEAR ABOUT IN THE 3824 02:26:25,943 --> 02:26:26,878 BIOETHICS AND NEUROETHICS 3825 02:26:26,944 --> 02:26:29,046 LITERATURE, OFT BEEN THE FEAR 3826 02:26:29,113 --> 02:26:29,981 CYBORGS WILL INFILTRATE YOUR 3827 02:26:30,047 --> 02:26:31,482 BRAIN WHEN YOU GET A 3828 02:26:31,549 --> 02:26:33,217 NEUROPROSTHETIC AND YOU WON'T BE 3829 02:26:33,284 --> 02:26:34,752 WHO YOU ARE, BUT THE REALITY IS 3830 02:26:34,819 --> 02:26:36,287 ACCORDING TO THE SAMPLE THAT WE 3831 02:26:36,354 --> 02:26:39,991 HAD IN OUR STUDY IN TRAUMATIC 3832 02:26:40,057 --> 02:26:41,425 BRAIN INJURY, NOT SAYING ALL 3833 02:26:41,492 --> 02:26:43,728 BRAIN CONDITIONS BUT IN OUR 3834 02:26:43,794 --> 02:26:45,496 STUDY WHAT NARRATIVES SAY, THE 3835 02:26:45,563 --> 02:26:47,031 SUBJECTS SAY AND THEIR FAMILIES 3836 02:26:47,098 --> 02:26:49,667 MEMBERS SAID, IS THAT BRAIN 3837 02:26:49,734 --> 02:26:51,402 INJURY DISRUPTS PERSONAL 3838 02:26:51,469 --> 02:26:52,970 IDENTITY AND NEUROMODULATION 3839 02:26:53,037 --> 02:26:53,671 RESTORES IT. 3840 02:26:53,738 --> 02:26:56,974 AND SO I WANT TO FOCUS ON THAT. 3841 02:26:57,041 --> 02:27:01,579 HERE ARE SOME EXAMPLES OF WHAT 3842 02:27:01,646 --> 02:27:03,848 THE PREOPERATIVE INTERVIEW SAID. 3843 02:27:03,915 --> 02:27:06,184 AND THE MOTHER OF A SUBJECT SAID 3844 02:27:06,250 --> 02:27:08,819 THAT THE SUBJECT WAS A TOTALLY 3845 02:27:08,886 --> 02:27:13,391 DIFFERENT PERSON, ESSENCE OF MY 3846 02:27:13,457 --> 02:27:14,592 DAUGHTER CHANGED FOREVER, I HAD 3847 02:27:14,659 --> 02:27:16,027 TO RAISE HER ALL OVER AGAIN. 3848 02:27:16,093 --> 02:27:17,895 ONE OF THE SUBJECTS SAID ABOUT 3849 02:27:17,962 --> 02:27:19,664 HIMSELF, I WOULD SAY I'M SIMILAR 3850 02:27:19,730 --> 02:27:21,933 BUT I'M NOT SURE I WOULD SAY I'M 3851 02:27:21,999 --> 02:27:23,367 THE SAME. 3852 02:27:23,434 --> 02:27:25,570 THAT PARENT OF THAT SUBJECT SEES 3853 02:27:25,636 --> 02:27:27,872 THE SUBJECT AS IMMATURE VERSION 3854 02:27:27,939 --> 02:27:29,073 OF HIS FORMER SELF AND SAID, YOU 3855 02:27:29,140 --> 02:27:30,474 KNOW, YOU HAVE TO SEPARATE 3856 02:27:30,541 --> 02:27:32,343 GETTING THE OLD HIM BACK FROM 3857 02:27:32,410 --> 02:27:34,879 GETTING HIM TO A PLACE WHERE 3858 02:27:34,946 --> 02:27:37,515 HE'S SUFFERING LESS. 3859 02:27:37,582 --> 02:27:40,251 AND ALL OF THE PARTICIPANTS HAD 3860 02:27:40,318 --> 02:27:44,655 SOME VERSION OF THIS, OF THIS 3861 02:27:44,722 --> 02:27:44,855 STORY. 3862 02:27:44,922 --> 02:27:45,423 POSTOPERATIVELY IT'S QUITE 3863 02:27:45,489 --> 02:27:46,090 REMARK ANNUAL. 3864 02:27:46,157 --> 02:27:48,025 THE SAME MOTHER WHO SAID I LOST 3865 02:27:48,092 --> 02:27:49,794 MY DAUGHTER, I LOST MY DAUGHTER, 3866 02:27:49,860 --> 02:27:51,429 SAID THE FOLLOWING. 3867 02:27:51,495 --> 02:27:53,631 I GOT MY DAUGHTER BACK, I GOT MY 3868 02:27:53,698 --> 02:27:55,399 DAUGHTER BACK, IT'S A MIRACLE, 3869 02:27:55,466 --> 02:27:58,135 IT'S SO PROFOUND FOR US, IT'S A 3870 02:27:58,202 --> 02:27:58,502 PROFOUND CHANGE. 3871 02:27:58,569 --> 02:27:59,904 NOW HERE COME THE TEARS. 3872 02:27:59,971 --> 02:28:01,405 IF SOMEBODY TOLD ME IN AUGUST WE 3873 02:28:01,472 --> 02:28:03,174 WOULD BE SITTING HERE HAVING 3874 02:28:03,241 --> 02:28:04,775 THIS KIND OF CONVERSATION IN 3875 02:28:04,842 --> 02:28:06,143 JANUARY, I NEVER WOULD HAVE 3876 02:28:06,210 --> 02:28:07,578 BELIEVED IT. 3877 02:28:07,645 --> 02:28:11,716 IT'S BEYOND MY HOPES, BEYOND 3878 02:28:11,782 --> 02:28:12,316 ANTICIPATION, SOMEBODY TURNED 3879 02:28:12,383 --> 02:28:13,351 THE LIGHTS BACK ON. 3880 02:28:13,417 --> 02:28:16,187 THIS SUBJECT WHO HAD HAD A 3881 02:28:16,254 --> 02:28:17,088 DEVASTATING CAR ACCIDENT BEFORE 3882 02:28:17,154 --> 02:28:20,791 SHE WAS GOING TO GO TO LAW 3883 02:28:20,858 --> 02:28:23,194 SCHOOL, A CAR ACCIDENT WHERE SHE 3884 02:28:23,261 --> 02:28:24,295 DIVED UNDER THE DASHBOARD OF THE 3885 02:28:24,362 --> 02:28:25,930 FRONT SEAT IN THE CAR SHE WAS 3886 02:28:25,997 --> 02:28:32,203 DRIVING SO SHE WOULDN'T BE 3887 02:28:32,270 --> 02:28:33,404 DECAPITATED AT THE TOP WAS 3888 02:28:33,471 --> 02:28:35,172 SHEARED OFF HAD A TERRIBLE BRAIN 3889 02:28:35,239 --> 02:28:37,541 INJURY, COULD NOT READ A BOOK, 3890 02:28:37,608 --> 02:28:38,743 COULDN'T -- HAD LACK OF ENERGY, 3891 02:28:38,809 --> 02:28:42,580 WOULD GO TO SLEEP AT 5:00 IN THE 3892 02:28:42,647 --> 02:28:45,883 AFTERNOON, HAD APATHY, AFTER 3893 02:28:45,950 --> 02:28:47,285 STIMULATION SHE HADN'T READ 3894 02:28:47,351 --> 02:28:48,819 ANYTHING FOR 19 YEARS, CAME TO 3895 02:28:48,886 --> 02:28:51,289 US IN JANUARY AND HAD READ SIX 3896 02:28:51,355 --> 02:28:52,123 BOOKS, SUMMARIZING NOVELS SHE 3897 02:28:52,189 --> 02:28:54,959 HAD RED. 3898 02:28:55,026 --> 02:28:55,192 READ. 3899 02:28:55,259 --> 02:28:57,161 THIS IS A GOOD NOVEL, THIS IS 3900 02:28:57,228 --> 02:28:58,129 NOT A GOOD NOVEL. 3901 02:28:58,195 --> 02:29:00,064 SHE HAD TO MAKE NEW LIFE PLANS 3902 02:29:00,131 --> 02:29:03,367 ABOUT GOING BACK TO SCHOOL. 3903 02:29:03,434 --> 02:29:06,504 ANOTHER SUBJECT WHO WAS IN THE 3904 02:29:06,570 --> 02:29:13,344 TRIAL SAID THAT IT WAS AN 3905 02:29:13,411 --> 02:29:15,413 ACCELERATION OF HIS RECOVER. 3906 02:29:15,479 --> 02:29:17,248 BEFORE THE IMPLANT, EARLY 3907 02:29:17,315 --> 02:29:18,449 MID-TEENS, AFTER THE IMPLANT I 3908 02:29:18,516 --> 02:29:19,784 WOULD SAY IT'S BACK TO LATE 3909 02:29:19,850 --> 02:29:21,986 TEENS OR MY ACTUAL AGE, WHICH 3910 02:29:22,053 --> 02:29:27,658 WAS IN THE EARLY 20s. 3911 02:29:27,725 --> 02:29:29,560 THE SAME SUBJECT WHO I JUST TOLD 3912 02:29:29,627 --> 02:29:33,164 YOU ABOUT WHO STARTED READING 3913 02:29:33,230 --> 02:29:34,298 AGAIN HAD CHALLENGES WITH 3914 02:29:34,365 --> 02:29:34,699 ADAPTATION. 3915 02:29:34,765 --> 02:29:36,967 I THINK THIS IS A FORWARD SCAN 3916 02:29:37,034 --> 02:29:37,968 LOOKING QUESTION. 3917 02:29:38,035 --> 02:29:39,270 YOU HELP THESE PEOPLE, BUT WHAT 3918 02:29:39,337 --> 02:29:41,238 DO YOU DO TO HELP THEM INTEGRATE 3919 02:29:41,305 --> 02:29:43,541 AND GET BACK INTO THEIR LIVES? 3920 02:29:43,607 --> 02:29:45,443 IT'S LIKE SOMETHING IS TOLD THEY 3921 02:29:45,509 --> 02:29:46,344 DON'T HAVE HUNTINGTON'S DISEASE 3922 02:29:46,410 --> 02:29:48,946 AND ALL OF A SUDDEN THEY ARE 45, 3923 02:29:49,013 --> 02:29:50,381 NOW WHAT I DO? 3924 02:29:50,448 --> 02:29:51,782 I ANTICIPATED I WOULD DIE. 3925 02:29:51,849 --> 02:29:54,085 THERE HAVE BEEN SUICIDES IN THAT 3926 02:29:54,151 --> 02:29:57,388 CONTEXT WHEN PEOPLE ARE GIVEN 3927 02:29:57,455 --> 02:29:58,989 NEWS UNEXPECTED. 3928 02:29:59,056 --> 02:30:00,891 THEY DON'T EXPECT TO GET BETTER. 3929 02:30:00,958 --> 02:30:02,560 THEY THOUGHT THIS WAS THEIR LOT 3930 02:30:02,626 --> 02:30:04,762 AND NOW THEY HAVE TO ADAPT TO 3931 02:30:04,829 --> 02:30:05,363 IMPROVEMENTS. 3932 02:30:05,429 --> 02:30:06,797 THIS IS A POSITIVE DISRUPTION IN 3933 02:30:06,864 --> 02:30:07,765 THEIR LIVES. 3934 02:30:07,832 --> 02:30:09,266 SO THE SAME SUBJECT, THIS WOMAN 3935 02:30:09,333 --> 02:30:11,035 SAID I DON'T KNOW, I JUST WANT 3936 02:30:11,102 --> 02:30:11,969 TO THINK. 3937 02:30:12,036 --> 02:30:12,937 I'M BORED. 3938 02:30:13,003 --> 02:30:14,004 LIKE READING BOOKS AND STUFF, 3939 02:30:14,071 --> 02:30:14,338 WHY? 3940 02:30:14,405 --> 02:30:16,774 I WOULD HAVE THOUGHT THAT WAS 3941 02:30:16,841 --> 02:30:17,208 BORING. 3942 02:30:17,274 --> 02:30:19,176 I'M USING MY MIND AND IT'S 3943 02:30:19,243 --> 02:30:19,744 INTERESTING. 3944 02:30:19,810 --> 02:30:21,679 I DON'T KNOW WHY. 3945 02:30:21,746 --> 02:30:24,115 IT JUST MAKES ME LAUGH. 3946 02:30:24,181 --> 02:30:27,818 IT'S AMAZING I ENJOY DOING THESE 3947 02:30:27,885 --> 02:30:29,820 THINGS, LIKE I'M A NERD. 3948 02:30:29,887 --> 02:30:31,122 YOU GUYS, SCIENTIFIC TEAM, YOU 3949 02:30:31,188 --> 02:30:32,757 MADE ME A NERD. 3950 02:30:32,823 --> 02:30:35,393 IT'S ALSO ABOUT SOCIAL 3951 02:30:35,459 --> 02:30:35,726 RELATIONSHIPS. 3952 02:30:35,793 --> 02:30:37,395 AND HER NETWORK OF FRIENDS. 3953 02:30:37,461 --> 02:30:39,630 SHE TOLD US I WENT TO LUNCH WITH 3954 02:30:39,697 --> 02:30:41,365 MY GIRLFRIEND, I TOLD HER I 3955 02:30:41,432 --> 02:30:42,600 LIKED READING. 3956 02:30:42,666 --> 02:30:45,302 THIS GIRLFRIEND LOOKED AT ME AND 3957 02:30:45,369 --> 02:30:45,636 SAID, WHY? 3958 02:30:45,703 --> 02:30:47,071 AND SHE SAID, THAT'S WHEN I 3959 02:30:47,138 --> 02:30:49,273 LOOKED AT HER AND JUST KNEW OUR 3960 02:30:49,340 --> 02:30:51,142 LIVES WERE GOING IN DIFFERENT 3961 02:30:51,208 --> 02:30:51,876 DIRECTIONS. 3962 02:30:51,942 --> 02:30:55,613 I NEED A DIFFERENT GIRLFRIEND 3963 02:30:55,679 --> 02:30:55,780 NOW. 3964 02:30:55,846 --> 02:30:57,515 AND SO THIS IS LIKE A 3965 02:30:57,581 --> 02:30:58,682 POSITIVE -- IT'S A GOOD PROBLEM 3966 02:30:58,749 --> 02:31:01,218 TO HAVE BUT IT'S A REAL PROBLEM. 3967 02:31:01,285 --> 02:31:03,954 AND WE HAVE TO SUPPORT THESE 3968 02:31:04,021 --> 02:31:05,055 FOLKS IN ADDITION TO HELPING 3969 02:31:05,122 --> 02:31:06,924 THEIR BRAINS GET BETTER, HAVE TO 3970 02:31:06,991 --> 02:31:09,326 HELP THEM NOW USE THOSE BRAINS 3971 02:31:09,393 --> 02:31:11,862 IN A WAY THAT ALLOWS THEM TO 3972 02:31:11,929 --> 02:31:12,730 REINTEGRATE INTO SOCIETY, AND 3973 02:31:12,797 --> 02:31:13,931 IT'S A CHALLENGE BECAUSE IT'S 3974 02:31:13,998 --> 02:31:17,234 NOT LIKE THEY ARE GOING THROUGH 3975 02:31:17,301 --> 02:31:19,603 NORMAL MATURATION IN HIGH SCHOOL 3976 02:31:19,670 --> 02:31:20,838 WITH A GUIDANCE COUNSELOR AND 3977 02:31:20,905 --> 02:31:21,472 NORMAL TRAJECTORY. 3978 02:31:21,539 --> 02:31:23,474 THEY ARE ON A FLIGHT PATH NO ONE 3979 02:31:23,541 --> 02:31:24,909 HAS FLOWN BEFORE. 3980 02:31:24,975 --> 02:31:28,946 I THINK THIS GETS TO THE 3981 02:31:29,013 --> 02:31:30,381 POST-TRIAL OBLIGATIONS FOR THESE 3982 02:31:30,448 --> 02:31:34,685 SUBJECTS, AND IT'S NOT JUST THE 3983 02:31:34,752 --> 02:31:34,985 BATTERIES. 3984 02:31:35,052 --> 02:31:36,086 IT'S BROADER SUPPORT. 3985 02:31:36,153 --> 02:31:37,721 ONE OF THE PARENTS SAID, YOU 3986 02:31:37,788 --> 02:31:41,559 KNOW, LOOK, THIS IS NOT A 3987 02:31:41,625 --> 02:31:43,093 MEDICATION YOU CAN CONTINUE. 3988 02:31:43,160 --> 02:31:45,062 HIS BODY IS CHANGED FOREVER 3989 02:31:45,129 --> 02:31:47,164 BECAUSE OF THIS DEVICE SO NOT 3990 02:31:47,231 --> 02:31:49,333 SUPPORTING IT IS NOT THE SAME AS 3991 02:31:49,400 --> 02:31:50,634 NOT APPROVING A MEDICATION AND 3992 02:31:50,701 --> 02:31:52,303 THEN JUST NOT MAKING IT 3993 02:31:52,369 --> 02:31:54,238 AVAILABLE ANYMORE. 3994 02:31:54,305 --> 02:31:57,141 AND I THINK THAT THAT'S WORTH 3995 02:31:57,208 --> 02:31:58,242 CONSIDERATION. 3996 02:31:58,309 --> 02:32:00,744 AND I THINK THAT, YOU KNOW, A 3997 02:32:00,811 --> 02:32:02,480 SAYING, IF YOU BROKE IT, YOU OWN 3998 02:32:02,546 --> 02:32:02,980 IT. 3999 02:32:03,047 --> 02:32:04,982 NOW THAT WE FIXED IT, WE OWN IT 4000 02:32:05,049 --> 02:32:06,517 AS WELL. 4001 02:32:06,584 --> 02:32:10,454 ONE OF THE SUBJECTS, QUITE 4002 02:32:10,521 --> 02:32:11,655 REMARKABLE, DID A CALCULATION 4003 02:32:11,722 --> 02:32:13,958 WITH US ABOUT YOU CAN PAY FOR 4004 02:32:14,024 --> 02:32:15,726 THE BATTERIES OR CAN YOU PUT ME 4005 02:32:15,793 --> 02:32:17,161 ON DISABILITY INSURANCE. 4006 02:32:17,228 --> 02:32:18,629 AND HE SAID, DO I HAVE CONCERNS 4007 02:32:18,696 --> 02:32:19,797 ABOUT THE FUTURE? 4008 02:32:19,864 --> 02:32:21,298 I MEAN, THE ONLY THING THAT 4009 02:32:21,365 --> 02:32:23,434 COMES TO MIND IS REPLACING THE 4010 02:32:23,501 --> 02:32:25,135 BATTERY, NO, OTHER THAN THAT, 4011 02:32:25,202 --> 02:32:26,437 OTHERWISE I DON'T UNDERSTAND WHY 4012 02:32:26,504 --> 02:32:28,772 THE GOVERNMENT IS NOT GIVING ME 4013 02:32:28,839 --> 02:32:29,507 DISABILITY INSURANCE OR 4014 02:32:29,573 --> 02:32:30,007 SOMETHING. 4015 02:32:30,074 --> 02:32:31,509 AND THIS IS GREAT. 4016 02:32:31,575 --> 02:32:33,677 LIKE EITHER COVER MY MEDICAL 4017 02:32:33,744 --> 02:32:36,146 EXPENSES OR COVER THE 4018 02:32:36,213 --> 02:32:36,447 DISABILITY. 4019 02:32:36,514 --> 02:32:37,214 PICK ONE, YOU KNOW? 4020 02:32:37,281 --> 02:32:38,749 I'D RATHER HAVE THE JOB THAN 4021 02:32:38,816 --> 02:32:39,617 COLLECT INSURANCE. 4022 02:32:39,683 --> 02:32:42,353 PLUS THE SOCIAL ASPECT IS ALSO 4023 02:32:42,419 --> 02:32:42,686 NEEDED. 4024 02:32:42,753 --> 02:32:44,088 SITTING HOME ALONE ALL DAY IS 4025 02:32:44,154 --> 02:32:44,421 BORING. 4026 02:32:44,488 --> 02:32:45,823 I MEAN, THERE ARE SO MANY 4027 02:32:45,890 --> 02:32:49,226 REASONS TO GO OUT AND GET A JOB 4028 02:32:49,293 --> 02:32:51,095 AND DO SOMETHING. 4029 02:32:51,161 --> 02:32:52,062 WE TALK ABOUT ACCOMMODATION, 4030 02:32:52,129 --> 02:32:53,731 THESE PEOPLE CAN BE INTEGRATED 4031 02:32:53,797 --> 02:32:54,498 INTO SOCIETY. 4032 02:32:54,565 --> 02:32:56,467 THEY WANT TO GO BACK TO SOME 4033 02:32:56,534 --> 02:32:58,669 SEMBLANCE OF A NORMAL LIFE BUT 4034 02:32:58,736 --> 02:33:02,072 IT'S NOT A NATURAL PATHWAY THAT 4035 02:33:02,139 --> 02:33:05,042 IS CLEARLY AVAILABLE TO THEM. 4036 02:33:05,109 --> 02:33:07,211 HAVING SAID ALL THAT, THERE IS 4037 02:33:07,278 --> 02:33:08,979 SOME REALISM TO WHAT CAN AND 4038 02:33:09,046 --> 02:33:10,848 WHAT CANNOT BE COVERED. 4039 02:33:10,915 --> 02:33:12,483 AND ONE SUBJECT SAID, MY DAD 4040 02:33:12,550 --> 02:33:14,652 ASKED HOW LONG THE IMPLANT COULD 4041 02:33:14,718 --> 02:33:15,753 BE SUPPORTED OR MAINTAINED. 4042 02:33:15,819 --> 02:33:21,559 I'D LIKE IT TO BE IN PERPETUITY. 4043 02:33:21,625 --> 02:33:24,194 IT WOULD BE NICE. 4044 02:33:24,261 --> 02:33:25,796 BUT HE UNDERSTOOD THERE WERE 4045 02:33:25,863 --> 02:33:27,565 SOME LIMITS. 4046 02:33:27,631 --> 02:33:32,036 I WROTE A PAPER WITH THE 4047 02:33:32,102 --> 02:33:33,804 AFOREMENTIONED GABE LAZAR OH, 4048 02:33:33,871 --> 02:33:37,841 AMANDA MERCER AND MEGAN WRIGHT, 4049 02:33:37,908 --> 02:33:39,476 BEG PUBLISHED BY THE HASTINGS 4050 02:33:39,543 --> 02:33:41,011 CENTER WITH THE SUPPORT OF THE 4051 02:33:41,078 --> 02:33:41,845 DANA FOUNDATION. 4052 02:33:41,912 --> 02:33:46,383 I WROTE A PAPER WITH THEM CALLED 4053 02:33:46,450 --> 02:33:49,620 "IDENTITY THEFT, DEEP BRAIN 4054 02:33:49,687 --> 02:33:51,956 STIMULATION, PRIMACY OF DEEP 4055 02:33:52,022 --> 02:33:58,729 BRAIN STIMULATION." 4056 02:33:58,796 --> 02:34:01,265 TO RESTORE IT AND BECAUSE WE 4057 02:34:01,332 --> 02:34:02,766 HAVE POOR POLICY PEOPLE WILL 4058 02:34:02,833 --> 02:34:04,201 LOSE IT IF THEY DON'T GET 4059 02:34:04,268 --> 02:34:07,371 BATTERIES OR SUPPORT IS A 4060 02:34:07,438 --> 02:34:09,440 METAPHORICALLY IDENTITY THEFT. 4061 02:34:09,506 --> 02:34:14,144 AND I THINK A FAILURE TO FULFILL 4062 02:34:14,211 --> 02:34:14,845 POST-TRIAL OBLIGATIONS, DEPRIVES 4063 02:34:14,912 --> 02:34:17,014 THE INDIVIDUAL OF WHAT IS 4064 02:34:17,081 --> 02:34:19,283 RIGHTLY THEIRS, THEIR PERSONAL 4065 02:34:19,350 --> 02:34:20,417 IDENTITY, IF WE RESPECT PERSONS, 4066 02:34:20,484 --> 02:34:22,586 I THINK IDENTITY IS CLOSELY 4067 02:34:22,653 --> 02:34:24,021 LINKED, A RESPECT FOR PERSONS 4068 02:34:24,088 --> 02:34:25,456 ARGUMENT, I THINK THIS IS 4069 02:34:25,522 --> 02:34:28,726 SOMETHING WE REALLY NEED TO TAKE 4070 02:34:28,792 --> 02:34:31,428 SERIOUSLY IN A NORMATIVE WAY. 4071 02:34:31,495 --> 02:34:35,265 SO, I THINK HERE THE 4072 02:34:35,332 --> 02:34:36,700 NEUROPROSTHESIS RESTORES A 4073 02:34:36,767 --> 02:34:38,669 FORMER SELF TAKEN AWAY BY 4074 02:34:38,736 --> 02:34:39,870 INJURY, THE DEVICE NEEDS 4075 02:34:39,937 --> 02:34:41,839 LONG-TERM SUPPORT TO SUSTAIN 4076 02:34:41,905 --> 02:34:42,106 BENEFITS. 4077 02:34:42,172 --> 02:34:43,841 THEY NEED PSYCHOLOGICAL SUPPORT 4078 02:34:43,907 --> 02:34:45,809 FOR ADAPTATION POST A POSITIVE 4079 02:34:45,876 --> 02:34:47,378 DISRUPTIVE TECHNOLOGY. 4080 02:34:47,444 --> 02:34:49,613 EVERYBODY IN THE STUDY SAID, YOU 4081 02:34:49,680 --> 02:34:54,318 KNOW, IT WOULD HAVE BEEN HELPFUL 4082 02:34:54,385 --> 02:34:56,854 TO HAVE HAD A PSYCHIATRIST OR 4083 02:34:56,920 --> 02:34:59,556 PSYCHOLOGIST TO COUNSEL THEM AS 4084 02:34:59,623 --> 02:35:01,792 THEY REALIZE THEIR LIVES ARE 4085 02:35:01,859 --> 02:35:02,292 DRAMATICALLY DIFFERENT. 4086 02:35:02,359 --> 02:35:04,194 WE DIDN'T KNOW IT WAS GOING TO 4087 02:35:04,261 --> 02:35:06,797 BE THIS DRAMATIC, DIDN'T WANT TO 4088 02:35:06,864 --> 02:35:11,969 IMPOSE A THERAPEUTIC 4089 02:35:12,036 --> 02:35:12,936 MISCONCEPTION, IT WASN'T PART OF 4090 02:35:13,003 --> 02:35:16,006 THE STUDY BUT WE HEARD IT. 4091 02:35:16,073 --> 02:35:18,509 THE TRIALS NEED PSYCHOLOGICAL 4092 02:35:18,575 --> 02:35:19,710 SUPPORT AND THE FOLKS MAKE A 4093 02:35:19,777 --> 02:35:22,012 CLAIM UPON US AND THE PUBLIC 4094 02:35:22,079 --> 02:35:24,415 PURSE, UNDER DISABILITY LAW. 4095 02:35:24,481 --> 02:35:26,283 LET ME ROUND THE CORNER AND 4096 02:35:26,350 --> 02:35:29,787 EXPLAIN WHY I THINK THIS IS. 4097 02:35:29,853 --> 02:35:31,522 SO, THE ADA, AMERICANS WITH 4098 02:35:31,588 --> 02:35:32,189 DISABILITIES ACT, AND CONVENTION 4099 02:35:32,256 --> 02:35:34,158 ON THE RIGHTS OF PERSONS WITH 4100 02:35:34,224 --> 02:35:36,260 DISABILITIES FROM THE UNITED 4101 02:35:36,326 --> 02:35:38,328 NATIONS BOTH TALK ABOUT A 4102 02:35:38,395 --> 02:35:39,630 VIOLATION OF HUMAN RIGHTS IF 4103 02:35:39,697 --> 02:35:42,466 PEOPLE DON'T HAVE THE 4104 02:35:42,533 --> 02:35:44,034 OPPORTUNITY TO BE MAXIMALLY 4105 02:35:44,101 --> 02:35:46,236 INTEGRATED INTO CIVIL SOCIETY. 4106 02:35:46,303 --> 02:35:48,505 YOU KNOW, WRIT LARGE. 4107 02:35:48,572 --> 02:35:52,209 AND I THINK THAT FOR PEOPLE WHO 4108 02:35:52,276 --> 02:35:53,744 HAVE A MOTORIC DISABILITY, FOR 4109 02:35:53,811 --> 02:35:54,712 EXAMPLE, IT'S THE WHEELCHAIR, 4110 02:35:54,778 --> 02:35:56,914 THE CUT IN THE SIDEWALK THAT 4111 02:35:56,980 --> 02:35:58,348 ALLOWS THEM TO GO FROM HERE TO 4112 02:35:58,415 --> 02:35:59,016 THEIR. 4113 02:35:59,083 --> 02:36:04,254 WITH A COGNITIVE DISORDER 4114 02:36:04,321 --> 02:36:06,457 DEVICES ALLOW THEM TO ENGAGE, GO 4115 02:36:06,523 --> 02:36:08,959 BACK TO SCHOOL, GO BACK TO A 4116 02:36:09,026 --> 02:36:09,626 JOB, RESTORE RELATIONSHIPS, AND 4117 02:36:09,693 --> 02:36:13,130 THIS IS WHAT I MEAN BY SOCIAL 4118 02:36:13,197 --> 02:36:13,430 INTEGRATION. 4119 02:36:13,497 --> 02:36:17,735 I THINK THE DEVICE CAN BE 4120 02:36:17,801 --> 02:36:19,837 UNDERSTOOD AS AN ACCOMMODATION. 4121 02:36:19,903 --> 02:36:22,306 IN A PAPER PUBLISHED IN THE 4122 02:36:22,372 --> 02:36:23,741 BOSTON COLLEGE LAW REVIEW WITH 4123 02:36:23,807 --> 02:36:32,916 STUDENTS AND FELLOW AT YALE, WE 4124 02:36:32,983 --> 02:36:35,552 HAVE A QUOTE, TYPES OF 4125 02:36:35,619 --> 02:36:38,722 ACCOMMODATION AND SERVICES 4126 02:36:38,789 --> 02:36:39,823 PROVIDED TO INDIVIDUALS WITH 4127 02:36:39,890 --> 02:36:41,992 DISABILITIES UNDER ALL TITLES OF 4128 02:36:42,059 --> 02:36:43,627 ADA SHOULD KEEP PACE WITH 4129 02:36:43,694 --> 02:36:44,228 RAPIDLY CHANGING TECHNOLOGY OF 4130 02:36:44,294 --> 02:36:45,496 THE TIMES. 4131 02:36:45,562 --> 02:36:50,400 EVEN THOUGH THE ADA WROTE ABOUT 4132 02:36:50,467 --> 02:36:52,736 TELEPHONE, TTY FOR DEAF 4133 02:36:52,803 --> 02:36:54,271 INDIVIDUALS AS TECHNOLOGY OF THE 4134 02:36:54,338 --> 02:36:55,472 DAY, IT WASN'T THAT TECHNOLOGY 4135 02:36:55,539 --> 02:36:57,007 THEY WERE WRITING ABOUT. 4136 02:36:57,074 --> 02:37:00,844 IT WAS REALLY THE FACT, WHAT DID 4137 02:37:00,911 --> 02:37:02,913 THAT TECHNOLOGY ACCOMPLISH, AND 4138 02:37:02,980 --> 02:37:05,649 IF THERE'S NEW TECHNOLOGIES THAT 4139 02:37:05,716 --> 02:37:07,184 ALLOW FOR INTEGRATION IN A 4140 02:37:07,251 --> 02:37:10,587 MEANINGFUL WAY THAT NEEDS TO BE 4141 02:37:10,654 --> 02:37:11,889 UNDERSTOOD AS AN ACCOMMODATION. 4142 02:37:11,955 --> 02:37:13,624 WE'VE WRITTEN A NUMBER OF 4143 02:37:13,690 --> 02:37:15,392 ARTICLES ABOUT THAT. 4144 02:37:15,459 --> 02:37:20,864 WE'VE WRITTEN ABOUT THIS NEW 4145 02:37:20,931 --> 02:37:23,534 LEGISLATIVE PROPOSAL. 4146 02:37:23,600 --> 02:37:25,135 ONE PARADOX AND CIVIL RIGHTS LAW 4147 02:37:25,202 --> 02:37:27,104 IF YOU HAVE AN IMMUTABLE 4148 02:37:27,171 --> 02:37:28,505 CONDITION LIKE RACE OR GENDER 4149 02:37:28,572 --> 02:37:33,243 BEFORE WE HAD MORE GENDER 4150 02:37:33,310 --> 02:37:37,714 FLUIDITY, YOU HAVE DIFFERENT 4151 02:37:37,781 --> 02:37:39,349 LEVELS OF SCRUTINY IF 4152 02:37:39,416 --> 02:37:40,751 DISCRIMINATION AS OCCURRED. 4153 02:37:40,818 --> 02:37:41,752 WE HAVE THE PARADOXICAL 4154 02:37:41,819 --> 02:37:46,356 SITUATION WHERE IF HE WE CAN 4155 02:37:46,423 --> 02:37:52,796 CHANGE YOUR DISABILITY WITH A 4156 02:37:52,863 --> 02:37:56,834 NEUROPROSTHETIC YOU HAVE LESS 4157 02:37:56,900 --> 02:37:57,401 PROTECTION. 4158 02:37:57,467 --> 02:37:58,802 YOU ARE MORE FUNCTIONAL, IT'S A 4159 02:37:58,869 --> 02:38:00,103 MATTER OF CHOICE, BUT AT THE 4160 02:38:00,170 --> 02:38:01,872 SAME TIME WE HAVE TO ACCOMMODATE 4161 02:38:01,939 --> 02:38:03,841 THEM BECAUSE THEIR NEEDS ARE NOW 4162 02:38:03,907 --> 02:38:08,645 DIFFERENT THAN THEY WERE 4163 02:38:08,712 --> 02:38:08,946 PREVIOUSLY. 4164 02:38:09,012 --> 02:38:11,048 I THINK IN THE HASTINGS CENTER 4165 02:38:11,114 --> 02:38:13,917 PAPER COMING OUT EARLY THIS YEAR 4166 02:38:13,984 --> 02:38:15,652 THE PRESERVATION, IT'S A 4167 02:38:15,719 --> 02:38:16,753 PERSONAL IDENTITY, RESTORED BY 4168 02:38:16,820 --> 02:38:18,488 THESE DEVICES IS THE ULTIMATE 4169 02:38:18,555 --> 02:38:21,158 ACCOMMODATION AND SHOULD BE 4170 02:38:21,225 --> 02:38:23,126 MANDATED UNDER DISABILITY LAW. 4171 02:38:23,193 --> 02:38:27,064 LET ME CLOSE BY SAYING THAT I'VE 4172 02:38:27,130 --> 02:38:29,132 BEEN DEEPLY INFORMED BITHIS 4173 02:38:29,199 --> 02:38:32,202 WONDERFUL BOOK BY HENRY 4174 02:38:32,269 --> 02:38:33,937 RICHARDSON, PHILOSOPHER, WHO 4175 02:38:34,004 --> 02:38:34,738 WROTE ABOUT ANCILLARY CARE 4176 02:38:34,805 --> 02:38:36,440 OBLIGATIONS IN MEDICAL RESEARCH. 