1 00:00:05,560 --> 00:00:09,880 >>I WOULD LIKE TO WELCOME 2 00:00:09,880 --> 00:00:11,520 EVERYONE TO THE 13TH MEETING OF 3 00:00:11,520 --> 00:00:13,720 THE BRAIN NEUROETHICS WORK 4 00:00:13,720 --> 00:00:16,640 GROUP. FONDLY REFERRED TO AS THE 5 00:00:16,640 --> 00:00:19,040 NEWG OR THE NEWG. I WANT TO 6 00:00:19,040 --> 00:00:21,160 EXTEND A WARM WELCOME THE OUR 7 00:00:21,160 --> 00:00:23,080 WORKING GROUP CO-CHAIRS DR. HANK 8 00:00:23,080 --> 00:00:24,440 GREELY AND CHRISTINE GRADY AS 9 00:00:24,440 --> 00:00:25,920 WELL AS MEMBERS OF THE WORKING 10 00:00:25,920 --> 00:00:27,720 GROUP ALONG WITH OUR INVITED 11 00:00:27,720 --> 00:00:28,960 SPEAKERS AND PANELISTS WHO WILL 12 00:00:28,960 --> 00:00:30,320 BE JOINING US TODAY. MY NAME IS 13 00:00:30,320 --> 00:00:32,200 ANDREA MITCHENER, DEPUTY 14 00:00:32,200 --> 00:00:33,920 DIRECTOR O OF THE NIH BRAIN 15 00:00:33,920 --> 00:00:36,080 INITIATIVEINITIATIVE. I SERVE AS 16 00:00:36,080 --> 00:00:37,120 DESIGNATED FEDERAL OFFICIAL FOR 17 00:00:37,120 --> 00:00:38,760 TODAY'S MEETING. NOTICE I'M A 18 00:00:38,760 --> 00:00:41,080 NEW FACE IN THIS ROLE AS WALTER 19 00:00:41,080 --> 00:00:42,520 MENTION AND I WANT TO TAKE A 20 00:00:42,520 --> 00:00:44,880 QUICK MOMENT TO ACKNOWLEDGE THE 21 00:00:44,880 --> 00:00:47,320 TREMENDOUS CONTRIBUTIONS OF MY 22 00:00:47,320 --> 00:00:50,000 PREDECESSOR DR. RAMOS, DR. RAMOS 23 00:00:50,000 --> 00:00:51,200 RECENTLY TOOK A POSITION AT THE 24 00:00:51,200 --> 00:00:54,200 DANA FOUNDATION AS THE VICE 25 00:00:54,200 --> 00:00:56,080 PRESIDENT OF NEUROSCIENCE WITHIN 26 00:00:56,080 --> 00:00:57,960 SOCIETY. SO WHILE SHE WAS AT NIH 27 00:00:57,960 --> 00:01:00,160 IN ADDITION TO BEING DFO FOR 28 00:01:00,160 --> 00:01:02,240 THIS GROUP, DR. RAMOS WAS VIEW 29 00:01:02,240 --> 00:01:04,040 MENTAL IN FACILITATING THE RAPID 30 00:01:04,040 --> 00:01:05,320 GROWTH OF NEUROETHICS EFFORTS 31 00:01:05,320 --> 00:01:07,240 FOR THE BRAIN INITIATIVE AND 32 00:01:07,240 --> 00:01:08,520 REALLY SENDING A STRONG 33 00:01:08,520 --> 00:01:10,240 FOUNDATION FOR NIH AS AN 34 00:01:10,240 --> 00:01:11,280 EMERGING LEADER IN THIS SPACE SO 35 00:01:11,280 --> 00:01:13,800 WE ARE VERY GRATEFUL FOR HER 36 00:01:13,800 --> 00:01:15,640 CONTRIBUTIONS, THANK YOU, KARA. 37 00:01:15,640 --> 00:01:17,080 AS MOST OF YOU KNOW THE 38 00:01:17,080 --> 00:01:18,320 NEUROETHICS WORKING GROUP IS NOT 39 00:01:18,320 --> 00:01:22,320 A FORMAL ADVISORY GROUP LIKE THE 40 00:01:22,320 --> 00:01:23,320 BRAIN MULTI-COUNCIL WORKING 41 00:01:23,320 --> 00:01:24,760 GROUP THE NEWG IS A WORKING 42 00:01:24,760 --> 00:01:26,880 GROUP OF ADVISORY COUNCIL OF THE 43 00:01:26,880 --> 00:01:28,240 NIH INSTITUTES AND CENTERS THAT 44 00:01:28,240 --> 00:01:30,640 PARTICIPATE IN THE BRAIN 45 00:01:30,640 --> 00:01:31,960 INITIATIVE. IT WAS ESTABLISHED 46 00:01:31,960 --> 00:01:32,920 BECAUSE OF THE RECOGNIZED NEED 47 00:01:32,920 --> 00:01:35,800 FOR INPUT ON NEUROETHICAL 48 00:01:35,800 --> 00:01:36,400 CONSIDERATIONS RELATED TO THE 49 00:01:36,400 --> 00:01:37,520 RESEARCH THAT IS SUPPORTED 50 00:01:37,520 --> 00:01:40,720 THROUGH THE BRAIN INITIATIVE. 51 00:01:40,720 --> 00:01:42,160 THE NEWG DELIBERATES ONETH CAT 52 00:01:42,160 --> 00:01:43,760 QUESTIONS THAT COME UP IN 53 00:01:43,760 --> 00:01:45,440 CONTEXT OF BRAIN RESEARCH AND 54 00:01:45,440 --> 00:01:47,840 CAN OFFER INPUT AND FURTHER 55 00:01:47,840 --> 00:01:50,280 POINTS FOR CONSIDERATION. SO 56 00:01:50,280 --> 00:01:51,520 TODAY WE AGAIN HAVE A ZOOM 57 00:01:51,520 --> 00:01:52,960 MEETING AS WE CONTINUE IN THE 58 00:01:52,960 --> 00:01:54,520 VIRTUAL FORMAT UNTIL THE DAY 59 00:01:54,520 --> 00:01:55,480 THAT WE CAN ONCE AGAIN MEET IN 60 00:01:55,480 --> 00:01:58,680 PERSON. WE'LL START TODAY WITH 61 00:01:58,680 --> 00:02:00,320 AN UPDATE FROM THE BRAIN 62 00:02:00,320 --> 00:02:02,520 DIRECTOR, DR. JOHN NGAI. 63 00:02:02,520 --> 00:02:05,000 FOLLOWING THAT WE'LL DEVOTE 64 00:02:05,000 --> 00:02:06,440 MAJORITY OF TODAY TO A SESSION 65 00:02:06,440 --> 00:02:08,640 OF ETHICAL CHALLENGES IN 66 00:02:08,640 --> 00:02:10,640 IMPLANTED NEURODEVICE RESEARCH 67 00:02:10,640 --> 00:02:11,520 INVOLVING HUMAN PARTICIPANTS 68 00:02:11,520 --> 00:02:13,520 INCLUDING A PANEL SESSION AND 69 00:02:13,520 --> 00:02:14,960 DISCUSSION. WE'LL THEN DEDICATE 70 00:02:14,960 --> 00:02:16,680 SOME TIME TO THINK ABOUT FUTURE 71 00:02:16,680 --> 00:02:17,960 ACTIVITIES AND WE'LL WRAP UP THE 72 00:02:17,960 --> 00:02:20,280 DAY WITH UPDATES FROM THE NEWG 73 00:02:20,280 --> 00:02:21,320 MEMBERS ABOUT WHAT EVERYONE HAS 74 00:02:21,320 --> 00:02:23,320 BEEN UP TO IN THE NEUROETHICS 75 00:02:23,320 --> 00:02:27,200 SPACE. SO WE HAVE NO NEW NEWG 76 00:02:27,200 --> 00:02:28,880 MEMBERS JOINING US BUT WE HAVE A 77 00:02:28,880 --> 00:02:30,120 MEMBER ROTATING OFF FOLLOWING 78 00:02:30,120 --> 00:02:31,960 TODAY'S MEETING AND JOHN WILL 79 00:02:31,960 --> 00:02:33,120 DESCRIBE THESE TRANSITIONS IN A 80 00:02:33,120 --> 00:02:36,000 FEW MINUTES. SO JUST A FEW 81 00:02:36,000 --> 00:02:37,240 HOUSEKEEPING ITEMS BEFORE WE 82 00:02:37,240 --> 00:02:39,920 START. AS REMINDER THIS OPEN 83 00:02:39,920 --> 00:02:42,600 SESSION IS BEING VIDEOCAST LIVE 84 00:02:42,600 --> 00:02:45,520 IN PUBLIC DOMAIN. THE RECORDING 85 00:02:45,520 --> 00:02:47,320 WILL BE ARCHIVED FOR VIEWING ON 86 00:02:47,320 --> 00:02:49,920 THE NIH AND BRAIN WEB SITES. 87 00:02:49,920 --> 00:02:51,080 DURING PRESENTATIONS PLEASE MUTE 88 00:02:51,080 --> 00:02:52,400 YOUR LINE AND TURN OFF YOUR 89 00:02:52,400 --> 00:02:54,200 VIDEO WHEN NOT SPEAKING, THIS IS 90 00:02:54,200 --> 00:02:56,720 HELP FOR THE VIDEOCAST. AND 91 00:02:56,720 --> 00:02:58,600 DURING DISCUSSION PLEASE TURN ON 92 00:02:58,600 --> 00:03:00,760 YOUR VIDEO AND USE THE RAISE 93 00:03:00,760 --> 00:03:01,680 HAND OPTION IF YOU HAVE 94 00:03:01,680 --> 00:03:03,200 QUESTIONS. WE'LL CALL ON YOU TO 95 00:03:03,200 --> 00:03:04,720 UNMUTE YOURSELF FOR QUESTIONS 96 00:03:04,720 --> 00:03:06,120 THAT YOU WOULD LIKE TO RAISE OR 97 00:03:06,120 --> 00:03:07,520 COMMENTS FOR GENERAL DISCUSSION 98 00:03:07,520 --> 00:03:09,920 OPT FOR THE RAISE HAND FEATURE 99 00:03:09,920 --> 00:03:10,760 RATHER THAN TYPING THE QUESTIONS 100 00:03:10,760 --> 00:03:13,520 IN THE ZOOM CHAT. SO YOUR 101 00:03:13,520 --> 00:03:15,160 VIDEOCAST ATTENDEES CAN SEE THE 102 00:03:15,160 --> 00:03:17,440 QUESTIONS. I KNOW EVERYONE IS 103 00:03:17,440 --> 00:03:19,000 REALLY BUSY AND WE VERY MUCH 104 00:03:19,000 --> 00:03:20,560 APPRECIATE YOUR TIME AND YOUR 105 00:03:20,560 --> 00:03:24,360 INPUT TODAY. JUST A FINAL NOTE 106 00:03:24,360 --> 00:03:26,280 THIS CAN'T HAPPEN WITHOUT REALLY 107 00:03:26,280 --> 00:03:27,680 FABULOUS TEAM WE HAVE AT NIH. 108 00:03:27,680 --> 00:03:28,920 THANK YOU TO COLLEAGUES WHO 109 00:03:28,920 --> 00:03:30,320 MANAGE THE VIDEOCASTING, 110 00:03:30,320 --> 00:03:32,120 ESPECIALLY WANT TO EXTEND THANKS 111 00:03:32,120 --> 00:03:34,640 TO DR. NINA SHOE, THE SCIENCE 112 00:03:34,640 --> 00:03:35,840 COMMITTEE SPECIALIST FOR THIS 113 00:03:35,840 --> 00:03:38,520 WORKING GROUP. ALONG WITH DR. 114 00:03:38,520 --> 00:03:41,440 HENDRIX AND KRISTIN DUPRUIS. 115 00:03:41,440 --> 00:03:44,320 LAST BUT NOT LEAST DR. NGAI 116 00:03:44,320 --> 00:03:46,040 BRAIN DIRECTOR FOR SUPPORT OF 117 00:03:46,040 --> 00:03:47,360 NEUROETHICS IN GENERAL AND NOW I 118 00:03:47,360 --> 00:03:49,040 WILL BE TURNING IT OVER TO YOU, 119 00:03:49,040 --> 00:04:09,520 JOHN FOR YOUR UPDATE. 120 00:04:09,520 --> 00:04:10,960 >> THANK YOU. DO I REMEMBER HOW 121 00:04:10,960 --> 00:04:13,400 TO DO THIS? ARE YOU SEEING THE 122 00:04:13,400 --> 00:04:20,320 CORRECT SLIDES? AS ANDREW 123 00:04:20,320 --> 00:04:22,160 MENTIONED WE HAD TRANSITIONS IN 124 00:04:22,160 --> 00:04:23,800 AND AROUND NEWG. FIRST TO 125 00:04:23,800 --> 00:04:26,920 MENTION IS STEVE HYMAN WILL 126 00:04:26,920 --> 00:04:30,520 CYCLE OFF, BEFORE I CAME ON AS 127 00:04:30,520 --> 00:04:33,000 BRAIN DIRECTOR MAY 2020, WORKING 128 00:04:33,000 --> 00:04:35,920 GROUP MEMBERS WERE APPOINTED TO 129 00:04:35,920 --> 00:04:37,440 INDEFINITE TERMS AND TO OUR 130 00:04:37,440 --> 00:04:39,320 WORKING GROUP BOTH NEWG AND 131 00:04:39,320 --> 00:04:43,000 MULTI-COUNCIL WORKING GROUP OR 132 00:04:43,000 --> 00:04:45,560 NCWG. WILLINGNESS TO GO ALONG 133 00:04:45,560 --> 00:04:48,320 WITH THIS SHENANIGAN COMPARED TO 134 00:04:48,320 --> 00:04:50,200 MORE TYPICAL FOUR YEAR 135 00:04:50,200 --> 00:04:51,360 APPOINTMENTS ADVISORY COMMITTEES 136 00:04:51,360 --> 00:04:52,920 AND STUDY SECTIONS SPEAKS TO THE 137 00:04:52,920 --> 00:04:54,120 GREAT STARTUP SPIRIT OF EVERYONE 138 00:04:54,120 --> 00:04:56,120 WHO HELPED MAKE BRAIN I THINK 139 00:04:56,120 --> 00:04:57,560 THE VIBRANT ENTERPRISE THAT IT 140 00:04:57,560 --> 00:05:02,160 IS TODAY. BUT TIME HAS COME TO 141 00:05:02,160 --> 00:05:03,480 TARGET GIVING PEOPLE THEIR LIVES 142 00:05:03,480 --> 00:05:05,160 BACK SO WE ARE CYCLING FOLKS OFF 143 00:05:05,160 --> 00:05:06,840 THE COMMITTEES AND APPOINTING 144 00:05:06,840 --> 00:05:08,560 NEW MEMBERS NOW TO FOUR YEAR 145 00:05:08,560 --> 00:05:11,440 TERMS. SO BEHALF OF EVERYONE 146 00:05:11,440 --> 00:05:13,880 HERE AT BRAIN AND ENTIRE 147 00:05:13,880 --> 00:05:17,520 NEUROSCIENCE COMMUNITY I WANT TO 148 00:05:17,520 --> 00:05:20,280 I WANT TO EXTENT UNENDING 149 00:05:20,280 --> 00:05:22,920 GRATITUDE AS WE BID FAIR WELL TO 150 00:05:22,920 --> 00:05:24,800 STEVE HYMAN WHO SERVED SINCE 151 00:05:24,800 --> 00:05:28,000 015. HE MADE ENORMOUS 152 00:05:28,000 --> 00:05:29,600 CONTRIBUTIONS TO BIOMEDICINE IN 153 00:05:29,600 --> 00:05:30,640 THIS COUNTRY AND THE WORLD. HE 154 00:05:30,640 --> 00:05:32,080 HELD A NUMBER OF VERY IMPORTANT 155 00:05:32,080 --> 00:05:34,160 POSTS AND STEVE WE LOOK FORWARD 156 00:05:34,160 --> 00:05:36,240 TO STAYING IN TOUCH WITH YOU AND 157 00:05:36,240 --> 00:05:38,040 SEEING ALL THE GREAT THINGS YOU 158 00:05:38,040 --> 00:05:40,360 CONTINUE TO DO IN THE FIELD OF 159 00:05:40,360 --> 00:05:44,440 NEUROSCIENCE AND NEUROPSYCHIATRY 160 00:05:44,440 --> 00:05:46,920 NEUROPSYCHIATRY. AS ANDREA ALSO 161 00:05:46,920 --> 00:05:48,720 MENTIONED ANOTHER PERSON VERY 162 00:05:48,720 --> 00:05:51,520 NEAR AND DEAR TO US, CHARA MAY 163 00:05:51,520 --> 00:05:55,400 ROSE, I THINK YOU IN THE VIRTUAL 164 00:05:55,400 --> 00:05:57,440 SPACE WATCHING US. SHE'S BEEN 165 00:05:57,440 --> 00:05:58,240 INSTRUMENTAL ESTABLISHING 166 00:05:58,240 --> 00:05:59,600 NEUROETHICS AS A KEY PIECE OF 167 00:05:59,600 --> 00:06:01,120 WHAT WE DO HERE NOT ONLY IN THE 168 00:06:01,120 --> 00:06:04,400 BRAIN INITIATIVE BUT ACROSS 169 00:06:04,400 --> 00:06:06,280 NINDS AND NOW THANKS TO HER 170 00:06:06,280 --> 00:06:08,560 RECENT EFFORTS BEFORE LEAVING 171 00:06:08,560 --> 00:06:12,680 ACROSS THE NIH IN GENERAL. KHARA 172 00:06:12,680 --> 00:06:14,360 WORE MANY HATS HERE YOU CAN SEE. 173 00:06:14,360 --> 00:06:16,480 SHE CO-LED NEUROETHICS PROGRAM 174 00:06:16,480 --> 00:06:20,680 TEAM, SHE DIRECTED INUREMENTICS 175 00:06:20,680 --> 00:06:22,680 PROGRAM, SHE WAS CHIEF OF 176 00:06:22,680 --> 00:06:23,320 NEUROSCIENTIST CONTENT AND 177 00:06:23,320 --> 00:06:25,520 STRATEGY AT NINDS, AND CO-CHAIR 178 00:06:25,520 --> 00:06:26,880 OF THE NIH COORDINATING 179 00:06:26,880 --> 00:06:27,960 COMMITTEE FOR BIOETHICS RESEARCH 180 00:06:27,960 --> 00:06:31,520 AND CHAININGING. SHE'S NOW TAKING A 181 00:06:31,520 --> 00:06:33,720 NEW EXCITING ROLE AS VICE 182 00:06:33,720 --> 00:06:34,800 PRESIDENT OF NEUROSCIENCE WITHIN 183 00:06:34,800 --> 00:06:36,840 SOCIETY AT THE DANA FOUNDATION 184 00:06:36,840 --> 00:06:38,720 AND WE LOOK FORWARDING TO 185 00:06:38,720 --> 00:06:40,920 WORKING WITH HER IN HER NEW 186 00:06:40,920 --> 00:06:43,760 ROLE. WE MISS YOU DEARLY BY VERY 