4177 02:38:36,506 --> 02:38:38,775 HE WROTE MOSTLY ABOUT ANCILLARY 4178 02:38:38,842 --> 02:38:41,612 CARE OBLIGATIONS, CONTEXT OF 4179 02:38:41,678 --> 02:38:44,348 DOING, YOU KNOW, RESEARCH, 4180 02:38:44,414 --> 02:38:45,315 RESEARCH ABROAD, AND SAYING 4181 02:38:45,382 --> 02:38:48,518 DEPENDING ON LEVEL OF THE 4182 02:38:48,585 --> 02:38:51,021 ENGAGEMENT WITH THE COMMUNITY, 4183 02:38:51,088 --> 02:38:52,656 DEPENDENCE UPON YOU, DEPTH OF 4184 02:38:52,723 --> 02:38:56,960 THE RELATIONSHIP, ANCILLARY CARE 4185 02:38:57,027 --> 02:38:58,629 OBLIGATIONS BECOME MORE 4186 02:38:58,695 --> 02:38:59,463 ENTANGLEMENTS, ALMOST AN 4187 02:38:59,529 --> 02:38:59,863 OBLIGATION. 4188 02:38:59,930 --> 02:39:02,532 I WOULD SAY AS AN INVESTIGATOR 4189 02:39:02,599 --> 02:39:05,702 ON THE UH3 SIDE, AND IN THE 4190 02:39:05,769 --> 02:39:06,803 NEUROMODULATION SPACE, THIS 4191 02:39:06,870 --> 02:39:08,205 REALLY BECOMES THE CORE 4192 02:39:08,272 --> 02:39:09,406 COMMITMENT BECAUSE IDENTITY IS 4193 02:39:09,473 --> 02:39:09,873 CORE. 4194 02:39:09,940 --> 02:39:12,376 I REALLY THINK WE NEED TO THINK 4195 02:39:12,442 --> 02:39:15,445 ABOUT THESE RESPONSIBILITIES. 4196 02:39:15,512 --> 02:39:17,748 SO, TYING A LOT OF NIH GRANTS 4197 02:39:17,814 --> 02:39:26,823 TOGETHER WE HAVE UH3, AND GABE 4198 02:39:26,890 --> 02:39:28,258 OR JENNY MENTIONED EARLIER, NOW 4199 02:39:28,325 --> 02:39:33,931 AT HARVARD, HE AND I ARE MPIs 4200 02:39:33,997 --> 02:39:36,333 ON A NEW GRANT IN AUGUST LOOKING 4201 02:39:36,400 --> 02:39:40,270 AT THE QUESTION OF POST-TRIAL 4202 02:39:40,337 --> 02:39:41,505 OBLIGATIONS, AND SOME 4203 02:39:41,571 --> 02:39:43,607 PRELIMINARY IDEAS WHICH ARE 4204 02:39:43,674 --> 02:39:45,842 BEGINNING TO EMERGE, REALLY 4205 02:39:45,909 --> 02:39:46,843 PROVISIONAL IDEAS, THAT 4206 02:39:46,910 --> 02:39:49,246 RESPONSIBILITY FOR THE SUPPORT 4207 02:39:49,313 --> 02:39:49,913 OF THESE STAKEHOLDERS, 4208 02:39:49,980 --> 02:39:54,184 PARTICIPANTS, SHOULD BE SHARED 4209 02:39:54,251 --> 02:39:55,085 AMONGST FUNDERS, INVESTIGATORS, 4210 02:39:55,152 --> 02:39:56,253 INDUSTRY, AND THAT THE COST 4211 02:39:56,320 --> 02:39:57,921 SHOULD BE BUDGETED INTO THE 4212 02:39:57,988 --> 02:40:00,991 FUNDING OF CLINICAL TRIALS. 4213 02:40:01,058 --> 02:40:02,592 AND DBS PROTOCOL SHOULD BE 4214 02:40:02,659 --> 02:40:07,097 REQUIRED TO ARTICULATE SOME KIND 4215 02:40:07,164 --> 02:40:08,732 OF PLAN ABOUT MEETING POST-TRIAL 4216 02:40:08,799 --> 02:40:11,134 OBLIGATION AS CONDITION OF 4217 02:40:11,201 --> 02:40:12,102 APPROVAL BY INSTITUTIONAL REVIEW 4218 02:40:12,169 --> 02:40:12,769 BOARD. 4219 02:40:12,836 --> 02:40:15,172 WHAT WE'RE DOING OVER THE 3 1/2 4220 02:40:15,238 --> 02:40:16,606 YEARS LEFT, WE'RE INTERVIEWING 4221 02:40:16,673 --> 02:40:19,977 PARTICIPANTS IN A NUMBER OF 4222 02:40:20,043 --> 02:40:20,477 NEUROMODULATION TRIALS, 4223 02:40:20,544 --> 02:40:31,054 INTERVIEWING NEUROSURGEONS, 4224 02:40:33,757 --> 02:40:34,825 INDUSTRY FOLKS, AND FUNDERS, 4225 02:40:34,891 --> 02:40:37,361 WE'LL COLLECT INFORMATION AND 4226 02:40:37,427 --> 02:40:39,096 REACH CONSENSUS ABOUT REASONABLE 4227 02:40:39,162 --> 02:40:40,831 POLICY CHANGES THAT CAN MAYBE 4228 02:40:40,897 --> 02:40:42,599 ADDRESS CONCERNS. 4229 02:40:42,666 --> 02:40:45,235 THESE ARE SOME PROVISIONAL 4230 02:40:45,302 --> 02:40:48,105 IDEAS, NOT BY A LONG SHOT OUR 4231 02:40:48,171 --> 02:40:48,405 CONCLUSIONS. 4232 02:40:48,472 --> 02:40:51,041 ONE LAST POINT. 4233 02:40:51,108 --> 02:40:52,909 THE VERY FIRST SLIDE I SAID IN 4234 02:40:52,976 --> 02:40:54,878 TALKING TO THESE PARTICIPANTS IS 4235 02:40:54,945 --> 02:40:57,948 NOT JUST ABOUT PARTICIPATION AND 4236 02:40:58,015 --> 02:40:59,049 REPRESENTATION. 4237 02:40:59,116 --> 02:41:00,050 IT'S ALSO ABOUT SCIENCE. 4238 02:41:00,117 --> 02:41:05,055 AND IN A PAPER THAT WE WROTE 4239 02:41:05,122 --> 02:41:07,157 WITH THOMAS SHLEVER AND GERMAN 4240 02:41:07,224 --> 02:41:09,359 COLLEAGUES AND HELEN, KNOWN FOR 4241 02:41:09,426 --> 02:41:14,164 THE DEPRESSION TRIAL, BART 4242 02:41:14,231 --> 02:41:15,999 NEWTON, IN THE NETHERLANDS, WE 4243 02:41:16,066 --> 02:41:18,001 WROTE THIS PAPER IN BRAIN 4244 02:41:18,068 --> 02:41:19,302 STIMULATION WITH THE TITLE, 4245 02:41:19,369 --> 02:41:21,038 BEING OPENED MINDED ABOUT 4246 02:41:21,104 --> 02:41:22,472 NEUROMODULATION, FINDING SUCCESS 4247 02:41:22,539 --> 02:41:24,041 IN OUR FAILURES. 4248 02:41:24,107 --> 02:41:28,612 THE POINT WAS THAT A LOT OF 4249 02:41:28,678 --> 02:41:30,914 TIMES TRIALS HAVE SMALL 4250 02:41:30,981 --> 02:41:34,751 TRIALS -- SMALL TRIALS HAVE A 4251 02:41:34,818 --> 02:41:36,686 SMALL NUMBER OF PARTICIPANTS 4252 02:41:36,753 --> 02:41:37,788 HELPED AND NOT HELPED, 4253 02:41:37,854 --> 02:41:39,423 STIMULATION PARAMETERS ARE 4254 02:41:39,489 --> 02:41:39,890 LOCKED IN EARLY. 4255 02:41:39,956 --> 02:41:41,958 AT THE END OF THE TRIAL, I THINK 4256 02:41:42,025 --> 02:41:43,393 IT WAS SAID EARLIER, THESE 4257 02:41:43,460 --> 02:41:45,796 TRIALS ARE WAY TOO SHORT BECAUSE 4258 02:41:45,862 --> 02:41:47,531 BRAIN PLASTICITY TAKES A LONG 4259 02:41:47,597 --> 02:41:47,731 TIME. 4260 02:41:47,798 --> 02:41:53,770 WE CAN TALK ABOUT THAT. 4261 02:41:53,837 --> 02:41:56,506 HELEN MAYBERG'S LOOKED ARE 4262 02:41:56,573 --> 02:41:57,507 WORKED LOOKED PROMISED AT THE 4263 02:41:57,574 --> 02:41:59,443 BEGINNING, NOT IN THE MIDDLE, 4264 02:41:59,509 --> 02:42:05,248 BUT BUT FOLKS ARE DOING BETTER. 4265 02:42:05,315 --> 02:42:06,583 IF YOU WANT TO CONTINUE AND 4266 02:42:06,650 --> 02:42:07,884 THOUGHT HAD YOU BENEFIT IT'S NOT 4267 02:42:07,951 --> 02:42:09,953 JUST GOOD FOR THEM TO MAINTAIN 4268 02:42:10,020 --> 02:42:12,489 THEIR BATTERY AND ADHERE TO 4269 02:42:12,556 --> 02:42:13,924 POST-TRIAL OBLIGATIONS; THEY 4270 02:42:13,990 --> 02:42:15,325 ALSO CAN BE A GREAT OPPORTUNITY 4271 02:42:15,392 --> 02:42:17,494 TO LEARN MORE ABOUT THE NATURAL 4272 02:42:17,561 --> 02:42:21,031 HISTORY OF THESE CONDITIONS. 4273 02:42:21,098 --> 02:42:22,432 SO, IT'S REPRESENTATIVE AND 4274 02:42:22,499 --> 02:42:22,799 SCIENCE. 4275 02:42:22,866 --> 02:42:25,068 THIS IS A POINT WE MADE IN THE 4276 02:42:25,135 --> 02:42:27,704 MORE RECENT NIH GRANT, AND I 4277 02:42:27,771 --> 02:42:30,440 THINK THAT THERE ARE 4278 02:42:30,507 --> 02:42:32,075 OPPORTUNITIES FOR SYSTEM-BASED 4279 02:42:32,142 --> 02:42:34,211 LEARNING BY KEEPING CLOSE 4280 02:42:34,277 --> 02:42:36,913 CONNECTIONS WITH OUR 4281 02:42:36,980 --> 02:42:37,581 PARTICIPANTS. 4282 02:42:37,647 --> 02:42:39,416 THESE PIONEERS, AS SARAH AND 4283 02:42:39,483 --> 02:42:40,417 ERIN CALLED THEM. 4284 02:42:40,484 --> 02:42:45,422 LET ME CLOSE WITH A WONDERFUL 4285 02:42:45,489 --> 02:42:49,159 SLIDE FROM SPAIN. 4286 02:42:49,226 --> 02:42:52,095 THEIR MOTTO IS A LIFE THAT IS 4287 02:42:52,162 --> 02:42:54,965 SAVED DESERVES TO BE LIVED. 4288 02:42:55,031 --> 02:42:56,800 WE SPEND A LOT OF TIMES SAVING 4289 02:42:56,867 --> 02:42:57,000 LIVES. 4290 02:42:57,067 --> 02:42:58,668 NOW WE HAVE TO MAKE SURE FOLKS 4291 02:42:58,735 --> 02:42:59,903 CAN LIVE THESE LIVES. 4292 02:42:59,970 --> 02:43:02,739 THAT REALLY IS AT THE CORE OF 4293 02:43:02,806 --> 02:43:03,373 POST-TRIAL OBLIGATIONS. 4294 02:43:03,440 --> 02:43:05,242 I WANT TO THANK MY COLLEAGUES, 4295 02:43:05,308 --> 02:43:07,110 THE FAMILY WHO IS PARTICIPATED 4296 02:43:07,177 --> 02:43:09,946 IN OUR STUDIES AND I WILL STOP 4297 02:43:10,013 --> 02:43:15,018 THERE. 4298 02:43:15,085 --> 02:43:16,520 THANK YOU VERY MUCH. 4299 02:43:16,586 --> 02:43:17,587 >> THANK YOU. 4300 02:43:17,654 --> 02:43:18,822 LOOKING FORWARD TO DIVING INTO 4301 02:43:18,889 --> 02:43:20,023 THE DISCUSSION SAID TO 4302 02:43:20,090 --> 02:43:23,426 UNDERSTAND WHAT THE MEASURES OF 4303 02:43:23,493 --> 02:43:25,795 IDENTITY AND RESTORATION VERSUS 4304 02:43:25,862 --> 02:43:27,998 CHANGES TO SELF OVER TIME. 4305 02:43:28,064 --> 02:43:30,967 LET ME TURN NOW TO DR. ALEXANDER 4306 02:43:31,034 --> 02:43:34,004 HUTH, TO GIVE US A DIFFERENT 4307 02:43:34,070 --> 02:43:38,742 PERSPECTIVE ON A BIT OF HORIZON 4308 02:43:38,808 --> 02:43:40,010 SCANNING, ASSISTANT PROFESSOR, 4309 02:43:40,076 --> 02:43:42,846 UNIVERSITY OF TEXAS AUSTIN, 4310 02:43:42,913 --> 02:43:43,647 RESEARCH USES COMPUTATIONAL 4311 02:43:43,713 --> 02:43:45,382 METHODS TO MODEL HOW THE BRAIN 4312 02:43:45,448 --> 02:43:47,017 PROCESSES LANGUAGE AND 4313 02:43:47,083 --> 02:43:50,754 RECOMMENDS MEANING, Ph.D. FROM 4314 02:43:50,820 --> 02:43:51,521 UNIVERSITY OF CALIFORNIA 4315 02:43:51,588 --> 02:43:54,024 BERKELEY, B.S. AND M.S. FROM 4316 02:43:54,090 --> 02:43:55,559 CALIFORNIA INSTITUTE OF 4317 02:43:55,625 --> 02:44:00,597 TECHNOLOGY, A GOOD FRIEND TO 4318 02:44:00,664 --> 02:44:05,635 NEWG, HAVING SOME THIS SUMMER TO 4319 02:44:05,702 --> 02:44:06,236 GIVE PERSPECTIVES, ESPECIALLY 4320 02:44:06,303 --> 02:44:07,737 WITH A LOT OF EXCITING PAPERS. 4321 02:44:07,804 --> 02:44:14,311 THANK YOU FOR JOINING US. 4322 02:44:14,377 --> 02:44:14,978 >> THANK YOU. 4323 02:44:15,045 --> 02:44:17,714 I'M GOING TO TELL YOU ABOUT 4324 02:44:17,781 --> 02:44:18,481 SOMETHING DIFFERENT. 4325 02:44:18,548 --> 02:44:20,784 I'M GOING TO TALK ABOUT WHAT 4326 02:44:20,850 --> 02:44:22,719 KINDS OF INFORMATION WE CAN 4327 02:44:22,786 --> 02:44:24,487 MAYBE EXTRACT FROM THE KINDS OF 4328 02:44:24,554 --> 02:44:28,425 BRAIN SIGNALS WE MEASURE USING 4329 02:44:28,491 --> 02:44:30,493 STANDARD NEUROSCIENCE TECHNIQUES 4330 02:44:30,560 --> 02:44:31,061 LIKE fMRI. 4331 02:44:31,127 --> 02:44:34,231 SO, IN THE PAST FEW YEARS WE'VE 4332 02:44:34,297 --> 02:44:37,634 FOUND THAT USING fMRI WE CAN 4333 02:44:37,701 --> 02:44:40,570 SEE IN A GREAT DEAL OF DETAIL 4334 02:44:40,637 --> 02:44:42,205 REPRESENTATION OF MEANING OF 4335 02:44:42,272 --> 02:44:44,174 LANGUAGE AND OTHER KINDS OF 4336 02:44:44,241 --> 02:44:45,809 STIMULI ACROSS THE BRAIN. 4337 02:44:45,875 --> 02:44:47,777 THIS IS REALLY DRIVEN BY THREE 4338 02:44:47,844 --> 02:44:53,550 DIG DEVELOPMENTS IN THE FIELD. 4339 02:44:53,617 --> 02:45:03,526 ONE IS THIS METHOD OF VOXELIZING 4340 02:45:03,593 --> 02:45:06,263 CODING, TWO IS A REAL EXPLOSION 4341 02:45:06,329 --> 02:45:09,432 IN THE GROWTH OF METHODS FOR 4342 02:45:09,499 --> 02:45:10,634 COMPUTATIONALLY HANDLING TEXT, 4343 02:45:10,700 --> 02:45:12,068 SO METHODS FOR EXTRACTING WHAT 4344 02:45:12,135 --> 02:45:17,307 WE MIGHT CALL EXPRESSIONIVE 4345 02:45:17,374 --> 02:45:18,174 SEMANTICS FEATURES, GETTING 4346 02:45:18,241 --> 02:45:19,376 MACHINES, COMPUTERS TO 4347 02:45:19,442 --> 02:45:20,377 UNDERSTAND LANGUAGE IN A WAY 4348 02:45:20,443 --> 02:45:23,113 THAT CAN BE USEFUL TO US. 4349 02:45:23,179 --> 02:45:25,515 THREE IS BUILDING LARGE SCALE 4350 02:45:25,582 --> 02:45:28,351 fMRI DATASETS, WHERE WE HAVE 4351 02:45:28,418 --> 02:45:29,352 INDIVIDUAL SUBJECTS LISTEN TO A 4352 02:45:29,419 --> 02:45:31,221 LOT OF LANGUAGE SO WE CAN MAP 4353 02:45:31,288 --> 02:45:33,290 THINGS OUT IN DETAIL. 4354 02:45:33,356 --> 02:45:37,527 AND THIS GIVES US THE VERY HYPER 4355 02:45:37,594 --> 02:45:39,062 DETAILED SEMANTIC MAPS OF THE 4356 02:45:39,129 --> 02:45:39,429 BRAIN. 4357 02:45:39,496 --> 02:45:42,999 THIS IS ONE PARTICULAR VOXEL IN 4358 02:45:43,066 --> 02:45:45,635 MEDIAL FRONTAL CORTEX THAT MY 4359 02:45:45,702 --> 02:45:47,170 STUDENT SHELLY IDENTIFIED THAT 4360 02:45:47,237 --> 02:45:49,139 REALLY SEEMS TO LIKE IT WHENEVER 4361 02:45:49,205 --> 02:45:54,311 YOU HEAR A PHRASE THAT'S POLITE. 4362 02:45:54,377 --> 02:46:02,052 SO, THESE ARE THE PHRASES THIS 4363 02:46:02,118 --> 02:46:04,454 RESPONDS THE MOST TO. 4364 02:46:04,521 --> 02:46:06,556 THANK YOU, EXCUSE ME, I'M SORRY. 4365 02:46:06,623 --> 02:46:08,625 THIS IS THE REALLY DETAILED 4366 02:46:08,692 --> 02:46:11,795 INFORMATION WE CAN GET OUT OF 4367 02:46:11,861 --> 02:46:15,398 fMRI SCANS USING MODERN 4368 02:46:15,465 --> 02:46:16,266 COMPUTATIONAL DATASET 4369 02:46:16,333 --> 02:46:16,566 TECHNIQUES. 4370 02:46:16,633 --> 02:46:19,336 THIS HAS MADE IT POSSIBLE TO 4371 02:46:19,402 --> 02:46:21,338 DECODE A LOT OF INFORMATION FROM 4372 02:46:21,404 --> 02:46:24,674 THE BRAIN INTO LANGUAGE. 4373 02:46:24,741 --> 02:46:28,311 SO WE HAD STUDY LAST YEAR BY MY 4374 02:46:28,378 --> 02:46:32,015 STUDENT JERRY TANG, WE CAN USE 4375 02:46:32,082 --> 02:46:33,550 DETAILED MAPS TO RECONSTRUCT 4376 02:46:33,616 --> 02:46:35,852 LANGUAGE SOMEBODY IS HEARING OR 4377 02:46:35,919 --> 02:46:38,054 IMAGINING OR EVEN RECONSTRUCT 4378 02:46:38,121 --> 02:46:39,189 LANGUAGE FROM SOMETHING THAT 4379 02:46:39,255 --> 02:46:41,324 WASN'T LANGUAGE TO BEGIN WITH. 4380 02:46:41,391 --> 02:46:45,729 EXAMPLES, HERE IS A SNIPPET OF 4381 02:46:45,795 --> 02:46:49,332 LANGUAGE, I DIDN'T KNOW WHETHER 4382 02:46:49,399 --> 02:46:54,537 TO SCREAM, HELLER OR RUN AWAY. 4383 02:46:54,604 --> 02:46:55,438 THE DECODED VERSION WAS STARTED 4384 02:46:55,505 --> 02:46:56,873 TO SCREAM AND CRY AND SHE JUST 4385 02:46:56,940 --> 02:46:59,142 SAID I TOLD YOU TO LEAVE ME 4386 02:46:59,209 --> 02:47:01,344 ALONE, YOU CAN'T HURT ME. 4387 02:47:01,411 --> 02:47:03,880 IT'S NOT PERFECT BUT IT'S PRETTY 4388 02:47:03,947 --> 02:47:05,949 SHOCKINGLY GOOD FOR USING 4389 02:47:06,015 --> 02:47:06,149 fMRI. 4390 02:47:06,216 --> 02:47:08,351 THIS ALSO APPLIES TO IMAGINED 4391 02:47:08,418 --> 02:47:08,585 SPEECH. 4392 02:47:08,651 --> 02:47:10,086 AN EXAMPLE OF A PERSON NOT 4393 02:47:10,153 --> 02:47:11,521 LISTENING TO A STORY BUT 4394 02:47:11,588 --> 02:47:13,523 IMAGINING TELLING THE STORY IN 4395 02:47:13,590 --> 02:47:17,193 THEIR HEAD. 4396 02:47:17,260 --> 02:47:20,463 LOOKED FOR A MESSAGE FROM MY 4397 02:47:20,530 --> 02:47:20,697 WIFE. 4398 02:47:20,764 --> 02:47:22,132 THE DECODED VERSION, I THOUGHT 4399 02:47:22,198 --> 02:47:23,767 SHE WOULD COME AND SAY SHE 4400 02:47:23,833 --> 02:47:25,068 MISSES ME. 4401 02:47:25,135 --> 02:47:27,137 LESS ACCURATE BUT STILL WORKS 4402 02:47:27,203 --> 02:47:30,106 REMARKABLY WELL. 4403 02:47:30,173 --> 02:47:32,075 AND WE CAN SHOW SOMEBODY A 4404 02:47:32,142 --> 02:47:34,677 SILENT VIDEO AND PLUG THIS DATA 4405 02:47:34,744 --> 02:47:36,546 INTO THIS DECODER AND READ OUT 4406 02:47:36,613 --> 02:47:40,617 WORDS THAT DESCRIBE WHAT'S 4407 02:47:40,683 --> 02:47:43,620 HAPPENING IN THE VIDEO QUITE 4408 02:47:43,686 --> 02:47:43,987 ACCURATELY. 4409 02:47:44,053 --> 02:47:49,092 WHAT THE DECODER SPITS OUT, SHE 4410 02:47:49,159 --> 02:47:55,265 HELD MY HAND TO HER LIPS AND 4411 02:47:55,331 --> 02:47:55,598 SMILED. 4412 02:47:55,665 --> 02:47:56,499 THIS WAS EXCITING. 4413 02:47:56,566 --> 02:48:00,437 WE CAN BUILD THESE MODELS, 4414 02:48:00,503 --> 02:48:01,738 EXTRACT INFORMATION FROM 4415 02:48:01,805 --> 02:48:03,506 SEMANTIC REPRESENTATIONS IN THE 4416 02:48:03,573 --> 02:48:06,242 BRAIN BUT THIS RAISES BOTH SOME 4417 02:48:06,309 --> 02:48:07,744 EXCITING POSSIBILITIES, THIS 4418 02:48:07,811 --> 02:48:10,613 COULD BE A BENEFIT FOR PEOPLE 4419 02:48:10,680 --> 02:48:12,348 WITH COMMUNICATION DISORDERS, 4420 02:48:12,415 --> 02:48:13,716 WE'RE INTERESTED IN TRYING TO 4421 02:48:13,783 --> 02:48:21,991 USE THIS TECHNOLOGY TO HELP 4422 02:48:22,058 --> 02:48:23,760 PEOPLE WITH APHASIA, INVASIVE 4423 02:48:23,827 --> 02:48:26,463 RECORDINGS ARE NOT APPROPRIATE. 4424 02:48:26,529 --> 02:48:28,965 BUT THIS ALSO RAISES 4425 02:48:29,032 --> 02:48:37,740 POSSIBILITIES THAT fMRI CAN 4426 02:48:37,807 --> 02:48:39,242 EXTRACT PRIVATE INFORMATION THAT 4427 02:48:39,309 --> 02:48:42,011 PEOPLE DON'T WANT TO SHARE AND 4428 02:48:42,078 --> 02:48:44,347 MAYBE EVEN FROM EXISTING PUBLIC 4429 02:48:44,414 --> 02:48:44,747 fMRI DATA. 4430 02:48:44,814 --> 02:48:47,183 THERE'S A LOT OF DATA SHARED IN 4431 02:48:47,250 --> 02:48:49,252 THE WORLD. 4432 02:48:49,319 --> 02:48:52,422 SO, THESE ARE SOME 4433 02:48:52,489 --> 02:48:53,556 POSSIBILITIES. 4434 02:48:53,623 --> 02:48:54,824 I'LL TALK ABOUT WHY WE MAYBE 4435 02:48:54,891 --> 02:48:55,925 SHOULDN'T BE WORRIED OR SHOULD 4436 02:48:55,992 --> 02:49:02,298 BE WORRIED ABOUT THESE THINGS. 4437 02:49:02,365 --> 02:49:03,366 SO, LIMITATIONS. 4438 02:49:03,433 --> 02:49:05,468 THE TECHNOLOGY AS WE CURRENTLY 4439 02:49:05,535 --> 02:49:07,737 HAVE IT HAS SOME PRETTY SEVERE 4440 02:49:07,804 --> 02:49:09,405 LIMITATIONS THAT MAKE THESE 4441 02:49:09,472 --> 02:49:10,707 WORRIES MAYBE LESS WORRYING. 4442 02:49:10,773 --> 02:49:15,745 CURRENTLY IT REQUIRES VERY 4443 02:49:15,812 --> 02:49:17,046 L ARGE fMRI TRAINING SETS, 16 4444 02:49:17,113 --> 02:49:18,248 HOURS FOR EACH USER IN THE DATA 4445 02:49:18,314 --> 02:49:19,349 I SHOWED YOU. 4446 02:49:19,415 --> 02:49:20,984 THE PERSON HAS TO GO BACK IN THE 4447 02:49:21,050 --> 02:49:22,752 SCANNER OVER AND OVER AGAIN. 4448 02:49:22,819 --> 02:49:25,688 YOU CAN'T REALLY DO THAT WITHOUT 4449 02:49:25,755 --> 02:49:27,357 SOMEONE'S CONSENT AND WILLING 4450 02:49:27,423 --> 02:49:28,124 PARTICIPATION. 4451 02:49:28,191 --> 02:49:29,492 THIS IS A VERY DIFFICULT THING 4452 02:49:29,559 --> 02:49:33,897 TO GET THAT MUCH DATA ON 4453 02:49:33,963 --> 02:49:34,130 SOMEONE. 4454 02:49:34,197 --> 02:49:36,332 MODELS HAVE TO BE TRAINED ON 4455 02:49:36,399 --> 02:49:38,635 LANGUAGE PERCEPTION DATA O 4456 02:49:38,701 --> 02:49:43,673 SOMEBODY LISTENING TO STORIES, 4457 02:49:43,740 --> 02:49:45,408 TO LANGUAGE, WHICH HAS ACTUALLY 4458 02:49:45,475 --> 02:49:47,076 DOWN SIDES FOR THERAPEUTIC 4459 02:49:47,143 --> 02:49:48,144 POTENTIAL OR CLINICAL POTENTIAL 4460 02:49:48,211 --> 02:49:52,048 ALSO BECAUSE THAT MEANS IF 4461 02:49:52,115 --> 02:49:53,283 SOMEBODY HAS SEVERE APHAGIA 4462 02:49:53,349 --> 02:49:55,919 WHERE THEY HAVE TROUBLE 4463 02:49:55,985 --> 02:49:57,654 UNDERSTANDING LANGUAGE AS WELL 4464 02:49:57,720 --> 02:50:00,623 AS SPEAKING OUR MAPPING 4465 02:50:00,690 --> 02:50:03,059 TECHNIQUE MIGHT NOT WORK WELL. 4466 02:50:03,126 --> 02:50:05,228 IT HAS LIMITED ACCURACY. 4467 02:50:05,295 --> 02:50:10,233 I SHOWED SOME REASONABLE GOOD 4468 02:50:10,300 --> 02:50:11,768 EXAMPLES. 4469 02:50:11,834 --> 02:50:16,272 IT'S NOT ALWAYS THIS GREAT. 4470 02:50:16,339 --> 02:50:18,675 THERE'S A LONG WAY TO GO. 4471 02:50:18,741 --> 02:50:20,310 THE QUESTION, ARE THESE 4472 02:50:20,376 --> 02:50:21,411 LIMITATIONS FUNDAMENTAL? 4473 02:50:21,477 --> 02:50:22,845 DO WE ALWAYS NEED A LARGE 4474 02:50:22,912 --> 02:50:24,347 TRAINING SAID, TO TRAIN ON 4475 02:50:24,414 --> 02:50:25,782 LANGUAGE DATA? 4476 02:50:25,848 --> 02:50:27,884 AND HOW LIMITED IN ACCURACY ARE 4477 02:50:27,951 --> 02:50:29,586 WE GOING TO BE? 4478 02:50:29,652 --> 02:50:31,020 LET'S TALK ABOUT AVOIDING MODEL 4479 02:50:31,087 --> 02:50:39,596 TRAINING, HOW CAN WE GET AROUND 4480 02:50:39,662 --> 02:50:39,796 THIS? 4481 02:50:39,862 --> 02:50:41,130 CAN WE APPLY TO NEW PEOPLE 4482 02:50:41,197 --> 02:50:44,200 WITHOUT THIS TRAINING DATA? 4483 02:50:44,267 --> 02:50:45,401 WE CAN ANATOMICALLY REGISTER 4484 02:50:45,468 --> 02:50:53,176 BRAINS, THAT DOES NOT WORK. 4485 02:50:53,242 --> 02:50:54,377 THERE'S FUNCTIONAL 4486 02:50:54,444 --> 02:50:55,044 CO-REGISTRATION METHODS THAT 4487 02:50:55,111 --> 02:51:00,016 SEEM PROMISING AND MAKE THIS 4488 02:51:00,083 --> 02:51:00,617 WORRYING. 4489 02:51:00,683 --> 02:51:04,787 THE WAY OUR TYPICAL 4490 02:51:04,854 --> 02:51:05,655 WITHIN-PARTICIPANT MODEL WORKS, 4491 02:51:05,722 --> 02:51:10,226 YOU CLICK THE BIG TRAINING 4492 02:51:10,293 --> 02:51:11,761 DATASETS FROM ONE PARTICIPANT, 4493 02:51:11,828 --> 02:51:14,831 BUILD A MODEL OF HOW BRAIN 4494 02:51:14,897 --> 02:51:15,431 PROCESSES REPRESENTATIVE 4495 02:51:15,498 --> 02:51:18,001 INFORMATION, YOU GET NEW DATA, 4496 02:51:18,067 --> 02:51:22,639 TEST DATA, USE YOUR MODEL TO 4497 02:51:22,705 --> 02:51:24,807 DECODE AND GET A RESULT. 4498 02:51:24,874 --> 02:51:28,277 LOU CAN WE CROSS THE STREAMS 4499 02:51:28,344 --> 02:51:29,178 WITH MULTIPLE PARTICIPANTS? 4500 02:51:29,245 --> 02:51:31,481 WE'RE GOING TO SAY WE HAVE 4501 02:51:31,547 --> 02:51:32,548 PARTICIPANT 1, WE COLLECT 4502 02:51:32,615 --> 02:51:34,751 TRAINING DATA AND BUILD OUR 4503 02:51:34,817 --> 02:51:35,218 MODEL. 4504 02:51:35,284 --> 02:51:38,254 IN ADDITION WE ALSO COLLECT THIS 4505 02:51:38,321 --> 02:51:40,757 SMALL DATASET, CONVERTER 4506 02:51:40,823 --> 02:51:41,157 TRAINING DATASET. 4507 02:51:41,224 --> 02:51:42,859 NOW, WHAT IS IN THIS DATASET, 4508 02:51:42,925 --> 02:51:45,261 I'LL TALK ABOUT IN A MOMENT. 4509 02:51:45,328 --> 02:51:51,401 IT CAN BE MUCH SMALLER THAN 4510 02:51:51,467 --> 02:51:52,735 TRAINING DATASET. 4511 02:51:52,802 --> 02:51:54,170 SECOND PARTICIPANT WE ONLY 4512 02:51:54,237 --> 02:51:55,571 COLLECT THE SMALL CONVERTER 4513 02:51:55,638 --> 02:51:56,773 TRAINING DATASET AND THE TEST 4514 02:51:56,839 --> 02:52:01,844 DATA WE WANT TO DECODE. 4515 02:52:01,911 --> 02:52:03,346 SOME TASK WE WANT TO SEE. 4516 02:52:03,413 --> 02:52:06,082 THEN WE'RE GOING TO USE 4517 02:52:06,149 --> 02:52:07,784 CONVERTER TRAINING DATASETS TO 4518 02:52:07,850 --> 02:52:09,052 TRAINING THIS MODEL TO TAKE DATA 4519 02:52:09,118 --> 02:52:10,687 FROM THE SECOND AND MAKE IT LOOK 4520 02:52:10,753 --> 02:52:12,789 LIKE IT'S FROM THE FIRST ONE. 4521 02:52:12,855 --> 02:52:18,127 WE CALL THIS MAYBE A P2 TO 1 4522 02:52:18,194 --> 02:52:21,164 CONVERTER, TRANSFORMS IT INTO 4523 02:52:21,230 --> 02:52:23,166 PARTICIPANT 1'S BRAIN, IT TURNS 4524 02:52:23,232 --> 02:52:26,102 OUT YOU CAN DO THIS WITH SMALL 4525 02:52:26,169 --> 02:52:26,636 DATASETS. 4526 02:52:26,703 --> 02:52:28,071 WHICH WAS SURPRISING TO US. 4527 02:52:28,137 --> 02:52:30,173 ONCE WE HAVE THIS MODEL WE CAN 4528 02:52:30,239 --> 02:52:34,210 APPLY TO THE TEST DATA, WE GET 4529 02:52:34,277 --> 02:52:36,612 CONVERTED TEST DATA, LOOKS LIKE 4530 02:52:36,679 --> 02:52:40,216 IT'S IN PARTICIPANT 1'S BRAIN, 4531 02:52:40,283 --> 02:52:46,155 IT CAME FROM PARTICIPANT 2 AND 4532 02:52:46,222 --> 02:52:51,728 WE CAN USE THAT TO GET OUR 4533 02:52:51,794 --> 02:52:53,162 RESULT, ORIGINALLY DEVELOPED FOR 4534 02:52:53,229 --> 02:52:55,331 DOING VISUAL DECODING BUT WE'VE 4535 02:52:55,398 --> 02:52:58,101 APPLIED IT HERE, IT WORKS WELL, 4536 02:52:58,167 --> 02:53:02,371 A PAPER STILL IN PROGRESS. 