187 00:06:43,760 --> 00:06:45,320 HAPPY FOR YOU. SO I WANT TO GIVE 188 00:06:45,320 --> 00:06:47,920 YOU A FEW UPDATES OF THE GOINGS 189 00:06:47,920 --> 00:06:50,880 ON AROUND HERE. BRAIN 190 00:06:50,880 --> 00:06:51,520 ANYWHERETIVE STARTED A DATA 191 00:06:51,520 --> 00:06:54,720 SHARING POLICY LAST YEAR. IT 192 00:06:54,720 --> 00:06:57,080 DOVE TAILS WITH AND PRECEDES THE 193 00:06:57,080 --> 00:06:59,200 BROADER DATA SHARING POLICY 194 00:06:59,200 --> 00:07:01,000 COMING THROUGH NIH MORE 195 00:07:01,000 --> 00:07:03,640 GENERALLY. OUR POLICY REQUIRES 196 00:07:03,640 --> 00:07:05,200 INVESTIGATORS WHO ARE GENERATING 197 00:07:05,200 --> 00:07:07,600 ANY SIGNIFICANT DATA SETS TO 198 00:07:07,600 --> 00:07:11,320 DEPOSIT THE DATA WITH 199 00:07:11,320 --> 00:07:12,920 APPROPRIATE METADATA INFORMATION 200 00:07:12,920 --> 00:07:14,520 AS WELL AS MEETING REQUIRED 201 00:07:14,520 --> 00:07:15,880 QUALITY CONTROL STANDARDS TO ONE 202 00:07:15,880 --> 00:07:18,120 OF ABOUT HALF DOZEN DATA 203 00:07:18,120 --> 00:07:19,200 ARCHIVES THAT ARE SUPPORTED BY 204 00:07:19,200 --> 00:07:21,800 BRAIN. WE JUST ROLLED THIS OUT 205 00:07:21,800 --> 00:07:24,320 LAST YEAR. AND WE ARE NOW 206 00:07:24,320 --> 00:07:26,080 WORKING WITH DPIs TO MAKE SURE 207 00:07:26,080 --> 00:07:28,960 THAT ALL GOES WELL AND THE 208 00:07:28,960 --> 00:07:31,600 COORDINATED APPROPRIATELY WITH 209 00:07:31,600 --> 00:07:34,000 THE ARCHIVE MANAGERS. AGAIN, 210 00:07:34,000 --> 00:07:35,680 THIS DOVE TAILS WITH THE NIH 211 00:07:35,680 --> 00:07:37,040 DATA SHARING POLICY WHICH IS 212 00:07:37,040 --> 00:07:38,560 ROLLING OUT NOW AND THIS IS VERY 213 00:07:38,560 --> 00:07:40,120 IMPORTANT TO MAKE SURE THAT THE 214 00:07:40,120 --> 00:07:42,520 RESOURCES WE GENERATE THROUGH 215 00:07:42,520 --> 00:07:43,920 BRAIN AND THROUGH NIH FUNDED 216 00:07:43,920 --> 00:07:46,160 RESEARCH ARE AVAILABLE FOR ALL 217 00:07:46,160 --> 00:07:49,680 TO BENEFIT FROM. 218 00:07:49,680 --> 00:07:53,240 I WANT TO POINT OUT THIS 219 00:07:53,240 --> 00:07:54,320 INFORMATION FOR GENOMIC DATA 220 00:07:54,320 --> 00:07:56,200 SHARING POLICY. THIS IS JUST TO 221 00:07:56,200 --> 00:07:58,520 KEEP PACE WITH THE EVOLVING 222 00:07:58,520 --> 00:07:59,760 SCIENTIFIC OPPORTUNITIES BUT 223 00:07:59,760 --> 00:08:02,160 ALSO THE POTENTIAL RISKS 224 00:08:02,160 --> 00:08:04,800 INVOLVED AS WE GENERATE MORE 225 00:08:04,800 --> 00:08:07,000 DETAILED INFORMATION THAT WILL 226 00:08:07,000 --> 00:08:08,920 BE KEY FOR BIOMEDICAL RESEARCH 227 00:08:08,920 --> 00:08:10,360 AND ADVANCES BUT ALSO RAISING 228 00:08:10,360 --> 00:08:12,560 SIGNIFICANT ISSUES ABOUT PRIVACY 229 00:08:12,560 --> 00:08:14,320 GIVEN THAT MANY GENOMIC DATA 230 00:08:14,320 --> 00:08:17,840 THEMSELVES CAN BE USED TO 231 00:08:17,840 --> 00:08:18,600 DEIDENTIFY THIS SOURCE 232 00:08:18,600 --> 00:08:20,120 INDIVIDUAL. ONE CAN SUBMIT 233 00:08:20,120 --> 00:08:21,720 COMMENTS AT THE LINK PROVIDED 234 00:08:21,720 --> 00:08:23,520 BELOW AND I DO ENCOURAGE YOU TO 235 00:08:23,520 --> 00:08:26,200 THINK ABOUT THIS AND SUBMIT YOUR 236 00:08:26,200 --> 00:08:28,480 COMMENTS BY THE REPLY DATA 237 00:08:28,480 --> 00:08:30,320 FEBRUARY 28 IF YOU HAVE SOME 238 00:08:30,320 --> 00:08:35,880 GOOD PERSPECTIVES TO SHARE. NOW, 239 00:08:35,880 --> 00:08:37,960 AS I HOPE YOU CAN APPRECIATE 240 00:08:37,960 --> 00:08:39,920 GIVEN WE ARE MEETING HERE AS THE 241 00:08:39,920 --> 00:08:40,960 NEUROETHICS WORKING GROUP BRAIN 242 00:08:40,960 --> 00:08:43,280 DOES HAVE A COMMITMENT TO 243 00:08:43,280 --> 00:08:44,520 SUPPORTING NEUROETHICS RESEARCH 244 00:08:44,520 --> 00:08:45,480 AND HAVING A BETTER 245 00:08:45,480 --> 00:08:47,720 UNDERSTANDING OF THE IMPACTS 246 00:08:47,720 --> 00:08:49,600 THAT OUR RESEARCH IS HAVING ON 247 00:08:49,600 --> 00:08:51,600 THE HUMAN CONDITION AT LARGE. WE 248 00:08:51,600 --> 00:08:53,040 HAVE AN OPEN CALL FOR 249 00:08:53,040 --> 00:08:55,240 SUPPLEMENTS TO EMBED ETHICISTS 250 00:08:55,240 --> 00:08:56,520 WITHIN CURRENTLY BRAIN 251 00:08:56,520 --> 00:08:58,920 INITIATIVE FUNDED RESEARCH, 252 00:08:58,920 --> 00:09:01,840 NOTICE IS POINTED OUT HERE. THIS 253 00:09:01,840 --> 00:09:03,480 IS REALLY TO ENHANCE SCIENTIFIC 254 00:09:03,480 --> 00:09:04,880 IMPACT OF CURRENTLY FUNDED 255 00:09:04,880 --> 00:09:06,520 PROJECTS INTEGRATING AGAIN THESE 256 00:09:06,520 --> 00:09:07,520 PERSPECTIVES AND APPROACHES 257 00:09:07,520 --> 00:09:09,440 WITHIN THE PROJECTS. AND THERE 258 00:09:09,440 --> 00:09:14,040 ARE A NUMBER OF AREAS COULD BE 259 00:09:14,040 --> 00:09:16,120 REALLY QUITE USEFUL FOR STUDY 260 00:09:16,120 --> 00:09:19,280 AND ARE LISTED HERE BUT 261 00:09:19,280 --> 00:09:20,840 CERTAINLY NOT ALL INCLUSIVE 262 00:09:20,840 --> 00:09:22,800 LIST. WE HAVE A ROLLING 263 00:09:22,800 --> 00:09:24,320 SUBMISSION LIST AND REVIEW 264 00:09:24,320 --> 00:09:25,000 PROCESS THROUGH APRIL OF THIS 265 00:09:25,000 --> 00:09:31,920 AREA. IS SO I WON'T GET INTO 266 00:09:31,920 --> 00:09:33,880 THIS TOO DEEPLY HERE, I WILL 267 00:09:33,880 --> 00:09:35,120 SPEAK MORE ABOUT THIS TOMORROW 268 00:09:35,120 --> 00:09:36,320 AT THE MULTI-COUNCIL WORKING 269 00:09:36,320 --> 00:09:39,720 GROUP BUT WE ARE IN THE MIDST OF 270 00:09:39,720 --> 00:09:42,560 LAUNCHING A THE THREE SO CALLED 271 00:09:42,560 --> 00:09:44,040 BRAIN 2.0 TRANSFORMATIVE 272 00:09:44,040 --> 00:09:46,120 PROJECTS RECOMMENDED BY THE 273 00:09:46,120 --> 00:09:46,760 BRAIN 2.0 WORKING GROUPS THAT 274 00:09:46,760 --> 00:09:48,280 COULD HAVE POTENTIAL FOR 275 00:09:48,280 --> 00:09:49,480 TRANSFORMING THE WAY WE 276 00:09:49,480 --> 00:09:50,520 UNDERSTAND THE NERVOUS SYSTEM, 277 00:09:50,520 --> 00:09:53,280 THE BRAIN IN PARTICULAR, WITH AN 278 00:09:53,280 --> 00:09:55,480 EYE TOWARDS TREATING HUMAN BRAIN 279 00:09:55,480 --> 00:09:57,080 DISORDERS. THE THREE PROJECTS WE 280 00:09:57,080 --> 00:09:59,720 CHOSE TO PURSUE ON THE HUMAN 281 00:09:59,720 --> 00:10:02,760 BRAIN ATLAS, THE DEVELOPING TOOL 282 00:10:02,760 --> 00:10:05,680 KIT FOR GETTING PRECISION CELL 283 00:10:05,680 --> 00:10:07,760 ACCESS TO BRAIN CELL TYPES, AS 284 00:10:07,760 --> 00:10:09,560 WELL AS WHOLE BRAIN 285 00:10:09,560 --> 00:10:11,520 MICROCONNECTIVITY PROJECT. AND 286 00:10:11,520 --> 00:10:13,520 THE IDEA BEHIND THESE PROJECTS 287 00:10:13,520 --> 00:10:17,520 IS TO PROVIDE THE GROUND TRUTH 288 00:10:17,520 --> 00:10:20,480 WITH THE CELL ATLAS AND 289 00:10:20,480 --> 00:10:21,080 CONNECTIVITY PROJECT AND MEANS 290 00:10:21,080 --> 00:10:23,000 OF TESTING AND LEVERAGING THAT 291 00:10:23,000 --> 00:10:25,400 INFORMATION WITH THE PRECISION 292 00:10:25,400 --> 00:10:28,040 ACCESS TOOLS TOOLS. SO IN MANY MANY 293 00:10:28,040 --> 00:10:29,520 WAYS THESE THREE PROJECTS WHICH 294 00:10:29,520 --> 00:10:31,800 WE SUPPORT AND SYNERGISTIC AND 295 00:10:31,800 --> 00:10:34,720 WE ARE EXCITE ABOUT THESE 296 00:10:34,720 --> 00:10:36,320 PROJECTS, WE ARE WELL ON OUR WAY 297 00:10:36,320 --> 00:10:38,920 TO LAUNCHING THE HUMAN CELL 298 00:10:38,920 --> 00:10:40,880 ATLAS PROJECTS THOSE 299 00:10:40,880 --> 00:10:44,880 APPLICATIONS WERE JUST RECEIVED, 300 00:10:44,880 --> 00:10:46,760 WE STARTED ROLLING OUT THE 301 00:10:46,760 --> 00:10:49,160 AWARDS AND MORE UNDER REVIEW FOR 302 00:10:49,160 --> 00:10:52,120 PRECISION CELL ACCESS AND BRAIN 303 00:10:52,120 --> 00:10:54,160 MICROACTIVITY PROJECT, THESE 304 00:10:54,160 --> 00:10:55,680 FOAs ARE DUE TO BE ISSUED THE 305 00:10:55,680 --> 00:10:57,440 NEXT FEW MONTHS.LY TALK ABOUT 306 00:10:57,440 --> 00:10:58,440 THAT MORE TOMORROW AND IF YOU 307 00:10:58,440 --> 00:11:00,360 ARE INTERESTED IN READING 308 00:11:00,360 --> 00:11:01,560 FURTHER, JUST PUBLISHED A 309 00:11:01,560 --> 00:11:03,280 COMMENTARY ON THE TRANSFORMATIVE 310 00:11:03,280 --> 00:11:05,320 PROJECTS IN CELL THAT CAME OUT A 311 00:11:05,320 --> 00:11:07,120 FEW WEEKS AGO. 312 00:11:07,120 --> 00:11:08,560 I THOUGHT I WOULD JUST FINISH UP 313 00:11:08,560 --> 00:11:10,320 BY TOUCHING ON A FEW SCIENTIFIC 314 00:11:10,320 --> 00:11:13,120 ADVANCES. I WON'T GET INTO 315 00:11:13,120 --> 00:11:14,680 DETAIL HERE BUT IT WILL FRAME 316 00:11:14,680 --> 00:11:17,520 THE DISCUSSION WE'LL HAVE IN A 317 00:11:17,520 --> 00:11:18,520 FEW MINUTES THE ETHICAL AND 318 00:11:18,520 --> 00:11:21,920 OTHER IMPLICATIONS OF STUDYING 319 00:11:21,920 --> 00:11:25,920 HUMANS IN INVASIVE TRIALS. THIS 320 00:11:25,920 --> 00:11:28,400 IS A STUDY I TOUCHED ON THIS I 321 00:11:28,400 --> 00:11:31,640 THINK AT THE LAST NCWG FROM PHIL 322 00:11:31,640 --> 00:11:35,160 STAR'S GROUP UCS, IF THEY USED 323 00:11:35,160 --> 00:11:36,920 BIDIRECTIONAL ELECTRODES IN THE 324 00:11:36,920 --> 00:11:38,680 TREATMENT OF MOVEMENT DISORDERS 325 00:11:38,680 --> 00:11:40,320 AND PARKINSON PATIENTS AND THE 326 00:11:40,320 --> 00:11:42,640 IDEA HERE IS TO USE ADAPTIVE 327 00:11:42,640 --> 00:11:46,000 STIMULATION TO FINE TUNE THE 328 00:11:46,000 --> 00:11:48,280 STIMULATION TO THE PATIENTS 329 00:11:48,280 --> 00:11:50,840 NEED. THE COOL THING HERE IS 330 00:11:50,840 --> 00:11:52,720 THAT THE DEVICE, THE ELECTRODES 331 00:11:52,720 --> 00:11:54,920 AND CONTROLLERS ARE FULLY 332 00:11:54,920 --> 00:11:56,920 IMPLANTED AND THE COMMUNICATE 333 00:11:56,920 --> 00:11:59,400 WIRELESSLY WITH THE TABLET AND 334 00:11:59,400 --> 00:12:01,960 THEREFORE CAN BE USED TO 335 00:12:01,960 --> 00:12:03,840 IDENTIFY PERSONALIZED 336 00:12:03,840 --> 00:12:07,280 PHYSIOLOGICAL SIGNATURES OF SAY 337 00:12:07,280 --> 00:12:10,360 DESIGNEES SHAH AND TO TAILOR THE 338 00:12:10,360 --> 00:12:12,200 STIMULATION ACCORDINGLY, IT 339 00:12:12,200 --> 00:12:14,760 WORKS WELL IN EARLY STUDIES AND 340 00:12:14,760 --> 00:12:16,400 THESE ARE ONGOING. SO VERY 341 00:12:16,400 --> 00:12:18,400 EXCITING AREA, IT DOES RAISE 342 00:12:18,400 --> 00:12:20,360 SEVERAL ISSUES IN TERMS OF 343 00:12:20,360 --> 00:12:21,920 PRIVACY, AS WELL AS THE 344 00:12:21,920 --> 00:12:24,280 PARTICIPATION OF PATIENTS IN 345 00:12:24,280 --> 00:12:25,920 CLINICAL TRIALS BUT THIS IS 346 00:12:25,920 --> 00:12:27,480 REALLY A VERY EXCITING ADVANCE. 347 00:12:27,480 --> 00:12:34,840 KINESIA. LAST YEAR, A STUDY FROM 348 00:12:34,840 --> 00:12:35,880 UCSF EDDIE CHANG'S GROUP LOOKED 349 00:12:35,880 --> 00:12:37,520 AT A PATIENT WITH TREATMENT 350 00:12:37,520 --> 00:12:40,600 REFRACTORY DEPRESSION WHO WAS 351 00:12:40,600 --> 00:12:42,400 IMPLANTED AND USE THESE DBS 352 00:12:42,400 --> 00:12:45,280 ELECTRODES TO STIMULATE TO SEE 353 00:12:45,280 --> 00:12:47,240 IF THEY CAN OFFSET OR AMELIORATE 354 00:12:47,240 --> 00:12:48,680 SOME OF THESE SYMPTOMS OF 355 00:12:48,680 --> 00:12:49,960 DEPRESSION AND IN THIS CASE THIS 356 00:12:49,960 --> 00:12:52,240 ONE CASE STUDY THAT SEEMEDDED TO 357 00:12:52,240 --> 00:12:56,160 HAVE SUCCESS. SO THIS OPENS THE 358 00:12:56,160 --> 00:12:59,040 DOOR FOR USING DEEP BRAIN 359 00:12:59,040 --> 00:13:00,800 STIMULATION TO TREAT TREATMENT 360 00:13:00,800 --> 00:13:02,560 REFRACTORY DEPRESSION AS WELL AS 361 00:13:02,560 --> 00:13:04,320 OTHER NEUROPSYCHIATRIC DISORDERS 362 00:13:04,320 --> 00:13:05,640 SO EXCITING ADVANCE, WE HAVE A 363 00:13:05,640 --> 00:13:06,880 LONG WAY TO GO BUT THERE IS 364 00:13:06,880 --> 00:13:08,960 PROMISE HERE IN THIS BURGEONING 365 00:13:08,960 --> 00:13:14,880 FIELD. A PAPER ALSO IS PUBLISHED 366 00:13:14,880 --> 00:13:20,720 IN NATURE MEDICINE FROM CHEF'S 367 00:13:20,720 --> 00:13:22,160 GROUP, USE THESE BIDIRECTIONAL 368 00:13:22,160 --> 00:13:23,600 ELECTRODES TO RECORD FROM A 369 00:13:23,600 --> 00:13:26,240 PATIENT WITH OCD OVER A THOUSAND 370 00:13:26,240 --> 00:13:28,120 HOURS OF BRAIN RECORDINGS AND 371 00:13:28,120 --> 00:13:29,880 HOPE DOWN THE LINE IS THAT BY 372 00:13:29,880 --> 00:13:32,680 USING THESE RECORDINGS WE CAN 373 00:13:32,680 --> 00:13:35,880 FIND ELECTROPHYSIOLOGICAL 374 00:13:35,880 --> 00:13:37,320 BIOMARKERS FOR ASPECTS OF THE 375 00:13:37,320 --> 00:13:38,920 CONDITION AND USE TO TAILOR 376 00:13:38,920 --> 00:13:41,120 THERAPIES IN ADAPTIVE WAY NOT 377 00:13:41,120 --> 00:13:43,640 UNLIKE THE WAY ADAPTIVE DBS IS 378 00:13:43,640 --> 00:13:45,400 APPLIED TO MOVEMENT DISORDERS. 379 00:13:45,400 --> 00:13:47,520 SO I'M JUST HIGHLIGHTING THESE 380 00:13:47,520 --> 00:13:50,920 THREE STUDIES BRIEFLY TO GIVE A 381 00:13:50,920 --> 00:13:52,560 GENERAL OVERVIEW, THERE ARE 382 00:13:52,560 --> 00:13:54,000 THOSE HERE ON THE COMMITTEE HAVE 383 00:13:54,000 --> 00:13:55,640 DONE STUDIES HAVE MORE KNOWLEDGE 384 00:13:55,640 --> 00:13:56,960 ABOUT THEM AND I THINK IT WILL 385 00:13:56,960 --> 00:14:00,080 BE GREAT TO THINK ABOUT STUDIES 386 00:14:00,080 --> 00:14:02,120 THAT IMPACT POTENTIAL BUT ALSO 387 00:14:02,120 --> 00:14:06,680 THE RISK THEY ENTAIL AND THE 388 00:14:06,680 --> 00:14:08,360 BURDEN, I SHOULDN'T SAY BURDEN, 389 00:14:08,360 --> 00:14:10,960 BUT THE ROLE THAT HUMAN 390 00:14:10,960 --> 00:14:12,960 PARTICIPANTS ARE RESEARCH 391 00:14:12,960 --> 00:14:14,320 PARTICIPANTS PLAY IN THIS GROUND 392 00:14:14,320 --> 00:14:16,760 BREAKING RESEARCH. WITH THAT I 393 00:14:16,760 --> 00:14:18,280 WILL STOP. I THINK WE MIGHT BE A 394 00:14:18,280 --> 00:14:20,080 LITTLE OVER TIME BUT IF THERE'S 395 00:14:20,080 --> 00:14:21,480 ANY QUESTIONS PERHAPS WE CAN 396 00:14:21,480 --> 00:14:28,400 TAKE A FEW QUICK ONES. 397 00:14:28,400 --> 00:14:35,040 >> I'M NOT SEEING ANY HANDS 398 00:14:35,040 --> 00:14:39,440 RAISED SO I THINK WE CAN GO 399 00:14:39,440 --> 00:14:42,120 AHEAD AND MOVE -- NO. JIM. 400 00:14:42,120 --> 00:14:43,680 PLEASE GO AHEAD. 401 00:14:43,680 --> 00:14:46,280 >> THANKS, ANDREA. JOHN, I DON'T 402 00:14:46,280 --> 00:14:47,720 KNOW IF YOU HAVE HAD THIS 403 00:14:47,720 --> 00:14:48,920 INFORMATION BUT FOR THE 404 00:14:48,920 --> 00:14:51,720 EMBEDDING OF NEUROETHICIST IN TO 405 00:14:51,720 --> 00:14:53,480 ONGOING BRAIN GRANTS HOW MANY 406 00:14:53,480 --> 00:14:56,560 HAVE DONE THAT, HOW MANY OF THE 407 00:14:56,560 --> 00:14:58,720 SUPPLEMENTS HAVE BEEN GIVEN AND 408 00:14:58,720 --> 00:15:03,080 DO YOU THINK IT IS WORKING. 409 00:15:03,080 --> 00:15:06,720 >> NINA OR JAY, DO YOU WANT TO 410 00:15:06,720 --> 00:15:08,800 WEIGH IN, A NEW RFA NEW NOTICE I 411 00:15:08,800 --> 00:15:12,080 BELIEVE? 412 00:15:12,080 --> 00:15:14,280 >> I GUESS THIS IS JAY I WOULD 413 00:15:14,280 --> 00:15:15,520 SAY TWO THINGS. ONE IS WE HAVE 414 00:15:15,520 --> 00:15:16,800 DONE A SIMILAR THING IN THE PAST 415 00:15:16,800 --> 00:15:18,720 AND THAT MAYBE WHAT JIM IS 416 00:15:18,720 --> 00:15:20,040 REFERRING TO. I DON'T HAVE 417 00:15:20,040 --> 00:15:21,200 NUMBERS AT HAND, WE DON'T HAVE 418 00:15:21,200 --> 00:15:23,440 ANY APPLICATIONS FOR THIS YEAR. 419 00:15:23,440 --> 00:15:25,680 BUT I CAN SAY THERE HAVE BEEN 420 00:15:25,680 --> 00:15:29,680 REALLY FANTASTIC CASES OF THIS 421 00:15:29,680 --> 00:15:32,920 MIND FRANCIS SHANNON, EMBEDDED 422 00:15:32,920 --> 00:15:35,720 IN UO 1 AND THAT PROJECT LED TO 423 00:15:35,720 --> 00:15:37,840 A FULL NEUROETHICS APPLICATION 424 00:15:37,840 --> 00:15:39,640 AND THEN GRANT AS WELL. AND 425 00:15:39,640 --> 00:15:41,120 THERE IS A FEW OTHER CASES AS 426 00:15:41,120 --> 00:15:42,120 WELL. 427 00:15:42,120 --> 00:15:43,520 >> THANKS, JAY. 428 00:15:43,520 --> 00:15:45,920 >> I WILL ADD THAT THIS IS -- 429 00:15:45,920 --> 00:15:47,000 THIS ACTIVITY IS BAKED IN TO 430 00:15:47,000 --> 00:15:49,440 SOME OF OUR FUNDING OPPORTUNITY 431 00:15:49,440 --> 00:15:50,960 ANNOUNCEMENTS, BUT THE 432 00:15:50,960 --> 00:15:53,320 SUPPLEMENT OPPORTUNITY BASICALLY 433 00:15:53,320 --> 00:15:54,880 OPENS THAT UP TO OTHER BRAIN 434 00:15:54,880 --> 00:15:58,120 AWARDEES. 435 00:15:58,120 --> 00:16:04,120 >> THANK YOU. 436 00:16:04,120 --> 00:16:05,680 >> ALL RIGHT. I DON'T THINK WE 437 00:16:05,680 --> 00:16:08,320 HAVE ANY OTHER QUESTIONS FOR 438 00:16:08,320 --> 00:16:10,200 YOU, JOHN. SO I THINK RIGHT NOW 439 00:16:10,200 --> 00:16:12,840 WE CAN TURN IT TO OUR CO-CHAIRS, 440 00:16:12,840 --> 00:16:15,680 DR.S CHRISTINE GRADY AND HANK 441 00:16:15,680 --> 00:16:18,680 GREELY. CHRISTINE, I BELIEVE YOU 442 00:16:18,680 --> 00:16:24,680 ARE UP FIRST. 443 00:16:24,680 --> 00:16:27,040 >> IF I CAN GET MY MUTE OFF I 444 00:16:27,040 --> 00:16:30,120 CAN BE ON FIRST. CAN YOU HEAR ME 445 00:16:30,120 --> 00:16:30,280 NOW? 446 00:16:30,280 --> 00:16:31,920 >> YES. 447 00:16:31,920 --> 00:16:35,560 >> SO FIRST I WANT TO THANK DR. 448 00:16:35,560 --> 00:16:37,120 NGAI AND DR. BECK EXL MITCHENER 449 00:16:37,120 --> 00:16:38,480 FOR THEIR LEADERSHIP AND GETTING 450 00:16:38,480 --> 00:16:41,240 US STARTED TODAY. AND AS A 451 00:16:41,240 --> 00:16:43,000 CO-CHAIR HANK AND I WOULD LIKE 452 00:16:43,000 --> 00:16:44,720 TO WELCOME EVERYBODY AND THANK 453 00:16:44,720 --> 00:16:46,440 YOU IN ADVANCE FOR YOUR 454 00:16:46,440 --> 00:16:47,440 CONTRIBUTIONS TO THE DISCUSSION 455 00:16:47,440 --> 00:16:51,040 TODAY. BEFORE I INTRODUCE THE 456 00:16:51,040 --> 00:16:52,800 NEXT SESSION I WOULD LIKE TO 457 00:16:52,800 --> 00:16:54,320 ECHO SOME OF THE THANKS THAT 458 00:16:54,320 --> 00:16:55,960 HAVE BEEN MADE IN ADDITION TO 459 00:16:55,960 --> 00:16:58,160 JOHN AND ANDREA, I WANT TO THANK 460 00:16:58,160 --> 00:17:00,080 THE PEOPLE BEHIND THE SCENES AND 461 00:17:00,080 --> 00:17:05,400 MOST ESPECIALLY NINA, AND DR. 462 00:17:05,400 --> 00:17:08,320 HENDRIX AND DUPRUIS BECAUSE THEY 463 00:17:08,320 --> 00:17:10,720 DO A LOT OF PREPARATORY WORK FOR 464 00:17:10,720 --> 00:17:14,320 THESE MEETINGS. ALSO THANKS 465 00:17:14,320 --> 00:17:15,720 STEVE IN NEWG, GREAT TO HAVE YOU 466 00:17:15,720 --> 00:17:17,720 AND WE'LL MISS YOU AND THANKS TO 467 00:17:17,720 --> 00:17:19,040 KHARA WHO I THINK IS LISTENING 468 00:17:19,040 --> 00:17:24,120 AND WE MISS HER TERRIBLY AND WE 469 00:17:24,120 --> 00:17:26,360 ARE GLAD SHE IS STILL GOING TO 470 00:17:26,360 --> 00:17:27,760 BE AVAILABLE TO COLLABORATE IN 471 00:17:27,760 --> 00:17:29,120 DIFFERENT WAYS SO WE LOOK 472 00:17:29,120 --> 00:17:31,040 FORWARD TO WORKING WITH YOU IN 473 00:17:31,040 --> 00:17:35,400 YOUR NEW RESPONSIBILITIES. SO 474 00:17:35,400 --> 00:17:37,520 TODAY OUR FIRST SESSION TODAY IS 475 00:17:37,520 --> 00:17:38,800 ENTITLED ANDREA MENTIONED, 476 00:17:38,800 --> 00:17:43,160 ETHICAL CHALLENGES IN IMPLANTED 477 00:17:43,160 --> 00:17:43,840 NEURAL DEVICE RESEARCH WITH 478 00:17:43,840 --> 00:17:45,440 HUMAN PARTICIPANTS. SO MANY OF 479 00:17:45,440 --> 00:17:47,000 YOU I'M SURE ARE AWARE OF SOME 480 00:17:47,000 --> 00:17:49,320 OF THE ETHICAL CHALLENGES IN 481 00:17:49,320 --> 00:17:50,880 THIS KIND OF RESEARCH FROM YOUR 482 00:17:50,880 --> 00:17:53,640 OWN WORK. AND THE NEWG IS ALSO 483 00:17:53,640 --> 00:17:54,400 DISCUSSED SOME OF THESE 484 00:17:54,400 --> 00:17:56,280 CHALLENGES IN THE PAST. WE HAD A 485 00:17:56,280 --> 00:18:00,160 WORKSHOP A FEW YEARS AGO RELATED 486 00:18:00,160 --> 00:18:03,120 TO INVASIVE NEURO DEVICES THAT 487 00:18:03,120 --> 00:18:10,440 ALLO DEVICES THATRESULTED IN THE JAMA NEUR OLOGY 488 00:18:10,440 --> 00:18:12,600 PAPER IN MY OPINION THERE ARE 489 00:18:12,600 --> 00:18:13,360 IMPORTANT CONTRIBUTION THERE ARE 490 00:18:13,360 --> 00:18:14,960 ISSUES WE DIDN'T DISCUSS AT THIS 491 00:18:14,960 --> 00:18:15,880 WORKSHOP AND WE HAVEN'T 492 00:18:15,880 --> 00:18:19,160 DISCUSSED IN NEWG. AND THERE ARE 493 00:18:19,160 --> 00:18:22,920 LOTS OF ONGOING ETHICAL 494 00:18:22,920 --> 00:18:24,280 CHALLENGES IN HUMAN RESEARCH 495 00:18:24,280 --> 00:18:28,680 WITH IMPLANTED NEURAL DEVICES. 496 00:18:28,680 --> 00:18:30,760 FURTHER I THINK AND IMPORTANTLY 497 00:18:30,760 --> 00:18:32,400 FOR TODAY'S DISCUSSION THERE ARE 498 00:18:32,400 --> 00:18:35,520 SPECIFIC CHALLENGES OR MAYBE THE 499 00:18:35,520 --> 00:18:38,320 MOST PRESSING OR VEXING 500 00:18:38,320 --> 00:18:40,320 CHALLENGES THAT DIFFER DEPENDING 501 00:18:40,320 --> 00:18:44,920 ON THE -- EXACT NATURE OF THE 502 00:18:44,920 --> 00:18:46,720 RESEARCH. SO WE ARE GOING TO TRY 503 00:18:46,720 --> 00:18:48,120 TO FOCUS A LITTLE BIT ON THAT 504 00:18:48,120 --> 00:18:49,560 TODAY. WE ARE GOING TO START 505 00:18:49,560 --> 00:18:50,800 WITH TWO BRIEF PRESENTATIONS 506 00:18:50,800 --> 00:18:53,080 FROM BRAIN FUNDED NEUROETHICS 507 00:18:53,080 --> 00:18:55,600 INVESTIGATORS. ONE OF WHOM WILL 508 00:18:55,600 --> 00:18:58,600 FOCUS ON INTRACRANIAL OR 509 00:18:58,600 --> 00:18:59,880 INTEROPERATIVE RESEARCH AND THE 510 00:18:59,880 --> 00:19:01,960 OTHER ON ETHICAL CONSIDERATIONS 511 00:19:01,960 --> 00:19:04,040 IN LONG TERM INTERACTIVE 512 00:19:04,040 --> 00:19:05,480 STUDIES. AFTER THESE TALKS WE 513 00:19:05,480 --> 00:19:07,760 ARE GOING TO HAVE A PANEL OF 514 00:19:07,760 --> 00:19:09,520 THREE INVESTIGATORS AND ONE 515 00:19:09,520 --> 00:19:10,920 RESEARCH PARTICIPANT WHO ARE 516 00:19:10,920 --> 00:19:12,080 HELP US CONSIDER A NUMBER OF 517 00:19:12,080 --> 00:19:14,600 ETHICAL ISSUES AND ENGAGE IN 518 00:19:14,600 --> 00:19:15,720 DIALOGUE WITH ALL OF US ON THIS 519 00:19:15,720 --> 00:19:20,120 ZOOM. AS YOU ARE LISTENING, I 520 00:19:20,120 --> 00:19:23,280 INVITE YOU TO BEGIN TO FORMULATE 521 00:19:23,280 --> 00:19:24,400 YOUR QUESTIONS AND THE THINGS 522 00:19:24,400 --> 00:19:27,120 YOU WOULD LIKE TO TALK ABOUT. 523 00:19:27,120 --> 00:19:28,760 ESPECIALLY WITH RESPECT TO HOW 524 00:19:28,760 --> 00:19:30,880 THE ETHICAL CHALLENGES MIGHT 525 00:19:30,880 --> 00:19:32,760 DIFFER IN DIFFERENT TYPES OF 526 00:19:32,760 --> 00:19:34,720 NEURAL DEVICE RESEARCH AND HOW 527 00:19:34,720 --> 00:19:36,320 THOSE MIGHT GUIDE OUR DISCUSSION 528 00:19:36,320 --> 00:19:39,360 GOING FORWARD. SO WITH THAT I'M 529 00:19:39,360 --> 00:19:41,360 GOING TO INTRODUCE OUR FIRST 530 00:19:41,360 --> 00:19:45,200 SPEAKER, OUR FIRST SPEAKER IS 531 00:19:45,200 --> 00:19:49,440 DR. ASHLEY FEINSINGER, A 532 00:19:49,440 --> 00:19:51,360 BIOETHICS FACULTY MEMBER AT THE 533 00:19:51,360 --> 00:19:53,920 DAVID GETHIN SCHOOL OF MEDICINE 534 00:19:53,920 --> 00:19:56,000 DEPARTMENT OF PHILOSOPHY AT 535 00:19:56,000 --> 00:19:57,320 UCLA. HER INTERESTS LIE AT THE 536 00:19:57,320 --> 00:19:58,520 INTERSECTION OF ETHICS 537 00:19:58,520 --> 00:19:59,960 PHILOSOPHY OF LANGUAGE AND 538 00:19:59,960 --> 00:20:01,520 MEDICINE, AND SHE RECEIVED HER 539 00:20:01,520 --> 00:20:04,120 Ph.D. IN PHILOSOPHY FROM UCLA. 540 00:20:04,120 --> 00:20:06,240 SHE WORKS CLOSELY WITH 541 00:20:06,240 --> 00:20:07,320 DEPARTMENT OF NEUROSURGERY ON 542 00:20:07,320 --> 00:20:09,520 ETHICS OF INVASIVE 543 00:20:09,520 --> 00:20:10,840 NON-THERAPEUTIC HUMAN 544 00:20:10,840 --> 00:20:12,720 NEUROSCIENCE RESEARCH AND NOTION 545 00:20:12,720 --> 00:20:14,720 OF SOCIETAL BENEFIT AND THIS 546 00:20:14,720 --> 00:20:18,560 COLLABORATION IS SUPPORTED BY 547 00:20:18,560 --> 00:20:20,920 BRAIN. DR. FEINSINGER WILL SPEAK 548 00:20:20,920 --> 00:20:22,320 TO US ABOUT INVESTIGATORS 549 00:20:22,320 --> 00:20:24,440 PERSPECTIVES ON ETHICAL 550 00:20:24,440 --> 00:20:26,320 COMMITMENTS, PRINCIPALS AND 551 00:20:26,320 --> 00:20:28,720 PRACTICES GUIDING INTRACRANIAL 552 00:20:28,720 --> 00:20:29,400 NEUROSCIENTIFIC RESEARCH IN 553 00:20:29,400 --> 00:20:32,160 HUMANS. BELL COME, ASHLEY. -- 554 00:20:32,160 --> 00:20:34,800 WELCOME, 555 00:20:34,800 --> 00:20:35,520 ASHLEY. 556 00:20:35,520 --> 00:20:38,600 >> THANK YOU SO MUCH, DR. GRADY. GRADY. 557 00:20:38,600 --> 00:20:42,320 LET ME TRY TO SHARE MY SCREEN A 558 00:20:42,320 --> 00:20:48,280 SECOND. 559 00:20:48,280 --> 00:20:49,920 >> CAN EVERYONE SEE THE SLIDES? 