4537 02:53:02,438 --> 02:53:04,107 WHEN WE DO CONVERTER BASED 4538 02:53:04,173 --> 02:53:07,510 APPROACH IT WORKS BETTER FOR 4539 02:53:07,577 --> 02:53:08,945 SMALL DATASETS THAN ACTUALLY 4540 02:53:09,011 --> 02:53:11,814 BUILDING THE MODEL LIKE WITHIN 4541 02:53:11,881 --> 02:53:12,782 THE SUBJECT. 4542 02:53:12,849 --> 02:53:19,222 THIS IS SHOWING HOW WELL WE CAN 4543 02:53:19,288 --> 02:53:21,324 DECODE AND HOW MUCH DATA WE HAVE 4544 02:53:21,390 --> 02:53:24,060 FROM THE PARTICIPANT WE'RE 4545 02:53:24,127 --> 02:53:26,329 TRYING TO DECODE FROM, THE GRAY 4546 02:53:26,395 --> 02:53:30,733 DOTS SHOW IF WE'RE TRAINING A 4547 02:53:30,800 --> 02:53:35,938 MODEL UP TO 256 MINUTES, BLUE 4548 02:53:36,005 --> 02:53:43,846 DOTS SHOWING CONVERTER MODEL, 4549 02:53:43,913 --> 02:53:44,614 TAKING DATA. 4550 02:53:44,680 --> 02:53:46,582 YOU CAN SEE SMALL AMOUNTS OF 4551 02:53:46,649 --> 02:53:49,685 DATA, 15 MINUTES TO TWO HOURS, 4552 02:53:49,752 --> 02:53:52,522 THE CONVERTER WORKS BETTER THAN 4553 02:53:52,588 --> 02:53:53,289 TRAINING MODEL WITHIN SUBJECT, 4554 02:53:53,356 --> 02:53:57,226 THIS IS STILL A FAR CRY AWAY 4555 02:53:57,293 --> 02:53:59,962 FROM WHAT THE FULL DATASET, 19 4556 02:54:00,029 --> 02:54:01,731 SIGMA UP HERE, BUT WE'RE HOPEFUL 4557 02:54:01,798 --> 02:54:03,499 THAT WE HAVE NOT HIT THE CEILING 4558 02:54:03,566 --> 02:54:04,834 HERE AND THERE'S A LOT MORE TO 4559 02:54:04,901 --> 02:54:06,769 BE DONE. 4560 02:54:06,836 --> 02:54:09,172 THIS IS STILL USING LANGUAGE 4561 02:54:09,238 --> 02:54:11,340 DATA, AND IT TURNS OUT THE 4562 02:54:11,407 --> 02:54:13,109 CONCERTER DOESN'T HAVE TO BE 4563 02:54:13,176 --> 02:54:16,179 TRAINED ON LANGUAGE. 4564 02:54:16,245 --> 02:54:17,313 WE TESTED VISUAL STIMULI, 4565 02:54:17,380 --> 02:54:21,851 PARTICIPANTS WATCHED A BUNCH OF 4566 02:54:21,918 --> 02:54:22,752 PIXAR SHORT FILMS, LIKE THESE. 4567 02:54:22,819 --> 02:54:23,653 THEY ARE FUN. 4568 02:54:23,719 --> 02:54:24,487 THEY ARE GREAT. 4569 02:54:24,554 --> 02:54:27,123 THEY DON'T HAVE ANY LANGUAGE. 4570 02:54:27,190 --> 02:54:29,091 THEY ARE FULLY ACTED OUT. 4571 02:54:29,158 --> 02:54:31,594 WE SHOWED WITH NO SOUND ALSO. 4572 02:54:31,661 --> 02:54:35,631 THIS IS SHOWING HOW WELL WE CAN 4573 02:54:35,698 --> 02:54:37,166 DECODE IN A PARTICIPANT, HAVING 4574 02:54:37,233 --> 02:54:39,135 JUST THIS MOVIE DATA FROM THEM. 4575 02:54:39,202 --> 02:54:41,437 WE HAVE NO LANGUAGE TRAINING 4576 02:54:41,504 --> 02:54:44,941 DATA WHATSOEVER FROM A 4577 02:54:45,007 --> 02:54:48,010 PARTICIPANT, AND THIS GOES OUT 4578 02:54:48,077 --> 02:54:50,880 TO 256 MINUTES, THIS GOES TO 64, 4579 02:54:50,947 --> 02:54:52,949 AND EQUIVALENT PERFORMANCE 4580 02:54:53,015 --> 02:54:53,482 THERE. 4581 02:54:53,549 --> 02:54:55,651 THIS IS TRYING TO TRAIN LANGUAGE 4582 02:54:55,718 --> 02:54:57,620 DECODER ON MOVIE DATA, THAT'S 4583 02:54:57,687 --> 02:55:05,294 DIFFICULT TO DO. 4584 02:55:05,361 --> 02:55:07,597 SO, TOGETHER THIS SHOWS THAT 4585 02:55:07,663 --> 02:55:12,134 THESE CAN DECODE BY LEVERING 4586 02:55:12,201 --> 02:55:16,472 EXISTING DECODERS, CAN USE A 4587 02:55:16,539 --> 02:55:27,083 DIFFERENT MODALITY, VISION FROM 4588 02:55:29,352 --> 02:55:31,721 LANGUAGE, WE COULD BUILD A 4589 02:55:31,787 --> 02:55:33,256 CONVERTER WITHOUT TRAINING DATA 4590 02:55:33,322 --> 02:55:40,496 WITH STIMULUS, POSSIBLE EVEN 4591 02:55:40,563 --> 02:55:41,464 WITH RESTING STATE DATA. 4592 02:55:41,530 --> 02:55:42,899 THIS IS A BIG QUESTION THAT 4593 02:55:42,965 --> 02:55:51,407 OPENS UP THE IDEA THESE KINDS OF 4594 02:55:51,474 --> 02:55:52,742 DECODING APPROACHES COULD APPLY 4595 02:55:52,808 --> 02:55:58,547 TO MORE DATA. 4596 02:55:58,614 --> 02:55:59,749 THE LAST PART IMPROVING 4597 02:55:59,815 --> 02:56:03,019 ACCURACY, CAN WE MAKE THEM 4598 02:56:03,085 --> 02:56:03,819 BETTER, ARE THEY LIMITED BY 4599 02:56:03,886 --> 02:56:10,126 TECHNOLOGY WE USE? 4600 02:56:10,192 --> 02:56:12,995 THE CURRENT DECODER USES OLD 4601 02:56:13,062 --> 02:56:15,197 NEURAL NETWORK LANGUAGE MODEL, 4602 02:56:15,264 --> 02:56:19,568 NOW WE'RE UP TO GPT 4, NOT 4603 02:56:19,635 --> 02:56:22,538 PUBLICLY ACCESSIBLE, A SINGLEN 4604 02:56:22,605 --> 02:56:25,374 CODING MODEL, ONE MODEL FOR ONE 4605 02:56:25,441 --> 02:56:28,778 SUBJECT, BUT WE CAN USE BIGGER 4606 02:56:28,844 --> 02:56:30,413 LANGUAGE MODELS SO NOWADAYS THE 4607 02:56:30,479 --> 02:56:32,515 BIGGEST ONE AVAILABLE PUBLICLY 4608 02:56:32,581 --> 02:56:35,685 IS THIS LLAMA2 MODEL FROM META. 4609 02:56:35,751 --> 02:56:41,590 WE CAN USE MODEL ENSEMBLING 4610 02:56:41,657 --> 02:56:42,458 TECHNIQUES, MULTIPLE MODELS FOR 4611 02:56:42,525 --> 02:56:46,529 ONE SUBJECT AND JOIN TOGETHER. 4612 02:56:46,595 --> 02:56:48,831 WE CAN BOOST PERFORMANCE USING 4613 02:56:48,898 --> 02:56:49,365 COMPUTATIONAL TECHNIQUES, 4614 02:56:49,432 --> 02:56:52,335 SHOWING AGAIN THIS SIMILARITY 4615 02:56:52,401 --> 02:56:57,473 METRICS ON THE Y-AXIS, BASELINE 4616 02:56:57,540 --> 02:57:02,645 GPT-1 MODEL, UPGRADING TO 4617 02:57:02,712 --> 02:57:05,181 LLAMA2 A BOOSTER, ADDING 4618 02:57:05,247 --> 02:57:06,916 ENSEMBLING A MASSIVE BOOST, 4619 02:57:06,983 --> 02:57:09,018 BETTER BY ADDING COMPUTATION TO 4620 02:57:09,085 --> 02:57:15,458 THIS MIX, DOING MORE COMPUTE. 4621 02:57:15,524 --> 02:57:18,394 HERE'S AN EXAMPLE, WHAT THE 4622 02:57:18,461 --> 02:57:23,866 PERSON HEARD WAS HE TAKES A DRAG 4623 02:57:23,933 --> 02:57:27,036 OF THE CIGARETTE, A HARD, HARD, 4624 02:57:27,103 --> 02:57:29,271 DRAG, HOT, HOT, HOT. 4625 02:57:29,338 --> 02:57:31,440 GPT VERSION GETS A GIST, A BUZZ 4626 02:57:31,507 --> 02:57:33,342 OFF THE WAY IT MADE MY BLOOD 4627 02:57:33,409 --> 02:57:36,278 PUMP HARD AND FAST TO CONTROL IT 4628 02:57:36,345 --> 02:57:38,481 HURT, LIKE EMOTIONAL VALENCE BUT 4629 02:57:38,547 --> 02:57:40,850 NOT THE CONTENT, THIS NEW 4630 02:57:40,916 --> 02:57:43,386 DECODER SAID SHE TOOK A HIT OFF 4631 02:57:43,452 --> 02:57:48,124 THE JOINT, IT BURNT UP HER 4632 02:57:48,190 --> 02:57:51,260 THROAT FELT LIKE SHE WAS SUCKING 4633 02:57:51,327 --> 02:57:53,262 IT OUT. 4634 02:57:53,329 --> 02:57:54,864 STILL INACCURATE, CIGARETTE 4635 02:57:54,930 --> 02:57:56,165 TURNED INTO JOINT, BUT GETTING 4636 02:57:56,232 --> 02:58:00,803 BETTER AND WE HAVEN'T HIT THE 4637 02:58:00,870 --> 02:58:02,004 LIMITS YET. 4638 02:58:02,071 --> 02:58:05,841 WHAT'S HAPPENING WITH 4639 02:58:05,908 --> 02:58:07,476 IMPROVEMENT IT'S WE'RE TRADING 4640 02:58:07,543 --> 02:58:09,979 COMPUTE FOR BUDGET, USE MORE 4641 02:58:10,046 --> 02:58:11,280 COMPUTER TIME, BIGGER COMPUTERS, 4642 02:58:11,347 --> 02:58:13,649 WE GET MORE ACCURATE DECODING 4643 02:58:13,716 --> 02:58:15,017 AND THAT WORKS QUITE WELL. 4644 02:58:15,084 --> 02:58:21,123 THIS IS WORK BY MY STUDENT R J 4645 02:58:21,190 --> 02:58:21,390 ANTONELLO. 4646 02:58:21,457 --> 02:58:23,759 THAT'S WHAT I WANTED TO TALK 4647 02:58:23,826 --> 02:58:26,629 ABOUT TODAY. 4648 02:58:26,695 --> 02:58:29,265 TO RECAP, WE'VE SEEN LIMITATIONS 4649 02:58:29,331 --> 02:58:36,906 ON WHAT YOU CAN DECODE FROM 4650 02:58:36,972 --> 02:58:37,773 fMRI. 4651 02:58:37,840 --> 02:58:39,742 WE NEED LARGE DATASETS. 4652 02:58:39,809 --> 02:58:41,710 IT HASN'T FULLY REACHED THE SAME 4653 02:58:41,777 --> 02:58:42,378 PERFORMANCE BUT IT'S REMARKABLE 4654 02:58:42,445 --> 02:58:45,214 WHAT WE CAN DO WITH ALMOST NO 4655 02:58:45,281 --> 02:58:47,516 TRAINING DATA FROM A PERSON EVEN 4656 02:58:47,583 --> 02:58:49,151 IN A DIFFERENT MODALITY NOW. 4657 02:58:49,218 --> 02:58:52,688 WE HAVE THIS LIMITED ACCURACY 4658 02:58:52,755 --> 02:58:53,989 BUT THAT WE'RE SEEING THIS 4659 02:58:54,056 --> 02:58:57,927 COMPUTE SCALING, THROW BIGGER 4660 02:58:57,993 --> 02:58:59,662 COMPUTERS AT THE PROBLEM AND 4661 02:58:59,728 --> 02:59:00,796 WITH CLEVER TWEAKS GET 4662 02:59:00,863 --> 02:59:01,430 PERFORMANCE OUT. 4663 02:59:01,497 --> 02:59:03,365 I DON'T THINK THERE'S ANY SENSE 4664 02:59:03,432 --> 02:59:06,235 THAT COMPUTE SCALING IS GOING TO 4665 02:59:06,302 --> 02:59:07,670 SLOW DOWN IN THE FUTURE 4666 02:59:07,736 --> 02:59:08,971 ESPECIALLY WITH THE WAY A.I. 4667 02:59:09,038 --> 02:59:10,506 THINGS ARE GOING. 4668 02:59:10,573 --> 02:59:12,741 WE'LL ONLY SEE MORE INCREASES 4669 02:59:12,808 --> 02:59:13,109 HERE. 4670 02:59:13,175 --> 02:59:15,077 THAT'S WHAT I WANTED TO TALK 4671 02:59:15,144 --> 02:59:15,411 ABOUT. 4672 02:59:15,478 --> 02:59:22,651 I THANK THE PEOPLE WHO DID THIS 4673 02:59:22,718 --> 02:59:24,420 WORK, GRAD STUDENTS IN MY LAB, 4674 02:59:24,487 --> 02:59:27,356 ONE NOW A POSTDOC, FUNDING FROM 4675 02:59:27,423 --> 02:59:28,457 NIDCD AND OTHER SOURCES. 4676 02:59:28,524 --> 02:59:32,962 THANK YOU FOR INVITING ME. 4677 02:59:33,028 --> 02:59:35,564 >> THANK YOU, DR. HUTH. 4678 02:59:35,631 --> 02:59:36,465 EXCITING WORK, CERTAINLY PUSHES 4679 02:59:36,532 --> 02:59:37,967 US TO THINK HARD. 4680 02:59:38,033 --> 02:59:40,035 I'LL BE CURIOUS WHEN WE GET TO 4681 02:59:40,102 --> 02:59:46,742 THE Q&A SESSION IF ANY OF THE 4682 02:59:46,809 --> 02:59:48,611 CONVERTER WORK, MENTAL PRIVACY 4683 02:59:48,677 --> 02:59:50,246 WORK IN PRIOR PAPER IN APRIL, 4684 02:59:50,312 --> 02:59:51,981 CHANGES YOUR VIEWS ON SOME OF 4685 02:59:52,047 --> 02:59:55,184 THE THINGS THAT YOU SAID THERE. 4686 02:59:55,251 --> 02:59:56,919 BUT WE'LL CATCH THAT IN THE Q&A 4687 02:59:56,986 --> 02:59:58,654 WHICH IS COMING UP SOON. 4688 02:59:58,721 --> 03:00:03,159 LET'S TURN TO OUR FINAL 4689 03:00:03,225 --> 03:00:06,762 PRESENTATION FOR THIS PANEL, DR. 4690 03:00:06,829 --> 03:00:09,265 McINTOSH, AN ASSISTANT 4691 03:00:09,331 --> 03:00:11,567 PROFESSOR OF MEDICINE, BIOETHICS 4692 03:00:11,634 --> 03:00:12,368 RESEARCH CENTER, WASHINGTON 4693 03:00:12,434 --> 03:00:13,969 UNIVERSITY SCHOOL OF MEDICINE, 4694 03:00:14,036 --> 03:00:16,238 MASTER'S AND Ph.D. IN 4695 03:00:16,305 --> 03:00:16,839 INDUSTRIAL ORGANIZATIONAL 4696 03:00:16,906 --> 03:00:19,108 PSYCHOLOGY UNIVERSITY OF 4697 03:00:19,175 --> 03:00:20,342 OKLAHOMA WITH SPECIALIZATION IN 4698 03:00:20,409 --> 03:00:22,945 ETHICAL DECISION MAKING, 4699 03:00:23,012 --> 03:00:23,812 INNOVATION AND LEADERSHIP. 4700 03:00:23,879 --> 03:00:25,915 CURRENTLY LEADS FEDERALLY FUNDED 4701 03:00:25,981 --> 03:00:28,517 AND FOUNDATION FUNDED RESEARCH 4702 03:00:28,584 --> 03:00:32,988 ON ETHICAL AND SOCIAL ISSUES IN 4703 03:00:33,055 --> 03:00:36,392 SCIENCED A MEDICINE. 4704 03:00:36,458 --> 03:00:37,760 NEUROETHICS-SPECIFIC WORK 4705 03:00:37,826 --> 03:00:39,261 IDENTIFIES CHALLENGES FOR 4706 03:00:39,328 --> 03:00:40,229 NAVIGATING INDUSTRY, ACADEMIC 4707 03:00:40,296 --> 03:00:42,998 PARTNERSHIPS, AND RESEARCH AND 4708 03:00:43,065 --> 03:00:43,832 COMMERCIALIZATION OF 4709 03:00:43,899 --> 03:00:44,233 NEUROTECHNOLOGIES. 4710 03:00:44,300 --> 03:00:46,468 THANK YOU FOR JOINING US. 4711 03:00:46,535 --> 03:00:48,003 WE'RE LOOKING FORWARD TO YOUR 4712 03:00:48,070 --> 03:00:48,270 COMMENTS. 4713 03:00:48,337 --> 03:00:50,940 >> THANKS YOU FOR HAVING ME. 4714 03:00:51,006 --> 03:00:53,142 LET ME SHARE MY SCREEN. 4715 03:00:53,209 --> 03:00:54,109 YEAH, I'M THRILLED TO TALK WITH 4716 03:00:54,176 --> 03:00:55,678 YOU ABOUT SOME OF THE WORK MY 4717 03:00:55,744 --> 03:01:00,249 TEAM AND I HAVE BEEN WORKING ON. 4718 03:01:00,316 --> 03:01:03,519 I APPLY TRAINING AS 4719 03:01:03,586 --> 03:01:05,621 ORGANIZATIONAL PSYCHOLOGIST TO 4720 03:01:05,688 --> 03:01:07,022 STUDY ETHICAL AND PROFESSIONAL 4721 03:01:07,089 --> 03:01:08,557 ISSUES IN SCIENCE AND MEDICINE, 4722 03:01:08,624 --> 03:01:10,626 BREAD AND BUTTER IN CONDUCT OF 4723 03:01:10,693 --> 03:01:12,494 RESEARCH BROADLY, HOW TO CREATE 4724 03:01:12,561 --> 03:01:15,464 SUPPORTIVE AND HEALTHY WORKPLACE 4725 03:01:15,531 --> 03:01:16,966 ENVIRONMENTS THAT SUPPORT 4726 03:01:17,032 --> 03:01:18,334 QUALITY RESEARCH AND I'VE GOTTEN 4727 03:01:18,400 --> 03:01:21,804 INTO NEUROETHICS IN THE PAST FEW 4728 03:01:21,870 --> 03:01:22,004 YEARS. 4729 03:01:22,071 --> 03:01:25,975 I HAVE AN R01 ON EXPLORING THIS 4730 03:01:26,041 --> 03:01:27,710 ISSUE HOW TO CULTIVATE 4731 03:01:27,776 --> 03:01:29,245 RESPONSIBLE PARTNERSHIPS BETWEEN 4732 03:01:29,311 --> 03:01:31,981 ACADEMIA AND INDUSTRY, RESEARCH 4733 03:01:32,047 --> 03:01:34,750 AND COMMERCIALIZATION OF NEURAL 4734 03:01:34,817 --> 03:01:35,951 TECHNOLOGIES. 4735 03:01:36,018 --> 03:01:38,787 I'LL TALK ABOUT RATIONALE AND 4736 03:01:38,854 --> 03:01:40,656 KEY CONSIDERATIONS DRIVING THIS 4737 03:01:40,723 --> 03:01:43,292 WORK, PRELIMINARY FINDINGS FROM 4738 03:01:43,359 --> 03:01:44,827 A COUPLE STAKEHOLDER GROUPS AS 4739 03:01:44,893 --> 03:01:46,362 PART OF THIS PROJECT. 4740 03:01:46,428 --> 03:01:48,664 IN PARTICULAR I'M GOING TO TALK 4741 03:01:48,731 --> 03:01:52,701 ABOUT FACTORS THAT INFLUENCE 4742 03:01:52,768 --> 03:01:53,736 DECISIONS AND PRIORITIES AND HOW 4743 03:01:53,802 --> 03:01:56,839 WE MIGHT WANT TO BE MORE 4744 03:01:56,905 --> 03:02:04,980 INTENTIONAL IN TRADEOFFS MADE IN 4745 03:02:05,047 --> 03:02:05,748 THIS SPACE. 4746 03:02:05,814 --> 03:02:06,949 NEUROTECHNOLOGYISTS HAVE A 4747 03:02:07,016 --> 03:02:08,784 GROWING CAPACITY TO IDENTIFY AND 4748 03:02:08,851 --> 03:02:12,021 PREVENT AND TREAT A RANGE OF 4749 03:02:12,087 --> 03:02:12,321 CONDITIONS. 4750 03:02:12,388 --> 03:02:14,823 THERE'S A LOT, A SIGNIFICANT 4751 03:02:14,890 --> 03:02:16,225 AMOUNT AND QUALITY OF RESOURCES 4752 03:02:16,292 --> 03:02:25,634 AND RANGE OF EXPERTISE NEEDED TO 4753 03:02:25,701 --> 03:02:27,403 DEVELOP AND SCALE 4754 03:02:27,469 --> 03:02:28,470 NEUROTECHNOLOGIES IN A WAY THAT 4755 03:02:28,537 --> 03:02:29,805 BENEFITS THE PUBLIC. 4756 03:02:29,872 --> 03:02:31,540 YOU WANT IT TO BENEFIT PEOPLE 4757 03:02:31,607 --> 03:02:33,842 IT'S INTENDED TO BENEFIT. 4758 03:02:33,909 --> 03:02:35,277 INDUSTRY ACADEMIA PARTNERSHIPS 4759 03:02:35,344 --> 03:02:37,212 ARE A COMMON MECHANISM FOR 4760 03:02:37,279 --> 03:02:38,213 MAKING THAT HAPPEN. 4761 03:02:38,280 --> 03:02:41,050 EACH ENTITY SERVES A DIFFERENT 4762 03:02:41,116 --> 03:02:44,153 PURPOSE IN BRAINS, UNIQUE 4763 03:02:44,219 --> 03:02:46,755 STRENGTHS AND RESOURCES TO THE 4764 03:02:46,822 --> 03:02:47,089 PAPER. 4765 03:02:47,156 --> 03:02:48,724 IN ACADEMIA PEOPLE WITH 4766 03:02:48,791 --> 03:02:51,360 EXPERTISE ARE NEEDED FOR 4767 03:02:51,427 --> 03:02:52,194 FOUNDATIONAL WORK FOR 4768 03:02:52,261 --> 03:02:52,828 TECHNOLOGIES. 4769 03:02:52,895 --> 03:02:55,397 INDUSTRY, ON THE OTHER HAND, HAS 4770 03:02:55,464 --> 03:02:56,699 THE CONNECTIONS AND RESOURCES 4771 03:02:56,765 --> 03:02:57,499 UNIVERSITIES DON'T NECESSARILY 4772 03:02:57,566 --> 03:03:06,275 HAVE TO BRING THAT TECHNOLOGY TO 4773 03:03:06,342 --> 03:03:07,009 MARKET. 4774 03:03:07,076 --> 03:03:08,010 FEDERAL LEGISLATION ALLOWS 4775 03:03:08,077 --> 03:03:09,645 ACADEMIC INSTITUTIONS TO RETAIN 4776 03:03:09,712 --> 03:03:16,552 OWNERSHIP RIGHTS OF FEDERALLY 4777 03:03:16,618 --> 03:03:17,553 FUNDED INNOVATION. 4778 03:03:17,619 --> 03:03:21,156 YOU CAN SEE IN THE GRAPHIC A LOT 4779 03:03:21,223 --> 03:03:23,025 OF STAKEHOLDERS HAVE A VESTED 4780 03:03:23,092 --> 03:03:25,961 INTEREST IN NOT ONLY PROCESS OF 4781 03:03:26,028 --> 03:03:26,895 RESEARCH AND COMMERCIALIZATION 4782 03:03:26,962 --> 03:03:32,201 BUT OUTCOMES OF THE PROCESS, 4783 03:03:32,267 --> 03:03:34,837 RANGING FROM INDUSTRY, YOU HAVE 4784 03:03:34,903 --> 03:03:36,171 SMALL START-UP COMPANIES MERGING 4785 03:03:36,238 --> 03:03:38,674 OUT OF ACADEMIC SETTINGS, REALLY 4786 03:03:38,741 --> 03:03:40,109 LARGE ESTABLISHED COMPANIES THAT 4787 03:03:40,175 --> 03:03:43,379 OFTEN HAVE THAT MORE TOP-DOWN 4788 03:03:43,445 --> 03:03:43,645 APPROACH. 4789 03:03:43,712 --> 03:03:45,347 WITHIN THE ACADEMIC SETTING IT'S 4790 03:03:45,414 --> 03:03:49,752 NOT HOE HOMOGENOUS. 4791 03:03:49,818 --> 03:03:51,687 HAVE YOU INSTITUTION OFFICIALS 4792 03:03:51,754 --> 03:03:54,757 ON THE REGULATORY SIDE OF 4793 03:03:54,823 --> 03:03:56,725 THINGS, MORE RISK CONSCIOUS, AND 4794 03:03:56,792 --> 03:04:03,866 THE OTHER SIDE PARTNERSHIP 4795 03:04:03,932 --> 03:04:04,733 CULTIVATION INSTITUTIONAL 4796 03:04:04,800 --> 03:04:07,002 OFFICIALS, TO ADAPT MORE OF THE 4797 03:04:07,069 --> 03:04:08,103 ENTREPRENEURIAL AND INNOVATION 4798 03:04:08,170 --> 03:04:10,539 TYPE OF MINDSET AND GOAL. 4799 03:04:10,606 --> 03:04:12,474 SEW THEY HAVE NOT NECESSARILY 4800 03:04:12,541 --> 03:04:15,444 CONFLICTING ROLES WITHIN 4801 03:04:15,511 --> 03:04:20,416 ACADEMIC SETTINGS BUT THEY SERVE 4802 03:04:20,482 --> 03:04:22,818 DIFFERENT PURPOSES. 4803 03:04:22,885 --> 03:04:24,253 YOU HAVE SCIENTISTS, SURGEONS, 4804 03:04:24,319 --> 03:04:25,220 PEOPLE IN GOVERNMENT, THE LIST 4805 03:04:25,287 --> 03:04:26,989 GOING ON. 4806 03:04:27,055 --> 03:04:29,158 THERE'S AREAS OF OVERLAP IN 4807 03:04:29,224 --> 03:04:32,227 PRIORITIES AND VALUES AMONG 4808 03:04:32,294 --> 03:04:33,996 DIFFERENT GROUPS BUT THEY ARE 4809 03:04:34,062 --> 03:04:35,631 STRONG PRIORITIES AND VALUES, 4810 03:04:35,697 --> 03:04:37,699 OCCURS BETWEEN AND WITHIN 4811 03:04:37,766 --> 03:04:39,234 INDUSTRY AND ACADEMIA, EVEN 4812 03:04:39,301 --> 03:04:41,203 WITHIN INDUSTRY AND ACADEMIC 4813 03:04:41,270 --> 03:04:45,607 SETTINGS, LIKE I TALKED ABOUT. 4814 03:04:45,674 --> 03:04:47,810 THIS REPRESENTS THAT BALANCE 4815 03:04:47,876 --> 03:04:49,178 BETWEEN SCIENTIFIC PRINCIPLES 4816 03:04:49,244 --> 03:04:52,414 AND GOALS THAT MANY PEOPLE 4817 03:04:52,481 --> 03:04:55,117 SHARE, AND COMMERCIAL INTERESTS, 4818 03:04:55,184 --> 03:04:56,452 NEUROTECHNOLOGY, ON THE 4819 03:04:56,518 --> 03:04:59,421 LEFT-HAND SIDE YOU HAVE SOME 4820 03:04:59,488 --> 03:05:00,622 SCIENTIFIC VALUES THAT MOST 4821 03:05:00,689 --> 03:05:07,396 PEOPLE VIEW AS INTENDING TO 4822 03:05:07,463 --> 03:05:08,730 UPHOLD INTEGRITY, THE WAY THE 4823 03:05:08,797 --> 03:05:12,868 DATA ARE COLLECTED AND REPORTED, 4824 03:05:12,935 --> 03:05:13,769 HONESTY, OPENNESS, 4825 03:05:13,836 --> 03:05:18,240 ACCOUNTABILITY, FAIRNESS, 4826 03:05:18,307 --> 03:05:19,741 STEWARDSHIP. 4827 03:05:19,808 --> 03:05:22,044 WE ACKNOWLEDGE COMMERCIAL 4828 03:05:22,110 --> 03:05:23,378 PRIORITIES AND PRESSURES, OFTEN 4829 03:05:23,445 --> 03:05:26,515 TIED TO PROFITABILITY AND 4830 03:05:26,582 --> 03:05:30,719 MAINTAINING MARKET SHARE, THEY 4831 03:05:30,786 --> 03:05:33,222 HAVE A FIDUCIARY DUTY, YOU CAN 4832 03:05:33,288 --> 03:05:35,190 START TO SEE HOW THERE'S TENSION 4833 03:05:35,257 --> 03:05:35,757 THERE. 4834 03:05:35,824 --> 03:05:38,160 I WANT CLEAR I'M NOT SAYING 4835 03:05:38,227 --> 03:05:40,529 INDUSTRY HAS NO INTEREST IN 4836 03:05:40,596 --> 03:05:40,996 SCIENTIFIC PRIORITIES. 4837 03:05:41,063 --> 03:05:43,966 I THINK THEY DO. 4838 03:05:44,032 --> 03:05:46,735 I WAS REFRESHING MY MEMORY OF A 4839 03:05:46,802 --> 03:05:50,806 STUDY OF INDICATE MCDUFFEY -- 4840 03:05:50,873 --> 03:05:52,774 KATE MCDUFFEY, ASKING ABOUT 4841 03:05:52,841 --> 03:05:54,309 ETHICAL PRIORITIES IN RESEARCH. 4842 03:05:54,376 --> 03:05:57,179 THE LONG AND SHORT WAS THEY DO 4843 03:05:57,246 --> 03:05:59,581 HAVE THIS VESTED INTEREST IN 4844 03:05:59,648 --> 03:06:02,184 BEING ABLE TO UPHOLD SCIENTIFIC 4845 03:06:02,251 --> 03:06:03,619 PRIORITIES, WHILE HAVING TO 4846 03:06:03,685 --> 03:06:05,487 CONTEND WITH COMMERCIAL 4847 03:06:05,554 --> 03:06:06,688 PRIORITIES BUT THE REALITY WE 4848 03:06:06,755 --> 03:06:10,192 HAVE LIVE AND WORK IN A 4849 03:06:10,259 --> 03:06:16,665 CAPITALISTIC ECONOMIC SYSTEM 4850 03:06:16,732 --> 03:06:19,601 WITH STRONG FINANCIAL INTERESTS. 4851 03:06:19,668 --> 03:06:20,903 THERE'S NON-FINANCIAL FACTORS. 4852 03:06:20,969 --> 03:06:23,372 I LIKE TO CALL IT PRESTIGE 4853 03:06:23,438 --> 03:06:23,639 FACTOR. 4854 03:06:23,705 --> 03:06:26,708 THERE'S PRESSURE TO BE A 4855 03:06:26,775 --> 03:06:29,578 TRAILBLAZER IN THIS SPACE, FIRST 4856 03:06:29,645 --> 03:06:32,748 IN HUMAN TRIALS, ALSO MOVE FAST 4857 03:06:32,814 --> 03:06:35,050 AND BREAK THINGS ETHOS 4858 03:06:35,117 --> 03:06:37,920 ESPECIALLY IN START-UP SPACES 4859 03:06:37,986 --> 03:06:42,491 INCLUDING MORE DISRUPTIVE 4860 03:06:42,558 --> 03:06:46,228 DOMAINS, A GAP BETWEEN THE GOAL 4861 03:06:46,295 --> 03:06:47,996 AND BALANCES OF COMMERCIAL AND 4862 03:06:48,063 --> 03:06:48,864 SCIENTIFIC PRODUCTS. 4863 03:06:48,931 --> 03:06:53,468 WHAT HAPPENS IN PRACTICE, RIGHT? 4864 03:06:53,535 --> 03:06:55,337 THERE'S A GAP THERE. 4865 03:06:55,404 --> 03:07:00,609 I'M STARTLING TO BRIDGE THAT 4866 03:07:00,676 --> 03:07:03,545 GAP, THE QUESTION OF HEY, HOW DO 4867 03:07:03,612 --> 03:07:05,747 YOU GO ABOUT BALANCING THE 4868 03:07:05,814 --> 03:07:08,584 COMPLEX AND SOMETIMES COMPETING 4869 03:07:08,650 --> 03:07:10,252 INTERESTS AND HOW YOU GET 4870 03:07:10,319 --> 03:07:11,453 EXPERTS FROM THE DIFFERENT 4871 03:07:11,520 --> 03:07:13,622 CULTURES TO WORK TOGETHER AND 4872 03:07:13,689 --> 03:07:18,560 CARRY OUT WORK AND HOLD THOSE 4873 03:07:18,627 --> 03:07:21,930 DIFFERENT ENTITIES ACCOUNTABLE. 4874 03:07:21,997 --> 03:07:23,465 IT'S A COMPLEX NETWORK THAT HAS 4875 03:07:23,532 --> 03:07:25,334 AN IMPACT ON DECISIONS AND 4876 03:07:25,400 --> 03:07:29,504 PRIDES MADE ABOUT THE WAY 4877 03:07:29,571 --> 03:07:31,039 NEUROTECHNOLOGY RESEARCH IS 4878 03:07:31,106 --> 03:07:33,342 DONE, THAT'S MORE COMPLICATED 4879 03:07:33,408 --> 03:07:34,977 BECAUSE INFLUENCING FACTORS CAN 4880 03:07:35,043 --> 03:07:37,279 OPERATE BELOW OUR THRESHOLD OF 4881 03:07:37,346 --> 03:07:40,048 DETECTION, SOMETIMES THAT 4882 03:07:40,115 --> 03:07:42,084 INFLUENCE IS NOT BAD, OTHER 4883 03:07:42,150 --> 03:07:43,819 TIMES NOT GREAT, LIKE AN 4884 03:07:43,885 --> 03:07:44,620 UNCONSCIOUS BIAS. 4885 03:07:44,686 --> 03:07:46,254 IT'S A NORMAL PART OF BEING A 4886 03:07:46,321 --> 03:07:47,356 HUMAN BEING, RIGHT? 4887 03:07:47,422 --> 03:07:53,595 BUT IT DOES POSE A RISK TO 4888 03:07:53,662 --> 03:07:55,330 RESEARCH AND SCIENTIFIC 4889 03:07:55,397 --> 03:07:56,298 PRINCIPLES, THIS HAPPENS DESPITE 4890 03:07:56,365 --> 03:07:57,332 GOOD INTENTIONS. 4891 03:07:57,399 --> 03:07:58,600 PEOPLE SAY WE WANT TO DO THE 4892 03:07:58,667 --> 03:07:59,901 RIGHT THING, OF COURSE WE'LL DO 4893 03:07:59,968 --> 03:08:01,136 THE RIGHT THING. 4894 03:08:01,203 --> 03:08:03,338 AND I THINK THAT'S THE CASE THAT 4895 03:08:03,405 --> 03:08:05,841 THE VAST MAJORITY OF PEOPLE IN 4896 03:08:05,907 --> 03:08:08,010 THE SPACE ARE HERE TO DEVELOP 4897 03:08:08,076 --> 03:08:08,710 TECHNOLOGIES THAT BENEFIT 4898 03:08:08,777 --> 03:08:10,679 OTHERS, BENEFIT THE PUBLIC. 4899 03:08:10,746 --> 03:08:12,948 SO THAT'S WHY YOU NEED TO BE 4900 03:08:13,015 --> 03:08:14,249 INTENTIONAL ABOUT TRADEOFFS 4901 03:08:14,316 --> 03:08:15,817 WE'RE WILLING TO MAKE, OUTCOMES 4902 03:08:15,884 --> 03:08:17,552 WE WANT TO PRIORITIZE BECAUSE WE 4903 03:08:17,619 --> 03:08:20,489 CAN'T HAVE OUR CAKE AND EAT IT 4904 03:08:20,555 --> 03:08:21,490 TOO. 4905 03:08:21,556 --> 03:08:23,659 WE'RE TRYING TO DISENTANGLE 4906 03:08:23,725 --> 03:08:25,193 COMPLEXITIES, BE PRO-ACTIVE IN 4907 03:08:25,260 --> 03:08:27,062 BRINGING GROUPS TOGETHER TO 4908 03:08:27,129 --> 03:08:30,999 THINK HOW DO WE WANT TO NAVIGATE 4909 03:08:31,066 --> 03:08:31,400 PROCEEDINGS. 4910 03:08:31,466 --> 03:08:33,535 I WANT TO GIVE AN OVERVIEW OF 4911 03:08:33,602 --> 03:08:37,606 THE RESEARCH STREAM I HAVE GOING 4912 03:08:37,673 --> 03:08:39,875 ON, BIRDSEYE VIEW OF AIMS AND A 4913 03:08:39,941 --> 03:08:41,977 DEEP DIVE INTO THE FIRST AIM 4914 03:08:42,044 --> 03:08:44,680 SPECIFICALLY WITH THE FIRST TWO 4915 03:08:44,746 --> 03:08:44,946 GROUPS. 4916 03:08:45,013 --> 03:08:47,115 THE FIRST AIM WE'RE DOING 4917 03:08:47,182 --> 03:08:49,184 IN-DEPTH INTERVIEWS WITH SEVEN 4918 03:08:49,251 --> 03:08:50,018 NEUROTECHNOLOGY STAKEHOLDER 4919 03:08:50,085 --> 03:08:52,921 GROUPS TO IDENTIFY RISK 4920 03:08:52,988 --> 03:08:57,092 FACTORINGS AND ETHICAL 4921 03:08:57,159 --> 03:08:57,659 CHALLENGES AND BRAINSTORMING 4922 03:08:57,726 --> 03:08:57,926 SOLUTIONS. 4923 03:08:57,993 --> 03:09:01,797 AT THE TOP WE HAVE THE TWO 4924 03:09:01,863 --> 03:09:04,066 CLUSTERS OF INSTITUTIONAL 4925 03:09:04,132 --> 03:09:07,169 OFFICIALS, WE HAVE PARTNERSHIP 4926 03:09:07,235 --> 03:09:07,769 CULTIVATION FOLKS, TECHNOLOGY 4927 03:09:07,836 --> 03:09:13,175 TRANSFER, OFFICE OF TEXT 4928 03:09:13,241 --> 03:09:13,942 MANAGEMENT. 4929 03:09:14,009 --> 03:09:15,677 SECOND HAVE YOU REGULATORY AND 4930 03:09:15,744 --> 03:09:16,778 COMPLIANCE OFFICIALS SO I'LL GET 4931 03:09:16,845 --> 03:09:24,653 BACK TO THOSE BUT WE'VE ALSO 4932 03:09:24,720 --> 03:09:28,156 INTERVIEWED NEUROETHICISTS, TO 4933 03:09:28,223 --> 03:09:32,027 ENGAGE WITH PEOPLE WHO DO THIS, 4934 03:09:32,094 --> 03:09:32,861 TALKING ABOUT RESEARCHERS, 4935 03:09:32,928 --> 03:09:34,062 PHYSICIANS AND SURGEONS, 4936 03:09:34,129 --> 03:09:35,163 INDUSTRY PARTNERS, SO WE'RE 4937 03:09:35,230 --> 03:09:37,799 ROUNDING OUT THIS AIM RIGHT NOW 4938 03:09:37,866 --> 03:09:40,869 AND ARE WORKING ON GETTING SOME 4939 03:09:40,936 --> 03:09:42,204 DATA PUBLISHED. 4940 03:09:42,270 --> 03:09:43,605 TO TAKE YOU THROUGH AND 4941 03:09:43,672 --> 03:09:50,946 LONG-TERM PLAN OF THE AGENDA, 4942 03:09:51,012 --> 03:09:53,582 THE SECOND AIM, BRING IN 4943 03:09:53,648 --> 03:09:56,852 STAKEHOLDER GROUPS TO DEVELOP 4944 03:09:56,918 --> 03:10:01,223 CONSENSUS ON PROMISES PRACTICES 4945 03:10:01,289 --> 03:10:03,325 FOR MITIGATING RISK AND TOOLKIT 4946 03:10:03,391 --> 03:10:08,330 THAT'S GOING TO PROVIDE GUIDANCE 4947 03:10:08,396 --> 03:10:10,866 FOR PEOPLE TO ETHICALLY 4948 03:10:10,932 --> 03:10:12,567 NAVIGATE, SOME GUIDANCE TAILORED 4949 03:10:12,634 --> 03:10:14,269 FOR CERTAIN GROUPS, OTHERS WILL 4950 03:10:14,336 --> 03:10:15,771 BE MORE GENERAL AND I THINK IT 4951 03:10:15,837 --> 03:10:17,539 WILL PROBABLY BE THE CASE WE'LL 4952 03:10:17,606 --> 03:10:21,710 BE ABLE TO REACH CONSENSUS ON 4953 03:10:21,777 --> 03:10:23,545 SOME THINGS AND NOT OTHERS, 4954 03:10:23,612 --> 03:10:24,646 INTERESTING TO SEE HOW THIS 4955 03:10:24,713 --> 03:10:25,080 SHAPES OUT. 4956 03:10:25,147 --> 03:10:29,785 GOING BACK TO THE FIRST AIM, TO 4957 03:10:29,851 --> 03:10:32,320 TALK ABOUT INTERVIEWS WITH 4958 03:10:32,387 --> 03:10:32,988 INSTITUTIONAL OFFICIALS, I KNOW 4959 03:10:33,054 --> 03:10:34,823 WE ONLY HAVE A COUPLE MINUTES 4960 03:10:34,890 --> 03:10:35,023 LEFT. 4961 03:10:35,090 --> 03:10:38,126 I WANT TO GIVE A BIRDSEYE VIEW 4962 03:10:38,193 --> 03:10:42,731 OF CATEGORIES OF QUESTIONS WE'RE 4963 03:10:42,798 --> 03:10:47,769 ASKING FOLKS. 4964 03:10:47,836 --> 03:10:55,544 WE STRUCTURED TO HELP TO ASK 4965 03:10:55,610 --> 03:10:57,312 ABOUT POLICY AND REGULATORY 4966 03:10:57,379 --> 03:10:59,047 CONSIDERATIONS, WHAT WORKS, WHAT 4967 03:10:59,114 --> 03:11:01,683 ISN'T WORKING, WAYS TO GIVE A 4968 03:11:01,750 --> 03:11:04,085 FACE LIFT TO TAKE INTO ACCOUNT 4969 03:11:04,152 --> 03:11:06,822 THESE NUANCES, ESPECIALLY WITH 4970 03:11:06,888 --> 03:11:07,355 NEUROTECHNOLOGY, 4971 03:11:07,422 --> 03:11:07,956 COMMERCIALIZATION, WHAT MIGHT 4972 03:11:08,023 --> 03:11:10,358 NEED TO BE DONE IN THE FUTURE. 4973 03:11:10,425 --> 03:11:14,062 WE ROUND THINGS OUT ASKING ABOUT 4974 03:11:14,129 --> 03:11:15,597 CONTENT THAT SHOULD GO INTO THE 4975 03:11:15,664 --> 03:11:18,533 COOL AT THIS TIME, ADVICE FOR 4976 03:11:18,600 --> 03:11:21,369 OTHER STAKEHOLDERS. 4977 03:11:21,436 --> 03:11:24,472 ONE THING I'M REALIZING PEOPLE 4978 03:11:24,539 --> 03:11:27,309 OPERATE IN A SILO, DIFFERENT 4979 03:11:27,375 --> 03:11:28,176 ASSUMPTIONS, NOT COMMUNICATING 4980 03:11:28,243 --> 03:11:34,616 WITH ONE ANOTHER SO ADVICE IS 4981 03:11:34,683 --> 03:11:35,617 CRITICAL MOVING THE FIELD 4982 03:11:35,684 --> 03:11:35,951 FORWARD. 4983 03:11:36,017 --> 03:11:40,789 ON THE RIGHT-HAND SIDE YOU SEE 4984 03:11:40,856 --> 03:11:42,424 DIFFERENT SAMPLE QUESTIONS, WHAT 4985 03:11:42,490 --> 03:11:43,925 ARE STRATEGIES TO ADDRESS THESE 4986 03:11:43,992 --> 03:11:49,097 ISSUES AND WHAT GAPS OR 4987 03:11:49,164 --> 03:11:50,832 LIMITATIONS ARE THERE. 4988 03:11:50,899 --> 03:11:53,134 I'M GOING TO DO ON A LIGHTNING 4989 03:11:53,201 --> 03:11:55,437 ROUND, PRESENTING MORE IN DETAIL 4990 03:11:55,503 --> 03:11:57,939 AT THE INS MEETING, IF YOU WANT 4991 03:11:58,006 --> 03:12:00,242 TO CHECK THAT OUT. 4992 03:12:00,308 --> 03:12:01,443 INSTITUTIONAL OFFICIALS, A LOT 4993 03:12:01,509 --> 03:12:03,178 TALK ABOUT PATIENT SAFETY AND 4994 03:12:03,245 --> 03:12:07,582 NEEDING TO BALANCE WITH GOALS OF 4995 03:12:07,649 --> 03:12:08,783 INNOVATION AND TRANSPARENCY. 4996 03:12:08,850 --> 03:12:12,053 SOMETIMES EASIER SAID AND DONE. 4997 03:12:12,120 --> 03:12:14,556 THE FIRST REGULATORY 4998 03:12:14,623 --> 03:12:17,859 INSTITUTIONAL OFFICIAL QUOTE, 4999 03:12:17,926 --> 03:12:18,493 SAFEGUARD PERSONAL INFORMATION, 5000 03:12:18,560 --> 03:12:20,028 DATA SHARING, IF YOU CAN GET THE 5001 03:12:20,095 --> 03:12:24,132 COMPANY TO AGREE TO ALLOW YOU TO 5002 03:12:24,199 --> 03:12:26,167 PUBLISH DATA, OPEN DATABASES, 5003 03:12:26,234 --> 03:12:28,670 BENEFICIAL TO PUT THAT OUT AND 5004 03:12:28,737 --> 03:12:31,840 GET THOSE DATASETS TOGETHER. 5005 03:12:31,907 --> 03:12:34,376 SECOND QUOTE FROM CULTIVATION 5006 03:12:34,442 --> 03:12:35,443 INSTITUTIONAL WAS INTERESTING. 5007 03:12:35,510 --> 03:12:39,948 EXPRESSED CONCERNS ABOUT NOT 5008 03:12:40,015 --> 03:12:42,117 OVERMANAGING, SAY, HUMANS, GUT 5009 03:12:42,183 --> 03:12:43,551 REACT TO PROTECT PEOPLE, BUT YOU 5010 03:12:43,618 --> 03:12:46,087 NEED TO TRUST LISTENING TO ALL 5011 03:12:46,154 --> 03:12:47,689 INFORMATION WE RECEIVED, CONSENT 5012 03:12:47,756 --> 03:12:49,457 PROCESS, MAKING AN EDUCATED 5013 03:12:49,524 --> 03:12:49,958 DECISION. 5014 03:12:50,025 --> 03:12:52,193 I THOUGHT IT WAS SO INTERESTING. 5015 03:12:52,260 --> 03:12:53,495 IF YOU'RE PLUGGED IN, YOU KNOW 5016 03:12:53,561 --> 03:12:55,931 THAT'S NOT ALWAYS THE CASE. 5017 03:12:55,997 --> 03:12:57,332 PEOPLE DON'T ALWAYS FULLY 5018 03:12:57,399 --> 03:13:02,570 UNDERSTAND THE SCOPE OF RISKS 5019 03:13:02,637 --> 03:13:04,539 AND BENEFITS. 5020 03:13:04,606 --> 03:13:06,975 YOU CAN SEE THE JUXTAPOSITION, 5021 03:13:07,042 --> 03:13:09,244 HOW THEY ARE SAYING HEY, 5022 03:13:09,311 --> 03:13:10,245 EVERYTHING IS FINE, WE DON'T 5023 03:13:10,312 --> 03:13:12,647 NEED TO MAKE BIG CHANGES HERE. 5024 03:13:12,714 --> 03:13:15,917 I THINK THAT GETTING DIFFERENT 5025 03:13:15,984 --> 03:13:17,552 ENTITIES AND STAKEHOLDER GROUPS 5026 03:13:17,619 --> 03:13:18,653 TO COMMUNICATE MORE EXPLICITLY 5027 03:13:18,720 --> 03:13:23,692 AND EARLY ON WILL HELP PREVENT 5028 03:13:23,758 --> 03:13:26,094 ASSUMPTIONS FROM BEING MADE. 5029 03:13:26,161 --> 03:13:28,063 ANOTHER THEME THAT EMERGED WITH 5030 03:13:28,129 --> 03:13:29,064 INSTITUTIONAL OFFICIALS, WITH 5031 03:13:29,130 --> 03:13:31,132 BOTH GROUPS, PRIOR TO ENTERING 5032 03:13:31,199 --> 03:13:31,733 INTO PARTNERSHIP UNIVERSITIES 5033 03:13:31,800 --> 03:13:34,302 ARE REALLY KEEN ON MAKING SURE 5034 03:13:34,369 --> 03:13:36,604 THERE'S AT LEAST SOME SHADER 5035 03:13:36,671 --> 03:13:38,139 OVERLAP IN VALUES AND GOALS 5036 03:13:38,206 --> 03:13:40,342 BETWEEN INSTITUTION AND THAT 5037 03:13:40,408 --> 03:13:42,510 PERSPECTIVE, INDUSTRY PARTNER, 5038 03:13:42,577 --> 03:13:44,746 AND THEY ILLUSTRATED THE TRUST 5039 03:13:44,813 --> 03:13:46,715 AND OPEN COMMUNICATION AMONG ALL 5040 03:13:46,781 --> 03:13:48,249 PARTIES MATTER, NOT ONLY OPEN 5041 03:13:48,316 --> 03:13:49,818 COMMUNICATION AT THE OUTSET AND 5042 03:13:49,884 --> 03:13:51,386 ESTABLISHMENT OF THAT 5043 03:13:51,453 --> 03:13:52,721 RELATIONSHIP BUT REVISITING 5044 03:13:52,787 --> 03:13:53,388 CONVERSATIONS THROUGHOUT AND 5045 03:13:53,455 --> 03:13:55,890 BECAUSE RESEARCH IS NOT STATIC 5046 03:13:55,957 --> 03:13:57,425 THINGS CHANGE, PARAMETERS 5047 03:13:57,492 --> 03:13:59,294 CHANGE, BEING ABLE TO HAVE THAT 5048 03:13:59,361 --> 03:14:01,629 FLEXIBILITY AND COMMUNICATION, 5049 03:14:01,696 --> 03:14:03,565 BEING ABLE TO PIVOT AS THINGS 5050 03:14:03,631 --> 03:14:08,036 COME TO LIGHT IS CRITICAL FOR 5051 03:14:08,103 --> 03:14:09,137 THESE PARTNERSHIPS. 5052 03:14:09,204 --> 03:14:13,308 WE DON'T WANT TO PARTNER WITH 5053 03:14:13,375 --> 03:14:14,642 SOMEONE THAT'S PATENT TROLL, WE 5054 03:14:14,709 --> 03:14:16,144 VET TO MAKE SURE GOALS ALIGN 5055 03:14:16,211 --> 03:14:22,150 WITH GOALS OF THE UNIVERSITY. 5056 03:14:22,217 --> 03:14:22,684 IN CONVERSATIONS SOMETIMES 5057 03:14:22,751 --> 03:14:25,687 THAT'S EASIER SAID THAN DONE, 5058 03:14:25,754 --> 03:14:27,322 THOSE NEGOTIATIONS CAN BE 5059 03:14:27,389 --> 03:14:27,789 TRICKY. 5060 03:14:27,856 --> 03:14:29,824 INTELLECTUAL PROPERTY WAS A HOT 5061 03:14:29,891 --> 03:14:33,561 TOPIC, BOTH INDUSTRY AND 5062 03:14:33,628 --> 03:14:39,768 ACADEMICA WANT TO RETAIN I.P. 5063 03:14:39,834 --> 03:14:40,235 RIGHTS. 5064 03:14:40,301 --> 03:14:43,071 IT'S ESPECIALLY DIFFICULT TO 5065 03:14:43,138 --> 03:14:48,643 DETERMINE THIS WHEN DEVICE IS 5066 03:14:48,710 --> 03:14:50,945 FROM MULTIPLE FUNDING SOURCES. 5067 03:14:51,012 --> 03:14:51,946 IT GETS COMPLICATED. 5068 03:14:52,013 --> 03:14:56,418 YOU CAN SEE FROM THIS 5069 03:14:56,484 --> 03:14:59,020 INSTITUTIONAL OFFICIAL, HEY, THE 5070 03:14:59,087 --> 03:15:00,555 COMPANIES WANT TO OWN EVERYTHING 5071 03:15:00,622 --> 03:15:01,556 OR NEGOTIATE BEFORE ANYTHING IS 5072 03:15:01,623 --> 03:15:07,762 DEVELOPED, YOU CAN SEE HOW THAT 5073 03:15:07,829 --> 03:15:09,431 GETS TRICKY. 5074 03:15:09,497 --> 03:15:13,835 I.P. ISN'T ALWAYS CLEAN 5075 03:15:13,902 --> 03:15:14,936 ESPECIALLY WITH MULTIPLE FUNDING 5076 03:15:15,003 --> 03:15:15,670 SOURCES. 5077 03:15:15,737 --> 03:15:19,074 THERE'S A LOT OF NUANCE THAT I 5078 03:15:19,140 --> 03:15:21,342 THINK PEOPLE NEED TO BECOME MORE 5079 03:15:21,409 --> 03:15:24,913 AWARE OF AND NAVIGATE. 5080 03:15:24,979 --> 03:15:30,819 DATA SHAKER IS -- DATA SHARING 5081 03:15:30,885 --> 03:15:32,887 IS ALSO LINKED, PROTECTING 5082 03:15:32,954 --> 03:15:33,855 PRIVACY AND CONFIDENTIALITY, 5083 03:15:33,922 --> 03:15:36,724 MAKING SURE CONTRACTS AND 5084 03:15:36,791 --> 03:15:37,425 INFORMED CONSENT DOCUMENTS 5085 03:15:37,492 --> 03:15:38,927 SPECIFY HOW DATA WILL BE USED 5086 03:15:38,993 --> 03:15:43,965 AND BY WHOM, THAT OPENS A CAN OF 5087 03:15:44,032 --> 03:15:45,700 FORMS, WHAT IF TOOLS IMPROVE BUT 5088 03:15:45,767 --> 03:15:47,368 WE DON'T KNOW AT THE TIME OF 5089 03:15:47,435 --> 03:15:50,972 COLLECTING THE DATA, HOW DO WE 5090 03:15:51,039 --> 03:15:53,908 ENSURE THAT THAT'S BEING 5091 03:15:53,975 --> 03:15:54,742 NAVIGATED APPROPRIATELY. 5092 03:15:54,809 --> 03:15:56,644 I WANTED TO SHARE THIS QUOTE 5093 03:15:56,711 --> 03:15:58,079 FROM THE OFFICIAL. 5094 03:15:58,146 --> 03:15:59,614 ALL THE PATIENT DATA, THE 5095 03:15:59,681 --> 03:16:00,715 COMPANY WANTS THAT AS PART OF 5096 03:16:00,782 --> 03:16:04,018 THE LICENSE, THAT COULD BE A 5097 03:16:04,085 --> 03:16:05,320 DEAL BREAKER IF NOT ACCURATELY 5098 03:16:05,386 --> 03:16:06,855 CONSENTED AND APPROVED SO BEING 5099 03:16:06,921 --> 03:16:08,356 ABLE TO HAVE CONVERSATIONS EARLY 5100 03:16:08,423 --> 03:16:11,459 ON AND THROUGHOUT THAT 5101 03:16:11,526 --> 03:16:12,794 PARTNERSHIP IS IMPORTANT. 5102 03:16:12,861 --> 03:16:14,462 RISK MANAGEMENT AND LIABILITY IS 5103 03:16:14,529 --> 03:16:16,965 ANOTHER TOPIC THAT CAME UP. 5104 03:16:17,031 --> 03:16:20,034 UNIVERSITIES ARE VERY RISK 5105 03:16:20,101 --> 03:16:23,538 AVERSE, TALKING WITH REGULATORY 5106 03:16:23,605 --> 03:16:24,973 OFFICIALS BIG ON EMPHASIZING 5107 03:16:25,039 --> 03:16:26,307 CONTRACTS NEED TO IMPROVE PLANS, 5108 03:16:26,374 --> 03:16:30,979 WHO IS ON THE HOOK FOR ADVERSE 5109 03:16:31,045 --> 03:16:33,515 EVENTS, LONG-TERM CARE OF 5110 03:16:33,581 --> 03:16:36,017 PARTICIPANTS, WE TALKED ABOUT 5111 03:16:36,084 --> 03:16:40,622 EARLIER, POST-TRIAL ACCESS AND 5112 03:16:40,688 --> 03:16:42,924 RESPONSIBILITIES, AND 5113 03:16:42,991 --> 03:16:44,325 COMPLICATED TOPIC TO NAVIGATE. 5114 03:16:44,392 --> 03:16:46,528 ROUNDING THINGS OUT THEY 5115 03:16:46,594 --> 03:16:47,262 MENTIONED CONFLICTS OF INTEREST 5116 03:16:47,328 --> 03:16:49,364 QUITE A BIT. 5117 03:16:49,430 --> 03:16:50,465 INDIVIDUAL RESEARCH CONFLICTS OF 5118 03:16:50,532 --> 03:16:52,867 INTEREST, THE WAYS THEY ARE 5119 03:16:52,934 --> 03:16:55,703 MANAGED, NOT A NOVEL FINDING. 5120 03:16:55,770 --> 03:16:57,338 PERHAPS MORE INTERESTINGLY IS 5121 03:16:57,405 --> 03:16:59,874 THE REGULATORY GROUP BROUGHT UP 5122 03:16:59,941 --> 03:17:02,410 THE IDEA OF INSTITUTIONAL 5123 03:17:02,477 --> 03:17:04,045 CONFLICT OF INTEREST, ACADEMIC 5124 03:17:04,112 --> 03:17:05,780 INSTITUTIONS NEED TO CONTENT 5125 03:17:05,847 --> 03:17:08,516 WITH FINANCIAL AND NON-FINANCIAL 5126 03:17:08,583 --> 03:17:09,617 CONFLICTS OF INTEREST, 5127 03:17:09,684 --> 03:17:11,352 IMPLICATIONS FOR THE 5128 03:17:11,419 --> 03:17:13,087 UNIVERSITY'S REPUTATION. 5129 03:17:13,154 --> 03:17:14,622 REGULATORY OFFICIAL, HEY, IN 5130 03:17:14,689 --> 03:17:16,057 TERMS OF COMING UP NEW 5131 03:17:16,124 --> 03:17:18,893 REGULATION, MAYBE IT SHOULD BE 5132 03:17:18,960 --> 03:17:19,894 ON INSTITUTIONAL CONFLICTS 5133 03:17:19,961 --> 03:17:20,895 INTEREST, CLEAR PATH ABOUT 5134 03:17:20,962 --> 03:17:22,764 WHAT'S TO BE DONE, LOOKING FOR 5135 03:17:22,830 --> 03:17:23,831 ACTUAL GOVERNMENT POSITION ON 5136 03:17:23,898 --> 03:17:24,132 IT. 5137 03:17:24,199 --> 03:17:26,367 I THINK A LOT OF ACADEMIC 5138 03:17:26,434 --> 03:17:28,336 INSTITUTIONS ARE TRYING TO 5139 03:17:28,403 --> 03:17:28,770 BENCHMARK. 5140 03:17:28,836 --> 03:17:34,008 HEY, WHAT ARE YOU DOING, NO 5141 03:17:34,075 --> 03:17:35,009 UNIFORM STANDARDS HOW TO 5142 03:17:35,076 --> 03:17:36,311 NAVIGATE GOES. 5143 03:17:36,377 --> 03:17:38,646 AND THE LAST QUOTE, THEY TALK 5144 03:17:38,713 --> 03:17:40,215 ABOUT RISK PERCEPTION, HOW 5145 03:17:40,281 --> 03:17:41,482 THINGS ARE PERCEIVED IN THE "NEW 5146 03:17:41,549 --> 03:17:43,885 YORK TIMES," A FAMILY WANTS TO 5147 03:17:43,952 --> 03:17:45,186 SUE BUT AN INSTITUTION HAS AN 5148 03:17:45,253 --> 03:17:48,456 INTEREST WITH THE COMPANY, THAT 5149 03:17:48,523 --> 03:17:50,258 COULD HAVE INTERESTING 5150 03:17:50,325 --> 03:17:51,759 IMPLICATIONS FOR THE 5151 03:17:51,826 --> 03:17:52,060 INSTITUTION. 5152 03:17:52,126 --> 03:17:56,030 THESE ARE SOME VERY PRELIMINARY 5153 03:17:56,097 --> 03:17:57,232 HIGHLIGHT FINDINGS, CURIOUS TO 5154 03:17:57,298 --> 03:17:59,300 GET REACTION FROM THE GROUP. 5155 03:17:59,367 --> 03:18:00,935 IT'S CLEAR THESE ENTITIES NEED 5156 03:18:01,002 --> 03:18:03,238 TO UNDERSTAND EACH OTHER BETTER 5157 03:18:03,304 --> 03:18:04,872 AND WORK TO RECONCILE DIFFERENT 5158 03:18:04,939 --> 03:18:06,441 CULTURES AND PRIORITIES BECAUSE 5159 03:18:06,507 --> 03:18:09,143 THAT SHAPES HOW SCIENTIFIC WORK 5160 03:18:09,210 --> 03:18:09,577 GETS DONE. 5161 03:18:09,644 --> 03:18:11,246 TO ALSO ESTABLISH RELATIONSHIPS 5162 03:18:11,312 --> 03:18:12,647 THAT ARE MUTUALLY BENEFICIAL, 5163 03:18:12,714 --> 03:18:14,082 EACH OF THESE ENTITIES HAS 5164 03:18:14,148 --> 03:18:16,050 SOMETHING IMPORTANT TO BRING TO 5165 03:18:16,117 --> 03:18:19,554 THE TABLE AND BEING ABLE TO HAVE 5166 03:18:19,621 --> 03:18:23,725 CONVERSATIONS RELATED TO I.P. 5167 03:18:23,791 --> 03:18:25,260 AND DATA TRANSPARENCY AND 5168 03:18:25,326 --> 03:18:26,894 RELATED MATTERS, THINGS NEED TO 5169 03:18:26,961 --> 03:18:28,763 HAPPEN EARLY AND OFTEN. 5170 03:18:28,830 --> 03:18:30,598 SO THAT IS THE LONG AND SHORT OF 5171 03:18:30,665 --> 03:18:31,266 IT. 5172 03:18:31,332 --> 03:18:33,368 THANK YOU TO MY WONDERFUL TEAM. 5173 03:18:33,434 --> 03:18:34,335 PROJECT ADVISORY BOARD, THE 5174 03:18:34,402 --> 03:18:35,203 BRAIN INITIATIVE FOR FUNDING 5175 03:18:35,270 --> 03:18:39,374 THIS WORK. 5176 03:18:39,440 --> 03:18:40,975 I'M LOOKING FORWARD TO 5177 03:18:41,042 --> 03:18:41,242 QUESTIONS. 5178 03:18:41,309 --> 03:18:42,110 >> THANK YOU. 5179 03:18:42,176 --> 03:18:44,879 THERE ALREADY LOTS OF QUESTIONS. 5180 03:18:44,946 --> 03:18:47,615 WE HAVE UNTIL 4:15 FOR 5181 03:18:47,682 --> 03:18:48,950 CONVERSATION THAT FOLLOWS. 5182 03:18:49,017 --> 03:18:51,352 AND I THINK IT'S CLEAR FROM EACH 5183 03:18:51,419 --> 03:18:55,189 OF THESE THAT THERE ARE NOVEL 5184 03:18:55,256 --> 03:18:59,360 ISSUES THAT YOUR WORK RAISES FOR 5185 03:18:59,427 --> 03:19:01,996 THE FIELD. 5186 03:19:02,063 --> 03:19:07,568 RATHER THAN BIOLOGY IT DOWN FOR 5187 03:19:07,635 --> 03:19:09,037 MY KEY TAKEAWAYS WE'LL DIVE IN 5188 03:19:09,103 --> 03:19:11,739 WITH A QUICK ROUND ROBIN, KEY 5189 03:19:11,806 --> 03:19:13,608 NEW QUESTIONS THAT YOUR RESEARCH 5190 03:19:13,675 --> 03:19:15,343 REALLY RAISES FOR THE FIELD AND 5191 03:19:15,410 --> 03:19:18,313 HOW YOU SEE THAT GUIDING MAYBE 5192 03:19:18,379 --> 03:19:22,016 SOME OF THE PRIORITIES FOR 5193 03:19:22,083 --> 03:19:24,619 ACADEMIC RESEARCH OR FOR NEWG OR 5194 03:19:24,686 --> 03:19:24,852 OTHERS. 5195 03:19:24,919 --> 03:19:28,323 JOE, I DON'T MEAN TO HAVE YOU 5196 03:19:28,389 --> 03:19:30,224 REPEAT ANYTHING, BUT IF YOU WANT 5197 03:19:30,291 --> 03:19:34,195 TO KICK OFF BY SAYING HERE'S THE 5198 03:19:34,262 --> 03:19:36,564 KEY NEW ISSUE YOUR RESEARCH WITH 5199 03:19:36,631 --> 03:19:37,899 RESPECT TO IDENTITY AND 5200 03:19:37,965 --> 03:19:38,533 RESTORATION FOR IDENTITY BRINGS 5201 03:19:38,599 --> 03:19:39,100 TO THE FIELD. 5202 03:19:39,167 --> 03:19:42,036 >> THERE ARE TWO THINGS. 5203 03:19:42,103 --> 03:19:43,905 ONE IS METHODOLOGY. 5204 03:19:43,971 --> 03:19:45,773 ONE IS PERSONAL IDENTITY SEEMS 5205 03:19:45,840 --> 03:19:47,942 TO HAVE BEEN RESTORED IN THE 5206 03:19:48,009 --> 03:19:48,276 SMALL SAMPLE. 5207 03:19:48,343 --> 03:19:53,648 TALKING TO GABE, HE MAKES A 5208 03:19:53,715 --> 03:19:56,050 SIMILAR CLAIM IN THE HASTINGS 5209 03:19:56,117 --> 03:19:57,585 CENTER PEOPLE WITH THE OCP 5210 03:19:57,652 --> 03:20:00,121 PEOPLE DESTORED TO HEALTH. 5211 03:20:00,188 --> 03:20:01,189 IDENTITY ASK COMPLICATED. 5212 03:20:01,255 --> 03:20:04,125 THE QUESTIONNAIRE WAS ABOUT 5213 03:20:04,192 --> 03:20:05,760 PERSONALITY, RELATIONALITY, 5214 03:20:05,827 --> 03:20:08,730 FORMER INTEREST, AN AGGREGATE. 5215 03:20:08,796 --> 03:20:10,064 SECOND POINT, METHODOLOGY. 5216 03:20:10,131 --> 03:20:14,102 I THINK THAT WHAT I WAS USING 5217 03:20:14,168 --> 03:20:16,637 HERE I DID INTELLECTUAL HISTORY 5218 03:20:16,704 --> 03:20:17,505 IN COLLEGE. 5219 03:20:17,572 --> 03:20:19,974 I READ TEXT FOR MEANING. 5220 03:20:20,041 --> 03:20:21,976 I WAS TRAINED TO DO THAT. 5221 03:20:22,043 --> 03:20:24,612 WE TOOK THESE NARRATIVES, HAD 5222 03:20:24,679 --> 03:20:27,482 TRANSCRIPTS, I READ IT LIKE 5223 03:20:27,548 --> 03:20:28,316 LITERATURE, THE INTERPRETER 5224 03:20:28,383 --> 03:20:28,649 PROCESS. 5225 03:20:28,716 --> 03:20:31,085 IF YOU READ THE FIVE VIGNETTES 5226 03:20:31,152 --> 03:20:38,993 IN CAMBRIDGE PART 2, EACH WAS 5227 03:20:39,060 --> 03:20:40,261 ITS OWN SHORT STORY. 5228 03:20:40,328 --> 03:20:42,597 I THINK WE NEED TO MARRY THE 5229 03:20:42,663 --> 03:20:44,132 SCIENCE AND HUMANITIES BETTER 5230 03:20:44,198 --> 03:20:46,200 AND THEY ARE BETTER TOGETHER. 5231 03:20:46,267 --> 03:20:48,503 THEY REALLY ARE. 5232 03:20:48,569 --> 03:20:53,007 I JUST -- QUICK ANECDOTE, IN 5233 03:20:53,074 --> 03:20:55,943 2015, THIS IS TOPICAL BECAUSE OF 5234 03:20:56,010 --> 03:20:57,278 WHAT RECENTLY THE CONVERSATION 5235 03:20:57,345 --> 03:20:58,913 WE'RE HAVING ABOUT PRESIDENTIAL 5236 03:20:58,980 --> 03:21:01,282 FITNESS AND HEALTH AND WELLNESS 5237 03:21:01,349 --> 03:21:03,418 AND COGNITIVE ISSUES, RIGHT? 