560 00:20:49,920 --> 00:20:53,240 GREAT. FIRST I WANT TO THANK THE 561 00:20:53,240 --> 00:20:54,480 NEUROETHICS WORKING GROUP FOR 562 00:20:54,480 --> 00:20:55,960 HAVING ME HERED TO TO DISCUSS 563 00:20:55,960 --> 00:20:57,400 ETHICAL COMMITMENTS PRINCIPLES 564 00:20:57,400 --> 00:20:59,640 AND PRACTICES GUIDEN 565 00:20:59,640 --> 00:21:00,520 INTRACRANIAL NEUROSCIENTIFIC 566 00:21:00,520 --> 00:21:03,680 RESEARCH IN HUMANS. I'M GRATEFUL 567 00:21:03,680 --> 00:21:05,560 FOR THIS OPPORTUNITY, I KNOW 568 00:21:05,560 --> 00:21:07,040 SOME OF YOU I HAVE WORKED WITH 569 00:21:07,040 --> 00:21:08,200 YOU IN THE PAST AND I THINK THIS 570 00:21:08,200 --> 00:21:10,320 IS A FANTASTIC FORUM FOR PUSHING 571 00:21:10,320 --> 00:21:12,920 FORWARD SOME OF THIS WORK. SO I 572 00:21:12,920 --> 00:21:14,720 WOULD LIKE TO START WITH 573 00:21:14,720 --> 00:21:15,840 ACKNOWLEDGMENTS, THE WORK I WILL 574 00:21:15,840 --> 00:21:17,600 TALK ABOUT TODAY IS THE RESULT 575 00:21:17,600 --> 00:21:20,120 OF LARGE COLLABORATIVE EFFORT 576 00:21:20,120 --> 00:21:22,400 BETWEEN NUMEROUS DISCUSSIONS AND 577 00:21:22,400 --> 00:21:25,720 ETHICAL CONVERSATIONS, WITH 578 00:21:25,720 --> 00:21:28,120 MEMBERS OF THE ROH CONSORTIUM OF 579 00:21:28,120 --> 00:21:30,120 THE BRAIN INITIATIVE. SO THIS IS 580 00:21:30,120 --> 00:21:31,080 RESEARCH OPPORTUNITIES IN HUMANS 581 00:21:31,080 --> 00:21:34,960 CONSORTIUM. AND IT IS MADE UP OF 582 00:21:34,960 --> 00:21:37,080 MORE THAN 30 INVESTIGATORS 583 00:21:37,080 --> 00:21:39,120 FUNDED BY THE NIH TO DO BASIC 584 00:21:39,120 --> 00:21:40,960 HUMAN NEUROSCIENCE RESEARCH. 585 00:21:40,960 --> 00:21:42,560 THAT RESEARCH VARIES IN KIND AND 586 00:21:42,560 --> 00:21:43,880 I WILL TRY TO WALK THROUGH THE 587 00:21:43,880 --> 00:21:45,120 DIFFERENT TYPES OF RESEARCH THAT 588 00:21:45,120 --> 00:21:47,200 THESE INVESTIGATORS DO. AND THE 589 00:21:47,200 --> 00:21:49,720 ETHICAL FRAMEWORK THAT I'LL 590 00:21:49,720 --> 00:21:50,960 PROPOSE TODAY HOW THAT 591 00:21:50,960 --> 00:21:51,840 INTERSECTS WITH THESE VERY 592 00:21:51,840 --> 00:21:53,920 DIFFERENT TYPES OF STUDIES. AS 593 00:21:53,920 --> 00:21:56,320 MENTIONED I'M ALSO FUNDED BY THE 594 00:21:56,320 --> 00:22:00,200 BRAIN INITIATIVE TO DO ETHICS 595 00:22:00,200 --> 00:22:01,760 COLLABORATIVE WORK WITH 596 00:22:01,760 --> 00:22:03,200 PARTICIPANTS WHO JOIN 597 00:22:03,200 --> 00:22:04,080 INTEROPERATIVE STUDIES SO 598 00:22:04,080 --> 00:22:05,480 GRATEFUL FOR THAT SUPPORT AND 599 00:22:05,480 --> 00:22:08,280 ALSO INCREDIBLY GRATEFUL TO THE 600 00:22:08,280 --> 00:22:09,720 SUPPORT OF THE NIH FOR 601 00:22:09,720 --> 00:22:11,720 FACILITATING SOME OF THESE LARGE 602 00:22:11,720 --> 00:22:12,560 COLLABORATIVE CONVERSATIONS AND 603 00:22:12,560 --> 00:22:14,680 FOR REALLY EMBRACING AN 604 00:22:14,680 --> 00:22:15,800 OPPORTUNITY FOR INVESTIGATORS TO 605 00:22:15,800 --> 00:22:18,880 GET TOGETHER AND SPEAK WITH AN 606 00:22:18,880 --> 00:22:22,040 EMPHASIS THEMSELVES ABOUT 607 00:22:22,040 --> 00:22:23,400 THINKING HOW TO FORMULATE 608 00:22:23,400 --> 00:22:24,760 ETHICAL PRINCIPLES TO GUIDE 609 00:22:24,760 --> 00:22:30,840 THEIR WORK. 610 00:22:30,840 --> 00:22:32,560 SO I WILL BE FOCUSING TODAY ON 611 00:22:32,560 --> 00:22:34,640 PRESENTING THE ETHICAL FRAMEWORK 612 00:22:34,640 --> 00:22:36,040 THAT HAS RECENTLY BEEN PUBLISHED 613 00:22:36,040 --> 00:22:38,400 IN A PAPER IN NEURON, WHICH IS 614 00:22:38,400 --> 00:22:40,160 CO-AUTHORED BY MYSELF AND THE 615 00:22:40,160 --> 00:22:42,720 INVESTIGATORS FROM THE ROH 616 00:22:42,720 --> 00:22:43,920 CONSORTIUM. WHICH EXPLORES 617 00:22:43,920 --> 00:22:45,920 PRACTICES AND EXPERIENCES FROM 618 00:22:45,920 --> 00:22:47,920 THE PERSPECTIVE OF INVESTIGATORS 619 00:22:47,920 --> 00:22:50,320 WHO CONDUCT THIS RESEARCH WITH 620 00:22:50,320 --> 00:22:52,520 HUMANS, WITH IMPLANTED DEVICES. 621 00:22:52,520 --> 00:22:54,720 SO AS AN OUTLINE I WILL JUST 622 00:22:54,720 --> 00:22:57,280 SURVEY THE DIFFERENT TYPES OF 623 00:22:57,280 --> 00:23:00,520 RESEARCH THAT ROH INVESTIGATORS 624 00:23:00,520 --> 00:23:02,000 PARTICIPATE IN. I WILL PRESENT 625 00:23:02,000 --> 00:23:03,480 SOME OF THE ETHICAL ISSUES AT 626 00:23:03,480 --> 00:23:04,760 THE FOREFRONT OF THAT RESEARCH 627 00:23:04,760 --> 00:23:06,120 TRYING TO STAY TRUE TO THE 628 00:23:06,120 --> 00:23:09,080 DIFFERENCES BETWEEN THE STUDIES 629 00:23:09,080 --> 00:23:11,360 AND TRYING TO HIGHLIGHT ISSUES 630 00:23:11,360 --> 00:23:13,120 IN INTEROPERATIVE RESEARCH. I 631 00:23:13,120 --> 00:23:15,280 WILL HIGHLIGHT THE NOTABLE 632 00:23:15,280 --> 00:23:16,080 KNEETURES OF THE PROPOSAL IN 633 00:23:16,080 --> 00:23:17,880 THIS PAPER, I THINK IT IS 634 00:23:17,880 --> 00:23:19,160 ACTUALLY -- FEATURES, IT IS 635 00:23:19,160 --> 00:23:22,080 QUITE INTERESTING, IT HAS BEEN 636 00:23:22,080 --> 00:23:23,600 QUITE EYE OPENING TO SEE HOW 637 00:23:23,600 --> 00:23:24,880 THINGS ARE PRESENTED TO 638 00:23:24,880 --> 00:23:26,280 INVESTIGATORS IN THE ISSUES THAT 639 00:23:26,280 --> 00:23:29,760 THEY FIND AT THE FOREFRONT. THEN 640 00:23:29,760 --> 00:23:31,560 WE'LL END WITH SOME QUESTIONS 641 00:23:31,560 --> 00:23:32,560 FOR CONTINUED WORK IN THIS 642 00:23:32,560 --> 00:23:36,440 SPACE. 643 00:23:36,440 --> 00:23:37,880 SO THE KIND OF RESEARCH THAT I 644 00:23:37,880 --> 00:23:41,600 WILL BE FOCUSED ON TODAY IS 645 00:23:41,600 --> 00:23:43,360 BASIC INTRACRANIAL RESEARCH, 646 00:23:43,360 --> 00:23:44,680 RESEARCH CONDUCTED IN CLOSE 647 00:23:44,680 --> 00:23:46,000 CONCERT WITH NEUROSURGICAL 648 00:23:46,000 --> 00:23:47,000 INTERVENTIONS WHICH PROVIDES 649 00:23:47,000 --> 00:23:50,520 RESEARCHERS WITH A UNIQUE TO 650 00:23:50,520 --> 00:23:52,520 PEER INTO THE BRAIN SO TO SPEAK 651 00:23:52,520 --> 00:23:54,720 AND GAIN UNPARALLELED ACCESS TO 652 00:23:54,720 --> 00:23:58,520 HUMAN BRAIN FUNCTION. SO FOR 653 00:23:58,520 --> 00:24:00,920 EXAMPLE, WE HAVE IN COLUMN ONE 654 00:24:00,920 --> 00:24:02,000 RESEARCHERS MAY TAKE EXTRA 655 00:24:02,000 --> 00:24:03,680 REPORTING FROM THE 656 00:24:03,680 --> 00:24:04,880 THERAPEUTICALLY IMPLANTED 657 00:24:04,880 --> 00:24:07,440 DEVICE, SO THIS MIGHT BE EXTRA 658 00:24:07,440 --> 00:24:10,400 REPORTINGS MAKING USE OF A RNS 659 00:24:10,400 --> 00:24:12,480 NEUROPACE RNS IMPLANTED DEVICE 660 00:24:12,480 --> 00:24:14,920 IN A PARTICIPANT FOR EPILEPSY. 661 00:24:14,920 --> 00:24:17,080 IN COLUMN TWO RESEARCHERS MAY 662 00:24:17,080 --> 00:24:20,840 RECORD THROUGH THE MODIFICATION 663 00:24:20,840 --> 00:24:22,360 OF CLINICALLY INDICATED IMPLANT 664 00:24:22,360 --> 00:24:24,920 FOR RESEARCH PURPOSES. THROUGH 665 00:24:24,920 --> 00:24:25,520 MODIFIED WIRES TO DETECT 666 00:24:25,520 --> 00:24:27,640 INDIVIDUAL NEURONS FIRING DURING 667 00:24:27,640 --> 00:24:29,720 A PATIENT STAY IN THE EPILEPSY 668 00:24:29,720 --> 00:24:32,880 MONITORING UNIT. IN THREE 669 00:24:32,880 --> 00:24:34,080 RESEARCHERS MAY RECORD THROUGH 670 00:24:34,080 --> 00:24:37,040 EXTRA TEMPORARY IMPLANTS SO THIS 671 00:24:37,040 --> 00:24:42,320 FOR EXAMPLE MIGHT PLACE A 672 00:24:42,320 --> 00:24:44,520 TEMPORARY ECOG STRIP DURING THE 673 00:24:44,520 --> 00:24:45,960 DBS SURGERY TO RECORD ADDITIONAL 674 00:24:45,960 --> 00:24:50,480 TASKS. AND IN THE FOURTH COLUMN 675 00:24:50,480 --> 00:24:52,240 RESEARCH CONDUCTED AS PART OF 676 00:24:52,240 --> 00:24:53,760 INVESTIGATIONAL DEVICE TRIAL SO 677 00:24:53,760 --> 00:24:55,840 HERE WE SEE A PICTURE OF UTAH 678 00:24:55,840 --> 00:24:57,800 ARRAY, IMPLANTED FOR THE USE OF 679 00:24:57,800 --> 00:25:00,240 BCI RESEARCH BUT MAY ALSO BE 680 00:25:00,240 --> 00:25:03,520 USED FOR BASIC SCIENCE RESEARCH. 681 00:25:03,520 --> 00:25:07,000 SO IN THIS SLIDE WE SEE EXAMPLES 682 00:25:07,000 --> 00:25:09,000 OF PARTICIPANTS WHO MAKE THESE 683 00:25:09,000 --> 00:25:10,120 POSSIBLE AND WHAT IT LOOKS LIKE 684 00:25:10,120 --> 00:25:11,040 REALLY TO BE A PARTICIPANT IN 685 00:25:11,040 --> 00:25:13,440 ONE OF THESE STUDIES AND TO 686 00:25:13,440 --> 00:25:16,320 OFFER THESE OPPORTUNITIES TO 687 00:25:16,320 --> 00:25:17,440 INVESTIGATORS. SO IN SLIDE ONE 688 00:25:17,440 --> 00:25:19,360 WE HAVE A PARTICIPANT WEARING A 689 00:25:19,360 --> 00:25:20,720 MOBILE BRAIN MONITORING DEVICE 690 00:25:20,720 --> 00:25:22,720 THAT WORKS IN CONJUNCTION WITH 691 00:25:22,720 --> 00:25:24,720 AN RNS SYSTEM, THIS PARTICIPANT 692 00:25:24,720 --> 00:25:26,240 COMES TO THE LAB TO PARTICIPATE 693 00:25:26,240 --> 00:25:28,320 IN BASIC SCIENCE RESEARCH ABOUT 694 00:25:28,320 --> 00:25:30,400 MEMORY. IN COLUMN TWO WE HAVE A 695 00:25:30,400 --> 00:25:32,760 PARTICIPANT IN THE ENU 696 00:25:32,760 --> 00:25:34,760 PARTICIPATING IN BASIC RESEARCH 697 00:25:34,760 --> 00:25:35,960 ABOUT VISION AND EMOTION. IN 698 00:25:35,960 --> 00:25:37,720 COLUMN THREE WE HAVE A PATIENT 699 00:25:37,720 --> 00:25:39,520 PERFORMING COGNITIVE TEST, USING 700 00:25:39,520 --> 00:25:41,600 A JOY STICK DURING DEEP BRAIN 701 00:25:41,600 --> 00:25:44,600 STIMULATION SURGERY. FOR BASIC 702 00:25:44,600 --> 00:25:45,840 SCIENCE RESEARCH AND IN COLUMN 703 00:25:45,840 --> 00:25:47,520 FOUR WE HAVE A PATIENT IN A BCI 704 00:25:47,520 --> 00:25:50,920 STUDY WHO IS PLAYING THE PIANO 705 00:25:50,920 --> 00:25:53,440 VIRTUAL PIANO USING NEURAL BRAIN 706 00:25:53,440 --> 00:25:54,760 CONTROL BASED ON SCIENCE 707 00:25:54,760 --> 00:25:56,520 PRINCIPLES DERIVED FROM ONGOING 708 00:25:56,520 --> 00:26:00,120 UCI RESEARCH. SO WHILE THESE 709 00:26:00,120 --> 00:26:01,920 STUDIES ARE IMPORTANTLY 710 00:26:01,920 --> 00:26:04,960 DIFFERENT AND I APPRECIATE DR. 711 00:26:04,960 --> 00:26:06,320 BRIDIE'S POINT TRYING TO GRAPPLE 712 00:26:06,320 --> 00:26:09,800 WITH THAT DISCUSSION, APOLOGIZES 713 00:26:09,800 --> 00:26:12,000 FOR MY SLIDES. THEY HAVE SOME 714 00:26:12,000 --> 00:26:13,960 FEATURES IN COMMON. SO THEY ARE 715 00:26:13,960 --> 00:26:15,320 ALL UNITED IN THE FOLLOWING 716 00:26:15,320 --> 00:26:17,280 THREE WAYS. THEY SHARE THE GOAL 717 00:26:17,280 --> 00:26:18,320 OF UNDERSTANDING BASIC SCIENCE 718 00:26:18,320 --> 00:26:20,920 QUESTIONS ABOUT THE HUMAN BRAIN. 719 00:26:20,920 --> 00:26:22,800 THERE IS THE ABSENCE OF NEAR 720 00:26:22,800 --> 00:26:25,080 TERM THERAPEUTIC BENEFIT FROM 721 00:26:25,080 --> 00:26:26,240 PARTICIPANTS AND THEY MAKE USE 722 00:26:26,240 --> 00:26:27,800 OF INTRACRANIAL RECORDINGS AND 723 00:26:27,800 --> 00:26:29,360 STIMULATIONS IN HUMAN SUBJECTS 724 00:26:29,360 --> 00:26:30,920 WHO EITHER HAVE A CLINICAL NEED 725 00:26:30,920 --> 00:26:32,920 FOR NEUROSURGICAL INTERVENTION 726 00:26:32,920 --> 00:26:35,680 OR WHOSE CONDITIONS ALLOW THEM 727 00:26:35,680 --> 00:26:38,520 TO UNDERGO FOR THE SAKE OF 728 00:26:38,520 --> 00:26:40,960 STUDY. THERE ARE WELL KNOWN 729 00:26:40,960 --> 00:26:42,360 ETHICAL CHALLENGES FOR ALL THIS 730 00:26:42,360 --> 00:26:43,920 TYPE OF RESEARCH AND THIS IS 731 00:26:43,920 --> 00:26:45,760 NOTED IN THE LITERATURE AND MANY 732 00:26:45,760 --> 00:26:47,560 PEOPLE WHO ARE HERE TODAY MADE 733 00:26:47,560 --> 00:26:48,200 INCREDIBLE CONTRIBUTIONS TO 734 00:26:48,200 --> 00:26:50,800 THIS. THESE ARE SOME OF THE 735 00:26:50,800 --> 00:26:51,920 CONSIDERATIONS THAT FROM 736 00:26:51,920 --> 00:26:53,680 INVESTIGATORS PERSPECTIVES STAND 737 00:26:53,680 --> 00:26:55,680 OUT AS INCREDIBLY SALIENT. FOR 738 00:26:55,680 --> 00:26:57,200 ONE, THE UNIQUE CONTEXT OF THIS 739 00:26:57,200 --> 00:26:59,600 RESEARCH. ASIDE FROM THE FACT 740 00:26:59,600 --> 00:27:01,080 THAT PATIENTS HAVE A CLINICAL 741 00:27:01,080 --> 00:27:03,360 NEED FOR BRAIN SURGERY OFTEN, 742 00:27:03,360 --> 00:27:05,920 CLINICAL CARE AND RESEARCH 743 00:27:05,920 --> 00:27:07,520 OVERLAP IN SPACE AND TIME FROM 744 00:27:07,520 --> 00:27:09,240 MANY OF THESE STUDIES AND 745 00:27:09,240 --> 00:27:10,800 PARTICULARLY IN INTEROPERATIVE 746 00:27:10,800 --> 00:27:12,480 STUDIES WHERE IT IS THE SAME 747 00:27:12,480 --> 00:27:13,560 SURGICAL EVENT IN WHICH 748 00:27:13,560 --> 00:27:16,480 PARTICIPANTS ARE DOING TASKS FOR 749 00:27:16,480 --> 00:27:17,680 THERAPEUTIC BENEFIT OR DOING 750 00:27:17,680 --> 00:27:20,120 TASKS FOR RESEARCH. THERE IS A 751 00:27:20,120 --> 00:27:21,680 HIGH PREVALENCE OF DUAL ROLE 752 00:27:21,680 --> 00:27:23,840 CLINICIAN RESEARCHERS. FOR 753 00:27:23,840 --> 00:27:25,720 EXAMPLE, THE SURGEON FOR THE 754 00:27:25,720 --> 00:27:27,400 IMPLANTATION PROCEDURE MAY ALSO 755 00:27:27,400 --> 00:27:28,760 BE AN INVESTIGATOR FOR THE 756 00:27:28,760 --> 00:27:30,600 RESEARCH STUDY AND 757 00:27:30,600 --> 00:27:32,120 INTEROPERATIVE CASES. THERE'S 758 00:27:32,120 --> 00:27:32,920 QUESTIONS AND I HOPE YOU CAN 759 00:27:32,920 --> 00:27:35,680 TALK ABOUT THAT TODAY, ABOUT 760 00:27:35,680 --> 00:27:36,720 PATIENT PARTICIPANT 761 00:27:36,720 --> 00:27:37,840 VULNERABILITIES. NOT JUST 762 00:27:37,840 --> 00:27:40,720 VULNERABILITIES THAT ARISE FROM 763 00:27:40,720 --> 00:27:41,960 THINKING ABOUT THE NEUROLOGICAL 764 00:27:41,960 --> 00:27:43,920 OR PSYCHIATRIC DIAGNOSES OF 765 00:27:43,920 --> 00:27:46,040 THESE PATIENTS BUT ALSO FROM 766 00:27:46,040 --> 00:27:47,360 THINKING THE CONTEXT WHICH 767 00:27:47,360 --> 00:27:48,360 RESEARCH TAKES PLACE, 768 00:27:48,360 --> 00:27:49,160 PARTICULARLY THE SURGICAL 769 00:27:49,160 --> 00:27:52,320 CONTEXT. AS MENTIONED BEFORE, 770 00:27:52,320 --> 00:27:55,440 THIS TYPE OF RESEARCH IS ABLE TO 771 00:27:55,440 --> 00:27:57,920 BE DONE BECAUSE OF A RARE 772 00:27:57,920 --> 00:28:00,280 CLINICAL OPPORTUNITY AND THAT 773 00:28:00,280 --> 00:28:01,160 CREATE TENSION BETWEEN PRESSURE 774 00:28:01,160 --> 00:28:02,960 TO TAKE ADVANTAGE OF THAT 775 00:28:02,960 --> 00:28:04,960 OPPORTUNITY TO APPLY FOR 776 00:28:04,960 --> 00:28:06,080 GRANTSES, THE REWARDS OFFERED 777 00:28:06,080 --> 00:28:08,800 FOR THIS TYPE OF HIGH IMPACT 778 00:28:08,800 --> 00:28:10,160 RESEARCH AND ALSO PROTECTING 779 00:28:10,160 --> 00:28:12,000 PATIENTS WHO ARE IN A VERY 780 00:28:12,000 --> 00:28:14,440 UNIQUE POSITION. AND LASTLY AS 781 00:28:14,440 --> 00:28:15,640 MENTIONED BEFORE BUT REALLY 782 00:28:15,640 --> 00:28:17,840 CRUCIAL IS THE RESEARCH IS 783 00:28:17,840 --> 00:28:18,720 NON-THERAPEUTIC SO IT IS NOT 784 00:28:18,720 --> 00:28:20,080 AIMED PROVIDING BENEFITS BUT 785 00:28:20,080 --> 00:28:22,040 THERE MAYBE A RANGE OF 786 00:28:22,040 --> 00:28:23,040 ADDITIONAL RISKS AND THOSE MAY 787 00:28:23,040 --> 00:28:24,520 VARY DEPENDING ON CONTEXT OF 788 00:28:24,520 --> 00:28:26,200 RESEARCH. SOME OF THOSE RISKS 789 00:28:26,200 --> 00:28:27,920 MIGHT BE HARD TO QUANTIFY. SO 790 00:28:27,920 --> 00:28:30,720 EXTRA TIME IN THE OPERATING 791 00:28:30,720 --> 00:28:32,520 ROOM, EXTRA TIME IN THE 792 00:28:32,520 --> 00:28:34,920 OPERATING ROOM FOR EXAMPLE IS 793 00:28:34,920 --> 00:28:36,000 DIFFICULT TO QUANTIFY, UM 794 00:28:36,000 --> 00:28:38,520 COMPARE THAT WITH THE RISKS OF 795 00:28:38,520 --> 00:28:40,360 BATTERY DRAINAGE IF YOU ARE A -- 796 00:28:40,360 --> 00:28:43,120 YOU HAVE AN RNS SYSTEM AND 797 00:28:43,120 --> 00:28:44,040 PARTICIPATING WITH RESEARCH IN 798 00:28:44,040 --> 00:28:45,920 THE CLINIC. SO CONSIDERING THESE 799 00:28:45,920 --> 00:28:48,240 ETHICAL CONCERNS, INVESTIGATORS 800 00:28:48,240 --> 00:28:49,920 WANTED TO OFFER REFLECT ON THESE 801 00:28:49,920 --> 00:28:53,120 AND OFFER ETHICAL FRAMEWORK TO 802 00:28:53,120 --> 00:28:55,680 TRY TO PROMOTE DISCUSSION AND 803 00:28:55,680 --> 00:28:56,680 BEST PRACTICES IN THIS FIELD. 804 00:28:56,680 --> 00:28:58,240 THIS FRAMEWORK IS OFFERED AS A 805 00:28:58,240 --> 00:29:00,320 STARTING POINT FOR DISCUSSION SO 806 00:29:00,320 --> 00:29:01,560 IT IS REALLY GRATEFUL WE GET A 807 00:29:01,560 --> 00:29:04,720 CHANCE TO TALK ABOUT IT TODAY. 808 00:29:04,720 --> 00:29:06,320 IT IS MEANT FOR CRITICISM AND 809 00:29:06,320 --> 00:29:07,920 REFLECTION AND CONSIDERED 810 00:29:07,920 --> 00:29:08,920 ALONGSIDE OTHER FRAMEWORKS IN 811 00:29:08,920 --> 00:29:09,520 THE VIEWS OF PATIENT 812 00:29:09,520 --> 00:29:11,960 PARTICIPANTS. SO THE FRAMEWORK 813 00:29:11,960 --> 00:29:15,320 CONSISTS OF TWO FUNDAMENTAL 814 00:29:15,320 --> 00:29:16,720 ETHICAL COMMITMENTS AND 815 00:29:16,720 --> 00:29:17,680 ASSOCIATED PRINCIPLES AND 816 00:29:17,680 --> 00:29:19,920 SPECIFIC PRACTICES THAT 817 00:29:19,920 --> 00:29:22,960 INVESTIGATORS HAVE IMPLEMENTED 818 00:29:22,960 --> 00:29:24,080 OR THINK WOULD BE IMPORTANT TO 819 00:29:24,080 --> 00:29:25,120 CONSIDER GOING FORWARD SO HERE 820 00:29:25,120 --> 00:29:28,800 ARE THE TWO BASIC FUNDAMENTAL 821 00:29:28,800 --> 00:29:29,840 COMMITMENTS PROPOSED BY THIS 822 00:29:29,840 --> 00:29:31,720 GROUP OF RESEARCHERS. FIRST, 823 00:29:31,720 --> 00:29:32,680 MAINTAINING INTEGRITY OF 824 00:29:32,680 --> 00:29:36,080 CLINICAL CARE AND SPACE. SO -- 825 00:29:36,080 --> 00:29:37,640 APOLOGIES JOHN WHY IT'S DOING 826 00:29:37,640 --> 00:29:40,440 THAT. PRIORITIZING INTEGRITY OF 827 00:29:40,440 --> 00:29:43,120 CARE, MAINTAINING CARE GUIDED BY 828 00:29:43,120 --> 00:29:44,160 FUNDAMENTAL CLINICAL PRINCIPLES 829 00:29:44,160 --> 00:29:45,800 REQUIRES PRACTICES TO ENSURE 830 00:29:45,800 --> 00:29:48,080 THAT CARE IS NOT COMPROMISED 831 00:29:48,080 --> 00:29:50,480 PURPOSEFULLY OR INADVERTENTLY. 832 00:29:50,480 --> 00:29:51,960 NOTICE THIS PRINCIPLE IS NOT 833 00:29:51,960 --> 00:29:54,560 JUST OR THIS COMMITMENT IS NOT 834 00:29:54,560 --> 00:29:57,000 JUST ABOUT PATIENT COMPREHENSION 835 00:29:57,000 --> 00:29:58,080 OF THE SEPARATION OF CLINICAL 836 00:29:58,080 --> 00:30:00,360 CARE IN RESEARCH. BUT ALSO 837 00:30:00,360 --> 00:30:02,440 PROMOTING RESEARCH DESIGN THAT 838 00:30:02,440 --> 00:30:04,840 HONORS THE SEPARATION. THE 839 00:30:04,840 --> 00:30:07,280 SECOND FUNDAMENTAL COMMITMENT IS 840 00:30:07,280 --> 00:30:08,520 ENSURING VOLUNTARINESS OF 841 00:30:08,520 --> 00:30:09,960 PARTICIPATION AND THE PRINCIPLES 842 00:30:09,960 --> 00:30:13,120 IN THIS SPACE FOCUS ON CONSENT 843 00:30:13,120 --> 00:30:14,920 PRACTICES, WHICH MINIMIZE 844 00:30:14,920 --> 00:30:17,040 INFLUENCE, INFLUENCE OF THE 845 00:30:17,040 --> 00:30:18,240 INVESTIGATOR, BUT OPTIMIZE 846 00:30:18,240 --> 00:30:19,240 PATIENT UNDERSTANDING AND THAT'S 847 00:30:19,240 --> 00:30:21,760 SOMETHING THAT I THINK IS QUITE 848 00:30:21,760 --> 00:30:23,320 AT THE CENTER OF THE ETHICAL 849 00:30:23,320 --> 00:30:24,680 CHALLENGES OF THIS RESEARCH, HOW 850 00:30:24,680 --> 00:30:26,400 TO FIND THAT MIDDLE GROUND. THEY 851 00:30:26,400 --> 00:30:28,280 ALSO FOCUS ON ATTENTION TO THE 852 00:30:28,280 --> 00:30:30,120 NOTION OF CONTINUED CONSENT AND 853 00:30:30,120 --> 00:30:35,200 THE RIGHT TO WITHDRAW. HOW THAT 854 00:30:35,200 --> 00:30:36,160 MIGHT LOOK DIFFERENT DEPENDING 855 00:30:36,160 --> 00:30:37,880 ON TYPE OF STUDY AND THE 856 00:30:37,880 --> 00:30:38,800 IMPORTANCE OF MEANINGFUL 857 00:30:38,800 --> 00:30:42,240 DISCUSSIONS OVER TIME TO DISCUSS 858 00:30:42,240 --> 00:30:43,640 CONCERNS WITH PARTICIPANTS, AS 859 00:30:43,640 --> 00:30:44,920 PATIENT VIEWS ABOUT RESEARCH MAY 860 00:30:44,920 --> 00:30:46,320 CHANGE AS HAY EXPERIENCE WHAT IT 861 00:30:46,320 --> 00:30:50,320 IS LIKE TO BE PART OF STUDY. SO 862 00:30:50,320 --> 00:30:51,600 I WANTED TO SHOW WHAT THE 863 00:30:51,600 --> 00:30:53,320 PAYMENT iFRAMEWORK LOOKS LIKE 864 00:30:53,320 --> 00:30:56,720 IN THE PAPER THERE'S TABLES WITH 865 00:30:56,720 --> 00:30:57,880 EACH COMMITMENT, THE COMMITMENT 866 00:30:57,880 --> 00:30:59,520 ON THE LEFT,ASSOCIATED 867 00:30:59,520 --> 00:31:00,800 PRINCIPLES DOWN CENTER MOTIVATED 868 00:31:00,800 --> 00:31:02,440 BY THE COMMITMENT AND THE OTHER 869 00:31:02,440 --> 00:31:04,200 SIDE SEE EXAMPLES OF CURRENT 870 00:31:04,200 --> 00:31:06,720 PRACTICES THAT INVESTIGATORS USE 871 00:31:06,720 --> 00:31:11,880 TO TRY TO RESPOND TO THESE 872 00:31:11,880 --> 00:31:13,920 COMMITMENTS AND THEIR PRACTICE, 873 00:31:13,920 --> 00:31:16,120 INVESTIGATORS THINK WOULD BE 874 00:31:16,120 --> 00:31:20,520 HIGHLY VALUABLE TO CONSIDER. WE 875 00:31:20,520 --> 00:31:21,800 FOLLOW ACROSS CLINICAL CARE 876 00:31:21,800 --> 00:31:23,320 RESEARCH SHOULD BE UNCOUPLED. 877 00:31:23,320 --> 00:31:25,760 SUCH THAT CARE BE NEITHER 878 00:31:25,760 --> 00:31:26,960 COMPROMISED BY NOR CONDITIONAL 879 00:31:26,960 --> 00:31:29,200 ON RESEARCH PARTICIPATION AND 880 00:31:29,200 --> 00:31:31,240 THIS MUST BE COMMUNICATED TO 881 00:31:31,240 --> 00:31:32,520 PATIENTS, THAT IS AN INTERESTING 882 00:31:32,520 --> 00:31:33,440 THEME THROUGHOUT THE PROPOSAL AS 883 00:31:33,440 --> 00:31:39,080 WELL THE FOCUS ON COMMUNICATION. COMMUNICA TION. 884 00:31:39,080 --> 00:31:42,480 THEN WE HAVE CURRENT PRACTICES, 885 00:31:42,480 --> 00:31:44,120 TIME SPACE AND PERSONNEL AND 886 00:31:44,120 --> 00:31:47,880 SOME PROPOSED PRACTICES SEEK 887 00:31:47,880 --> 00:31:49,760 VERBAL CONFIRMATION AND 888 00:31:49,760 --> 00:31:50,840 UNDERSTANDING OF OPERATION OF 889 00:31:50,840 --> 00:31:51,960 CLINICAL CARE AND RESEARCH BUT 890 00:31:51,960 --> 00:31:53,120 ALSO CONSIDERATION OF 891 00:31:53,120 --> 00:31:55,320 STANDARDIZE VIDEOS HOW WE MAKE 892 00:31:55,320 --> 00:31:57,160 USE OF STANDARDIZE TOOLS TO 893 00:31:57,160 --> 00:31:59,600 PROVIDE CONSISTENT EXTERNAL 894 00:31:59,600 --> 00:32:01,120 VOICE TO DESCRIBE THAT 895 00:32:01,120 --> 00:32:03,560 SEPARATION AND WE MIGHT THINK 896 00:32:03,560 --> 00:32:04,440 HOW THOSE TOOLS ARE IMPLEMENTED 897 00:32:04,440 --> 00:32:07,000 WITH A VARIABLE APPROACH THAT 898 00:32:07,000 --> 00:32:07,880 RESPECTS DIFFERENCES BETWEEN 899 00:32:07,880 --> 00:32:09,080 STUDIES. THIS IS THE SECOND 900 00:32:09,080 --> 00:32:11,600 COMMITMENT AND I CAN COME BACK 901 00:32:11,600 --> 00:32:13,120 TO THIS IF FOLKS WANT TO DISCUSS 902 00:32:13,120 --> 00:32:14,920 IT. THIS IS AN EXAMPLE HOW WE 903 00:32:14,920 --> 00:32:16,720 COULD MOVE FROM COMMITMENT TO 904 00:32:16,720 --> 00:32:20,920 ASSOCIATED PRINCIPLES. FOR 905 00:32:20,920 --> 00:32:24,240 EXAMPLE, NUMBER FIVE INFORM 906 00:32:24,240 --> 00:32:28,960 CONTENT PROCEDURES, POTENTIAL 907 00:32:28,960 --> 00:32:30,200 FOR NEUROLOGICAL INJURY HIGH 908 00:32:30,200 --> 00:32:31,320 RATE OF INVESTIGATORS AND 909 00:32:31,320 --> 00:32:32,880 PATIENT VULNERABILITIES AND YOU 910 00:32:32,880 --> 00:32:34,960 WILL SEE AN EXAMPLE OF PRACTICES 911 00:32:34,960 --> 00:32:37,200 ON THE SIDE AND NOTABLY AGAIN 912 00:32:37,200 --> 00:32:38,840 SUGGESTION FOR THINKING ABOUT 913 00:32:38,840 --> 00:32:40,480 STANDARDIZE VIDEOS WITH 914 00:32:40,480 --> 00:32:42,040 EXPERSONAL PERSPECTIVES OF BASIC 915 00:32:42,040 --> 00:32:44,040 STUDY INFORMATION SO SUPPLEMENT 916 00:32:44,040 --> 00:32:45,600 MORE NUANCE CONVERSATIONS 917 00:32:45,600 --> 00:32:49,880 BETWEEN PATIENTS AND MEMBERS OF 918 00:32:49,880 --> 00:32:51,960 THE TEAM. I'LL SKIP IN INTEREST 919 00:32:51,960 --> 00:32:53,320 OF TIME BUT EXAMPLE HOW YOU 920 00:32:53,320 --> 00:32:54,920 MIGHT FORMALLY WALK THROUGH THE 921 00:32:54,920 --> 00:32:56,240 DIFFERENT ETHICAL JUSTIFICATIONS 922 00:32:56,240 --> 00:32:57,920 FOR PRACTICES AND REFLECT AND 923 00:32:57,920 --> 00:33:02,520 REFINE THEM. SO I THINK THERE IS 924 00:33:02,520 --> 00:33:04,520 A FEW NOTABLE FEATURES OF THIS 925 00:33:04,520 --> 00:33:06,240 PROPOSAL. THAT ARE SLIGHTLY 926 00:33:06,240 --> 00:33:07,320 DIFFERENT THAN SOME OF THE PAST 927 00:33:07,320 --> 00:33:09,040 WORK IN THIS PROJECT. HIGHLIGHT 928 00:33:09,040 --> 00:33:11,320 PERHAPS THE VALUE OF BRINGING 929 00:33:11,320 --> 00:33:11,920 INVESTIGATORS INTO THESE 930 00:33:11,920 --> 00:33:13,880 CONVERSATIONS. THE FIRST IS A 931 00:33:13,880 --> 00:33:16,520 BROADER FOCUS ON THE DUIALITY OF 932 00:33:16,520 --> 00:33:18,600 THE RESEARCH CONTEXT ITSELF, 933 00:33:18,600 --> 00:33:22,320 BEYOND FOCUS ON THE DUAL ROLE OF 934 00:33:22,320 --> 00:33:24,160 INVESTIGATOR. SO THINKING ABOUT 935 00:33:24,160 --> 00:33:26,320 REALLY WHAT THE CLINICAL 936 00:33:26,320 --> 00:33:30,800 SURGICAL CONTEXT DOES ETHICALLY 937 00:33:30,800 --> 00:33:31,720 FOR INVESTIGATORS PATIENT AND 938 00:33:31,720 --> 00:33:32,680 OTHER MEMBERS OF THE RESEARCH 939 00:33:32,680 --> 00:33:33,880 TEAM WHICH IS AN INTERESTING 940 00:33:33,880 --> 00:33:37,040 CONSIDERATION. THERE IS A DESIRE 941 00:33:37,040 --> 00:33:38,360 FOR SPECIFIC STANDARDIZE TOOLS 942 00:33:38,360 --> 00:33:40,480 BUT IN THE CONTEXT OF ALLOWING 943 00:33:40,480 --> 00:33:42,600 FOR HETEROGENEITY IN PRACTICE. 