5238 03:21:03,484 --> 03:21:09,524 THE REAGAN DIARIES WERE 5239 03:21:09,590 --> 03:21:11,058 PUBLISHED. 5240 03:21:11,125 --> 03:21:12,260 SORRY, PUBLISHED IN 2007. 5241 03:21:12,326 --> 03:21:16,964 AS I WAS READING THEM, A 5242 03:21:17,031 --> 03:21:21,569 PHYSICIAN, CLINICAL ETHICIST, 5243 03:21:21,636 --> 03:21:22,303 AROUND 1986 IN THE BEGINNING OF 5244 03:21:22,370 --> 03:21:24,972 THE SECOND TERM OF THE REAGAN 5245 03:21:25,039 --> 03:21:27,608 ADMINISTRATION, PRESIDENT REAGAN 5246 03:21:27,675 --> 03:21:29,710 BEGAN TO HAVE -- MAKE ERRORS. 5247 03:21:29,777 --> 03:21:31,646 HE DIDN'T REMEMBER DAN QUAYLE'S 5248 03:21:31,712 --> 03:21:31,979 NAME. 5249 03:21:32,046 --> 03:21:33,281 HE WAS FLYING TO CALIFORNIA, 5250 03:21:33,347 --> 03:21:36,117 WHICH HE HAD DONE IN HELICOPTERS 5251 03:21:36,184 --> 03:21:37,118 ROUTINELY AS GOVERNOR, HE 5252 03:21:37,185 --> 03:21:38,786 DIDN'T -- WASN'T ABLE TO TRACK 5253 03:21:38,853 --> 03:21:39,954 THE LANDMARKS. 5254 03:21:40,021 --> 03:21:41,389 THERE WAS EVIDENCE IN HIS 5255 03:21:41,456 --> 03:21:46,093 DIARIES WHICH UP TO THAT POINT 5256 03:21:46,160 --> 03:21:47,428 WERE CRISPLY WRITTEN, CLEVER, 5257 03:21:47,495 --> 03:21:48,863 MART, BEGINNING TO SHOW 5258 03:21:48,930 --> 03:21:49,697 COGNITIVE IMPAIRMENT. 5259 03:21:49,764 --> 03:21:51,999 I SHARED THESE FINDINGS WITH A 5260 03:21:52,066 --> 03:21:53,868 MEDICAL JOURNALIST WHO COVERS 5261 03:21:53,935 --> 03:21:56,170 PRESIDENTIAL HEALTH BACK AT THAT 5262 03:21:56,237 --> 03:21:58,206 TIME. 5263 03:21:58,272 --> 03:21:59,974 AND BECAUSE IT WAS 5264 03:22:00,041 --> 03:22:01,542 IMPRESSIONISTIC THERE WASN'T A 5265 03:22:01,609 --> 03:22:02,777 LOT OF INTEREST. 5266 03:22:02,844 --> 03:22:05,413 IN 2015, JOURNAL OF ALZHEIMER'S 5267 03:22:05,480 --> 03:22:08,049 DISEASE, THEY DID A COMPARISON 5268 03:22:08,115 --> 03:22:09,450 OF PRESIDENTIAL PRESS 5269 03:22:09,517 --> 03:22:11,219 CONFERENCES OF GEORGE HERBERT 5270 03:22:11,285 --> 03:22:12,854 WALKER BUSH AND PRESIDENT 5271 03:22:12,920 --> 03:22:14,055 REAGAN, AND THEY FOUND PRESIDENT 5272 03:22:14,121 --> 03:22:19,193 REAGAN IN THE SECOND TERM HAD 5273 03:22:19,260 --> 03:22:21,496 DEIMPAIRED IMPAIRED SYNTAX, POOR 5274 03:22:21,562 --> 03:22:22,697 WORD CHOICE, LESS CONTENT, 5275 03:22:22,763 --> 03:22:23,998 PREDICTORS OF ALZHEIMER'S, WHICH 5276 03:22:24,065 --> 03:22:27,401 OF COURSE HE DISCLOSED HAVING IN 5277 03:22:27,468 --> 03:22:28,703 1994, THE POIGNANT LETTER TO THE 5278 03:22:28,769 --> 03:22:29,804 AMERICAN PUBLIC. 5279 03:22:29,871 --> 03:22:31,772 MY POINT HERE IS THESE 5280 03:22:31,839 --> 03:22:34,742 NARRATIVES IN HIS DIARIES WERE 5281 03:22:34,809 --> 03:22:36,344 LEADING INDICATOR AND HYPOTHESIS 5282 03:22:36,410 --> 03:22:38,646 GENERATORS FOR SOMETHING THAT 5283 03:22:38,713 --> 03:22:40,748 WAS EMPIRICALLY STUDIED LATER 5284 03:22:40,815 --> 03:22:41,182 ON. 5285 03:22:41,249 --> 03:22:43,150 THE POSITIVE POWER OF NARRATIVE 5286 03:22:43,217 --> 03:22:46,420 AND KIND OF -- FDA NOW IS 5287 03:22:46,487 --> 03:22:50,057 INCREASINGLY ASKING FOR PATIENT 5288 03:22:50,124 --> 03:22:53,227 PERCEPTIONS OF EFFICACY, LOOKING 5289 03:22:53,294 --> 03:22:54,762 FOR BIOMARKERS, PERCENTAGE 5290 03:22:54,829 --> 03:22:58,165 MARKERS, IN THE NEUROPSYCH OR 5291 03:22:58,232 --> 03:22:59,700 NEUROETHICS SPACE TALKING ABOUT 5292 03:22:59,767 --> 03:23:00,801 DEPRESSION AND RELATIONSHIP AND 5293 03:23:00,868 --> 03:23:02,870 IDENTITY IT'S VERY HARD, YOU 5294 03:23:02,937 --> 03:23:07,842 COULD PUT THE -- YOU CAN HAVE A 5295 03:23:07,909 --> 03:23:10,945 HUNDRED TRAIL Bs, YOU WON'T 5296 03:23:11,012 --> 03:23:13,948 CAPE -- CAPTURE WHO THEY WERE 5297 03:23:14,015 --> 03:23:17,018 AND WHO THEY BECOME. 5298 03:23:17,084 --> 03:23:20,588 THE PLEA THAT ALLOWS US TO NOT 5299 03:23:20,655 --> 03:23:21,188 DISCRIMINATE AGAINST LITERARY 5300 03:23:21,255 --> 03:23:23,024 METHODS OR HUMANITIES BUT SEE 5301 03:23:23,090 --> 03:23:25,760 THEM AS PART OF THE WAY OF 5302 03:23:25,826 --> 03:23:27,261 CAPTURING THE FULLNESS OF THE 5303 03:23:27,328 --> 03:23:32,667 WORK WE'RE DOING IN ADDITION TO 5304 03:23:32,733 --> 03:23:33,301 THE NEUROIMAGING, 5305 03:23:33,367 --> 03:23:37,405 ELECTROPHYSIOLOGY, EACH DESERVE 5306 03:23:37,471 --> 03:23:38,372 EACH OTHER. 5307 03:23:38,439 --> 03:23:43,945 >> THAT'S REALLY HELPFUL. 5308 03:23:44,011 --> 03:23:46,480 A QUICK FOLLOW-UP, IN THINKING 5309 03:23:46,547 --> 03:23:49,550 ABOUT METHODOLOGY BRINGING THESE 5310 03:23:49,617 --> 03:23:50,785 DIFFERENT CONCEPTS TOGETHER, 5311 03:23:50,851 --> 03:23:55,156 IDENTITY IS A LOADED TERM. 5312 03:23:55,222 --> 03:23:56,157 >> RIGHT. 5313 03:23:56,223 --> 03:23:57,358 >> CONCEPT OF CONTINUITY, 5314 03:23:57,425 --> 03:23:58,893 IDENTITY, WHAT YOU'RE MEASURING 5315 03:23:58,960 --> 03:24:00,995 IN METRICS AND LANGUAGE. 5316 03:24:01,062 --> 03:24:06,367 WHEN YOU PUT UP RESTORATION OF 5317 03:24:06,434 --> 03:24:07,401 IDENTITY, BUT DESCRIBED THE 5318 03:24:07,468 --> 03:24:11,072 PERSON WHO SAID THEY WERE IN A 5319 03:24:11,138 --> 03:24:12,373 CONVERSATION WITH THEIR PARTNER 5320 03:24:12,440 --> 03:24:14,809 AND REALIZED THEY NEEDED A NEW 5321 03:24:14,875 --> 03:24:15,743 RELATIONSHIP BECAUSE THEIR 5322 03:24:15,810 --> 03:24:16,544 INTERESTED DIVERGED. 5323 03:24:16,611 --> 03:24:19,947 >> IT WAS A FRIEND, YEAH. 5324 03:24:20,014 --> 03:24:23,317 >> I WONDERED THE EXTENT TO 5325 03:24:23,384 --> 03:24:26,921 WHICH IT IS, YOU KNOW, IT'S 5326 03:24:26,988 --> 03:24:28,923 IDENTITY OR SELF OR 5327 03:24:28,990 --> 03:24:29,657 DISCONTINUITY OR CHANGES. 5328 03:24:29,724 --> 03:24:32,393 HOW YOU THINK ABOUT THE LET'S 5329 03:24:32,460 --> 03:24:32,793 VERSUS -- 5330 03:24:32,860 --> 03:24:37,665 >> YEAH, I THINK THE ALTERNATIVE 5331 03:24:37,732 --> 03:24:39,834 REALLY IS PARABLES FICTITIOUS 5332 03:24:39,900 --> 03:24:40,935 CREATIONS OUT OF CREATIVE MIND 5333 03:24:41,002 --> 03:24:42,937 BUT WHAT WE'RE DOING HERE, 5334 03:24:43,004 --> 03:24:44,438 THAT'S WHY THE THICK 5335 03:24:44,505 --> 03:24:46,307 DESCRIPTIONS ARE REALLY 5336 03:24:46,374 --> 03:24:47,141 IMPORTANT BECAUSE I'M 5337 03:24:47,208 --> 03:24:48,576 SUMMARIZING AND YOU HAVE TO LOOK 5338 03:24:48,643 --> 03:24:50,244 AT WHAT THE INDIVIDUAL SAYS, 5339 03:24:50,311 --> 03:24:52,413 WHAT THEIR FAMILY MECHANICS 5340 03:24:52,480 --> 03:24:54,749 SAID, WHAT PEOPLE WHO ARE IN 5341 03:24:54,815 --> 03:24:56,717 DEEP RELATIONSHIPS SAY ABOUT THE 5342 03:24:56,784 --> 03:24:58,986 NATURE OF THE RELATIONSHIP AND 5343 03:24:59,053 --> 03:25:01,188 SO I THINK IT'S DEEPER SORT OF 5344 03:25:01,255 --> 03:25:03,591 DIVE INTO WHO THIS PERSON IS. 5345 03:25:03,658 --> 03:25:05,559 AND OF COURSE SOME IS 5346 03:25:05,626 --> 03:25:07,862 CONSTRUCTIVE, AND IF WE HAVE AN 5347 03:25:07,928 --> 03:25:10,598 EMPIRICAL METHOD TO TEST THE 5348 03:25:10,665 --> 03:25:11,699 HYPOTHESIS THAT THIS RESTORES 5349 03:25:11,766 --> 03:25:14,135 IDENTITY WHICH I THINK IT DOES, 5350 03:25:14,201 --> 03:25:16,837 MAYBE WE'LL CALL IT SOMETHING 5351 03:25:16,904 --> 03:25:17,838 PERSONALITY, MAYBE IT'S 5352 03:25:17,905 --> 03:25:20,341 IDENTITY, SENSE OF SELF, ELASTIC 5353 03:25:20,408 --> 03:25:20,574 TERMS. 5354 03:25:20,641 --> 03:25:22,443 BUT I THINK THEY ARE PROBEATIVE 5355 03:25:22,510 --> 03:25:23,778 AND ASK US TO ASK THE NEXT SET 5356 03:25:23,844 --> 03:25:24,745 OF QUESTIONS. 5357 03:25:24,812 --> 03:25:25,613 FOR EXAMPLE, A SIMPLER THING 5358 03:25:25,680 --> 03:25:28,449 THAT CAME OUT OF OUR STUDY WAS 5359 03:25:28,516 --> 03:25:30,384 PATIENTS, SUBJECTS WERE TELLING 5360 03:25:30,451 --> 03:25:31,952 US THEIR SLEEP PATTERNS CHANGE. 5361 03:25:32,019 --> 03:25:34,121 WHEN WE DO THE NEXT TRIAL, WE'LL 5362 03:25:34,188 --> 03:25:35,990 STUDY SLEEP IN A FORMAL WAY. 5363 03:25:36,057 --> 03:25:40,594 WE DIDN'T KNOW THAT WAS A 5364 03:25:40,661 --> 03:25:41,829 DIMENSIONALITY OF THE DBS IN THE 5365 03:25:41,896 --> 03:25:43,297 CENTRAL LATERAL WING OF THE 5366 03:25:43,364 --> 03:25:43,998 THALAMUS, RIGHT? 5367 03:25:44,065 --> 03:25:45,766 BUT NOW WE DO. 5368 03:25:45,833 --> 03:25:47,368 AND SO SOMETIMES THEY ARE GOING 5369 03:25:47,435 --> 03:25:48,769 TO REPORT STUFF WHICH IS MUCH 5370 03:25:48,836 --> 03:25:52,039 SIMPLER TO UNDERSTAND. 5371 03:25:52,106 --> 03:25:53,474 SLEEP PATTERNS, HEADACHES, FOR 5372 03:25:53,541 --> 03:25:55,476 EXAMPLE, THAT WE CAN INFORMALLY 5373 03:25:55,543 --> 03:25:56,777 TEST USING METRICS ESTABLISHED. 5374 03:25:56,844 --> 03:25:58,412 IT'S HARD TO TEST IDENTITY. 5375 03:25:58,479 --> 03:26:01,048 THERE'S NO TEST FOR IDENTITY. 5376 03:26:01,115 --> 03:26:03,451 I MEAN, YOU KNOW, PSYCHOANALYSIS 5377 03:26:03,517 --> 03:26:03,784 OR SOMETHING. 5378 03:26:03,851 --> 03:26:04,685 IT WAS COMPLICATED. 5379 03:26:04,752 --> 03:26:06,954 YOU'RE RIGHT TO POINT THIS OUT. 5380 03:26:07,021 --> 03:26:09,590 BUT WE ALSO DON'T WANT TO ENGAGE 5381 03:26:09,657 --> 03:26:10,791 IN SCIENTIFIC REDUCTIONISM AND 5382 03:26:10,858 --> 03:26:14,095 SAY, OH, THERE'S A TEST FOR THIS 5383 03:26:14,161 --> 03:26:16,163 AND IT CAPTURES THAT. 5384 03:26:16,230 --> 03:26:17,798 BETTER WRITERS THAN US HAVE 5385 03:26:17,865 --> 03:26:21,068 TRIED TO CAPTURE WHAT IDENTITY 5386 03:26:21,135 --> 03:26:23,037 IS, SHAKESPEARE, ET CETERA. 5387 03:26:23,104 --> 03:26:23,471 >> YEAH. 5388 03:26:23,537 --> 03:26:24,205 THAT'S HELPFUL. 5389 03:26:24,271 --> 03:26:25,339 CLEARLY AN IMPORTANT ISSUE FOR 5390 03:26:25,406 --> 03:26:27,241 US TO TACKLE. 5391 03:26:27,308 --> 03:26:29,610 YOU MENTIONED HELEN MAYBERG. 5392 03:26:29,677 --> 03:26:30,711 IT'S AN ISSUE SHE'S BEEN 5393 03:26:30,778 --> 03:26:33,547 EXPLORING AND HAS IDEAS ON 5394 03:26:33,614 --> 03:26:35,716 RESEARCH WITH INTERVIEWS FOR 5395 03:26:35,783 --> 03:26:37,818 DBS, BEING ABLE TO MEASURE 5396 03:26:37,885 --> 03:26:39,453 SIMILAR METRICS. 5397 03:26:39,520 --> 03:26:41,522 >> ON HELEN'S WORK ONE OF THE 5398 03:26:41,589 --> 03:26:42,423 VERY INTERESTING THINGS ABOUT 5399 03:26:42,490 --> 03:26:46,660 THE DEPRESSION WORK SHE DID IS 5400 03:26:46,727 --> 03:26:49,663 THAT WHEN THERE'S THEY ARE SO 5401 03:26:49,730 --> 03:26:50,865 MORBIDLY DEPRESSED AND THERAPIES 5402 03:26:50,931 --> 03:26:53,901 FAILED THEM, THEY ARE APATHETIC, 5403 03:26:53,968 --> 03:26:56,370 THEY CAN'T GET OUT OF BED, 5404 03:26:56,437 --> 03:26:58,005 REALLY PSYCHOTICALLY AND DEEPLY 5405 03:26:58,072 --> 03:26:59,140 DEPRESSED, THEY GET TREATMENT 5406 03:26:59,206 --> 03:27:01,542 AND THEY BECOME WELL ENOUGH TO 5407 03:27:01,609 --> 03:27:02,810 HAVE THE PROBLEMS THEY HAD 5408 03:27:02,877 --> 03:27:05,780 BEFORE THEY GOT SO DEPRESSED. 5409 03:27:05,846 --> 03:27:08,182 THERE'S A LET'S OF THEMSELVES 5410 03:27:08,249 --> 03:27:11,352 AND HELEN WILL TELL YOU THAT. 5411 03:27:11,418 --> 03:27:14,955 THE POINT IS, AGAIN, TO GET BACK 5412 03:27:15,022 --> 03:27:16,724 TO PTO QUESTION, POST TRIAL 5413 03:27:16,791 --> 03:27:18,025 OBLIGATION, YOU MAKE THEM BETTER 5414 03:27:18,092 --> 03:27:19,560 THAT WAY BUT HAVE TO HELP THEM 5415 03:27:19,627 --> 03:27:21,395 IN THE WAY YOU MADE THEM 5416 03:27:21,462 --> 03:27:22,196 PERSEVERE AROUND CONTINUE WITH 5417 03:27:22,263 --> 03:27:25,032 THEIR LIVES IN A MEANINGFUL WAY. 5418 03:27:25,099 --> 03:27:25,499 >> AGREED. 5419 03:27:25,566 --> 03:27:27,768 A GOOD AND IMPORTANT ISSUE TO 5420 03:27:27,835 --> 03:27:29,937 CONSIDER ON THE AGENDA. 5421 03:27:30,004 --> 03:27:31,906 INCLUDING WHAT ARE THE MORE 5422 03:27:31,972 --> 03:27:32,540 COMPLEX POST-TRIAL OBLIGATIONS 5423 03:27:32,606 --> 03:27:35,309 WE NEED TO THINK ABOUT AND 5424 03:27:35,376 --> 03:27:37,378 SUPPORT SYSTEM THAT EXIST. 5425 03:27:37,444 --> 03:27:39,113 ALEX, ON THE HOT SEAT FOR A 5426 03:27:39,180 --> 03:27:42,416 MOMENT HERE TO ASK YOU A SIMILAR 5427 03:27:42,483 --> 03:27:42,683 QUESTION. 5428 03:27:42,750 --> 03:27:46,453 I ASKED AT THE END OF YOUR 5429 03:27:46,520 --> 03:27:47,321 PRESENTATION THAT MIGHT ADDRESS 5430 03:27:47,388 --> 03:27:49,390 SOMEWHAT, YOU KNOW, THE ANSWER 5431 03:27:49,456 --> 03:27:51,492 TO THIS QUESTION OF WHAT NEW 5432 03:27:51,559 --> 03:27:54,094 ISSUES DOES THIS PUT ON THE 5433 03:27:54,161 --> 03:27:55,763 AGENDA REALLY THROUGH WHAT YOU 5434 03:27:55,830 --> 03:27:56,397 PRESENTED HERE. 5435 03:27:56,463 --> 03:27:59,667 I WONDER IF IN THAT ANSWER YOU 5436 03:27:59,733 --> 03:28:01,836 MIGHT ALSO REFLECT ON THE 5437 03:28:01,902 --> 03:28:05,840 DIFFERENCE BETWEEN WHAT YOU'RE 5438 03:28:05,906 --> 03:28:08,876 PRESENTING WITH CONVERTER VERSUS 5439 03:28:08,943 --> 03:28:10,110 CLASS FIRE CROSS-PARTICIPANT 5440 03:28:10,177 --> 03:28:14,582 CLASSIFIER WORK YOU PRESENTED IN 5441 03:28:14,648 --> 03:28:15,516 THE PREVIOUS PAPER, AND, YOU 5442 03:28:15,583 --> 03:28:17,618 KNOW, I THINK MANY OF US THOUGHT 5443 03:28:17,685 --> 03:28:20,054 IT WOULD TAKE LONGER TO CROSS 5444 03:28:20,120 --> 03:28:21,689 THIS NEW THRESHOLD YOU'RE 5445 03:28:21,755 --> 03:28:22,756 PRESENTING TODAY, IF YOU COULD 5446 03:28:22,823 --> 03:28:24,859 TALK ABOUT THAT AND WHAT YOU SEE 5447 03:28:24,925 --> 03:28:28,362 AS THE ISSUES THAT RAISES OR 5448 03:28:28,429 --> 03:28:30,998 DOES IT RAISE FOR NEUROETHICS OR 5449 03:28:31,065 --> 03:28:32,533 NEWG TO CONSIDER FURTHER. 5450 03:28:32,600 --> 03:28:33,534 >> YEAH, THANKS. 5451 03:28:33,601 --> 03:28:37,438 THAT'S A BIG QUESTION. 5452 03:28:37,504 --> 03:28:43,811 I THINK THE EASY ANSWER IS THESE 5453 03:28:43,878 --> 03:28:48,082 THINGS ARE ADVANCING QUICKLY. 5454 03:28:48,148 --> 03:28:49,183 WE DON'T KNOW WHAT INFORMATION 5455 03:28:49,250 --> 03:28:50,918 WE'LL GET OUT OF THESE 5456 03:28:50,985 --> 03:28:51,385 RECORDINGS. 5457 03:28:51,452 --> 03:28:53,320 TURNS OUT AT EVERY STEP IT'S 5458 03:28:53,387 --> 03:28:55,089 MORE THAN WE SUSPECTED. 5459 03:28:55,155 --> 03:28:57,258 SO, I THINK REALLY THE ANSWER IS 5460 03:28:57,324 --> 03:29:00,895 LIKE WHAT YOU WROTE IN YOUR 5461 03:29:00,961 --> 03:29:02,529 BOOK, EVERYBODY SHOULD READ 5462 03:29:02,596 --> 03:29:03,530 NITA'S BOOK. 5463 03:29:03,597 --> 03:29:05,399 THAT'S THE SOLUTION HERE. 5464 03:29:05,466 --> 03:29:07,468 THIS IS POTENTIALLY A DANGER. 5465 03:29:07,534 --> 03:29:09,470 POTENTIALLY LIKE A KIND OF BIG 5466 03:29:09,536 --> 03:29:10,771 DEAL, ESPECIALLY WHEN WE ARE 5467 03:29:10,838 --> 03:29:15,576 INTERESTING THIS AGE OF 5468 03:29:15,643 --> 03:29:17,778 NEUROTECH WHERE THERE'S GOING TO 5469 03:29:17,845 --> 03:29:20,614 BE DEVICES WE USE MAYBE EVEN FOR 5470 03:29:20,681 --> 03:29:23,984 LIKE CONSUMER SORT OF 5471 03:29:24,051 --> 03:29:25,219 ELECTRONICS PURPOSES THAT MIGHT 5472 03:29:25,286 --> 03:29:26,954 BE ABLE TO EXTRACT QUITE A BIT 5473 03:29:27,021 --> 03:29:30,557 OF INFORMATION FROM YOU WITHOUT 5474 03:29:30,624 --> 03:29:32,860 YOUR CONSENT OR WITHOUT REALLY 5475 03:29:32,927 --> 03:29:34,428 YOU KNOWING THAT IT'S GETTING 5476 03:29:34,495 --> 03:29:37,564 THAT INFORMATION FROM YOU. 5477 03:29:37,631 --> 03:29:39,667 SO, I THINK, I'M NOT REALLY SURE 5478 03:29:39,733 --> 03:29:41,535 WHAT THE SCIENTIFIC ANSWER IS. 5479 03:29:41,602 --> 03:29:42,736 LET'S JUST KEEP GOING. 5480 03:29:42,803 --> 03:29:44,605 KEEP DOING WHAT WE CAN SO WE 5481 03:29:44,672 --> 03:29:45,906 KNOW WHAT LIMITATIONS ARE. 5482 03:29:45,973 --> 03:29:48,976 THAT'S KIND OF THE COURSE THAT 5483 03:29:49,043 --> 03:29:51,145 WE'VE PLOTTED FROM HERE. 5484 03:29:51,211 --> 03:29:54,648 IF THERE ARE SOLUTIONS THEY 5485 03:29:54,715 --> 03:29:58,385 HAVE TO BE REGULATORY, THAT'S 5486 03:29:58,452 --> 03:30:00,554 WHERE THE ANSWERS TO THIS LIE. 5487 03:30:00,621 --> 03:30:02,723 >> YOU MENTIONED ONE THING IN 5488 03:30:02,790 --> 03:30:06,360 YOUR REMARKS ABOUT, YOU KNOW, 5489 03:30:06,427 --> 03:30:08,262 BOTH ARRESTING DATA AND ALSO 5490 03:30:08,329 --> 03:30:09,330 WHAT'S IN EXISTING REPOSITORIES, 5491 03:30:09,396 --> 03:30:14,702 THAT MIGHT RAISE NEW ISSUE WITH 5492 03:30:14,768 --> 03:30:16,537 THINKING ABOUT HOW DO WE THINK 5493 03:30:16,603 --> 03:30:19,306 ABOUT POTENTIAL RISK AS IT GETS 5494 03:30:19,373 --> 03:30:20,941 BETTER AND BETTER AT THE 5495 03:30:21,008 --> 03:30:24,078 POSSIBILITY OF RE-IDENTIFICATION 5496 03:30:24,144 --> 03:30:25,212 OF DATA THAT'S EXISTING. 5497 03:30:25,279 --> 03:30:27,381 AND SO WITHOUT BEING TOO 5498 03:30:27,448 --> 03:30:28,682 FUTURISTIC BUT RECOGNIZING THIS 5499 03:30:28,749 --> 03:30:31,318 IS GOING MUCH FASTER THAN ANY OF 5500 03:30:31,385 --> 03:30:32,853 US ANTICIPATED, IF YOU MIGHT 5501 03:30:32,920 --> 03:30:34,922 JUST UNPACK THAT A LITTLE BIT 5502 03:30:34,989 --> 03:30:36,824 AND SORT OF WHAT YOU WERE 5503 03:30:36,890 --> 03:30:38,559 THINKING ABOUT BOTH RESTING 5504 03:30:38,625 --> 03:30:41,528 STATE DATA BUT EXISTING 5505 03:30:41,595 --> 03:30:43,630 REPOSITORIES AND WHAT MIGHT BE 5506 03:30:43,697 --> 03:30:47,735 GLEANED FROM A PARTICULARLY -- 5507 03:30:47,801 --> 03:30:50,437 WORK THAT SOMEBODY IS DOING IF 5508 03:30:50,504 --> 03:30:52,006 THERE'S THE POSSIBILITY OF 5509 03:30:52,072 --> 03:30:54,241 DECODING OTHER INFORMATION IN 5510 03:30:54,308 --> 03:30:55,342 THE EXISTING DATASETS. 5511 03:30:55,409 --> 03:30:56,110 >> YEAH, YEAH. 5512 03:30:56,176 --> 03:30:57,644 SO THAT'S WHAT I THINK ONE OF 5513 03:30:57,711 --> 03:30:59,947 THE BIG NEW WORRIES IS BASED ON 5514 03:31:00,014 --> 03:31:00,814 OUR WORK. 5515 03:31:00,881 --> 03:31:02,016 OUR LAST PAPER WE SHOWED THAT 5516 03:31:02,082 --> 03:31:03,951 YOU CAN DO THIS DECODING BUT YOU 5517 03:31:04,018 --> 03:31:06,053 NEED A LOT OF DATA FROM EACH 5518 03:31:06,120 --> 03:31:08,355 PERSON WHICH PUTS REAL LIMITS ON 5519 03:31:08,422 --> 03:31:11,158 HOW FAR YOU CAN GO. 5520 03:31:11,225 --> 03:31:13,927 MOST PUBLIC DATASETS WOULD BE 5521 03:31:13,994 --> 03:31:17,231 SAFE UNDER THAT KIND OF SYSTEM, 5522 03:31:17,297 --> 03:31:18,799 RIGHT? 5523 03:31:18,866 --> 03:31:20,067 BUT NOW IT SEEMS LIKE IF YOU 5524 03:31:20,134 --> 03:31:22,603 ONLY NEED A LITTLE BIT OF DATA 5525 03:31:22,669 --> 03:31:25,005 FROM A PERSON THAT'S ALIGNED, 5526 03:31:25,072 --> 03:31:28,308 THAT WE HAVE OTHER PEOPLE'S DATA 5527 03:31:28,375 --> 03:31:30,577 FOR, IF THERE'S A PUBLIC 5528 03:31:30,644 --> 03:31:32,446 REPOSITORY OF fMRI DATA MAYBE 5529 03:31:32,513 --> 03:31:33,881 YOU COULD COLLECT JUST LIKE A 5530 03:31:33,947 --> 03:31:35,282 LITTLE PIECE OF THAT, MATCHING 5531 03:31:35,349 --> 03:31:41,855 SORT OF STIMULI TO BUILD THIS 5532 03:31:41,922 --> 03:31:45,159 BRIDGE BETWEEN YOUR DECODER AND 5533 03:31:45,225 --> 03:31:45,692 PUBLIC DATASET TO DECODE 5534 03:31:45,759 --> 03:31:48,095 INFORMATION FROM THE PEOPLE IN 5535 03:31:48,162 --> 03:31:49,496 THIS PUBLIC REPOSITORY, WHERE 5536 03:31:49,563 --> 03:31:50,731 THEY CERTAINLY DIDN'T CON 5537 03:31:50,798 --> 03:31:51,498 TONIGHT THAT. 5538 03:31:51,565 --> 03:31:55,235 THAT SEEMS LIKE A DEEPER THING 5539 03:31:55,302 --> 03:31:57,738 THAN WHAT MOST PEOPLE THINK AN 5540 03:31:57,805 --> 03:32:00,507 fMRI STUDY IS, WHICH IS YOU GO, 5541 03:32:00,574 --> 03:32:07,381 PUSH BUTTONS, DO A GO-NO GO 5542 03:32:07,448 --> 03:32:11,118 TASK. 5543 03:32:11,185 --> 03:32:13,220 MAYBE IT GOES DEEPER. 5544 03:32:13,287 --> 03:32:15,956 RESTING STATE IS ONE OF THE 5545 03:32:16,023 --> 03:32:17,458 SCARIEST THINGS HERE. 5546 03:32:17,524 --> 03:32:18,992 WE HAVEN'T SHOWN THAT'S POSSIBLE 5547 03:32:19,059 --> 03:32:20,761 TO DECODE FROM RESTING STATE 5548 03:32:20,828 --> 03:32:21,095 DATA. 5549 03:32:21,161 --> 03:32:23,363 WE HAVEN'T GONE THAT FAR. 5550 03:32:23,430 --> 03:32:25,132 I'M RAISING IT AS A POSSIBILITY 5551 03:32:25,199 --> 03:32:26,767 BECAUSE I DO THINK IT'S REALLY. 5552 03:32:26,834 --> 03:32:28,502 IF YOU HAVE ENOUGH RESTING STATE 5553 03:32:28,569 --> 03:32:30,037 DATA FROM A PERSON, RESTING 5554 03:32:30,104 --> 03:32:35,609 STATE FOR THOSE WHO MAYBE AREN'T 5555 03:32:35,676 --> 03:32:36,743 FAMILIAR, NEUROIMAGING WORLD, 5556 03:32:36,810 --> 03:32:40,247 COMMON TASK, LACK OF TASK FOR 5557 03:32:40,314 --> 03:32:41,215 fMRI STUDIES. 5558 03:32:41,281 --> 03:32:43,083 YOU PUT SOMEONE IN A SCANNER, 5559 03:32:43,150 --> 03:32:45,052 HAVE THEM LOOK AT A DOT FOR 15 5560 03:32:45,119 --> 03:32:48,255 MINUTES, HALF AN HOUR, WHILE YOU 5561 03:32:48,322 --> 03:32:49,656 RECORD fMRI ACTIVITY. 5562 03:32:49,723 --> 03:32:51,892 AND TURNS OUT YOU CAN LOOK AT 5563 03:32:51,959 --> 03:32:53,160 CORRELATIONS IN DATA TO DEFINE 5564 03:32:53,227 --> 03:32:55,362 BRAIN NETWORKS IN A RELIABLE AND 5565 03:32:55,429 --> 03:32:56,196 REPEATABLE WAY. 5566 03:32:56,263 --> 03:32:58,632 IT'S VERY EASY TO DO, 5567 03:32:58,699 --> 03:33:00,267 EXPERIMENTAL, SINCE IT'S BECOME 5568 03:33:00,334 --> 03:33:02,336 POPULAR AS LIKE A THING TO USE A 5569 03:33:02,402 --> 03:33:03,871 LOT OF STUDIES. 5570 03:33:03,937 --> 03:33:06,373 THERE'S A LOT OF INTERESTING 5571 03:33:06,440 --> 03:33:07,474 INFORMATION ABOUT NEUROANATOMY 5572 03:33:07,541 --> 03:33:09,610 AND ORGANIZATION OF COGNITION 5573 03:33:09,676 --> 03:33:13,180 FROM RESTING STATE DATA. 5574 03:33:13,247 --> 03:33:17,818 BUT I THINK THE PRESUMPTION WE 5575 03:33:17,885 --> 03:33:20,554 MAKE, PEOPLE WHO PARTICIPATE AND 5576 03:33:20,621 --> 03:33:21,755 RESEARCHERS MAKE IS THAT YOU'RE 5577 03:33:21,822 --> 03:33:23,490 NOT ACTUALLY ABLE TO GET ANY 5578 03:33:23,557 --> 03:33:25,259 MEANINGFUL INFORMATION OUT OF 5579 03:33:25,325 --> 03:33:26,126 THAT DATA. 5580 03:33:26,193 --> 03:33:28,529 YOU'RE THINKING IN YOUR OWN 5581 03:33:28,595 --> 03:33:29,062 HEAD. 5582 03:33:29,129 --> 03:33:30,164 THERE'S-- NOBODY CAN LOOK IN 5583 03:33:30,230 --> 03:33:32,266 THERE AND SEE WHAT'S GOING ON. 5584 03:33:32,332 --> 03:33:34,101 YOU'RE SEEING LARGE SCALE 5585 03:33:34,168 --> 03:33:36,470 CORRELATIONS, THIS NETWORK OR 5586 03:33:36,537 --> 03:33:37,938 THAT NETWORK, BUT I THINK 5587 03:33:38,005 --> 03:33:39,706 THERE'S A REAL POSSIBILITY THAT 5588 03:33:39,773 --> 03:33:44,278 IT COULD GO FURTHER THAN THAT 5589 03:33:44,344 --> 03:33:45,479 AND I THINK THAT -- I DON'T 5590 03:33:45,546 --> 03:33:47,114 KNOW, THAT RAISES QUESTIONS FOR 5591 03:33:47,181 --> 03:33:49,650 WHAT WE SHOULD DO WITH RESTING 5592 03:33:49,716 --> 03:33:51,385 STATE DATA IN PARTICULAR. 