944 00:33:42,600 --> 00:33:45,040 THAT IS INTERESTING AS WELL, IT 945 00:33:45,040 --> 00:33:46,560 SUGGESTS AN INTEREST AND MODULAR 946 00:33:46,560 --> 00:33:50,000 APPROACH TO THINGS LIKE CONSENT, 947 00:33:50,000 --> 00:33:52,760 THAT COULD BE CUSTOMIZED 948 00:33:52,760 --> 00:33:55,880 DEPENDING ON NUANCES OF EACH 949 00:33:55,880 --> 00:33:57,080 STUDY. THE STANDARDIZE TOOLS 950 00:33:57,080 --> 00:33:58,160 MIGHT ALSO SUPPORT SMALLER 951 00:33:58,160 --> 00:33:59,600 RESEARCH TEAMS WHICH I THINK IS 952 00:33:59,600 --> 00:34:02,680 QUITE INTERESTING. THERE IS AN 953 00:34:02,680 --> 00:34:04,960 ESSENTIAL ROLE FOR PATIENT 954 00:34:04,960 --> 00:34:05,680 PARTICIPANT INPUT TO DEVELOP 955 00:34:05,680 --> 00:34:07,560 BEST APPROACHES SO WHEN THINKING 956 00:34:07,560 --> 00:34:10,560 ABOUT PRINCIPLES LIKE PATIENTS 957 00:34:10,560 --> 00:34:12,120 HAVE THE RIGHT TO WITHDRAW AT 958 00:34:12,120 --> 00:34:13,720 ANY TIME, THAT MAY LOOK VERY 959 00:34:13,720 --> 00:34:14,680 DIFFERENT IF YOU ARE 960 00:34:14,680 --> 00:34:16,680 PARTICIPATING IN RESEARCH 961 00:34:16,680 --> 00:34:17,680 INTEROPERATIVELY VERSUS BCI 962 00:34:17,680 --> 00:34:20,440 STUDY. SO HOW CAN WE LEARN FROM 963 00:34:20,440 --> 00:34:22,520 PATIENTS WHAT WOULD BE A 964 00:34:22,520 --> 00:34:23,560 MEANINGFUL WAY TO APPROACH THEM 965 00:34:23,560 --> 00:34:25,760 AND MEET THEM WHERE THEY ARE TO 966 00:34:25,760 --> 00:34:26,920 RESPECT THAT ETHICAL PRINCIPLE 967 00:34:26,920 --> 00:34:28,720 AND I THINK THE FRAMEWORK 968 00:34:28,720 --> 00:34:30,960 REFLECTS A DESIRE FOR ETHICAL 969 00:34:30,960 --> 00:34:31,440 COLLABORATION BETWEEN 970 00:34:31,440 --> 00:34:34,160 INVESTIGATORS. SO HOW CAN WE 971 00:34:34,160 --> 00:34:36,520 WORK TOGETHER, HOW CAN THEY WORK 972 00:34:36,520 --> 00:34:38,240 TOGETHER NOT ONLY SHARE DATA, WE 973 00:34:38,240 --> 00:34:40,120 ARE TALKING DATA SHARING PLANS 974 00:34:40,120 --> 00:34:41,160 BUT HOW THEY ALSO WORK TOGETHER 975 00:34:41,160 --> 00:34:43,080 TO SHARE ETHICAL CHALLENGES TO 976 00:34:43,080 --> 00:34:47,520 MOVE THIS FIELD FORWARD. TO 977 00:34:47,520 --> 00:34:48,760 PROPOSE QUESTIONS FOR CONTINUED 978 00:34:48,760 --> 00:34:51,200 WORK THAT I THINK THIS GROUP AND 979 00:34:51,200 --> 00:34:54,320 DISCUSSIONS ARE REALLY STILL 980 00:34:54,320 --> 00:34:55,720 GRAPPLING WITH THE FIRST IS WHAT 981 00:34:55,720 --> 00:34:58,400 ARE THE MOST IMPORTANT ETHICALLY 982 00:34:58,400 --> 00:35:01,920 SALIENT FEATURES OF THESE 983 00:35:01,920 --> 00:35:03,760 STUDIES. HOW DOES TEMPORAL 984 00:35:03,760 --> 00:35:05,320 RELATIONSHIP BETWEEN CLINICAL 985 00:35:05,320 --> 00:35:06,640 INTERVENTION MATTER. WHAT IS THE 986 00:35:06,640 --> 00:35:09,920 FULL IMPACT OF THE DUAL ROLE 987 00:35:09,920 --> 00:35:11,520 RESEARCHER, I THINK HOW CAN WE 988 00:35:11,520 --> 00:35:12,600 CONSIDER WHETHER THERE ARE 989 00:35:12,600 --> 00:35:14,320 POTENTIAL BENEFITS OR VALUE TO 990 00:35:14,320 --> 00:35:15,760 THIS DUAL ROLE AND HOW SHOULD 991 00:35:15,760 --> 00:35:17,960 THAT TRANSLATE INTO PRACTICE. 992 00:35:17,960 --> 00:35:20,160 WHAT WAYS ARE INTEROPERATIVE 993 00:35:20,160 --> 00:35:21,720 STUDIES UNIQUE. SO WHAT DOES 994 00:35:21,720 --> 00:35:24,280 THAT SURGICAL CONTEXT REALLY DO 995 00:35:24,280 --> 00:35:25,800 TO SPECIFIC PRACTICES THAT COULD 996 00:35:25,800 --> 00:35:29,520 BE IMPLEMENTED. THERE'S 997 00:35:29,520 --> 00:35:31,000 PRACTICAL QUESTIONS INCLUDING 998 00:35:31,000 --> 00:35:33,080 HOW SHOULD WE BEST DEVELOP 999 00:35:33,080 --> 00:35:34,080 STANDARDIZED TOOLS, WHAT COULD 1000 00:35:34,080 --> 00:35:36,280 BE THE BENEFITS AND PITFALLS OF 1001 00:35:36,280 --> 00:35:38,360 USING THINGS LIKE THAT THAT. HOW 1002 00:35:38,360 --> 00:35:39,080 SHOULD WE THINK ABOUT THE 1003 00:35:39,080 --> 00:35:40,840 LANGUAGE WE USE TO TALK ABOUT 1004 00:35:40,840 --> 00:35:41,960 BENEFIT ACROSS THE DIFFERENT 1005 00:35:41,960 --> 00:35:44,520 TYPES OF STUDIES TO DEVELOP 1006 00:35:44,520 --> 00:35:46,920 LANGUAGE TO MAKE OPPORTUNITIES 1007 00:35:46,920 --> 00:35:48,200 TO WITHDRAW MEANINGFUL AND 1008 00:35:48,200 --> 00:35:49,960 METHOD LOGICAL QUESTIONS WHICH 1009 00:35:49,960 --> 00:35:51,520 INTERESTS ME QUITE A BIT, 1010 00:35:51,520 --> 00:35:52,600 PARTICULARLY THIS LAST ONE 1011 00:35:52,600 --> 00:35:54,680 SHOULD INVESTIGATORS 1012 00:35:54,680 --> 00:35:56,200 PARTICIPATE, IN DEVELOPING 1013 00:35:56,200 --> 00:35:57,320 ETHICAL GUIDELINES FOR THEIR OWN 1014 00:35:57,320 --> 00:36:00,960 WORK AND IF SO IN WHAT WAYS. I 1015 00:36:00,960 --> 00:36:04,400 WOULD LIKE THE CLOSE WITH JUST A 1016 00:36:04,400 --> 00:36:06,080 QUOTE FROM A PATIENT PARTICIPANT 1017 00:36:06,080 --> 00:36:07,600 BECAUSE THE VALUE OF 1018 00:36:07,600 --> 00:36:09,720 INVESTIGATORS INPUT IS CRUCIAL 1019 00:36:09,720 --> 00:36:11,840 AND THEY ARE ON THE INSIDE 1020 00:36:11,840 --> 00:36:13,640 MAKING MICRO AND MACRO DECISIONS 1021 00:36:13,640 --> 00:36:16,040 IN WAYS FOLK LIKE ME AND 1022 00:36:16,040 --> 00:36:18,120 ETHICISTS ARE NOT. SO THEY DO 1023 00:36:18,120 --> 00:36:20,120 HAVE A CRUCIAL PERSPECTIVE BUT 1024 00:36:20,120 --> 00:36:21,720 THIS HAS TO BE TEMPERED WITH THE 1025 00:36:21,720 --> 00:36:23,520 PATIENT PERSPECTIVE SO I'M HAPPY 1026 00:36:23,520 --> 00:36:25,440 TO TALK ABOUT THAT AS WELL.S 1027 00:36:25,440 --> 00:36:28,120 THAT QUOTE FROM A PARTICIPANT 1028 00:36:28,120 --> 00:36:30,520 WHO JOINED INTEROPERATIVE 1029 00:36:30,520 --> 00:36:33,040 RESEARCH STUDY DURING HIS DBS 1030 00:36:33,040 --> 00:36:34,600 SURGERY. SO THE BASIC THING IS 1031 00:36:34,600 --> 00:36:36,600 IF I DIDN'T TRUST HIM, THEN I 1032 00:36:36,600 --> 00:36:37,720 WOULDN'T HAVE AGREED TO HAVE THE 1033 00:36:37,720 --> 00:36:40,120 SURGERY DONE AT ALL. SO I TRUST 1034 00:36:40,120 --> 00:36:42,320 HIM WITH THAT AND THIS IS A WAY 1035 00:36:42,320 --> 00:36:44,000 THAT CAN HELP ANYBODY I WAS 1036 00:36:44,000 --> 00:36:45,800 GRATEFUL FOR THE PEOPLE THAT DID 1037 00:36:45,800 --> 00:36:47,280 ANYTHING TO HELP SO I COULD HAVE 1038 00:36:47,280 --> 00:36:48,920 THE SURGERY, SOMEBODY HAS TO 1039 00:36:48,920 --> 00:36:50,400 PRACTICE STUFF AND LEARN THINGS. 1040 00:36:50,400 --> 00:36:52,320 SO IT SEEMED LIKE AS LONG AS YOU 1041 00:36:52,320 --> 00:36:53,440 ARE IN THERE, YOU MIGHT AS WITH 1042 00:36:53,440 --> 00:36:54,960 HE WILL GO FOR IT. THANK YOU 1043 00:36:54,960 --> 00:36:56,520 VERY MUCH, I LOOK FORWARD TO 1044 00:36:56,520 --> 00:36:57,680 CONTINUED DISCUSSION IN THE REST 1045 00:36:57,680 --> 00:37:03,720 OF THE PANEL. 1046 00:37:03,720 --> 00:37:05,520 >> WONDERFUL. THANK YOU, ASHLEY, 1047 00:37:05,520 --> 00:37:07,160 VERY MUCH, THAT WAS GREAT. I 1048 00:37:07,160 --> 00:37:08,920 THINK WE HAVE A COUPLE OF 1049 00:37:08,920 --> 00:37:10,120 MINUTES IF PEOPLE HAVE SPECIFIC 1050 00:37:10,120 --> 00:37:12,720 QUESTIONS FOR ASHLEY WE WILL GET 1051 00:37:12,720 --> 00:37:14,920 TO DIALOGUE WITH ASHLEY AGAIN AS 1052 00:37:14,920 --> 00:37:18,320 PART OF THE PANEL. IF THERE ARE 1053 00:37:18,320 --> 00:37:18,960 SPECIFIC QUESTIONS NOW, PLEASE 1054 00:37:18,960 --> 00:37:20,360 RAISE YOUR HAND AND I WILL CALL 1055 00:37:20,360 --> 00:37:25,360 ON YOU. MAYBE I CAN START -- I 1056 00:37:25,360 --> 00:37:27,680 WAS VERY INTRIGUED BY THE IDEA 1057 00:37:27,680 --> 00:37:29,120 OF STANDARDIZE TOOLS OR 1058 00:37:29,120 --> 00:37:31,040 STANDARDIZE VIDEOS BUT I ALSO 1059 00:37:31,040 --> 00:37:32,240 NOTED THAT YOU SAID THEY NEEDED 1060 00:37:32,240 --> 00:37:34,320 TO BE CUSTOMIZED SO I'M 1061 00:37:34,320 --> 00:37:37,840 WONDERING IF YOU CAN TALK ABOUT 1062 00:37:37,840 --> 00:37:39,400 THAT TENSION BETWEEN WHAT THE 1063 00:37:39,400 --> 00:37:42,800 GOAL OF STANDARDIZATION MIGHT BE 1064 00:37:42,800 --> 00:37:44,280 AND HOW YOU WOULD STANDARDIZE 1065 00:37:44,280 --> 00:37:46,680 AND CUSTOMIZE AT THE SAME TIME. 1066 00:37:46,680 --> 00:37:49,720 >> THAT IS A CRUCIAL POINT. I 1067 00:37:49,720 --> 00:37:53,000 DON'T KNOW THE ANSWER. I THINK 1068 00:37:53,000 --> 00:37:54,720 PART OF THE MOTIVATION FOR 1069 00:37:54,720 --> 00:37:58,640 THINKING ABOUT STANDARDIZE TOOLS 1070 00:37:58,640 --> 00:38:00,120 IS IS TO PROVIDE A STARTING 1071 00:38:00,120 --> 00:38:03,920 POINT FOR PEOPLE TO HAVE SOME 1072 00:38:03,920 --> 00:38:09,760 OBJECTIVE AND SHARED TOOLS THAT 1073 00:38:09,760 --> 00:38:11,440 COULD EITHER GET THEM STARTED 1074 00:38:11,440 --> 00:38:13,640 HOW TO APPROACH PATIENTS IN A 1075 00:38:13,640 --> 00:38:17,320 KIND OF CONSISTENT WAY, BUT ALSO 1076 00:38:17,320 --> 00:38:21,440 TO HELP TEAMS WHO MAY NOT HAVE 1077 00:38:21,440 --> 00:38:22,800 THE PERSONNEL OR INFRASTRUCTURE 1078 00:38:22,800 --> 00:38:26,760 TO CREATE THAT SEPARATION. SOME 1079 00:38:26,760 --> 00:38:28,000 GROUPS NOTED THAT WHAT THEY DO 1080 00:38:28,000 --> 00:38:30,200 TO TRY TO REALLY PROMOTE PATIENT 1081 00:38:30,200 --> 00:38:31,800 UNDERSTANDING OF THE SEPARATION 1082 00:38:31,800 --> 00:38:33,680 OF THE CLINICAL AND THE RESEARCH 1083 00:38:33,680 --> 00:38:35,320 IS THE CHANGE LITERALLY THE 1084 00:38:35,320 --> 00:38:36,920 PERSON WHO IS IN THE ROOM WHO IS 1085 00:38:36,920 --> 00:38:39,680 DOING THE CONSENT. IT MAY BE 1086 00:38:39,680 --> 00:38:40,880 THAT SOME THINGS DON'T HAVE 1087 00:38:40,880 --> 00:38:43,080 THOSE RESOURCES TO DO THAT. SO 1088 00:38:43,080 --> 00:38:45,280 HAVING A KIND OF -- I GUESS IT 1089 00:38:45,280 --> 00:38:46,640 DOESN'T HAVE TO BE STANDARDIZE 1090 00:38:46,640 --> 00:38:48,320 TOOL BUT THAT TOOL COULD SERVE 1091 00:38:48,320 --> 00:38:50,120 THAT PURPOSE AS WELL. HERE IS A 1092 00:38:50,120 --> 00:38:51,840 VIDEO WITH AN EXTERNAL VOICE 1093 00:38:51,840 --> 00:38:55,640 THAT SHARES SOME KIND OF COMMON 1094 00:38:55,640 --> 00:38:57,600 ETHICAL PRINCIPLES ACROSS 1095 00:38:57,600 --> 00:38:58,720 STUDIES THAT COULD BE USED TO 1096 00:38:58,720 --> 00:39:00,920 FACILITATE THAT. THAT'S A GOOD 1097 00:39:00,920 --> 00:39:02,120 POINT. DOES THAT ANSWER YOUR 1098 00:39:02,120 --> 00:39:03,040 QUESTION A BIT? 1099 00:39:03,040 --> 00:39:04,760 >> ABSOLUTELY. GREAT. SARA HAS 1100 00:39:04,760 --> 00:39:07,960 HER HAND UP. 1101 00:39:07,960 --> 00:39:10,320 >> HI. THANKS, ASHLEY, THAT WAS 1102 00:39:10,320 --> 00:39:11,840 GREAT. MY QUESTION IS ALSO ABOUT 1103 00:39:11,840 --> 00:39:14,480 VIDEO WHICH I THINK IS REALLY 1104 00:39:14,480 --> 00:39:15,720 INTERESTING IDEA. AND I GUESS 1105 00:39:15,720 --> 00:39:18,160 I'M JUST WONDERING WHAT YOUR 1106 00:39:18,160 --> 00:39:19,440 THINKING WOULD GO OR THE GROUP 1107 00:39:19,440 --> 00:39:21,320 IS THINKING WOULD GO INTO THAT 1108 00:39:21,320 --> 00:39:24,720 SO IS IT MORE FOCUSED ON GETTING 1109 00:39:24,720 --> 00:39:25,720 ACROSS THE DIFFERENCE BETWEEN 1110 00:39:25,720 --> 00:39:27,800 WHAT IS CLINICAL AND WHAT IS 1111 00:39:27,800 --> 00:39:29,920 RESEARCH OR THE RISK OF THE OR 1112 00:39:29,920 --> 00:39:32,440 OR I GUESS WHAT I'M WONDERING 1113 00:39:32,440 --> 00:39:34,200 ABOUT, THIS WILL I'M 1114 00:39:34,200 --> 00:39:35,280 FORESHADOWING WHAT I WILL SAY 1115 00:39:35,280 --> 00:39:37,480 LATER, WILL YOU INCLUDE THINGS 1116 00:39:37,480 --> 00:39:39,520 FROM PREVIOUS PARTICIPANTS ABOUT 1117 00:39:39,520 --> 00:39:42,200 WHAT IT FEELS LIKE TO BE IN THAT 1118 00:39:42,200 --> 00:39:44,040 RESEARCH. BECAUSE I THINK THAT 1119 00:39:44,040 --> 00:39:47,240 IS A THING EVEN THE RESEARCHER 1120 00:39:47,240 --> 00:39:48,480 MAY KNOW FROM THE INSIDE AND IT 1121 00:39:48,480 --> 00:39:50,440 MIGHT BE RELEVANT TO THINKING 1122 00:39:50,440 --> 00:39:53,200 ABOUT PROS AND CONS OF JOINING. 