5593 03:33:51,451 --> 03:33:57,858 IT'S A DIFFERENT BEAST THAN 5594 03:33:57,925 --> 03:33:59,293 OTHER fMRI DATASETS, NOT A 5595 03:33:59,359 --> 03:34:00,827 TASK YOU'RE NOT THINKING ABOUT 5596 03:34:00,894 --> 03:34:02,129 ANYTHING INTERESTING, WHATEVER, 5597 03:34:02,196 --> 03:34:03,330 JUST DOING THE EXPERIMENT YOU 5598 03:34:03,397 --> 03:34:07,067 WERE TOLD TO VERSUS OPEN-ENDED 5599 03:34:07,134 --> 03:34:09,803 THINKING ABOUT ANYTHING LIKE 5600 03:34:09,870 --> 03:34:11,538 MAYBE THAT HAS POTENTIAL TO LEAK 5601 03:34:11,605 --> 03:34:14,708 A LOT MORE SENSITIVE 5602 03:34:14,775 --> 03:34:16,577 INFORMATION, I THINK. 5603 03:34:16,643 --> 03:34:18,111 >> TO BE EXPLICIT, ARE WE 5604 03:34:18,178 --> 03:34:22,482 WALKING BACK THEN THE CLAIMS OF 5605 03:34:22,549 --> 03:34:24,117 TRAINED ON ONE PERSON, CAN'T BE 5606 03:34:24,184 --> 03:34:25,886 USED ON ANOTHER PERSON, BECAUSE 5607 03:34:25,953 --> 03:34:28,722 CONVERTER NOW MAKES THAT 5608 03:34:28,789 --> 03:34:28,989 POSSIBLE? 5609 03:34:29,056 --> 03:34:30,023 >> YEAH, THAT STILL REQUIRES 5610 03:34:30,090 --> 03:34:31,892 SOME DATA FROM THE PERSON, 5611 03:34:31,959 --> 03:34:32,125 RIGHT? 5612 03:34:32,192 --> 03:34:33,760 I DON'T THINK WE CAN GET TO THE 5613 03:34:33,827 --> 03:34:36,830 POINT OF REQUIRING NO DATA FROM 5614 03:34:36,897 --> 03:34:37,798 THE PERSON. 5615 03:34:37,864 --> 03:34:38,799 I JUST DON'T THINK THAT'S GOING 5616 03:34:38,865 --> 03:34:40,767 TO WORK. 5617 03:34:40,834 --> 03:34:42,636 THERE'S NOT ENOUGH INFORMATION 5618 03:34:42,703 --> 03:34:48,875 TO DO THIS MAPPING. 5619 03:34:48,942 --> 03:34:51,578 BUT, YEAH, WE'RE PUSHING THE 5620 03:34:51,645 --> 03:34:52,012 CEILING -- 5621 03:34:52,079 --> 03:34:53,614 >> DOWN MUCH FURTHER. 5622 03:34:53,680 --> 03:34:54,548 >> YEAH, YEAH. 5623 03:34:54,615 --> 03:34:56,683 >> I SAW IN DECEMBER SOMEBODY 5624 03:34:56,750 --> 03:35:00,153 HAD AN EEG PAPER USING SIMILAR 5625 03:35:00,220 --> 03:35:04,758 METHODOLOGY TO WHAT YOU'RE 5626 03:35:04,825 --> 03:35:05,158 DOING. 5627 03:35:05,225 --> 03:35:10,764 YOU SIMULATED fNIRS IN THE 5628 03:35:10,831 --> 03:35:12,065 APRIL PAPER. 5629 03:35:12,132 --> 03:35:14,601 ARE YOU PUSHING BEYOND 5630 03:35:14,668 --> 03:35:16,036 HEMODYNAMIC DATA INTO EEG DATA 5631 03:35:16,103 --> 03:35:18,972 AS WELL AS STILL IN HEMODYNAMIC 5632 03:35:19,039 --> 03:35:21,408 MODELS, DID YOU ALSO TEST NEW 5633 03:35:21,475 --> 03:35:24,878 CONVERTER ON fNIRS DATA? 5634 03:35:24,945 --> 03:35:26,980 >> WE'RE STICKING WITH 5635 03:35:27,047 --> 03:35:28,282 HEMODYNAMIC DATA, FOR NOW. 5636 03:35:28,348 --> 03:35:30,584 WE'RE WORKING ON TRYING TO GET 5637 03:35:30,651 --> 03:35:32,319 SOME fNIRS DATA WITH THIS 5638 03:35:32,386 --> 03:35:32,552 SETUP. 5639 03:35:32,619 --> 03:35:34,421 WE DON'T KNOW WHAT THAT LOOKS 5640 03:35:34,488 --> 03:35:38,792 LIKE BUT HOPEFULLY WE'LL HAVE 5641 03:35:38,859 --> 03:35:42,829 RESULTS IN NOT TOO LONG. 5642 03:35:42,896 --> 03:35:46,333 I'M SKEPTICAL ABOUT EEG RESULTS, 5643 03:35:46,400 --> 03:35:47,768 COMPOUNDS ARE STILL MESSY, BUT I 5644 03:35:47,834 --> 03:35:49,703 DON'T KNOW, WE'LL SEE WHAT 5645 03:35:49,770 --> 03:35:52,372 HAPPENS WITH THAT. 5646 03:35:52,439 --> 03:35:54,875 THERE'S ALSO BEEN SOME WORK, 5647 03:35:54,941 --> 03:35:57,611 RECENT WORK ON VISUAL 5648 03:35:57,678 --> 03:35:59,479 RECONSTRUCTION FROM EEG IMAGING 5649 03:35:59,546 --> 03:36:01,248 THAT'S BEEN VERY EFFECTIVE LIKE 5650 03:36:01,315 --> 03:36:02,349 REMARKABLY MORE THAN WE THOUGHT 5651 03:36:02,416 --> 03:36:04,951 IT SHOULD HAVE BEEN. 5652 03:36:05,018 --> 03:36:06,586 I THINK EVERY YEAR, EVERY FEW 5653 03:36:06,653 --> 03:36:07,554 MONTHS WE SEE THE AMOUNT OF DATA 5654 03:36:07,621 --> 03:36:09,523 YOU CAN GET OUT OF THESE SOURCES 5655 03:36:09,589 --> 03:36:11,391 WE'VE HAD FOR A LONG TIME KEEPS 5656 03:36:11,458 --> 03:36:12,926 INCREASING AND INCREASING. 5657 03:36:12,993 --> 03:36:16,897 >> EVERY FEW MONTHS, LIKE YOU 5658 03:36:16,963 --> 03:36:17,764 JUST SAID. 5659 03:36:17,831 --> 03:36:19,099 >> YEAH, ESPECIALLY WITH LIKE 5660 03:36:19,166 --> 03:36:19,499 A.I. 5661 03:36:19,566 --> 03:36:22,502 SO BETTER A.I. MODELS, REALLY 5662 03:36:22,569 --> 03:36:24,771 ENABLING A LOT OF THIS, AND 5663 03:36:24,838 --> 03:36:27,074 THAT'S LETTING US PUSH THINGS 5664 03:36:27,140 --> 03:36:29,810 MUCH FURTHER. 5665 03:36:29,876 --> 03:36:32,312 >> THESE ARE DEFINITELY TWO HUGE 5666 03:36:32,379 --> 03:36:36,583 ISSUES, AND IS IT TRISTAN. 5667 03:36:36,650 --> 03:36:37,584 >> TRISTAN. 5668 03:36:37,651 --> 03:36:37,884 >> GREAT. 5669 03:36:37,951 --> 03:36:41,655 I WANTED TO MAKE SURE I GOT THAT 5670 03:36:41,722 --> 03:36:41,955 RIGHT. 5671 03:36:42,022 --> 03:36:42,923 TRISTAN, GIVEN WHAT YOU'RE 5672 03:36:42,989 --> 03:36:47,527 SEEING ABOUT BEING ABLE TO HAVE 5673 03:36:47,594 --> 03:36:48,729 EEFFECTIVE TOOL KIDS, 5674 03:36:48,795 --> 03:36:51,365 BRINGING -- BRIDGING TOGETHER 5675 03:36:51,431 --> 03:37:01,375 INDUSTRY AND ACADEMIA WORK, FOR 5676 03:37:01,441 --> 03:37:04,578 TOOL KITS, WHAT DO YOU SEE AS 5677 03:37:04,644 --> 03:37:07,047 THE NEW ISSUES THAT ARE ARISING 5678 03:37:07,114 --> 03:37:08,882 FROM THE WORK YOU'RE DOING IN 5679 03:37:08,949 --> 03:37:10,417 THIS SPACE, THE KEY NEW FINDINGS 5680 03:37:10,484 --> 03:37:12,285 THAT ARE PUSHING THE FIELD 5681 03:37:12,352 --> 03:37:13,720 FORWARD IN THIS SPACE. 5682 03:37:13,787 --> 03:37:14,888 >> YEAH, GOOD QUESTION. 5683 03:37:14,955 --> 03:37:18,625 WE'RE STILL GOING THROUGH ALL OF 5684 03:37:18,692 --> 03:37:21,495 OUR DATA SO EVERYTHING WITH THE 5685 03:37:21,561 --> 03:37:23,463 CAVEAT IF IT'S PRELIMINARY, I 5686 03:37:23,530 --> 03:37:25,632 THINK THERE'S -- SOMEONE BROUGHT 5687 03:37:25,699 --> 03:37:30,670 UP IN THIS WORKSHOP, I THINK 5688 03:37:30,737 --> 03:37:31,371 JENNY, NEUROETHICS 5689 03:37:31,438 --> 03:37:32,239 IMPLEMENTATION RESEARCH, A LOT 5690 03:37:32,305 --> 03:37:36,042 THAT COULD BE EXPLORED THERE 5691 03:37:36,109 --> 03:37:37,477 BECAUSE EVERYTHING'S SO 5692 03:37:37,544 --> 03:37:38,812 COMPLICATED AND INTERCONNECTED, 5693 03:37:38,879 --> 03:37:42,516 PEOPLE ARE WORKING FROM 5694 03:37:42,582 --> 03:37:43,183 DIFFERENT ASSUMPTION, PRACTICES, 5695 03:37:43,250 --> 03:37:45,452 WHEN YOU PUT THOSE FOLKS 5696 03:37:45,519 --> 03:37:47,554 TOGETHER IN THIS SPACE TO DO 5697 03:37:47,621 --> 03:37:49,456 NEUROTECHNOLOGY RESEARCH AND 5698 03:37:49,523 --> 03:37:50,924 COMMERCIALIZE IT, THERE'S A LOT 5699 03:37:50,991 --> 03:37:56,396 OF OPPORTUNITIES FOR ERROR TO 5700 03:37:56,463 --> 03:37:57,931 HAPPEN, AND JUST LOOKING FORWARD 5701 03:37:57,998 --> 03:38:01,334 THERE'S GOING TO NEED TO BE MORE 5702 03:38:01,401 --> 03:38:03,069 EXPLICIT CONVERSATIONS WITH THE 5703 03:38:03,136 --> 03:38:05,806 STAKEHOLDERS IN THIS SPACE AT 5704 03:38:05,872 --> 03:38:06,907 VARIOUS POINTS THROUGHOUT THE 5705 03:38:06,973 --> 03:38:08,275 NEUROTECHNOLOGY RESEARCH AND 5706 03:38:08,341 --> 03:38:09,075 DEVELOPMENT PROCESS. 5707 03:38:09,142 --> 03:38:11,845 PEOPLE ARE SAYING, HEY, WE'LL 5708 03:38:11,912 --> 03:38:15,115 HAVE TOOL KITS MADE AND WE'LL BE 5709 03:38:15,182 --> 03:38:16,483 READY TO WASH YOUR HANDS OF IT 5710 03:38:16,550 --> 03:38:20,353 BUT IT NEEDS TO BE AN ONGOING 5711 03:38:20,420 --> 03:38:21,154 CONVERSATION, ESPECIALLY BECAUSE 5712 03:38:21,221 --> 03:38:23,323 AS WE'RE HEARING LIKE THESE 5713 03:38:23,390 --> 03:38:24,424 TECHNOLOGY WAS CHANGING, 5714 03:38:24,491 --> 03:38:25,926 IMPROVING SO RAPIDLY, SO IT 5715 03:38:25,992 --> 03:38:27,794 MIGHT WORK WELL TODAY, MIGHT NOT 5716 03:38:27,861 --> 03:38:29,863 NECESSARILY APPLY OR BE THE SAME 5717 03:38:29,930 --> 03:38:32,466 TEN YEARS FROM NOW, THE 5718 03:38:32,532 --> 03:38:33,166 TECHNOLOGIES BEING DEVELOPED ARE 5719 03:38:33,233 --> 03:38:34,801 SO MUCH MORE POWERFUL AND CAN 5720 03:38:34,868 --> 03:38:35,869 GET MORE ACCURATE. 5721 03:38:35,936 --> 03:38:41,575 HOW WE SET UP THIS SYSTEM THAT 5722 03:38:41,641 --> 03:38:43,009 AFFORDS FLEXIBILITY AND ALLOWS 5723 03:38:43,076 --> 03:38:46,713 DIFFERENT GROUPS TO MEET THOSE 5724 03:38:46,780 --> 03:38:47,647 EVOLVING CHALLENGES. 5725 03:38:47,714 --> 03:38:48,482 >> THAT'S HELPFUL. 5726 03:38:48,548 --> 03:38:51,852 I WOULD IMAGINE THERE'S GOING TO 5727 03:38:51,918 --> 03:38:53,286 BE SERIOUS CONVERGENCE OF WORK. 5728 03:38:53,353 --> 03:38:56,456 WE WERE HEARING ABOUT THOSE FROM 5729 03:38:56,523 --> 03:39:00,727 JOE AND ALEX OF IDENTITY AND 5730 03:39:00,794 --> 03:39:03,463 QUESTIONS OF NEUROSTIMULATION, 5731 03:39:03,530 --> 03:39:04,498 ESPECIALLY WITH NEUROTECHNOLOGY 5732 03:39:04,564 --> 03:39:05,866 MOVING FROM READ BUT WRITE 5733 03:39:05,932 --> 03:39:07,734 CAPABILITIES AS WELL ABOUT THE 5734 03:39:07,801 --> 03:39:08,435 EVOLVING CONVERSATION THAT'S 5735 03:39:08,502 --> 03:39:11,037 GOING TO NEED TO BE HAD. 5736 03:39:11,104 --> 03:39:13,006 AND THE QUESTION HOW ULTIMATELY 5737 03:39:13,073 --> 03:39:17,043 WE'RE GOING BRIDGE THAT GAP. 5738 03:39:17,110 --> 03:39:17,344 STAY TUNED. 5739 03:39:17,410 --> 03:39:18,345 RESEARCH WILL BE IMPORTANT. 5740 03:39:18,411 --> 03:39:20,213 LET ME OPEN TO OTHER QUESTIONS 5741 03:39:20,280 --> 03:39:21,214 BECAUSE I'M HOGGING THE 5742 03:39:21,281 --> 03:39:23,950 CONVERSATION AND I KNOW THAT WE 5743 03:39:24,017 --> 03:39:25,952 HAVE A LOT OF QUESTIONS BREWING 5744 03:39:26,019 --> 03:39:27,654 BETWEEN EVERYBODY WHO IS HERE. 5745 03:39:27,721 --> 03:39:28,655 LET ME SEE IF THERE ARE OTHER 5746 03:39:28,722 --> 03:39:30,056 QUESTIONS BECAUSE IF NOT I COULD 5747 03:39:30,123 --> 03:39:31,591 TALK TO THESE GUYS ALL DAY LONG 5748 03:39:31,658 --> 03:39:33,460 BUT I KNOW THERE ARE OTHER 5749 03:39:33,527 --> 03:39:34,461 QUESTIONS FROM THE GROUP. 5750 03:39:34,528 --> 03:39:38,598 SO RAISE YOUR HAND IF YOU'D LIKE 5751 03:39:38,665 --> 03:39:41,067 TO JUMP IN. 5752 03:39:41,134 --> 03:39:42,536 >> AMY HAS A GREAT QUESTION IN 5753 03:39:42,602 --> 03:39:43,403 THE CHAT. 5754 03:39:43,470 --> 03:39:44,538 >> WITH THE CONVERSATION YOU PUT 5755 03:39:44,604 --> 03:39:46,273 INTO THE CHAT HERE. 5756 03:39:46,339 --> 03:39:47,274 >> SORRY, I WAS MOSTLY WRITING 5757 03:39:47,340 --> 03:39:49,843 THAT FOR JOE. 5758 03:39:49,910 --> 03:39:50,977 IT'S A RELEVANT CONVERSATION. 5759 03:39:51,044 --> 03:39:53,079 IT'S JUST ABOUT THE IDEA OF 5760 03:39:53,146 --> 03:39:55,015 PERSONAL IDENTITY AND WHETHER 5761 03:39:55,081 --> 03:39:56,116 WE'RE RESTORING PERSONAL 5762 03:39:56,182 --> 03:39:56,650 IDENTITY. 5763 03:39:56,716 --> 03:40:00,954 I THINK WE HAVE UNDERESTIMATED 5764 03:40:01,021 --> 03:40:03,557 THE DISRUPTION TO SENSE OF SELF 5765 03:40:03,623 --> 03:40:05,191 OR IDENTITY THAT ANY SERIOUS 5766 03:40:05,258 --> 03:40:06,726 ILLNESS PRESENTS. 5767 03:40:06,793 --> 03:40:09,462 WE'VE HAD SIMILAR EXPERIENCES, 5768 03:40:09,529 --> 03:40:10,330 INTERVIEWING INDIVIDUALS WHO 5769 03:40:10,397 --> 03:40:12,532 HAVE HAD DEEP BRAIN STIMULATION, 5770 03:40:12,599 --> 03:40:15,035 HAVE OFTEN A SEPARATE PROJECT 5771 03:40:15,101 --> 03:40:16,603 INTERVIEWING PEOPLE WITH 5772 03:40:16,670 --> 03:40:17,671 PSYCHEDELIC EXPERIENCES, A 5773 03:40:17,737 --> 03:40:21,074 DIFFERENT TYPE OF IMPACT ON THE 5774 03:40:21,141 --> 03:40:21,708 BRAIN. 5775 03:40:21,775 --> 03:40:22,609 WE'RE HEARING SIMILAR THINGS 5776 03:40:22,676 --> 03:40:27,013 ABOUT, YOU KNOW, WE'RE LOOKING 5777 03:40:27,080 --> 03:40:30,850 SPECIFICALLY AT THIS CRITIQUE 5778 03:40:30,917 --> 03:40:32,452 PSYCHEDELIC EXPERIENCE IS A 5779 03:40:32,519 --> 03:40:32,953 DIFFERENT TRANSFORMATIVE 5780 03:40:33,019 --> 03:40:34,487 EXPERIENCES THAT CHANGES YOU IN 5781 03:40:34,554 --> 03:40:35,255 SOME FUNDAMENTAL WAY AND YOU 5782 03:40:35,322 --> 03:40:36,556 CAN'T KNOW WHAT IT IS BEFORE 5783 03:40:36,623 --> 03:40:39,059 DOING IT SO THEREFORE IT 5784 03:40:39,125 --> 03:40:40,694 THREATENS YOUR ABILITY TO GIVE 5785 03:40:40,760 --> 03:40:41,728 INFORMED CONSENT. 5786 03:40:41,795 --> 03:40:43,630 SIMILAR ARGUMENTS HAVE BEEN MADE 5787 03:40:43,697 --> 03:40:44,831 IN LITERATURE ABOUT DEEP BRAIN 5788 03:40:44,898 --> 03:40:46,433 STIMULATION AT LEAST IN THE 5789 03:40:46,499 --> 03:40:48,468 EARLY DAYS AND I THINK SOME 5790 03:40:48,535 --> 03:40:49,869 RESEARCH BEING DONE MOSTLY 5791 03:40:49,936 --> 03:40:51,972 FUNDED BY THE BRAIN INITIATIVE 5792 03:40:52,038 --> 03:40:53,039 HAS COUNTER BALANCED THAT 5793 03:40:53,106 --> 03:40:55,575 SAYING, NO, IT'S NOT CHANGING 5794 03:40:55,642 --> 03:40:56,443 PEOPLE FUNDAMENTALLY IN THEIR 5795 03:40:56,509 --> 03:40:58,511 PERSONALITY AND SENSE OF SELF. 5796 03:40:58,578 --> 03:41:00,280 IT MIGHT BE RESTORING THEM IN 5797 03:41:00,347 --> 03:41:02,115 SOME WAY TO THEIR PRE-DISEASE 5798 03:41:02,182 --> 03:41:04,150 STATE OR CHANGING THEM SLIGHTLY 5799 03:41:04,217 --> 03:41:05,952 BUT NOT IN FUNDAMENTAL WAYS 5800 03:41:06,019 --> 03:41:08,488 WHERE GOALS CHANGE IN A WAY THEY 5801 03:41:08,555 --> 03:41:11,858 CAN'T HAVE MADE DECISIONS BEFORE 5802 03:41:11,925 --> 03:41:12,425 THAT. 5803 03:41:12,492 --> 03:41:14,794 ANYWAYS, MY POINT WAS JUST THAT 5804 03:41:14,861 --> 03:41:17,230 THIS IDEA OF SOME RESTORATION OR 5805 03:41:17,297 --> 03:41:20,400 CHANGE TO IDENTITY, WHAT'S THE 5806 03:41:20,467 --> 03:41:21,468 MORAL AND ETHICAL SIGNIFICANCE? 5807 03:41:21,534 --> 03:41:24,004 WHY DO WE CARE ABOUT THAT? 5808 03:41:24,070 --> 03:41:25,438 I DON'T REMEMBER IF IT WAS BEN 5809 03:41:25,505 --> 03:41:28,041 OR SOMEBODY MADE THE POINT LOTS 5810 03:41:28,108 --> 03:41:31,244 OF THINGS HAPPEN IN CHILDHOOD, I 5811 03:41:31,311 --> 03:41:34,848 WOULD ARGUE ALSO IN ADULTHOOD 5812 03:41:34,914 --> 03:41:36,383 THAT CHANGE GOALS, PRIORITIES, 5813 03:41:36,449 --> 03:41:38,051 SENSE OF SELF AND IDENTITY. 5814 03:41:38,118 --> 03:41:39,552 WE DON'T GIVE MORAL SIGNIFICANCE 5815 03:41:39,619 --> 03:41:41,221 OR WEIGHT TO THOSE THINGS SO WHY 5816 03:41:41,287 --> 03:41:44,257 DO WE CARE SO MUCH IN THIS 5817 03:41:44,324 --> 03:41:44,491 SPACE? 5818 03:41:44,557 --> 03:41:46,593 IF WE DO CARE WHAT IMPLICATIONS 5819 03:41:46,660 --> 03:41:48,328 DOES IT HAVE FROM HOW WE THINK 5820 03:41:48,395 --> 03:41:51,965 ABOUT THE ETHICS OF THESE 5821 03:41:52,032 --> 03:41:56,236 INTERVENTIONS. 5822 03:41:56,302 --> 03:42:00,173 >> I DON'T KNOW, JOE, IF YOU 5823 03:42:00,240 --> 03:42:00,974 HAVE A THOUGHT. 5824 03:42:01,041 --> 03:42:02,075 >> IT'S INTERESTING. 5825 03:42:02,142 --> 03:42:03,910 I WAS READING ABOUT THE HISTORY 5826 03:42:03,977 --> 03:42:07,614 OF SCIENCE, WHEN A PHYSICAL 5827 03:42:07,681 --> 03:42:08,815 CHEMIST AND PHYSICIST USING 5828 03:42:08,882 --> 03:42:10,917 DIFFERENT METHODS AGREED ON THE 5829 03:42:10,984 --> 03:42:13,253 WEIGHT OF ELECTRON, SCIENTIFIC 5830 03:42:13,319 --> 03:42:13,920 CONVERGESSENS. 5831 03:42:13,987 --> 03:42:16,289 WHAT YOU SAID ABOUT PSYCHEDELICS 5832 03:42:16,356 --> 03:42:18,525 AND DBS IS A CONVERGENCE OF 5833 03:42:18,591 --> 03:42:20,026 SIMILAR FINDINGS. 5834 03:42:20,093 --> 03:42:22,662 I THINK THE REASON WHY INJURY 5835 03:42:22,729 --> 03:42:24,964 AND ILLNESS IS SO TROUBLING TO 5836 03:42:25,031 --> 03:42:27,567 US, WE ALL CHANGE, YOU KNOW, 5837 03:42:27,634 --> 03:42:27,834 OVER TIME. 5838 03:42:27,901 --> 03:42:29,102 WE MATURE AND EVOLVE. 5839 03:42:29,169 --> 03:42:33,707 I THINK IT'S THE RANDOMNESS AND 5840 03:42:33,773 --> 03:42:34,441 DISRUPTION OF EXPECTED 5841 03:42:34,507 --> 03:42:36,443 TRAJECTORY, AND SO WE ARE NOT 5842 03:42:36,509 --> 03:42:37,877 ENHANCING, WE'RE NOT CHANGING. 5843 03:42:37,944 --> 03:42:38,945 WE'RE SORT OF RESTORING. 5844 03:42:39,012 --> 03:42:40,613 YOU'RE GETTING BACK ON THE SLOPE 5845 03:42:40,680 --> 03:42:43,883 OF THE OLD CURVE THAT WAS 5846 03:42:43,950 --> 03:42:44,417 RADICALLY CHANGED. 5847 03:42:44,484 --> 03:42:46,286 I THINK THIS GETS BACK TO WHAT 5848 03:42:46,352 --> 03:42:48,154 PEOPLE WANT TO BE BACK TO WHO 5849 03:42:48,221 --> 03:42:48,922 THEY WERE. 5850 03:42:48,988 --> 03:42:50,256 THEY WANT TO RESTORE 5851 03:42:50,323 --> 03:42:50,690 RELATIONSHIPS. 5852 03:42:50,757 --> 03:42:52,525 THEY WANT TO CONTINUE TO DO 5853 03:42:52,592 --> 03:42:54,260 THINGS THEY USED TO ENJOY. 5854 03:42:54,327 --> 03:42:57,263 I THINK IT'S KIND OF LIKE -- 5855 03:42:57,330 --> 03:43:00,533 IT'S A CONTINUITY ARGUMENT VERBS 5856 03:43:00,600 --> 03:43:01,835 US DISCONTINUITY OF THE ILLNESS 5857 03:43:01,901 --> 03:43:09,242 OR SEVERE INJURY. 5858 03:43:11,544 --> 03:43:12,445 >> JOHN, JUMP IN. 5859 03:43:12,512 --> 03:43:16,950 >> A QUESTION FOR THE GROUP, 5860 03:43:17,016 --> 03:43:17,951 PERSPECTIVES AND WISHES OF 5861 03:43:18,017 --> 03:43:20,153 FAMILY MEMBERS, SOME OF YOU 5862 03:43:20,220 --> 03:43:21,654 PROBABLY PUBLISHED ON, THEIR 5863 03:43:21,721 --> 03:43:25,825 VIEWS AND PATIENT VIEWS OFTEN DO 5864 03:43:25,892 --> 03:43:26,926 NOT ALIGN. 5865 03:43:26,993 --> 03:43:27,794 >> RIGHT. 5866 03:43:27,861 --> 03:43:29,329 THE SUBJECT, ONE OF THE SUBJECTS 5867 03:43:29,395 --> 03:43:32,632 IN OUR STUDY WITH THE BIGGEST 5868 03:43:32,699 --> 03:43:34,367 CHANGE IN TRAILS B FOR HIS OWN 5869 03:43:34,434 --> 03:43:35,902 REASONS THOUGHT HE WAS LESS HELP 5870 03:43:35,969 --> 03:43:37,771 THAN OTHER MEMBERS OF THE STUDY 5871 03:43:37,837 --> 03:43:40,406 BUT HIS FAMILY MEMBERS FROM THE 5872 03:43:40,473 --> 03:43:41,241 OUTSIDE AS OBSERVERS THOUGHT 5873 03:43:41,307 --> 03:43:41,441 THAT. 5874 03:43:41,508 --> 03:43:43,343 THAT POINTS TO THE IMPORTANCE OF 5875 03:43:43,409 --> 03:43:45,445 METHODOLOGY THAT IF YOU CAN 5876 03:43:45,512 --> 03:43:47,413 TRIANGULATE, YOU GET A BETTER 5877 03:43:47,480 --> 03:43:50,583 VIEW OF WHAT'S ACTUALLY 5878 03:43:50,650 --> 03:43:52,552 HAPPENING. 5879 03:43:52,619 --> 03:43:55,755 AND I THINK SOMETIMES YOU NEED 5880 03:43:55,822 --> 03:43:56,523 INSIGHT. 5881 03:43:56,589 --> 03:43:59,225 YOU TAUGHT A COURSE ON 5882 03:43:59,292 --> 03:44:01,628 SABBATICAL AT PRINCE TELL, 5883 03:44:01,694 --> 03:44:03,830 BIOETHICS, AND GALEN WROTE ABOUT 5884 03:44:03,897 --> 03:44:05,165 PEOPLE WHO WERE ILL, PEOPLE WHO 5885 03:44:05,231 --> 03:44:08,768 WERE MORE EXPERIENCED WITH THE 5886 03:44:08,835 --> 03:44:10,069 ILLNESS TO PROVIDE PERSPECTIVE 5887 03:44:10,136 --> 03:44:14,140 AS THEY GO THROUGH THE 5888 03:44:14,207 --> 03:44:16,209 EXPERIENCE, 4th CENTURY GRECO 5889 03:44:16,276 --> 03:44:17,310 ROMAN PHYSICIAN. 5890 03:44:17,377 --> 03:44:19,612 SOMETIMES WE NEED EXTERNAL 5891 03:44:19,679 --> 03:44:19,946 PERSPECTIVES. 5892 03:44:20,013 --> 03:44:21,481 HAVING SAID THAT THERE CAN BE 5893 03:44:21,548 --> 03:44:23,416 CONFLICTS OF INTEREST AND OTHER 5894 03:44:23,483 --> 03:44:24,150 MOTIVATIONS. 5895 03:44:24,217 --> 03:44:27,687 THEY WANT THEM TO GET WELL IN A 5896 03:44:27,754 --> 03:44:28,354 CERTAIN WAY. 5897 03:44:28,421 --> 03:44:30,690 WE HAVE TO BE CAUTIOUS WITH 5898 03:44:30,757 --> 03:44:30,890 THAT. 5899 03:44:30,957 --> 03:44:32,525 BUT I THINK THESE ARE THE PEOPLE 5900 03:44:32,592 --> 03:44:34,961 WHO KNOW THEM THE BEST, WITH 5901 03:44:35,028 --> 03:44:38,431 WHOM THEY HAVE INTIMATE 5902 03:44:38,498 --> 03:44:40,533 RELATIONSHIPS, AND RELATIONALITY 5903 03:44:40,600 --> 03:44:41,868 FROM FEMINIST BIOETHICS IS 5904 03:44:41,935 --> 03:44:42,368 IMPORTANT. 5905 03:44:42,435 --> 03:44:45,672 THERE ARE LOTS OF CONNECTIVITY 5906 03:44:45,738 --> 03:44:49,509 HERE AND WE'RE NOT ADAMISTIC. 5907 03:44:49,576 --> 03:44:49,909 WE ARE MOLECULAR. 5908 03:44:49,976 --> 03:44:51,611 WE LIVE IN RELATIONSHIPS. 5909 03:44:51,678 --> 03:44:53,012 THEY CAN PROVIDE INSIGHT WHO 5910 03:44:53,079 --> 03:44:56,516 WE'VE BEEN AND WHO WE CAN 5911 03:44:56,583 --> 03:44:56,850 BECOME. 5912 03:44:56,916 --> 03:44:58,151 >> CERTAINLY ISSUES OF 5913 03:44:58,218 --> 03:44:59,485 OBJECTIVITY AND SUBJECTIVITY AND 5914 03:44:59,552 --> 03:45:01,554 RELATIVENESS OF THAT IS SURELY 5915 03:45:01,621 --> 03:45:03,957 QUITE IMPORTANT BUT I'M ALSO 5916 03:45:04,023 --> 03:45:06,559 THINKING IN TERMS ABOUT AS YOU 5917 03:45:06,626 --> 03:45:09,863 ALLUDED TO, WHAT COULD BE 5918 03:45:09,929 --> 03:45:11,831 CONFLICTS OF INTEREST. 5919 03:45:11,898 --> 03:45:13,366 THE PATIENT REALLY WANTING THIS 5920 03:45:13,433 --> 03:45:15,001 BECAUSE THEY WANT A DIFFERENT 5921 03:45:15,068 --> 03:45:15,335 LIFE. 5922 03:45:15,401 --> 03:45:18,504 AND THE FAMILY LOOKING AT THE 5923 03:45:18,571 --> 03:45:22,675 RISK, RISK/BENEFIT, WITH A 5924 03:45:22,742 --> 03:45:23,443 DIFFERENT PERSPECTIVE AND 5925 03:45:23,509 --> 03:45:25,845 THEREFORE DIFFERENT CONCLUSION. 5926 03:45:25,912 --> 03:45:36,456 >> I COULD BRIEFLY INTERJECT, 5927 03:45:37,490 --> 03:45:38,892 PERSKI WROTE ABOUT PEOPLE WHO 5928 03:45:38,958 --> 03:45:41,961 ARE RETARD AND FAMILIES ALLOWING 5929 03:45:42,028 --> 03:45:45,465 THEM TO GO IN THE WORLD, THE 5930 03:45:45,531 --> 03:45:47,867 DIGNITY TO INTEGRATE, GET A JOB, 5931 03:45:47,934 --> 03:45:48,334 SHELTER, WHATEVER. 5932 03:45:48,401 --> 03:45:50,403 ONE OF THE THINGS WE OBSERVED IN 5933 03:45:50,470 --> 03:45:53,673 PART 1 OF OUR STUDY WAS THE 5934 03:45:53,740 --> 03:45:55,642 CHALLENGE THAT FAMILIES HAD IN 5935 03:45:55,708 --> 03:45:56,976 LETTING GO AND LETTING THEIR 5936 03:45:57,043 --> 03:45:58,711 LOVED ONES ASSUME THE RISK OF 5937 03:45:58,778 --> 03:46:03,283 BEING A SUBJECT IN THIS PHASE 1 5938 03:46:03,349 --> 03:46:03,950 TRIAL. 5939 03:46:04,017 --> 03:46:04,617 AND THE INDIVIDUALS, 5940 03:46:04,684 --> 03:46:06,853 PARTICIPANTS, WHO ALL HAD 5941 03:46:06,920 --> 03:46:07,587 DECISION-MAKING CAPACITY WANTED 5942 03:46:07,654 --> 03:46:09,756 TO TAKE THE RISK BECAUSE THEY 5943 03:46:09,822 --> 03:46:16,663 KNEW HOW MISERABLE THEY WERE, 5944 03:46:16,729 --> 03:46:19,832 LONGED FOR PRIOR SELF, PART OF 5945 03:46:19,899 --> 03:46:22,001 THE NEGOTIATION, JOHN, WAS THE 5946 03:46:22,068 --> 03:46:24,304 FAMILY MEMBERS ALLOWING THEIR 5947 03:46:24,370 --> 03:46:26,506 LOVED ONES TO BE AUTONOMOUS, AND 5948 03:46:26,572 --> 03:46:28,074 TO TAKE THAT ON FOR THEMSELVES 5949 03:46:28,141 --> 03:46:31,678 BECAUSE THEY WERE NOT LIVING THE 5950 03:46:31,744 --> 03:46:33,179 LIVES THAT THOSE WITH SEVERE 5951 03:46:33,246 --> 03:46:35,381 BRAIN INJURY HAD BEEN LIVING, 5952 03:46:35,448 --> 03:46:39,319 AND ACTUALLY THEY WERE MORE RISK 5953 03:46:39,385 --> 03:46:47,527 AVERSIVE THAN THE PARTICIPANTS 5954 03:46:47,593 --> 03:46:48,528 WERE. 5955 03:46:48,594 --> 03:46:48,795 >> JEN? 5956 03:46:48,861 --> 03:46:50,596 >> THANKS FOR THAT PERSPECTIVE. 5957 03:46:50,663 --> 03:46:53,866 I WANT TO SWITCH GEARS AND MY 5958 03:46:53,933 --> 03:46:56,502 FIRST QUESTION IS DIRECTED TO 5959 03:46:56,569 --> 03:46:56,736 TRISTAN. 5960 03:46:56,803 --> 03:46:58,371 IF IN YOUR RESEARCH UNDER AIM 1 5961 03:46:58,438 --> 03:47:01,007 YOU WERE LOOKING AT INTERVIEWING 5962 03:47:01,074 --> 03:47:04,177 BOTH PATIENTS AND RESEARCH 5963 03:47:04,243 --> 03:47:04,510 PARTICIPANTS. 5964 03:47:04,577 --> 03:47:08,247 SO MY QUESTION, I'D LIKE TO HEAR 5965 03:47:08,314 --> 03:47:12,018 FROM THE LARGER PANEL, A LOT OF 5966 03:47:12,085 --> 03:47:15,321 TIMES WE TEND TO RESEARCH, TALK 5967 03:47:15,388 --> 03:47:16,422 TO RESEARCH PARTICIPANTS, WHAT 5968 03:47:16,489 --> 03:47:20,493 HAPPENED TO BE THE MOST RISK 5969 03:47:20,560 --> 03:47:21,861 AVERSE, PUTTING THEMSELVES 5970 03:47:21,928 --> 03:47:23,229 FORWARD IN SCIENCE, WE 5971 03:47:23,296 --> 03:47:24,330 EXTRAPOLATE ACROSS THE 5972 03:47:24,397 --> 03:47:27,500 POPULATION SO I'M CURIOUS IN 5973 03:47:27,567 --> 03:47:29,268 YOUR COHORT ARE YOU INCLUDING 5974 03:47:29,335 --> 03:47:31,004 THOSE THAT ARE REPRESENTATIVES 5975 03:47:31,070 --> 03:47:34,273 OR MAYBE PATIENT ADVOCACY 5976 03:47:34,340 --> 03:47:35,074 ORGANIZATIONS WITH A BROADER 5977 03:47:35,141 --> 03:47:37,443 VIEW OF THE POPULATION BUT ALSO 5978 03:47:37,510 --> 03:47:39,645 HOW DOES THIS PLAY INTO THE 5979 03:47:39,712 --> 03:47:41,848 CLASSIC ADOPTION CURVE OF 5980 03:47:41,914 --> 03:47:43,383 INNOVATION, WE'RE FOCUSING ON 5981 03:47:43,449 --> 03:47:46,219 THOSE EARLY ADOPTERS AND MAYBE 5982 03:47:46,285 --> 03:47:48,287 NOT THE EARLY MAJORITY WHICH IS 5983 03:47:48,354 --> 03:47:50,790 WHERE WE NEED FURTHER CLINICAL 5984 03:47:50,857 --> 03:47:51,057 ADOPTION. 5985 03:47:51,124 --> 03:47:53,559 IF YOU COULD ADDRESS THAT AND 5986 03:47:53,626 --> 03:47:57,163 THEN PERSPECTIVE FROM THE PANEL. 5987 03:47:57,230 --> 03:47:58,164 >> VERY GOOD AND COMPLEX 5988 03:47:58,231 --> 03:48:00,900 QUESTIONS TO ANSWER. 5989 03:48:00,967 --> 03:48:04,270 WHEN WE RECRUITED FOR 5990 03:48:04,337 --> 03:48:05,805 PATIENT/RESEARCH PARTICIPANT 5991 03:48:05,872 --> 03:48:08,775 GROUP WE HAVE PARTNERED WITH 5992 03:48:08,841 --> 03:48:11,844 PATIENT ADVOCACY GROUPS, THERE'S 5993 03:48:11,911 --> 03:48:14,147 ALSO LARGE NATIONAL DATABASE, 5994 03:48:14,213 --> 03:48:16,015 THAT WE RECRUITED SIGNIFICANT 5995 03:48:16,082 --> 03:48:17,417 AMOUNT OF PARTICIPANT. 5996 03:48:17,483 --> 03:48:19,719 WE GOT A GOOD RANGE OF 5997 03:48:19,786 --> 03:48:20,920 RESPONSES, HAD PEOPLE WITH NOT 5998 03:48:20,987 --> 03:48:22,989 GOOD EXPERIENCES AND OTHER 5999 03:48:23,056 --> 03:48:26,492 PEOPLE WHO HAD AMAZING 6000 03:48:26,559 --> 03:48:27,326 EXPERIENCES, AND OUR 6001 03:48:27,393 --> 03:48:31,230 PRE-SCREENING WE WERE COGNIZANT 6002 03:48:31,297 --> 03:48:37,070 OF RANGE OF EXPERIENCES, TO MAKE 6003 03:48:37,136 --> 03:48:38,438 SURE THOSE WERE REFLECTED. 6004 03:48:38,504 --> 03:48:39,872 THE SECOND QUESTION I'M HAVING A 6005 03:48:39,939 --> 03:48:43,876 HARD TIME ANSWERING HOW DO WE -- 6006 03:48:43,943 --> 03:48:46,112 COULD YOU ASK AND TELL ME MORE 6007 03:48:46,179 --> 03:48:47,747 WHAT YOU'RE HOPING TO HEAR? 6008 03:48:47,814 --> 03:48:49,515 AND I'M HAPPY TO HAVE OTHER 6009 03:48:49,582 --> 03:48:50,183 CHIME IN. 6010 03:48:50,249 --> 03:48:51,818 >> YES, PLEASE CHIME IN. 6011 03:48:51,884 --> 03:48:57,490 THERE'S A CLASSIC CURVE OF 6012 03:48:57,557 --> 03:49:02,195 ADOPTION, EARLY ENTHUSIASTS ARE 6013 03:49:02,261 --> 03:49:02,962 OUTSIDE THE APPLE STORE, THEY 6014 03:49:03,029 --> 03:49:05,364 WANT TO BE THE FIRST TO HAVE IT. 6015 03:49:05,431 --> 03:49:07,767 THE EARLIER ADOPTERS TAKE A 6016 03:49:07,834 --> 03:49:08,768 LITTLE BIT LONGER AND THOSE ARE 6017 03:49:08,835 --> 03:49:11,704 THE PEOPLE THAT ARE SIGNING UP 6018 03:49:11,771 --> 03:49:13,339 FOR CLINICAL TRIALS. 6019 03:49:13,406 --> 03:49:15,741 WILLING TO PUT THEMSELVES 6020 03:49:15,808 --> 03:49:15,975 FORWARD. 6021 03:49:16,042 --> 03:49:17,844 THE QUESTION IS, WHERE CAN WE 6022 03:49:17,910 --> 03:49:21,347 START TO MOVE OUR FOCUS TOWARDS 6023 03:49:21,414 --> 03:49:22,782 THOSE EARLY MAJORITIES, THINK 6024 03:49:22,849 --> 03:49:24,517 THOSE ARE THE PEOPLE MORE 6025 03:49:24,584 --> 03:49:25,284 SKEPTICAL ON THE EARLY 6026 03:49:25,351 --> 03:49:27,787 TECHNOLOGY BUT WE HAVE TO REALLY 6027 03:49:27,854 --> 03:49:29,555 UNDERSTAND THEIR PERSPECTIVES 6028 03:49:29,622 --> 03:49:35,995 AND HESITANCY OF GOING FOREWARD, 6029 03:49:36,062 --> 03:49:43,202 IMPLANT, MINIMALLY INVASIVE OR 6030 03:49:43,269 --> 03:49:46,439 TECHNOLOGY DEVICE, WHAT'S BEEN 6031 03:49:46,506 --> 03:49:47,406 SAID ABOUT PARTICIPANT 6032 03:49:47,473 --> 03:49:48,508 ENGAGEMENT, NOT JUST AS DEVICE 6033 03:49:48,574 --> 03:49:50,910 IS BEING DEVELOPED BUT CHECKING 6034 03:49:50,977 --> 03:49:51,777 IN THROUGHOUT ESPECIALLY AS MORE 6035 03:49:51,844 --> 03:49:55,681 AND MORE PEOPLE ADOPT THESE NEW 6036 03:49:55,748 --> 03:49:57,016 TECHNOLOGIES, NOT ASSUMING WE 6037 03:49:57,083 --> 03:49:58,751 FOUND OUT EARLY STAGE IS WHAT'S 6038 03:49:58,818 --> 03:50:02,155 GOING TO HOLD OVER TIME, HAVING 6039 03:50:02,221 --> 03:50:03,256 THAT PERIODIC EXCHANGE OF 6040 03:50:03,322 --> 03:50:05,124 INFORMATION I THINK IS ONE WAY 6041 03:50:05,191 --> 03:50:06,325 TO DO THAT. 6042 03:50:06,392 --> 03:50:11,230 I'M CURIOUS TO HEAR WHAT OTHERS 6043 03:50:11,297 --> 03:50:11,664 THINK. 6044 03:50:11,731 --> 03:50:13,533 >> I JUST PUT IN THE CHAT 6045 03:50:13,599 --> 03:50:15,034 TALKING TO PEOPLE WHO DECLINE 6046 03:50:15,101 --> 03:50:17,003 PARTICIPATION IS A GOOD WAY TO 6047 03:50:17,069 --> 03:50:18,037 GET AT THAT. 6048 03:50:18,104 --> 03:50:20,439 IT'S A HARDER GROUP TO CAPTURE. 6049 03:50:20,506 --> 03:50:21,541 RECRUITMENT METHODS ARE NOT SO 6050 03:50:21,607 --> 03:50:23,509 CLEAR WHO IS DECLINING AND WHO 6051 03:50:23,576 --> 03:50:25,811 IS NOT GETTING OFFERED THINGS. 6052 03:50:25,878 --> 03:50:27,246 THAT CAN GIVE YOU AT LEAST THE 6053 03:50:27,313 --> 03:50:32,251 OTHER END OF THE SPECTRUM ON 6054 03:50:32,318 --> 03:50:34,220 TERMS OF PERSPECTIVE. 6055 03:50:34,287 --> 03:50:38,391 >> I THINK THAT'S REALLY 6056 03:50:38,457 --> 03:50:39,825 IMPORTANT, THERE'S DEFINITELY X 6057 03:50:39,892 --> 03:50:41,661 WORDS OR TWITTER WORDS, PEOPLE 6058 03:50:41,727 --> 03:50:42,995 IN THE DISABILITY RIGHTS 6059 03:50:43,062 --> 03:50:44,864 COMMUNITY THAT DON'T WANT TO 6060 03:50:44,931 --> 03:50:46,732 CHANGE THEIR IDENTITY SO I THINK 6061 03:50:46,799 --> 03:50:49,335 WE HAVE TO BE CONSCIOUS OF THAT. 6062 03:50:49,402 --> 03:50:55,808 THAT EXISTS WITHIN OUR SOCIETY. 6063 03:50:55,875 --> 03:50:56,175 >> ALL RIGHT. 6064 03:50:56,242 --> 03:50:59,712 OTHER THOUGHTS? 6065 03:50:59,779 --> 03:51:01,614 OTHER QUESTIONS? 6066 03:51:01,681 --> 03:51:05,985 >> I HAVE A QUESTION IF I MAY. 6067 03:51:06,052 --> 03:51:06,319 >> PLEASE. 6068 03:51:06,385 --> 03:51:09,922 >> SO, FOR THE TALK ABOUT 6069 03:51:09,989 --> 03:51:11,224 IDENTITY WITH NEUROSTIMULATION, 6070 03:51:11,290 --> 03:51:14,727 HOW DIFFERENT ARE THESE CONCERNS 6071 03:51:14,794 --> 03:51:15,962 THEN AROUND MEDICATION, LIKE 6072 03:51:16,028 --> 03:51:16,562 PSYCHIATRIC MEDICATION, DO WE 6073 03:51:16,629 --> 03:51:18,664 NOT HAVE MANY OF THE SAME 6074 03:51:18,731 --> 03:51:19,498 CONCERNS? 6075 03:51:19,565 --> 03:51:22,735 WHAT'S REALLY NEW AND DIFFERENT 6076 03:51:22,802 --> 03:51:23,736 ABOUT NEUROSTIMULATION EXCEPT 6077 03:51:23,803 --> 03:51:27,907 FOR THE FACT IT CAN BE TURNED 6078 03:51:27,974 --> 03:51:31,010 OFF, CAN YOU STOP TAKING 6079 03:51:31,077 --> 03:51:31,310 MEDICATION? 6080 03:51:31,377 --> 03:51:32,778 >> PERSONALLY I'VE SEEN SIMILAR 6081 03:51:32,845 --> 03:51:34,847 CONVERSATIONS TO AMY'S POINT. 6082 03:51:34,914 --> 03:51:36,616 AND OTHER LITERATURES ABOUT 6083 03:51:36,682 --> 03:51:39,018 CONTINUITY AND DISCONTINUITY 6084 03:51:39,085 --> 03:51:40,553 ITSELF AND IDENTITY. 6085 03:51:40,620 --> 03:51:42,521 I THINK INTERESTINGLY IN OTHER 6086 03:51:42,588 --> 03:51:43,856 AREAS OF TECHNOLOGY TOO THERE 6087 03:51:43,923 --> 03:51:51,597 HAVE BEEN THEORIES OF EXTENDED 6088 03:51:51,664 --> 03:51:53,566 PERSONALITY, SO COCHLEAR 6089 03:51:53,633 --> 03:51:56,302 IMPLANTS, HEARING AIDS, OR 6090 03:51:56,369 --> 03:52:00,673 PROSTHETIC DEVICES, EACH OF 6091 03:52:00,740 --> 03:52:02,675 THESE CREATING A DISRUPTION IN 6092 03:52:02,742 --> 03:52:03,876 TRAJECTORY AND EXPECTED 6093 03:52:03,943 --> 03:52:06,279 TRAJECTORY BUT THEN OVER TIME 6094 03:52:06,345 --> 03:52:13,753 INTEGRATION INTO CONCEPT OF 6095 03:52:13,819 --> 03:52:14,387 EXTENDED PERSONALITY AND SELF. 6096 03:52:14,453 --> 03:52:16,689 THERE IS A LOT TO DRAW FROM TO 6097 03:52:16,756 --> 03:52:19,125 SEE IF THERE'S ANYTHING 6098 03:52:19,191 --> 03:52:21,494 DIFFERENT IN DBS IN TERMS OF 6099 03:52:21,560 --> 03:52:23,896 INTEGRATION, IN THE WAY A PERSON 6100 03:52:23,963 --> 03:52:26,365 THINKS AND PROCESS INFORMATION, 6101 03:52:26,432 --> 03:52:27,967 IF THAT'S DIFFERENT. 6102 03:52:28,034 --> 03:52:29,835 OR THE SAME. 6103 03:52:29,902 --> 03:52:31,170 AND WITH PSYCHEDELICS THAT'S A 6104 03:52:31,237 --> 03:52:33,873 GOOD PLACE TO LOOK, WHICH IS 6105 03:52:33,939 --> 03:52:35,708 LOOKING AT EVEN ANTIDEPRESSANTS 6106 03:52:35,775 --> 03:52:37,276 AND OTHER MEDICATIONS, AS PEOPLE 6107 03:52:37,343 --> 03:52:41,447 INTEGRATE HOW IT CHANGES 6108 03:52:41,514 --> 03:52:42,315 PROCESSING COULD BE USEFUL. 6109 03:52:42,381 --> 03:52:43,983 TO ME THIS IS ONE OF THOSE AREAS 6110 03:52:44,050 --> 03:52:44,950 WHERE IT'S INTERESTING TO 6111 03:52:45,017 --> 03:52:47,153 EXPLORE AND SEE IF THERE'S 6112 03:52:47,219 --> 03:52:47,653 ANYTHING DIFFERENT. 6113 03:52:47,720 --> 03:52:49,989 A LOT OF TIMES IT'S ONE OF THE 6114 03:52:50,056 --> 03:52:53,926 LEADING QUESTIONS, IS THIS A NEW 6115 03:52:53,993 --> 03:52:54,593 PROBLEM OR DIFFERENT DIMENSION 6116 03:52:54,660 --> 03:52:57,096 OF THE SAME PROBLEM OR IS IT THE 6117 03:52:57,163 --> 03:52:58,064 SAME PROBLEM BUT SIMPLY 6118 03:52:58,130 --> 03:53:05,738 PRESENTED IN A NEW WAY OR NEW 6119 03:53:05,805 --> 03:53:07,173 LENS, CURIOUS WHAT OTHER THINK 6120 03:53:07,239 --> 03:53:08,574 IN THIS NEW LENS OR RESEARCH 6121 03:53:08,641 --> 03:53:12,745 AREA. 6122 03:53:12,812 --> 03:53:14,914 >> I WAS GOING TO ADD A 6123 03:53:14,980 --> 03:53:15,781 DIFFERENT EXAMPLE, WORKED WITH 6124 03:53:15,848 --> 03:53:18,184 PEOPLE WITH SICKLE CELL DISEASE 6125 03:53:18,250 --> 03:53:20,619 WHO HAD GENE THERAPY OR BONE 6126 03:53:20,686 --> 03:53:25,658 MARROW TRANSPLANTS, NO LONGER 6127 03:53:25,725 --> 03:53:27,059 ARE SICKLE CELL. 6128 03:53:27,126 --> 03:53:36,802 AN INTERESTING OUTCOME, I DON'T 6129 03:53:36,869 --> 03:53:41,941 KNOW WHO I AM, I'VE HAD SICKLE 6130 03:53:42,007 --> 03:53:44,677 SICKLE CELL MY WHOLE LIFE, NOW I 6131 03:53:44,744 --> 03:53:46,412 DON'T. 6132 03:53:46,479 --> 03:53:47,947 IT'S ANOTHER EXAMPLE HOW, YOU 6133 03:53:48,013 --> 03:53:49,281 KNOW, TREATMENT -- WELL, DISEASE 6134 03:53:49,348 --> 03:53:55,621 CAN AND ALSO TREATMENT CAN 6135 03:53:55,688 --> 03:53:56,489 CHANGE PEOPLE'S IDENTITY. 6136 03:53:56,555 --> 03:53:58,357 >> THERE'S ALSO A LOT IN THE 6137 03:53:58,424 --> 03:54:00,126 CANCER LITERATURE AS WELL. 6138 03:54:00,192 --> 03:54:02,762 PEOPLE WHO FEEL LIKE A CANCER 6139 03:54:02,828 --> 03:54:06,031 DIAGNOSIS CAN SUDDENLY CHANGE 6140 03:54:06,098 --> 03:54:06,799 THE EXPECTED TRAJECTORY, 6141 03:54:06,866 --> 03:54:08,100 INTEGRATED THAT INTO THEIR WORLD 6142 03:54:08,167 --> 03:54:10,836 VIEW AND UNDERSTANDING OF SELF, 6143 03:54:10,903 --> 03:54:12,371 CHANGES THINGS DRAMATICALLY. 6144 03:54:12,438 --> 03:54:14,039 IT'S BEEN WRITTEN ABOUT A GOOD 6145 03:54:14,106 --> 03:54:17,710 BIT IN BREAST CANCER LITERATURE 6146 03:54:17,777 --> 03:54:18,277 AS WELL. 6147 03:54:18,344 --> 03:54:19,378 >> FOR ME THE INTERESTING 6148 03:54:19,445 --> 03:54:20,913 QUESTION WHAT DO WE DO ABOUT IT. 6149 03:54:20,980 --> 03:54:25,918 I LIKED WHAT JOE WAS TALKING 6150 03:54:25,985 --> 03:54:28,587 ABOUT, OWING PEOPLE, I DON'T 6151 03:54:28,654 --> 03:54:30,756 KNOW, ABILITY, YOU KNOW, THINGS 6152 03:54:30,823 --> 03:54:34,994 TO PROMOTE THEIR ABILITY, BUT I 6153 03:54:35,060 --> 03:54:35,895 THINK WE OWE PEOPLE INFORMATION 6154 03:54:35,961 --> 03:54:37,329 WHEN THEY ARE JOINING A TRIAL 6155 03:54:37,396 --> 03:54:39,098 THIS COULD HAPPEN TO THEM SO WE 6156 03:54:39,165 --> 03:54:40,733 NEED TO KNOW A LITTLE BIT MORE 6157 03:54:40,800 --> 03:54:43,602 ABOUT WHAT COULD HAPPEN. 6158 03:54:43,669 --> 03:54:45,771 BUT I STILL FEEL UNSURE ABOUT 6159 03:54:45,838 --> 03:54:48,507 WHAT ELSE WE OWE THEM IN THAT'S 6160 03:54:48,574 --> 03:54:54,613 THE RIGHT WAY TO FRAME IT. 6161 03:54:54,680 --> 03:54:58,017 >> I HAD A CONVERSATION WITH 6162 03:54:58,083 --> 03:55:00,953 HELEN MAYBERG ABOUT THIS TOPIC 6163 03:55:01,020 --> 03:55:01,720 RECENTLY. 6164 03:55:01,787 --> 03:55:02,955 SHE WAS SAYING SIMILARLY, I'M 6165 03:55:03,022 --> 03:55:04,590 SORRY, JOHN, YOUR HAND IS UP. 6166 03:55:04,657 --> 03:55:10,262 I'LL COME TO YOU IN JUST A 6167 03:55:10,329 --> 03:55:10,663 SECOND. 6168 03:55:10,729 --> 03:55:14,533 JOE THOUGHT THERE MAY BE NEED 6169 03:55:14,600 --> 03:55:17,369 FOR POST-TRIAL OBLIGATIONS OR 6170 03:55:17,436 --> 03:55:19,538 RESOURCES. 6171 03:55:19,605 --> 03:55:23,309 THE PROCESS OF INTEGRATION OF 6172 03:55:23,375 --> 03:55:25,377 DBS OR TECHNOLOGIES INTO SELF 6173 03:55:25,444 --> 03:55:27,680 AND TRAJECTORY THAT PEOPLE GO 6174 03:55:27,746 --> 03:55:30,182 THROUGH OVER THE COURSE OF A 6175 03:55:30,249 --> 03:55:32,952 YEAR OR YEAR AND A HALF, 6176 03:55:33,018 --> 03:55:34,153 PRE-TRIAL TO POST TRIAL, 6177 03:55:34,220 --> 03:55:35,988 REQUIRES SUPPORT IN WAYS THAT 6178 03:55:36,055 --> 03:55:41,827 MAY NOT BE ADEQUATELY ADDRESSED 6179 03:55:41,894 --> 03:55:44,663 RIGHT NOW AND THERE MAY BE AREAS 6180 03:55:44,730 --> 03:55:46,065 BEYOND DBS THAT NEED THE SAME 6181 03:55:46,131 --> 03:55:46,298 SUPPORT. 6182 03:55:46,365 --> 03:55:48,601 THIS MAY BE A CASE STUDIES THAT 6183 03:55:48,667 --> 03:55:50,569 HELPS US BROADLY UNDERSTAND A 6184 03:55:50,636 --> 03:55:51,170 PROBLEM. 6185 03:55:51,237 --> 03:55:54,173 IT MAY AT THE VERY LEAST HELP US 6186 03:55:54,240 --> 03:55:55,741 UNDERSTAND A MISSING PIECE OF 6187 03:55:55,808 --> 03:55:59,345 MENTAL HEALTH RESOURCES AND 6188 03:55:59,411 --> 03:56:00,546 SUPPORT THAT OCCURS, SOMETHING 6189 03:56:00,613 --> 03:56:03,916 THAT WHEN SOMEBODY IS DEALING 6190 03:56:03,983 --> 03:56:05,451 WITH THIS DRAMATIC CHANGE IN 6191 03:56:05,518 --> 03:56:11,590 TRAJECTORY AND EXPECTED LIFE 6192 03:56:11,657 --> 03:56:11,924 OUTCOMES. 6193 03:56:11,991 --> 03:56:12,124 JOHN? 6194 03:56:12,191 --> 03:56:12,758 >> CHRISTINE, YOUR OBSERVATION 6195 03:56:12,825 --> 03:56:16,061 ABOUT THE SICKLE CELL PATIENT IS 6196 03:56:16,128 --> 03:56:16,362 INTERESTING. 6197 03:56:16,428 --> 03:56:19,798 MANY MOONS AGO, ON THE ADVISORY 6198 03:56:19,865 --> 03:56:22,368 COUNCIL FOR NIDCD, TO ME IT WAS 6199 03:56:22,434 --> 03:56:23,969 REVEALING THAT THERE WERE 6200 03:56:24,036 --> 03:56:27,106 MEMBERS OF THE DEAF COMMUNITY 6201 03:56:27,172 --> 03:56:29,742 WHO ACTUALLY REJECTED THE USE OF 6202 03:56:29,808 --> 03:56:31,911 COCHLEAR IMPLANTS THAT WOULD BE 6203 03:56:31,977 --> 03:56:34,647 LIFE CHANGING, AND BECAUSE AS 6204 03:56:34,713 --> 03:56:35,781 YOU MENTIONED THEIR CONDITION 6205 03:56:35,848 --> 03:56:38,284 WAS PART OF THE IDENTITY THEY 6206 03:56:38,350 --> 03:56:40,019 HAD GROWN UP WITH OR THEIR 6207 03:56:40,085 --> 03:56:41,253 FAMILIES HAD GROWN UP. 6208 03:56:41,320 --> 03:56:44,290 I GUESS MY QUESTION IS ARE WE 6209 03:56:44,356 --> 03:56:46,392 LOOKING AT POINTS ALONG THE 6210 03:56:46,458 --> 03:56:50,629 CONTINUUM OR AM I TRYING TO MAKE 6211 03:56:50,696 --> 03:56:52,498 A SEMANTIC DISTINCTION BETWEEN 6212 03:56:52,565 --> 03:56:54,567 THE IDENTITY ONE HAS BASED ON 6213 03:56:54,633 --> 03:56:56,669 ONE'S LIFE EXPERIENCE VERSUS, 6214 03:56:56,735 --> 03:56:59,171 SAY, TAKING A DRUG OR HAVING A 6215 03:56:59,238 --> 03:57:00,372 STIMULATION AND SPECIFIC CIRCUIT 6216 03:57:00,439 --> 03:57:04,209 IN YOUR BRAIN WHICH TRULY IS 6217 03:57:04,276 --> 03:57:12,885 ALTERING, COULD POTENTIALLY BE 6218 03:57:12,952 --> 03:57:13,319 ALTERS PERSONALITY. 6219 03:57:13,385 --> 03:57:14,053 IS BASED ON ONE'S LIVED 6220 03:57:14,119 --> 03:57:14,353 EXPERIENCE? 6221 03:57:14,420 --> 03:57:16,188 I DON'T KNOW IF THERE'S AN 6222 03:57:16,255 --> 03:57:16,422 ANSWER. 6223 03:57:16,488 --> 03:57:18,691 IS THERE A WAY TO PARSE THIS OUT 6224 03:57:18,757 --> 03:57:21,060 TO DEAL WITH OUR -- OUR ISSUE AT 6225 03:57:21,126 --> 03:57:23,729 HAND IS WHAT ARE WE DOING 6226 03:57:23,796 --> 03:57:24,597 PUTTING ELECTRICITY INTO 6227 03:57:24,663 --> 03:57:29,635 PEOPLE'S CIRCUITS IN THE BRAIN 6228 03:57:29,702 --> 03:57:31,403 TO HELP AND TREAT THEM. 6229 03:57:31,470 --> 03:57:32,938 >> THAT'S THE MILLION DOLLAR 6230 03:57:33,005 --> 03:57:34,139 QUESTION, JOHN, PUT ON THE 6231 03:57:34,206 --> 03:57:34,340 TABLE. 6232 03:57:34,406 --> 03:57:36,775 LET ME TAKE THE REMAINING TWO 6233 03:57:36,842 --> 03:57:40,012 COMMENTS, WE'RE RUNNING SHORT ON 6234 03:57:40,079 --> 03:57:43,649 TIME AND THEN TURN IT OVER TO 6235 03:57:43,716 --> 03:57:45,084 CHRISTINE FOR UPDATES FROM THE 6236 03:57:45,150 --> 03:57:49,021 REST OF THE GROUP. 6237 03:57:49,088 --> 03:57:49,688 SAMEER? 6238 03:57:49,755 --> 03:57:50,055 >> THANKS. 6239 03:57:50,122 --> 03:57:51,523 I'LL TRY ANSWER JOHN'S QUESTION 6240 03:57:51,590 --> 03:57:54,026 QUICKLY AND BRING UP A POINT 6241 03:57:54,093 --> 03:57:56,895 WHICH I THINK IT'S CONTINUING, 6242 03:57:56,962 --> 03:57:57,096 JOHN. 6243 03:57:57,162 --> 03:58:01,333 THERE'S SOME THINGS THAT ARE 6244 03:58:01,400 --> 03:58:05,270 VERY CLEARLY EMPIRICALLY ON THE 6245 03:58:05,337 --> 03:58:07,406 INTERVENTION SIDE BUT LET ME TIE 6246 03:58:07,473 --> 03:58:08,607 THIS INTO THE COMMENT. 6247 03:58:08,674 --> 03:58:11,410 WHAT YOU WERE SAYING WAS 6248 03:58:11,477 --> 03:58:12,111 POST-TRIAL RESPONSIBILITY, ET 6249 03:58:12,177 --> 03:58:14,847 CETERA, I'D SAY THIS NEEDS TO BE 6250 03:58:14,913 --> 03:58:17,149 DONE VERY MUCH WITHIN THE TRIAL, 6251 03:58:17,216 --> 03:58:19,785 SOMETHING YOU CAN BUDGET FOR BUT 6252 03:58:19,852 --> 03:58:21,420 REINTEGRATION INTO SOCIETY AND 6253 03:58:21,487 --> 03:58:23,489 LIFE IS OCCURRING DURING THE 6254 03:58:23,555 --> 03:58:25,457 TRIAL, DURING THE TWO AND THREE 6255 03:58:25,524 --> 03:58:29,294 YEARS THAT THE TRIAL IS GOING 6256 03:58:29,361 --> 03:58:30,496 ON. 6257 03:58:30,562 --> 03:58:32,898 AND IT'S NOT SOMETHING THAT'S -- 6258 03:58:32,965 --> 03:58:34,099 IT'S MORE NECESSARY DURING 6259 03:58:34,166 --> 03:58:36,502 BECAUSE THIS IS WHY WE START 6260 03:58:36,568 --> 03:58:40,472 PEELING THE ONION, SEEING WHAT'S 6261 03:58:40,539 --> 03:58:41,607 UNDERNEATH, WHATEVER THING 6262 03:58:41,674 --> 03:58:44,610 YOU'RE TREATING IN TERMS OF 6263 03:58:44,677 --> 03:58:45,277 DEVICE BASED STATE. 6264 03:58:45,344 --> 03:58:48,814 HOW TO DO THAT, I DON'T KNOW. 6265 03:58:48,881 --> 03:58:53,852 SOMETHING A SPECIFIC BUDGET FOR, 6266 03:58:53,919 --> 03:58:54,953 OH, ADD THERAPY TO DBS, THIS IS 6267 03:58:55,020 --> 03:58:57,990 FINE BUT THIS IS ISN'T THERAPY. 6268 03:58:58,057 --> 03:58:59,958 THIS IS SOCIAL SKILLS 6269 03:59:00,025 --> 03:59:01,193 REINTEGRATION, TO BE FUNCTIONAL 6270 03:59:01,260 --> 03:59:04,029 WHEN YOU WEREN'T BEFORE. 6271 03:59:04,096 --> 03:59:07,299 SO, YEAH, IT'S CONTINUING. 6272 03:59:07,366 --> 03:59:10,335 THIS IS THE FAR END. 6273 03:59:10,402 --> 03:59:14,640 IS THIS LIFE OR A TRIAL-ENDING 6274 03:59:14,707 --> 03:59:15,708 INTERVENTION? 6275 03:59:15,774 --> 03:59:16,608 >> GREAT. 6276 03:59:16,675 --> 03:59:20,446 THANK YOU. 6277 03:59:20,512 --> 03:59:20,713 CAROLINE? 6278 03:59:20,779 --> 03:59:22,748 >> YES, THANK YOU TO THE 6279 03:59:22,815 --> 03:59:25,684 SPEAKERS FOR THIS GREAT 6280 03:59:25,751 --> 03:59:25,984 DISCUSSION. 6281 03:59:26,051 --> 03:59:28,654 I HAVE A QUESTION FOR TRISTAN. 6282 03:59:28,721 --> 03:59:30,055 THANK YOU FOR YOUR PRESENTATION. 6283 03:59:30,122 --> 03:59:31,724 I THOUGHT IT WAS VERY 6284 03:59:31,790 --> 03:59:35,761 INTERESTING TO THINK ABOUT THE 6285 03:59:35,828 --> 03:59:37,930 DIFFERENT CONTRIBUTORS IN THE 6286 03:59:37,996 --> 03:59:40,566 SCIENTIFIC ENTERPRISE RESEARCH 6287 03:59:40,632 --> 03:59:42,101 AND COMMERCIALIZATION. 6288 03:59:42,167 --> 03:59:44,470 I WAS CURIOUS TO HEAR YOUR 6289 03:59:44,536 --> 03:59:45,471 THOUGHTS ON NEUROETHICS SCHOLARS 6290 03:59:45,537 --> 03:59:47,906 IN YOUR MODEL. 