1123 00:39:53,200 --> 00:39:57,720 >> THAT IS A REALLY GOOD POINT. 1124 00:39:57,720 --> 00:39:59,120 THIS CAME UP AS WELL. SOME 1125 00:39:59,120 --> 00:40:02,120 THINGS THAT CAME UP WERE 1126 00:40:02,120 --> 00:40:04,000 OPPORTUNITIES TO NOT JUST MAKE 1127 00:40:04,000 --> 00:40:07,120 CONNECTIONS BETWEEN PATIENTS BUT 1128 00:40:07,120 --> 00:40:10,840 ALSO -- BE CAREFUL HOW I SAY IT, 1129 00:40:10,840 --> 00:40:12,600 EXPOSE PATIENTS OR PARTICIPANTS 1130 00:40:12,600 --> 00:40:14,720 TO THE IDEA THEY ARE PART OF A 1131 00:40:14,720 --> 00:40:17,920 RESEARCH COMMUNITY. SO THERE ARE 1132 00:40:17,920 --> 00:40:18,920 OTHER PARTICIPANTS, WHAT IT IS 1133 00:40:18,920 --> 00:40:21,000 LIKE FOR THEM TO CREATE THAT 1134 00:40:21,000 --> 00:40:22,560 COMMUNITY, NOW THAT COULD BE FOR 1135 00:40:22,560 --> 00:40:25,000 THE BENEFIT OF THE RESEARCHER OR 1136 00:40:25,000 --> 00:40:26,120 COULD BE FOR BENEFIT OF THE 1137 00:40:26,120 --> 00:40:27,600 PATIENTS. BE CAREFUL HOW YOU 1138 00:40:27,600 --> 00:40:31,240 MIGHT DESIGN THAT. BUT THAT IS A 1139 00:40:31,240 --> 00:40:33,600 FANTASTIC POINT. I WONDER HOW 1140 00:40:33,600 --> 00:40:37,120 INVESTIGATORS WOULD FEEL ABOUT 1141 00:40:37,120 --> 00:40:38,320 PROMOTING PARTICULAR PATIENT 1142 00:40:38,320 --> 00:40:39,280 PERSPECTIVES. I THINK THERE 1143 00:40:39,280 --> 00:40:40,640 MIGHT BE A LITTLE BIT OF A 1144 00:40:40,640 --> 00:40:42,640 CONCERN ABOUT TOKENISM OR MAKING 1145 00:40:42,640 --> 00:40:44,920 SURE IT IS REPRESENTATIVE OR HOW 1146 00:40:44,920 --> 00:40:46,720 TO NOT SWAY. SO I THINK THE 1147 00:40:46,720 --> 00:40:48,360 INITIAL MOTIVATION WAS SOMETHING 1148 00:40:48,360 --> 00:40:51,000 LIKE OBJECTIVITY OR SOMETHING 1149 00:40:51,000 --> 00:40:54,320 LIKE, GET THE KIND OF PARTICULAR 1150 00:40:54,320 --> 00:40:55,520 RESEARCHER OR SURGEON SOME 1151 00:40:55,520 --> 00:40:58,120 DISTANCE SO THE PATIENT HAS TIME 1152 00:40:58,120 --> 00:41:00,560 TO CONSIDER PARTICIPATION IN 1153 00:41:00,560 --> 00:41:02,080 EXTRACTION FROM THOSE INTIMATE 1154 00:41:02,080 --> 00:41:03,240 RELATIONSHIPS THAT THEY MAY OR 1155 00:41:03,240 --> 00:41:05,640 MAY NOT HAVE OR THEY WILL GET AS 1156 00:41:05,640 --> 00:41:06,960 THEY GO THROUGH HAVING A 1157 00:41:06,960 --> 00:41:12,240 SURGICAL INTERVENTION. HTHAT IS A 1158 00:41:12,240 --> 00:41:15,640 FANTASTIC POINT POINT. I'M NOT SURE. I 1159 00:41:15,640 --> 00:41:17,280 THINK IT WAS MORE STANDARDIZED 1160 00:41:17,280 --> 00:41:18,520 WAY TO GIVE PATIENTS INFORMATION 1161 00:41:18,520 --> 00:41:19,720 THAT COULD DISTANCE FROM THE 1162 00:41:19,720 --> 00:41:22,520 POTENTIAL INFLUENCE. BUT THAT IS 1163 00:41:22,520 --> 00:41:23,360 INCLUDING PARTICIPANT VOICES IS 1164 00:41:23,360 --> 00:41:25,720 A REALLY IMPORTANT POINT. I 1165 00:41:25,720 --> 00:41:27,480 THINK WE SHOULD THINK ABOUT HOW 1166 00:41:27,480 --> 00:41:30,280 BEST TO DO THAT, ESPECIALLY WHAT 1167 00:41:30,280 --> 00:41:31,920 PARTICIPANT STORIES GET IN AND 1168 00:41:31,920 --> 00:41:33,120 WHAT PARTICIPANTS STORIES GET 1169 00:41:33,120 --> 00:41:34,440 OUT AND ARE WE GOING TO SHARE 1170 00:41:34,440 --> 00:41:36,280 THE STORIES OF THE FOLKS WHO HAD 1171 00:41:36,280 --> 00:41:38,280 NOT SO GREAT EXPERIENCES AND HOW 1172 00:41:38,280 --> 00:41:41,120 MIGHT WE DISCUSS THAT. IT WAS A 1173 00:41:41,120 --> 00:41:41,560 GREAT POINT. 1174 00:41:41,560 --> 00:41:43,480 >> THAT IS A GREAT POINT TO 1175 00:41:43,480 --> 00:41:45,320 DISCUSS WITH THE PANEL BECAUSE 1176 00:41:45,320 --> 00:41:46,960 WE HAVE THE VALUE OF A 1177 00:41:46,960 --> 00:41:49,480 PARTICIPANT WITH US TO GIVE US 1178 00:41:49,480 --> 00:41:51,840 HIS OPINION. SO I SEE TWO MORE 1179 00:41:51,840 --> 00:41:53,320 HANDS UP WHICH I HOPE ARE 1180 00:41:53,320 --> 00:41:55,400 RELATIVELY SHORT QUESTIONS SO WE 1181 00:41:55,400 --> 00:41:59,520 DON'T TAKE UP TOO MUCH OF SARA'S 1182 00:41:59,520 --> 00:42:03,240 TIME. BRUCE ROSEN, DO YOU HAVE A 1183 00:42:03,240 --> 00:42:03,520 QUESTION? 1184 00:42:03,520 --> 00:42:06,280 >> VERY QUICKLY. IT DOES SEEM 1185 00:42:06,280 --> 00:42:07,480 ESPECIALLY SURGEON HAS THIS 1186 00:42:07,480 --> 00:42:08,800 POSITION OF TRUST, IT WAS THAT 1187 00:42:08,800 --> 00:42:09,800 LAST QUOTE FROM THE PARTICIPANT 1188 00:42:09,800 --> 00:42:13,880 THAT REALLY INSPIRED IT. YET 1189 00:42:13,880 --> 00:42:16,160 THAT TRUST IS NOT ALWAYS FREELY 1190 00:42:16,160 --> 00:42:18,280 GIVEN IN THE SENSE THAT A 1191 00:42:18,280 --> 00:42:21,720 PATIENT GOING IN FOR A 1192 00:42:21,720 --> 00:42:24,240 PROCEDURE, A LIFE THREATENING 1193 00:42:24,240 --> 00:42:26,680 SITUATION HAS A STRONG 1194 00:42:26,680 --> 00:42:28,120 PSYCHOLOGICAL NEED TO DEVELOP 1195 00:42:28,120 --> 00:42:30,680 THAT TRUST EVEN IF IT IS -- 1196 00:42:30,680 --> 00:42:32,360 THERE WERE OTHER UNDER OTHER 1197 00:42:32,360 --> 00:42:33,960 CIRCUMSTANCES NECESSARILY HAVE 1198 00:42:33,960 --> 00:42:36,160 IT. SO WHAT ARE THE 1199 00:42:36,160 --> 00:42:37,360 CONSIDERATIONS ON THE FACT THAT 1200 00:42:37,360 --> 00:42:38,800 THIS NOTION OF TRUST THAT 1201 00:42:38,800 --> 00:42:42,120 PATIENTS MAY EXTEND TO THEIR 1202 00:42:42,120 --> 00:42:43,480 PHYSICIANS UNIQUE WORLD THAT 1203 00:42:43,480 --> 00:42:46,000 PHYSICIAN RESEARCHER MIGHT HAVE, 1204 00:42:46,000 --> 00:42:48,520 MIGHT ITSELF NOT NECESSARILY BE 1205 00:42:48,520 --> 00:42:49,960 THIS KIND OF OPENLY GIVEN SENSE 1206 00:42:49,960 --> 00:42:52,480 OF TRUST THAT WE MIGHT IMAGINE 1207 00:42:52,480 --> 00:42:54,320 UNDER OTHER CIRCUMSTANCES. 1208 00:42:54,320 --> 00:42:56,520 >> THAT IS A GREAT QUESTION AS 1209 00:42:56,520 --> 00:42:58,800 WELL. I THINK IT POINTS TO A 1210 00:42:58,800 --> 00:42:59,640 REALLY IMPORTANT DIFFERENCE 1211 00:42:59,640 --> 00:43:01,120 BETWEEN INTEROPERATIVE STUDIES 1212 00:43:01,120 --> 00:43:03,440 AN THESE LONGER TERM HIGHLY 1213 00:43:03,440 --> 00:43:04,640 INTERACTIVE STUDIES WHERE EVEN 1214 00:43:04,640 --> 00:43:06,520 FOR KIND OF THE RNS STUDIES, 1215 00:43:06,520 --> 00:43:08,120 THERE IS MULTIPLE OPPORTUNITIES 1216 00:43:08,120 --> 00:43:09,280 TO DEVELOP THAT RELATIONSHIP 1217 00:43:09,280 --> 00:43:11,000 WITH THE INVESTIGATOR OVER TIME 1218 00:43:11,000 --> 00:43:13,440 AND TO HAVE SPACE AND TIME FOR 1219 00:43:13,440 --> 00:43:14,920 THESE CONVERSATIONS, WHERE YOU 1220 00:43:14,920 --> 00:43:16,120 THINK THERE'S AT LEAST THE 1221 00:43:16,120 --> 00:43:18,520 OPPORTUNITY FOR THAT TRUST TO BE 1222 00:43:18,520 --> 00:43:21,320 KIND OF DEVELOPED AND ETHICALLY 1223 00:43:21,320 --> 00:43:22,520 APPROPRIATE WAYS. FOR SOME OF 1224 00:43:22,520 --> 00:43:24,880 THESE OTHER STUDIES ESPECIALLY 1225 00:43:24,880 --> 00:43:26,440 INTEROPERATIVE STUDIES I 1226 00:43:26,440 --> 00:43:28,520 REMEMBER ONE PATIENT WE 1227 00:43:28,520 --> 00:43:30,600 INTERVIEWED, MET THE SURGEON AND 1228 00:43:30,600 --> 00:43:31,600 INVESTIGATOR ONE TIME BEFORE 1229 00:43:31,600 --> 00:43:32,720 THEY HAD THEIR SURGERY AND 1230 00:43:32,720 --> 00:43:35,640 PARTICIPATED IN THE RESEARCH. SO 1231 00:43:35,640 --> 00:43:38,160 HOW DO WE THINK ABOUT PRACTICES 1232 00:43:38,160 --> 00:43:39,600 THAT CAN MAKE SURE THAT THAT 1233 00:43:39,600 --> 00:43:41,720 TRUST IS DEVELOPED IN MORALLY 1234 00:43:41,720 --> 00:43:44,320 GOOD WAYS. I THINK YOU ARE 1235 00:43:44,320 --> 00:43:45,840 RIGHT, WHAT CHOICE DO YOU HAVE, 1236 00:43:45,840 --> 00:43:47,240 IF YOU HAVE TO PARTICIPATE IN 1237 00:43:47,240 --> 00:43:50,720 THE SURGERY, YOU NEED IT FOR 1238 00:43:50,720 --> 00:43:53,520 YOUR HEALTH THAT TRUST GETS 1239 00:43:53,520 --> 00:43:56,800 TROJAN HORSED IN A LITTLE BIT, 1240 00:43:56,800 --> 00:43:57,920 YOU ALMOST DON'T HAVE A CHOICE 1241 00:43:57,920 --> 00:44:00,120 AND IN A WAY GET TROJAN HORSE 1242 00:44:00,120 --> 00:44:01,440 INTO THE RESEARCH AS WELL AND 1243 00:44:01,440 --> 00:44:03,560 TRUSTING THAT INVESTIGATOR IN 1244 00:44:03,560 --> 00:44:06,640 THAT SENSE. I THINK THE FRAME 1245 00:44:06,640 --> 00:44:09,760 WORKS FOCUS ON REALLY WANTING TO 1246 00:44:09,760 --> 00:44:11,640 UNDERSTAND THE FULL ROLE THAT 1247 00:44:11,640 --> 00:44:14,000 DUAL ROLE, FULL RELATIONSHIP 1248 00:44:14,000 --> 00:44:16,080 COMPONENT IS A PLACE FOR CRUCIAL 1249 00:44:16,080 --> 00:44:18,120 FURTHER WORK SO THINKING ABOUT 1250 00:44:18,120 --> 00:44:19,880 WHAT IT IS LIKE TO BE IN THAT 1251 00:44:19,880 --> 00:44:21,720 RELATIONSHIP WITH SOMEONE AND 1252 00:44:21,720 --> 00:44:24,000 HOW CAN WE DEVELOP ATTITUDES AND 1253 00:44:24,000 --> 00:44:26,640 BEST PRACTICES AND IN SOME BAYS 1254 00:44:26,640 --> 00:44:28,160 VIRTUE RESEARCHERS THEMSELVES TO 1255 00:44:28,160 --> 00:44:29,920 TAKE CARE OF THAT TRUST. I DON'T 1256 00:44:29,920 --> 00:44:30,920 KNOW IF THAT ANSWERS YOUR 1257 00:44:30,920 --> 00:44:31,400 QUESTION. 1258 00:44:31,400 --> 00:44:33,240 >> VERY THOUGHTFUL. THANK YOU. 1259 00:44:33,240 --> 00:44:35,240 >> GREAT. ANOTHER GREAT TOPIC 1260 00:44:35,240 --> 00:44:39,000 FOR THE PANEL. JIM. 1261 00:44:39,000 --> 00:44:41,440 >> THANK YOU. REALLY 1262 00:44:41,440 --> 00:44:44,920 INFORMATIVE. I HAD TO STEP AWAY 1263 00:44:44,920 --> 00:44:46,040 FOR A MOMENT, YOU MAY HAVE 1264 00:44:46,040 --> 00:44:47,120 MENTIONED THIS BUT I LIKE THE 1265 00:44:47,120 --> 00:44:48,480 EMPHASIS ON COMMUNICATION 1266 00:44:48,480 --> 00:44:51,360 BETWEEN PATIENT RESEARCHERS AND 1267 00:44:51,360 --> 00:44:53,120 SURGEON AND EVERYONE WHO HAVED. 1268 00:44:53,120 --> 00:44:55,120 BUT WHAT ABOUT DISCUSSION OF 1269 00:44:55,120 --> 00:44:58,720 RESULTS OF BASIC RESEARCH IN 1270 00:44:58,720 --> 00:45:00,120 FUNDAMENTAL RESEARCH? I DIDN'T 1271 00:45:00,120 --> 00:45:01,040 SEE NOTES ABOUT THAT, DO YOU 1272 00:45:01,040 --> 00:45:05,120 THINK THAT WILL IMPACT PATIENT 1273 00:45:05,120 --> 00:45:07,720 PARTICIPANT ENTHUSIASM FOR 1274 00:45:07,720 --> 00:45:10,160 POTENTIAL ADDITIONAL STUDIES OR 1275 00:45:10,160 --> 00:45:12,120 ADDITIONAL INVOLVEMENT OR JUST 1276 00:45:12,120 --> 00:45:13,560 THEIR OWN INVOLVEMENT WHETHER OR 1277 00:45:13,560 --> 00:45:14,800 NOT THEY FEEL SATISFACTION. IS 1278 00:45:14,800 --> 00:45:17,440 THERE A WAY OF EXPLAINING 1279 00:45:17,440 --> 00:45:18,120 FUNDAMENTAL RESEARCH THAT YOU 1280 00:45:18,120 --> 00:45:19,840 GUYS HAVE BEEN TALKING ABOUT? OR 1281 00:45:19,840 --> 00:45:21,040 THINKING ABOUT? 