6291 03:59:47,973 --> 03:59:49,742 SO, HERE I WAS ESPECIALLY 6292 03:59:49,808 --> 03:59:52,010 INTERESTED IN HEARING YOUR 6293 03:59:52,077 --> 03:59:53,278 THOUGHTS ON HOW RECEPTIVE THESE 6294 03:59:53,345 --> 03:59:54,346 TWO GROUPS THAT YOU DESCRIBE 6295 03:59:54,413 --> 03:59:57,282 HERE IN THE ACADEMIC SECTOR, 6296 03:59:57,349 --> 03:59:59,284 COMMERCIAL SECTOR ARE TO 6297 03:59:59,351 --> 04:00:00,185 INCORPORATING NEUROETHICS 6298 04:00:00,252 --> 04:00:03,555 SCHOLARS AND BRINGING THEM INTO 6299 04:00:03,622 --> 04:00:05,758 THEIR RESEARCH TO CONSIDER 6300 04:00:05,824 --> 04:00:06,191 ETHICAL AND SOCIETAL 6301 04:00:06,258 --> 04:00:07,826 CONSIDERATIONS IN THE COURSE OF 6302 04:00:07,893 --> 04:00:10,362 THEIR WORK. 6303 04:00:10,429 --> 04:00:12,531 AND PERHAPS WHETHER THERE'S 6304 04:00:12,598 --> 04:00:13,065 DIFFERENTIAL RECEPTIVITY 6305 04:00:13,132 --> 04:00:17,569 DEPENDING ON EACH OF THOSE 6306 04:00:17,636 --> 04:00:17,803 GROUPS. 6307 04:00:17,870 --> 04:00:19,204 >> YEAH, MY SENSE IS THAT MAYBE 6308 04:00:19,271 --> 04:00:20,973 A LOT OF THE INSTITUTIONAL 6309 04:00:21,039 --> 04:00:30,015 OFFICIALS MIGHT NOT BE AWARE 6310 04:00:30,082 --> 04:00:30,682 LIKE NEUROETHICISTS LIAISONS 6311 04:00:30,749 --> 04:00:33,318 EXIST AND THE ROLE THEY PLAY, 6312 04:00:33,385 --> 04:00:34,520 NEUROETHICISTS WE COULD DO A 6313 04:00:34,586 --> 04:00:37,055 BETTER JOB OF CHAMPIONING WHAT 6314 04:00:37,122 --> 04:00:42,294 WE DO IN ADVERTISING HOW WE CAN 6315 04:00:42,361 --> 04:00:44,496 HELP OFFICIALS AND RESEARCHERS 6316 04:00:44,563 --> 04:00:45,664 AND PHYSICIANS THINK 6317 04:00:45,731 --> 04:00:46,932 PROACTIVELY. 6318 04:00:46,999 --> 04:00:48,834 YEAH, IT'S THERE BUT NOT TO THE 6319 04:00:48,901 --> 04:00:50,602 EXTENT THEY ARE AWARE THOSE ARE 6320 04:00:50,669 --> 04:00:52,805 RESOURCES THAT ARE AVAILABLE TO 6321 04:00:52,871 --> 04:00:53,071 THEM. 6322 04:00:53,138 --> 04:00:54,907 THAT'S SOMETHING I'VE PICKED UP 6323 04:00:54,973 --> 04:00:55,307 ON WITH THIS. 6324 04:00:55,374 --> 04:01:02,247 I DON'T KNOW IF THAT ANSWERS 6325 04:01:02,314 --> 04:01:03,015 YOUR QUESTION. 6326 04:01:03,081 --> 04:01:03,782 >> THANK YOU. 6327 04:01:03,849 --> 04:01:05,617 WE COULD CONTINUE THIS 6328 04:01:05,684 --> 04:01:09,655 CONVERSATION FOR QUITE A WHILE. 6329 04:01:09,721 --> 04:01:10,222 THREE HELPFUL PRESENTATIONS, 6330 04:01:10,289 --> 04:01:12,191 RAISING A LOT OF FOOD FOR 6331 04:01:12,257 --> 04:01:12,658 THOUGHT. 6332 04:01:12,724 --> 04:01:13,859 CERTAINLY THINGS ARE HAPPENING 6333 04:01:13,926 --> 04:01:15,260 MORE RAPIDLY THAN I THINK ANY OF 6334 04:01:15,327 --> 04:01:17,429 US IMAGINED BUT IT'S GREAT TO 6335 04:01:17,496 --> 04:01:19,932 KNOW THAT WORK LIKE TRISTAN'S IS 6336 04:01:19,998 --> 04:01:22,034 HAPPENING TO HELP CONVERGE THE 6337 04:01:22,100 --> 04:01:23,035 CONVERSATIONS AND BRING THE 6338 04:01:23,101 --> 04:01:25,771 DIFFERENT VOICES TO THE TABLE 6339 04:01:25,838 --> 04:01:28,307 AND THAT ISSUES THAT JOE RAISES 6340 04:01:28,373 --> 04:01:31,343 ARE IMPORTANT ONES TO TAKE ON, 6341 04:01:31,410 --> 04:01:33,078 POTENTIALLY SERVING AS USEFUL 6342 04:01:33,145 --> 04:01:35,948 USE CASE TO THINK BROADLY THAT 6343 04:01:36,014 --> 04:01:37,683 AN ISSUE THAT AFFECTS TRIALS 6344 04:01:37,749 --> 04:01:40,752 MORE GENERALLY BUT PERHAPS MORE 6345 04:01:40,819 --> 04:01:41,553 PROFOUNDLY TO JOHN'S QUESTION 6346 04:01:41,620 --> 04:01:42,921 AND POINT, OR NOT. 6347 04:01:42,988 --> 04:01:44,923 IT'S A QUESTION TO EXPLORE AND 6348 04:01:44,990 --> 04:01:47,092 ONE THAT WOULD BE REALLY USEFUL 6349 04:01:47,159 --> 04:01:48,427 TO CONSIDER FOR THE NEWG AGENDA. 6350 04:01:48,493 --> 04:01:52,798 LET ME HAND OVER TO CHRISTINE TO 6351 04:01:52,865 --> 04:01:53,999 MODERATE THE FINAL ROUNDTABLE 6352 04:01:54,066 --> 04:01:55,968 SET OF UPDATES. 6353 04:01:56,034 --> 04:01:58,937 THANKS, ALL. 6354 04:01:59,004 --> 04:01:59,905 THANKS FOR TERRIFIC 6355 04:01:59,972 --> 04:02:00,305 PRESENTATIONS. 6356 04:02:00,372 --> 04:02:01,740 >> THANK YOU. 6357 04:02:01,807 --> 04:02:03,075 THANK YOU, NITA. 6358 04:02:03,141 --> 04:02:07,679 FOR THOSE WHO ARE NEW TO US, 6359 04:02:07,746 --> 04:02:12,384 WHAT WE TEND TO DO THEY END IS 6360 04:02:12,451 --> 04:02:13,785 HAVE A ROUNDTABLE ASKING EACH 6361 04:02:13,852 --> 04:02:15,220 MEMBER FOR UPDATES TO SHARE WITH 6362 04:02:15,287 --> 04:02:15,888 THE GROUP. 6363 04:02:15,954 --> 04:02:18,490 I'M GOING TO DO THAT BY LOOKING 6364 04:02:18,557 --> 04:02:22,094 ACROSS MY SCREEN AND CALLING ON 6365 04:02:22,160 --> 04:02:22,761 PEOPLE. 6366 04:02:22,828 --> 04:02:29,768 CAROLINE, YOU'RE FIRST. 6367 04:02:29,835 --> 04:02:33,038 >> HAPPY TO SHARE, FOR THOSE I 6368 04:02:33,105 --> 04:02:37,109 HAVEN'T MET, I'M CAROLINE, 6369 04:02:37,175 --> 04:02:39,177 PRESIDENT AND CEO OF DANA 6370 04:02:39,244 --> 04:02:39,745 FOUNDATION, SHARING UPDATES 6371 04:02:39,811 --> 04:02:42,414 AROUND A PROGRAM WHICH COULD BE 6372 04:02:42,481 --> 04:02:44,716 INTERESTING TO MANY PEOPLE ON 6373 04:02:44,783 --> 04:02:47,786 THIS CALL GIVEN THE TOPICAL 6374 04:02:47,853 --> 04:02:49,087 FOCUS OF THE GROUP, ONE UPDATE 6375 04:02:49,154 --> 04:02:51,056 FROM THE FOUNDATION IS THAT WE 6376 04:02:51,123 --> 04:02:54,793 HAVE AN OPEN CALL FOR LETTERS OF 6377 04:02:54,860 --> 04:02:56,561 INTEREST FOR PILOT PROJECTS IN 6378 04:02:56,628 --> 04:02:57,429 THE INTERSECTION OF NEUROSCIENCE 6379 04:02:57,496 --> 04:02:59,197 AND SOCIETY. 6380 04:02:59,264 --> 04:03:00,933 THESE LETTERS OF INTEREST ARE 6381 04:03:00,999 --> 04:03:04,036 SHORT, THREE PAGES IN LENGTH, 6382 04:03:04,102 --> 04:03:06,204 AND APPLICANTS CAN REQUEST UP TO 6383 04:03:06,271 --> 04:03:09,708 $150,000 IN FUNDING FOR PROJECTS 6384 04:03:09,775 --> 04:03:10,776 OVER 18-MONTH PERIOD. 6385 04:03:10,842 --> 04:03:15,314 I CAN DROP A LINK INTO THE CHAT 6386 04:03:15,380 --> 04:03:16,081 AS WELL. 6387 04:03:16,148 --> 04:03:18,216 HERE. 6388 04:03:28,060 --> 04:03:29,194 THERE IT GOES. 6389 04:03:29,261 --> 04:03:33,031 IT TAKES A MOMENT TO POST. 6390 04:03:33,098 --> 04:03:38,103 THE SECOND UPDATE IS THAT THE 6391 04:03:38,170 --> 04:03:40,072 2024-2025 CIVIC SCIENCE FELLOW 6392 04:03:40,138 --> 04:03:41,606 POSITIONS ARE OUT FOR OPEN CALL 6393 04:03:41,673 --> 04:03:43,575 RIGHT NOW SO IF THERE ARE ANY 6394 04:03:43,642 --> 04:03:45,844 TRAINEES THAT ARE INTERESTED IN 6395 04:03:45,911 --> 04:03:48,513 CIVIC SCIENCE WORK, WORK THAT 6396 04:03:48,580 --> 04:03:50,415 HELPS BRIDGE NEUROSCIENCE AND 6397 04:03:50,482 --> 04:03:51,116 SOCIETY, PUBLIC ENGAGEMENT, 6398 04:03:51,183 --> 04:03:53,986 THERE ARE SEVERAL CALLS FOR 6399 04:03:54,052 --> 04:03:55,153 THOSE POSITIONS. 6400 04:03:55,220 --> 04:03:57,255 THE DANA FOUNDATION IS 6401 04:03:57,322 --> 04:03:58,790 SPONSORING THREE FELLOW 6402 04:03:58,857 --> 04:04:01,860 POSITIONS, ONE ON PSYCHEDELICS 6403 04:04:01,927 --> 04:04:05,564 ACTUALLY, PUBLIC ENGAGEMENT, AND 6404 04:04:05,630 --> 04:04:06,999 STAKEHOLDER ENGAGEMENT AROUND 6405 04:04:07,065 --> 04:04:08,200 PSYCHEDELICS, WITH BERKELEY 6406 04:04:08,266 --> 04:04:10,068 CENTER FOR SCIENCE OF 6407 04:04:10,135 --> 04:04:10,402 PSYCHEDELICS. 6408 04:04:10,469 --> 04:04:12,804 ANOTHER ONE AT U.C. IRVINE 6409 04:04:12,871 --> 04:04:15,440 THAT'S OPEN AS WELL, EXPLORING 6410 04:04:15,507 --> 04:04:18,276 ETHICAL AND SOCIETAL 6411 04:04:18,343 --> 04:04:19,144 IMPLICATIONS OF SLEEP 6412 04:04:19,211 --> 04:04:21,346 NEUROSCIENCE WITH THE SANTA ANA 6413 04:04:21,413 --> 04:04:21,747 COMMUNITY. 6414 04:04:21,813 --> 04:04:22,814 A THIRD ONE WITH NEURAL MATCH, 6415 04:04:22,881 --> 04:04:26,451 THIS IS GOING TO BE FOCUSED ON 6416 04:04:26,518 --> 04:04:28,020 INTERSECTION OF A.I. AND I 6417 04:04:28,086 --> 04:04:30,455 ENCOURAGE YOU TO SHARE WITH 6418 04:04:30,522 --> 04:04:35,260 STUDENTS AND TRAINEES ABOUT 6419 04:04:35,327 --> 04:04:35,694 THESE OPPORTUNITIES. 6420 04:04:35,761 --> 04:04:38,096 THEY ARE LOOKING FOR GREAT 6421 04:04:38,163 --> 04:04:39,398 APPLICANTS. 6422 04:04:39,464 --> 04:04:40,832 AND BRAIN AWARENESS WEEK, DANA 6423 04:04:40,899 --> 04:04:44,002 FOUNDATION HAS SPONSORED BRAIN 6424 04:04:44,069 --> 04:04:46,638 AWARENESS WEEK SINCE THE EARLY 6425 04:04:46,705 --> 04:04:49,041 1990s, AND WE'RE PARTNERING 6426 04:04:49,107 --> 04:04:51,009 WITH INTERNATIONAL BRAIN 6427 04:04:51,076 --> 04:04:53,745 RESEARCH ORGANIZATION, AND THE 6428 04:04:53,812 --> 04:04:54,880 FEDERATION OF EUROPEAN 6429 04:04:54,946 --> 04:04:56,381 NEUROSCIENCE SOCIETIES TO HELP 6430 04:04:56,448 --> 04:04:58,316 INCREASE EDUCATION AND OUTREACH 6431 04:04:58,383 --> 04:04:59,785 IN NEUROSCIENCE, A FEW THINGS 6432 04:04:59,851 --> 04:05:02,721 THAT MIGHT BE OF INTEREST TO 6433 04:05:02,788 --> 04:05:03,355 THIS GROUP. 6434 04:05:03,422 --> 04:05:07,559 >> WONDERFUL, THANK YOU VERY 6435 04:05:07,626 --> 04:05:08,093 MUCH. 6436 04:05:08,160 --> 04:05:09,561 SAMEER, ANYTHING? 6437 04:05:09,628 --> 04:05:14,666 >> YEAH, TWO QUICK THINGS. 6438 04:05:14,733 --> 04:05:24,443 THE FIRST BIT ABOUT VARIOUS 6439 04:05:24,509 --> 04:05:27,612 REGULATORY ISSUES, AND I'VE BEEN 6440 04:05:27,679 --> 04:05:32,317 VERY HAPPY TO EXPERIENCE IN THE 6441 04:05:32,384 --> 04:05:37,255 LAST SEVERAL MONTHS INCREASED 6442 04:05:37,322 --> 04:05:38,590 INTEREST FROM THE GROWING 6443 04:05:38,657 --> 04:05:40,058 DEVICE-RELATED STAFF AT FDA, AN 6444 04:05:40,125 --> 04:05:41,693 INTEREST IN ENGAGING IN TERMS OF 6445 04:05:41,760 --> 04:05:46,798 DEALING WITH A LOT OF ISSUES 6446 04:05:46,865 --> 04:05:51,269 REGARDING HOW TO REGULATE 6447 04:05:51,336 --> 04:05:56,208 PRODUCTS IMPLANTS AS WELL AS 6448 04:05:56,274 --> 04:05:57,209 DEVICES INTRAOPERATIVELY, TWO 6449 04:05:57,275 --> 04:05:59,177 WORKSHOPS, THERE'S NO WEB 6450 04:05:59,244 --> 04:06:00,378 PRESENCE YET, SO IF YOU ARE 6451 04:06:00,445 --> 04:06:01,346 INTERESTED LET ME KNOW. 6452 04:06:01,413 --> 04:06:03,148 SOME OF YOU ARE ALREADY SPEAKING 6453 04:06:03,215 --> 04:06:04,116 AT THEM. 6454 04:06:04,182 --> 04:06:04,950 THANK YOU. 6455 04:06:05,016 --> 04:06:07,686 AND ANYONE WHO WANTS TO ATTEND 6456 04:06:07,752 --> 04:06:10,655 IN PERSON OR REMOTELY, ATTACHED 6457 04:06:10,722 --> 04:06:12,290 TO THE ASSM MEETING. 6458 04:06:12,357 --> 04:06:15,894 JUST SAY THE LETTERS, DON'T 6459 04:06:15,961 --> 04:06:17,963 PRONOUNCE THAT. 6460 04:06:18,029 --> 04:06:20,065 EVERY-OTHER-YEAR MEETING, 6461 04:06:20,132 --> 04:06:22,667 BEGINNING OF JUNE, 1-4 IN 6462 04:06:22,734 --> 04:06:23,568 NASHVILLE. 6463 04:06:23,635 --> 04:06:25,203 AND THERE'S A PRE-MEETING THE 6464 04:06:25,270 --> 04:06:30,041 DAY BEFORE ON MAY 31, FULL DAY 6465 04:06:30,108 --> 04:06:31,877 MEETING ON PSYCHIATRIC 6466 04:06:31,943 --> 04:06:33,745 NEUROSURGERY, A SESSION ON 6467 04:06:33,812 --> 04:06:35,680 NEUROETHICS, AND FIRST DAY OF 6468 04:06:35,747 --> 04:06:37,449 THE MEETING, SATURDAY JUNE 1, IN 6469 04:06:37,516 --> 04:06:42,687 THE MORNING, HALF DAY WORKSHOP, 6470 04:06:42,754 --> 04:06:46,291 WITH FDA AND OTHER PEOPLE AS 6471 04:06:46,358 --> 04:06:49,127 WELL AS PEOPLE FROM NIH TO NIMH 6472 04:06:49,194 --> 04:06:53,198 AND NINDS, AND OF COURSE 6473 04:06:53,265 --> 04:07:01,840 CLINICIANS AND SCIENTISTS, ABOUT 6474 04:07:01,907 --> 04:07:02,807 NOVEL ELECTRODES USED 6475 04:07:02,874 --> 04:07:05,577 INTRAOPERATIVELY, HOW DO WE DEAL 6476 04:07:05,644 --> 04:07:06,645 WITH REGULATORY QUESTIONS. 6477 04:07:06,711 --> 04:07:17,255 IF YOU'RE INTERESTED IN EITHER, 6478 04:07:17,722 --> 04:07:18,557 WE'RE FINALIZING. 6479 04:07:18,623 --> 04:07:20,625 WE'RE MEETING IN THE HOTEL 6480 04:07:20,692 --> 04:07:21,826 ITSELF WITH ZOOM OPTIONS FOR 6481 04:07:21,893 --> 04:07:22,727 PEOPLE THAT DON'T WANT TO 6482 04:07:22,794 --> 04:07:23,295 TRAVEL. 6483 04:07:23,361 --> 04:07:30,602 >> THANK YOU VERY MUCH. 6484 04:07:30,669 --> 04:07:31,803 WINSTON? 6485 04:07:31,870 --> 04:07:32,704 >> NOT QUITE READY. 6486 04:07:32,771 --> 04:07:36,308 I GUESS ONE KEY ONE IS JUST SOME 6487 04:07:36,374 --> 04:07:38,176 CONVERSATIONS WITH JOE AND OTHER 6488 04:07:38,243 --> 04:07:40,345 PEOPLE ABOUT TRYING TO BRIDGE 6489 04:07:40,412 --> 04:07:43,949 SOME GAPS BETWEEN THE CLINICAL 6490 04:07:44,015 --> 04:07:49,221 PRACTICE AND THE BRAIN-BASED 6491 04:07:49,287 --> 04:07:50,422 SPECIALTIES, NEUROLOGY, 6492 04:07:50,488 --> 04:07:52,490 PSYCHIATRY, NEUROSURGERY, 6493 04:07:52,557 --> 04:07:54,893 CLINICAL PSYCHOLOGY, SIMILAR 6494 04:07:54,960 --> 04:07:56,428 CONVERSATIONS IN THE TRADITIONAL 6495 04:07:56,494 --> 04:07:57,262 NEUROETHICS, NEUROTECHNOLOGY 6496 04:07:57,329 --> 04:07:58,630 SPACE, AN AREA WHERE THERE'S A 6497 04:07:58,697 --> 04:08:02,467 LOT OF INTEREST IN TRYING TO 6498 04:08:02,534 --> 04:08:04,970 THINK ABOUT COMMON ISSUES, 6499 04:08:05,036 --> 04:08:05,537 DISCUSSIONS INCLUDING TODAY 6500 04:08:05,604 --> 04:08:09,241 ABOUT SOME THEMES POP UP IN 6501 04:08:09,307 --> 04:08:12,510 SIMILAR PLACES, WHETHER 6502 04:08:12,577 --> 04:08:13,111 NEUROMODULATION, PSYCHEDELICS, 6503 04:08:13,178 --> 04:08:14,613 PSYCHIATRIC ILLNESS, AND SO 6504 04:08:14,679 --> 04:08:14,980 FORTH. 6505 04:08:15,046 --> 04:08:16,248 THAT'S AN AREA THAT WE'RE 6506 04:08:16,314 --> 04:08:19,985 INTERESTED TO EXPLORE AND WE'LL 6507 04:08:20,051 --> 04:08:22,053 BE DISCUSSING IN OUR ETHICS LAW 6508 04:08:22,120 --> 04:08:25,991 AND HUMANITIES COMMITTEE. 6509 04:08:26,057 --> 04:08:26,324 >> GREAT. 6510 04:08:26,391 --> 04:08:27,292 THANK YOU. 6511 04:08:27,359 --> 04:08:27,592 JIM? 6512 04:08:27,659 --> 04:08:29,728 >> I WANT TO THANK THE SPEAKERS 6513 04:08:29,794 --> 04:08:32,697 FOR ALL THEIR INTERESTING 6514 04:08:32,764 --> 04:08:34,532 THOUGHT-PROVOKES TALKS TODAY. 6515 04:08:34,599 --> 04:08:39,237 FOOD FOR THOUGHT FOR SEVERAL 6516 04:08:39,304 --> 04:08:40,338 NEW MEETINGS. 6517 04:08:40,405 --> 04:08:41,973 VARIOUS THINGS ONGOING, KAREN 6518 04:08:42,040 --> 04:08:44,042 AND I ARE MEMBERS OF A NATIONAL 6519 04:08:44,109 --> 04:08:49,848 ACADEMY WORKING GROUP ON 6520 04:08:49,914 --> 04:08:56,655 ENGAGING SCIENTIST IN SOUTHEAST 6521 04:08:56,721 --> 04:08:57,522 ASIA. 6522 04:08:57,589 --> 04:09:03,528 IT WILL BE DONE RELATIVELY SOON 6523 04:09:03,595 --> 04:09:04,262 TALKING ABOUT INNOVATION, 6524 04:09:04,329 --> 04:09:09,367 DIFFERENT COUNTRIES AND I'LL 6525 04:09:09,434 --> 04:09:13,938 MAKE SURE IT'S SHARED. 6526 04:09:14,005 --> 04:09:15,140 THANK YOU. 6527 04:09:15,206 --> 04:09:16,775 >> THANKS, JIM. 6528 04:09:16,841 --> 04:09:18,410 SYD? 6529 04:09:18,476 --> 04:09:18,777 >> THANKS. 6530 04:09:18,843 --> 04:09:19,811 LET'S SEE. 6531 04:09:19,878 --> 04:09:22,714 I'VE BEEN DOING A LOT OF 6532 04:09:22,781 --> 04:09:24,149 INTERVIEWS WILL NEUROLINK, 6533 04:09:24,215 --> 04:09:25,784 PEOPLE KEEP CALLING TO ASK WHAT 6534 04:09:25,850 --> 04:09:29,487 I THINK, WHICH ISN'T MUCH. 6535 04:09:29,554 --> 04:09:32,223 AND I HAVE A SMALL BOOK COMING 6536 04:09:32,290 --> 04:09:34,326 OUT WITH CAMBRIDGE, LATER THIS 6537 04:09:34,392 --> 04:09:36,294 MONTH, ON BRAIN DEATH, AND THEN 6538 04:09:36,361 --> 04:09:39,564 ANOTHER LITTLE BOOK ON RESEARCH 6539 04:09:39,631 --> 04:09:40,432 WITH NON-HUMAN PRIMATES IN 6540 04:09:40,498 --> 04:09:45,036 ANOTHER MONTH OR TWO. 6541 04:09:45,103 --> 04:09:45,770 >> GOOD FOR YOU. 6542 04:09:45,837 --> 04:09:48,306 AMY, DO YOU HAVE ANYTHING TO ADD 6543 04:09:48,373 --> 04:09:49,841 FOR THE GROUP? 6544 04:09:49,908 --> 04:09:52,377 >> NO, I WANT TO THANK YOU FOR 6545 04:09:52,444 --> 04:09:53,478 INVITING ME TO JOIN, I'M EXCITED 6546 04:09:53,545 --> 04:09:54,879 TO BE PART OF IT. 6547 04:09:54,946 --> 04:09:56,781 IT WAS A GREAT MEETING. 6548 04:09:56,848 --> 04:10:03,288 I LOOK FORWARD TO CONTINUING 6549 04:10:03,355 --> 04:10:03,521 ENGAGE. 6550 04:10:03,588 --> 04:10:06,257 WE'RE ADVERTISINGS FOR A POSTDOC 6551 04:10:06,324 --> 04:10:07,826 POSITION IF YOU KNOW ANYONE WHO 6552 04:10:07,892 --> 04:10:09,327 IS INTERESTED SEND THEM OUR WAY. 6553 04:10:09,394 --> 04:10:13,832 >> GREAT TO HAVE YOU TOO. 6554 04:10:13,898 --> 04:10:13,998 JEN? 6555 04:10:14,065 --> 04:10:15,433 >> YEAH, A BIT OF A SURPRISE, 6556 04:10:15,500 --> 04:10:17,335 THANK YOU FOR TAKING ME LAST, 6557 04:10:17,402 --> 04:10:19,938 GIVING ME TIME TO THINK ABOUT 6558 04:10:20,004 --> 04:10:20,105 IT. 6559 04:10:20,171 --> 04:10:21,039 THANK YOU ALL. 6560 04:10:21,106 --> 04:10:24,843 THIS IS MY FIRST OFFICIAL NEWG 6561 04:10:24,909 --> 04:10:26,177 MEETING, APPRECIATED THE 6562 04:10:26,244 --> 04:10:28,012 PRESENTATIONS AND CONVERSATIONS 6563 04:10:28,079 --> 04:10:28,580 AROUND THAT. 6564 04:10:28,646 --> 04:10:32,083 I WEAR A COUPLE HATS. 6565 04:10:32,150 --> 04:10:33,952 I'M WITH THE NEUROTECH NETWORK, 6566 04:10:34,018 --> 04:10:36,688 BUT YOU MAY KNOW ME, LIVE WITH A 6567 04:10:36,755 --> 04:10:38,089 SPINAL CORD INJURY, AND THE 6568 04:10:38,156 --> 04:10:40,492 NORTH AMERICAN SPINAL CORD 6569 04:10:40,558 --> 04:10:42,761 INJURY CONSORTIUM IN PARTNERSHIP 6570 04:10:42,827 --> 04:10:44,863 WITH THE UNIVERSITY OF BRITISH 6571 04:10:44,929 --> 04:10:46,064 COLUMBIA PUBLISHED A PAPER THIS 6572 04:10:46,131 --> 04:10:48,266 YEAR ABOUT DATA SHARING AND 6573 04:10:48,333 --> 04:10:50,435 PEOPLE'S PERSPECTIVES ON DATA 6574 04:10:50,502 --> 04:10:50,668 SHARING. 6575 04:10:50,735 --> 04:10:52,771 THAT MIGHT BE SOMETHING OF 6576 04:10:52,837 --> 04:10:54,839 INTEREST TO THIS GROUP. 6577 04:10:54,906 --> 04:10:57,776 JUST TO SEE ANOTHER PERSPECTIVE 6578 04:10:57,842 --> 04:11:00,078 FROM A DIFFERENT POPULATION. 6579 04:11:00,145 --> 04:11:08,386 ALSO, NEXT MONTH IN PARTNERSHIP 6580 04:11:08,453 --> 04:11:09,821 WITH NEUROMOTORRIC, WE'RE 6581 04:11:09,888 --> 04:11:13,024 HOSTING A FREE WEBINAR ON 6582 04:11:13,091 --> 04:11:13,858 ADVOCACY AND NEUROMODULATION, I 6583 04:11:13,925 --> 04:11:15,193 PUT THE LINK IN THE CHAT. 6584 04:11:15,260 --> 04:11:17,495 THAT MIGHT BE OF INTEREST TO 6585 04:11:17,562 --> 04:11:18,363 THIS GROUP. 6586 04:11:18,430 --> 04:11:19,063 THANKS. 6587 04:11:19,130 --> 04:11:19,364 >> GREAT. 6588 04:11:19,431 --> 04:11:19,664 THANK YOU. 6589 04:11:19,731 --> 04:11:24,602 GREAT TO HAVE YOU ON BOARD. 6590 04:11:24,669 --> 04:11:24,803 NITA? 6591 04:11:24,869 --> 04:11:26,471 ANY UPDATES. 6592 04:11:26,538 --> 04:11:27,272 >> NOTHING MAJOR TO REPORT OTHER 6593 04:11:27,338 --> 04:11:30,942 THAN I DON'T KNOW IF EVERYBODY 6594 04:11:31,009 --> 04:11:35,079 SAW OR NOT BUT IN DECEMBER THE 6595 04:11:35,146 --> 04:11:36,648 UNESCO MEMBER COUNTRIES VOTED TO 6596 04:11:36,714 --> 04:11:40,552 MOVE FORWARD DEVELOPING ETHICS 6597 04:11:40,618 --> 04:11:43,421 OF NEUROTECHNOLOGY, WHICH SHOULD 6598 04:11:43,488 --> 04:11:46,591 KICK OFF PROBABLY IN MARCH I 6599 04:11:46,658 --> 04:11:48,827 THINK THE WORK OF CONVENING 6600 04:11:48,893 --> 04:11:50,962 EXPERT PANEL THAT WILL CONSIST 6601 04:11:51,029 --> 04:11:52,797 OF 24 ACADEMICS, FOR THE FIRST 6602 04:11:52,864 --> 04:11:55,133 PART OF THE PROCESS, THAT SHOULD 6603 04:11:55,200 --> 04:11:56,234 GO THROUGH AUGUST, AND THEN 6604 04:11:56,301 --> 04:11:57,902 WE'LL CONTINUE WITH THE 6605 04:11:57,969 --> 04:11:59,103 POLITICAL PROCESS AFTER THAT. 6606 04:11:59,170 --> 04:12:03,241 I'VE PUT A LINK HERE FOR 6607 04:12:03,308 --> 04:12:04,976 NATIONAL ACADEMIES WORKSHOP IN 6608 04:12:05,043 --> 04:12:06,578 MARCH WHICH IS EXPLORING 6609 04:12:06,644 --> 04:12:07,278 BIODIRECTIONAL RELATIONSHIP 6610 04:12:07,345 --> 04:12:08,813 BETWEEN ARTIFICIAL INTELLIGENCE 6611 04:12:08,880 --> 04:12:11,649 AND NEUROSCIENCE WHICH WILL BE A 6612 04:12:11,716 --> 04:12:13,184 VALUABLE WORKSHOP AND ENCOURAGE 6613 04:12:13,251 --> 04:12:13,952 EVERYBODY TO ATTEND THAT 6614 04:12:14,018 --> 04:12:17,355 OBVIOUSLY AS WE HEARD TODAY 6615 04:12:17,422 --> 04:12:18,923 CONVERGENCE THERE IS RAISING 6616 04:12:18,990 --> 04:12:21,960 NOVEL QUESTIONS AND IS RAPIDLY 6617 04:12:22,026 --> 04:12:23,728 CHANGING THE FIELD. 6618 04:12:23,795 --> 04:12:27,765 HIGHLY COMMEND THAT WORKSHOP TO 6619 04:12:27,832 --> 04:12:28,533 EVERYBODY. 6620 04:12:28,600 --> 04:12:29,434 >> WONDERFUL. 6621 04:12:29,501 --> 04:12:31,503 I THINK WE'RE ABOUT AT THE END. 6622 04:12:31,569 --> 04:12:35,340 I WANT TO REITERATE SOME THANKS 6623 04:12:35,406 --> 04:12:38,042 THIS MORNING FOR NINA HSU, 6624 04:12:38,109 --> 04:12:42,180 SASKIA HENDRIKS, KRISTIN DUPRE 6625 04:12:42,247 --> 04:12:43,948 AND LOGISTICS. 6626 04:12:44,015 --> 04:12:45,383 THANK YOU, JOHN, FOR LEADING US 6627 04:12:45,450 --> 04:12:48,319 OFF AND BEING HERE TODAY, WALTER 6628 04:12:48,386 --> 04:12:49,187 TOO. 6629 04:12:49,254 --> 04:12:50,522 AND THANK YOU, NITA, FOR 6630 04:12:50,588 --> 04:12:52,056 CO-CHAIRING WITH ME. 6631 04:12:52,123 --> 04:12:55,994 I TURN IT BACK TO ANDREA. 6632 04:12:56,060 --> 04:12:56,661 >> THANKS, CHRISTINE. 6633 04:12:56,728 --> 04:13:00,365 ADDING MY THANKS TO YOU AND TO 6634 04:13:00,431 --> 04:13:03,568 NITA AND ALL OUR GUESTS AND 6635 04:13:03,635 --> 04:13:04,369 PANELISTS, GREAT CONVERSATIONS 6636 04:13:04,435 --> 04:13:07,038 THAT WE'LL BE ABLE TO KEEP 6637 04:13:07,105 --> 04:13:07,472 GOING. 6638 04:13:07,539 --> 04:13:10,441 REMINDER THIS GROUP DOES NOT 6639 04:13:10,508 --> 04:13:11,976 MEET IN MAY SO WE'LL SEE YOU 6640 04:13:12,043 --> 04:13:14,279 AGAIN IN AUGUST. 6641 04:13:14,345 --> 04:13:17,115 YOU'LL BE HEARING FROM NINA AND 6642 04:13:17,181 --> 04:13:18,082 WE'LL BUILD TOWARDS THAT MEETING 6643 04:13:18,149 --> 04:13:18,316 AGAIN. 6644 04:13:18,383 --> 04:13:20,618 THANKS VERY MUCH FOR YOUR 6645 04:13:20,685 --> 04:13:23,988 ATTENDANCE AND YOUR ENGAGEMENT. 6646 04:13:24,055 --> 04:13:26,090 >> AND FINAL WORD OF THANKS TO 6647 04:13:26,157 --> 04:13:26,591 EVERYBODY. 6648 04:13:26,658 --> 04:13:28,226 GREAT DAY OF DISCUSSION. 6649 04:13:28,293 --> 04:13:31,429 YOU BROUGHT A LOT OF ISSUES THAT 6650 04:13:31,496 --> 04:13:33,631 HAVE BEEN SWIRLING AROUND INTO 6651 04:13:33,698 --> 04:13:35,466 NOT ONLY BETTER FOCUS BUT ALSO 6652 04:13:35,533 --> 04:13:38,903 WE GOT A LOT OF MORE THINKING TO 6653 04:13:38,970 --> 04:13:39,103 DO. 6654 04:13:39,170 --> 04:13:43,241 THANKS SO MUCH FOR ALL THAT. 6655 04:13:45,743 --> 04:13:47,011 >> WE'LL CLOSING MEETING. 6656 04:13:47,078 --> 04:13:48,079 THANKS, JOHN. 6657 04:13:48,146 THANKS, EVERYONE.