1282 00:45:21,040 --> 00:45:23,360 >> YEAH. THAT IS ALSO A 1283 00:45:23,360 --> 00:45:26,680 FANTASTIC QUESTION. SO I THINK 1284 00:45:26,680 --> 00:45:27,320 IN SOME OF THE INTERVIEWS WE 1285 00:45:27,320 --> 00:45:28,920 HAVE DONE WITH PATIENT 1286 00:45:28,920 --> 00:45:31,120 PARTICIPANTS, THERE IS EVEN IN 1287 00:45:31,120 --> 00:45:32,200 INTEROPERATIVE STUDIES WHERE IT 1288 00:45:32,200 --> 00:45:34,160 IS IN SOME WAYS ONE AND DONE YOU 1289 00:45:34,160 --> 00:45:35,920 ARE DOING IT, DURING THE 1290 00:45:35,920 --> 00:45:37,360 RESEARCH, THAT IS IT. THAT IS 1291 00:45:37,360 --> 00:45:39,160 YOUR PARTICIPATION. WILL IS A 1292 00:45:39,160 --> 00:45:40,800 DESIRE EVEN IN STUDIES TO KNOW 1293 00:45:40,800 --> 00:45:42,520 WHAT HAS BEEN THE OUTPUT OF THE 1294 00:45:42,520 --> 00:45:44,360 OUTCOME OF THIS RESEARCH. SO 1295 00:45:44,360 --> 00:45:46,360 MANY PARTICIPANTS DON'T MAKE THE 1296 00:45:46,360 --> 00:45:48,680 DECISION TO JOIN LIGHTLY. THEY 1297 00:45:48,680 --> 00:45:51,960 VALUE WHAT THEY ARE DOING. HOW 1298 00:45:51,960 --> 00:45:53,880 CAN WE KIND OF NUMBER ONE KEEP 1299 00:45:53,880 --> 00:45:55,960 THEM ENGAGED AND LET THEM KNOW 1300 00:45:55,960 --> 00:45:59,080 THE RESULTSES OF THEIR OWN 1301 00:45:59,080 --> 00:46:00,960 PARTICIPATION BUT ALSO HOW WE 1302 00:46:00,960 --> 00:46:02,320 CAN TALK WITH THEM THE RESULTS 1303 00:46:02,320 --> 00:46:03,880 OF PARTICIPATION IN OTHER BASIC 1304 00:46:03,880 --> 00:46:06,520 RESEARCH AND HOW IS THAT 1305 00:46:06,520 --> 00:46:08,480 TRANSLATED OR NOT INTO 1306 00:46:08,480 --> 00:46:09,280 THERAPEUTIC OPPORTUNITIES IN THE 1307 00:46:09,280 --> 00:46:11,160 FUTURE. SO I THINK THAT IS 1308 00:46:11,160 --> 00:46:12,600 SOMETHING THAT IS NOT THE FOCUS 1309 00:46:12,600 --> 00:46:14,120 OF THIS PAPER BUT IT IS 1310 00:46:14,120 --> 00:46:14,840 SOMETHING WE HAVE BEEN THINKING 1311 00:46:14,840 --> 00:46:16,520 ABOUT A LOT, THINKING CONSENT, 1312 00:46:16,520 --> 00:46:18,160 WE TALK ABOUT RISK AND WE WANT 1313 00:46:18,160 --> 00:46:19,520 TO MAKE SURE PATIENTS UNDERSTAND 1314 00:46:19,520 --> 00:46:23,120 THE RISKS. BUT WE DON'T TALK 1315 00:46:23,120 --> 00:46:25,120 PERHAPS IN AS GREAT DETAIL AND 1316 00:46:25,120 --> 00:46:26,720 NUANCE ABOUT BENEFIT AND THE 1317 00:46:26,720 --> 00:46:28,200 TRANSLATIONAL LIKELIHOOD OF 1318 00:46:28,200 --> 00:46:30,000 THEIR PARTICIPATION TOWARDS A 1319 00:46:30,000 --> 00:46:31,800 CLINICAL BENEFIT THEY MAY BE 1320 00:46:31,800 --> 00:46:34,040 PART OF THE MOTIVATION FOR THEM 1321 00:46:34,040 --> 00:46:35,880 JOINING. I THINK THAT IS ANOTHER 1322 00:46:35,880 --> 00:46:37,440 AREA FOR REALLY IMPORTANT WORK. 1323 00:46:37,440 --> 00:46:39,920 WHAT ARE THE WAYS IN WHICH WE 1324 00:46:39,920 --> 00:46:41,840 SHOULD APPROACH PATIENTS TALKING 1325 00:46:41,840 --> 00:46:43,280 ABOUT THAT. THAT MIGHT BE A 1326 00:46:43,280 --> 00:46:45,000 GREAT OPPORTUNITY TO INCLUDE IN 1327 00:46:45,000 --> 00:46:48,120 VIDEOS AS WELL, EXAMPLES OF 1328 00:46:48,120 --> 00:46:50,880 TRANSLATIONAL PATH WHICH MAY BE 1329 00:46:50,880 --> 00:46:53,120 LONGER AND MORE NEBULOUS THAN 1330 00:46:53,120 --> 00:46:53,920 PATIENTS THINK WHEN THEY 1331 00:46:53,920 --> 00:46:55,120 PARTICIPATE IN STUDIES SO WHAT 1332 00:46:55,120 --> 00:46:57,000 IS OUR RESPONSIBILITY TO DO 1333 00:46:57,000 --> 00:46:59,160 THAT. AGAIN I DON'T KNOW IF THAT 1334 00:46:59,160 --> 00:47:00,840 ANSWERED YOUR QUESTION, JUST 1335 00:47:00,840 --> 00:47:02,240 SOME REFLECTIONS BACK, THAT IS A 1336 00:47:02,240 --> 00:47:04,000 REALLY FANTASTIC POINT. 1337 00:47:04,000 --> 00:47:05,080 >> THANK YOU, ASHLEY. 1338 00:47:05,080 --> 00:47:07,040 >> THANK YOU SO MUCH, ASHLEY. WE 1339 00:47:07,040 --> 00:47:08,680 LOOK FORWARD TO HAVING MORE 1340 00:47:08,680 --> 00:47:11,440 CONVERSATION WITH YOU IN A 1341 00:47:11,440 --> 00:47:12,880 MINUTE AFTER SARA IS DONE, OUR 1342 00:47:12,880 --> 00:47:17,360 SECOND SPEAKER IS DR. SARA 1343 00:47:17,360 --> 00:47:19,920 GOERING, PROFESSOR PHILOSOPHY 1344 00:47:19,920 --> 00:47:21,360 CORE PROGRAM ON ETHICS AND 1345 00:47:21,360 --> 00:47:22,240 DISABILITIES PROGRAM AT THE 1346 00:47:22,240 --> 00:47:24,200 UNIVERSITY OF WASHINGTON, WITH 1347 00:47:24,200 --> 00:47:25,520 SUPPORT FROM BRAIN FOR 1348 00:47:25,520 --> 00:47:27,880 NEUROETHICS RO1 FOR RESEARCH 1349 00:47:27,880 --> 00:47:32,240 EXPLORES AGENCY IN AGENCY WITH 1350 00:47:32,240 --> 00:47:34,200 NEURAL PROSTHETICS AND HOW IT 1351 00:47:34,200 --> 00:47:35,880 CAN IMPROVE INFORM CONSENT 1352 00:47:35,880 --> 00:47:37,240 PRACTICES. SHE RECEIVED HER 1353 00:47:37,240 --> 00:47:38,920 Ph.D. IF IN PHILOSOPHY 1354 00:47:38,920 --> 00:47:40,120 UNIVERSITY OF COLORADO BOULDER 1355 00:47:40,120 --> 00:47:41,760 AND TODAY SHE WILL TALK TO US 1356 00:47:41,760 --> 00:47:43,520 ABOUT ETHICAL CONSIDERATIONS FOR 1357 00:47:43,520 --> 00:47:45,880 BRAIN RESEARCH PARTICIPATION IN 1358 00:47:45,880 --> 00:47:47,720 LONG TERM HIGHLY INTERACTIVE 1359 00:47:47,720 --> 00:47:59,320 STUDIES. THANK YOU, SARA. 1360 00:47:59,320 --> 00:48:00,720 >> SLIDE ARE UP. 1361 00:48:00,720 --> 00:48:02,680 >> I AM JUST LOOKING FORWARD TO 1362 00:48:02,680 --> 00:48:04,760 TALKING TO YOU ABOUT SOME WORK 1363 00:48:04,760 --> 00:48:07,640 THAT WE HAVE DONE IN OUR GROUP 1364 00:48:07,640 --> 00:48:09,320 AROUND -- THESE ARE JUST 1365 00:48:09,320 --> 00:48:11,320 EXAMPLES NOT NECESSARILY OUR 1366 00:48:11,320 --> 00:48:13,800 PEOPLE BUT FOR PARTICIPANTS WHO 1367 00:48:13,800 --> 00:48:15,920 ARE IN LONG TERM HIGHLY 1368 00:48:15,920 --> 00:48:18,320 INTERACTIVE STUDIES OF BCI WHERE 1369 00:48:18,320 --> 00:48:20,840 THEY ARE PRIMARILY AS YOU CAN 1370 00:48:20,840 --> 00:48:23,920 SEE IN PICTURES USING NEURAL 1371 00:48:23,920 --> 00:48:25,680 ACTIVITY TO MOVE ROBOTIC ARM OR 1372 00:48:25,680 --> 00:48:26,520 CURSOR ON THE SCREEN OR THAT 1373 00:48:26,520 --> 00:48:29,920 KIND OF THING. THIS COMES OUT 1374 00:48:29,920 --> 00:48:33,240 OF OUR GRANT I'M CO-PI ON AARON 1375 00:48:33,240 --> 00:48:35,800 KLINE ON BCI AND HUMAN AGENCY, 1376 00:48:35,800 --> 00:48:39,200 AS WE SAID THEN, BCI OPERATE 1377 00:48:39,200 --> 00:48:44,520 DIRECTLY ON THE BRAIN AND IN OR 1378 00:48:44,520 --> 00:48:46,360 BETWEEN THOUGHTS AND ACTIONS AND 1379 00:48:46,360 --> 00:48:47,760 EMOTIONAL FEEDBACK AND BECAUSE 1380 00:48:47,760 --> 00:48:49,720 OF THAT CAN EFFECT HUMAN AGENCY 1381 00:48:49,720 --> 00:48:51,920 OR SENSE OF OURSELVES AS AGENTS. 1382 00:48:51,920 --> 00:48:53,240 IF WE THINK OF AGENCY AS A SENSE 1383 00:48:53,240 --> 00:48:55,000 OF OWNERSHIP OVER THE 1384 00:48:55,000 --> 00:48:55,680 EXPERIENCES AND ACTIONS THAT 1385 00:48:55,680 --> 00:48:57,320 SHAPE OUR IDENTITIES THEN WE 1386 00:48:57,320 --> 00:48:59,480 WANT TO BE ABLE TO SAY IN USING 1387 00:48:59,480 --> 00:49:01,680 THE ROBOTIC ARM OR USING THE BCI 1388 00:49:01,680 --> 00:49:04,440 TO MOVE CURSOR THAT WE CAN 1389 00:49:04,440 --> 00:49:08,520 CONFIDENTLY SAY I DID THAT 1390 00:49:08,520 --> 00:49:09,520 RATHER THAN IT IS SOMETHING THAT 1391 00:49:09,520 --> 00:49:10,920 JUST HAPPENED O SO IN OUR GRANT 1392 00:49:10,920 --> 00:49:13,480 WE DEVELOPED A CONCEPTUAL MAP OF 1393 00:49:13,480 --> 00:49:15,000 AGENCY MORE THOSE ETHICAL 1394 00:49:15,000 --> 00:49:16,320 CONCEPTUAL WORK AND WE PUBLISHED 1395 00:49:16,320 --> 00:49:20,200 A PIECE IN A JOB NEUROSCIENCE 1396 00:49:20,200 --> 00:49:22,480 WITH THIS MAP MAYBE NOT REALLY 1397 00:49:22,480 --> 00:49:24,240 MAP, RIGHT, OUTLINING DIFFERENT 1398 00:49:24,240 --> 00:49:26,040 DIMENSIONS OF AGENCY THAT ARE 1399 00:49:26,040 --> 00:49:28,440 HIGHLY RELEVANT IN THIS 1400 00:49:28,440 --> 00:49:29,840 ENVIRONMENT. SECONDLY WE WANTED 1401 00:49:29,840 --> 00:49:31,400 TO UNDERSTAND THE EXPERIENCES AN 1402 00:49:31,400 --> 00:49:33,720 PERSPECTIVES OF BCI RESEARCH 1403 00:49:33,720 --> 00:49:34,560 PARTICIPANTS ON THEMES RELATED 1404 00:49:34,560 --> 00:49:36,680 TO ETHICS AND AGENCY AND IDEA 1405 00:49:36,680 --> 00:49:40,120 WAS THAT WE WOULD DO IN DEPTH 1406 00:49:40,120 --> 00:49:41,400 PHENOMENOLOGICAL INTERVIEWS 1407 00:49:41,400 --> 00:49:42,440 MULTIPLE TIMES THROUGH THE 1408 00:49:42,440 --> 00:49:44,240 COURSE OF THE STUDY. AND FINALLY 1409 00:49:44,240 --> 00:49:45,840 TO CREATE A TOOL FOR IMPROVING 1410 00:49:45,840 --> 00:49:46,800 INFORMED CONSENT FOR PEOPLE 1411 00:49:46,800 --> 00:49:50,720 COMING INTO THESE STUDIES. SO 1412 00:49:50,720 --> 00:49:52,160 THEY MIGHT KNOW -- MIGHT BE ABLE 1413 00:49:52,160 --> 00:49:53,320 TO THINK ABOUT WHAT THEY WOULD 1414 00:49:53,320 --> 00:49:55,160 WANT TO KNOW IN MAKING THEIR 1415 00:49:55,160 --> 00:49:57,160 PARTICIPATION DECISIONS. SO I'M 1416 00:49:57,160 --> 00:50:00,200 REALLY GOING TO TALK ABOUT AIM 2 1417 00:50:00,200 --> 00:50:04,000 IN THIS SHORT TALK. I AM VERY 1418 00:50:04,000 --> 00:50:07,600 GRATEFUL TO GUPTA A POST DOC IN 1419 00:50:07,600 --> 00:50:10,040 THE GRANT TRAINING IN 1420 00:50:10,040 --> 00:50:10,640 PHENOMENOLOGICAL TRAINING 1421 00:50:10,640 --> 00:50:11,680 METHODS. YOU ARE NOT JUST 1422 00:50:11,680 --> 00:50:14,040 ASKING QUESTIONS TO GET OPINIONS 1423 00:50:14,040 --> 00:50:15,760 ABOUT SOMETHING BUT YOU ARE 1424 00:50:15,760 --> 00:50:20,320 ASKING THE PARTICIPANT TO FULLY 1425 00:50:20,320 --> 00:50:21,760 ARTICULATE OUR EXPERIENCE. IT 1426 00:50:21,760 --> 00:50:23,000 IS SUCH UNUSUAL EXPERIENCE TO 1427 00:50:23,000 --> 00:50:24,120 MOVE A THING THROUGH YOUR 1428 00:50:24,120 --> 00:50:25,920 THINKING OR CONCENTRATION ON 1429 00:50:25,920 --> 00:50:28,800 CERTAIN IMAGERY, THAT NOT 1430 00:50:28,800 --> 00:50:30,240 EVERYBODY DOES IT RIGHT OFF, SO 1431 00:50:30,240 --> 00:50:33,400 IT TAKES TIME, KIND OF CYCLING 1432 00:50:33,400 --> 00:50:35,080 BACK, BUT MORE WHAT THAT FELT 1433 00:50:35,080 --> 00:50:36,880 LIKE AND I WANT TO SHARE SOME OF 1434 00:50:36,880 --> 00:50:37,640 THOSE RESPONSES WITH YOU HERE 1435 00:50:37,640 --> 00:50:41,200 TODAY. SO WE ASKED THINGS LIKE 1436 00:50:41,200 --> 00:50:42,680 WHAT MADE O MOTIVATED YOU TO 1437 00:50:42,680 --> 00:50:44,000 ENROLL IN THE STUDY, WHAT WAS IT 1438 00:50:44,000 --> 00:50:45,680 LIKE TO LEARN TO USE THE DEVICE 1439 00:50:45,680 --> 00:50:47,760 AND NOW THAT YOU HAVE LEARNED, 1440 00:50:47,760 --> 00:50:51,520 HOW DOES IT FEEL TO USE THE 1441 00:50:51,520 --> 00:50:53,640 DEVICE. THE INTERVIEWS TYPICALLY 1442 00:50:53,640 --> 00:50:56,040 LASTED ONE AND A HALF HOURS OR 1443 00:50:56,040 --> 00:50:58,080 SO AND IT IS A SMALL NUMBER, IN 1444 00:50:58,080 --> 00:50:59,400 PART BECAUSE THERE AREN'T VERY 1445 00:50:59,400 --> 00:51:02,080 MANY PEOPLE WHO HAVE THIS 1446 00:51:02,080 --> 00:51:03,640 EXPERIENCE, AND ALSO GLOBAL 1447 00:51:03,640 --> 00:51:05,720 PANDEMIC KIND OF SLOWED DOWN 1448 00:51:05,720 --> 00:51:10,960 RECRUITMENT AND ACTUAL SESSIONS. 1449 00:51:10,960 --> 00:51:12,000 SOME KEY FEATURES I WANT TO TALK 1450 00:51:12,000 --> 00:51:13,280 ABOUT AN OVERVIEW SLIDE OUR 1451 00:51:13,280 --> 00:51:15,520 ORIGINAL FOCUS WAS ABOUT AGENCY, 1452 00:51:15,520 --> 00:51:16,720 WHAT IS IT LIKE TO DO THINGS 1453 00:51:16,720 --> 00:51:19,080 WITH YOUR THOUGHTS IN THE 1454 00:51:19,080 --> 00:51:24,840 LANGUAGE OF KERGAL E ET AL IN THIS 1455 00:51:24,840 --> 00:51:26,880 2020 PAPER, IT IS AGENCY 1456 00:51:26,880 --> 00:51:28,320 ENHANCING YOU CAN DO THINGS BUT 1457 00:51:28,320 --> 00:51:29,560 YOU WOULDN'T HAVE BEEN ABLE TO 1458 00:51:29,560 --> 00:51:31,960 DO WITHOUT THIS DEVICE. BUT ALSO 1459 00:51:31,960 --> 00:51:33,280 POTENTIALLY AGENCY DISRUPTING 1460 00:51:33,280 --> 00:51:34,560 AND WE WANT TO PAY ATTENTION TO 1461 00:51:34,560 --> 00:51:39,120 BOTH OF THOSE. WHAT CAN WE LEARN 1462 00:51:39,120 --> 00:51:40,920 ABOUT IMPACT ON PEOPLE WITH 1463 00:51:40,920 --> 00:51:42,200 EXPERIENCE USING THE DEVICE SO 1464 00:51:42,200 --> 00:51:43,520 THAT WAS OUR FOCUS. IN THE 1465 00:51:43,520 --> 00:51:44,760 CONTEXT OF THESE INTERVIEWS, 1466 00:51:44,760 --> 00:51:47,320 WHAT IS OUR QUITE LENGTHY, WE 1467 00:51:47,320 --> 00:51:49,360 FOUND INTERESTING COMMENTARY ON 1468 00:51:49,360 --> 00:51:51,120 OTHER ASPECTS OF STUDIES. SO I'M 1469 00:51:51,120 --> 00:51:53,760 GOING TO GO THROUGH SOME OF 1470 00:51:53,760 --> 00:51:56,120 THESE TODAY. THE FACT THEY ARE 1471 00:51:56,120 --> 00:51:58,200 TIME CONSUMING AND INTENSIVE, 1472 00:51:58,200 --> 00:52:00,720 MENTALLY AND PHYSICALLY 1473 00:52:00,720 --> 00:52:01,280 EXHAUSTIVE, REIS SKI IN A 1474 00:52:01,280 --> 00:52:03,240 VARIETY OF WAYS, THERE ARE 1475 00:52:03,240 --> 00:52:05,040 ISSUES OF BARE RECIPROCITY FOR 1476 00:52:05,040 --> 00:52:07,080 WHAT IS OFFERED FROM THE 1477 00:52:07,080 --> 00:52:08,120 PARTICIPANTS WHAT THEY FEEL THEY 1478 00:52:08,120 --> 00:52:10,040 GET BACK. AND THAT THERE'S 1479 00:52:10,040 --> 00:52:11,520 OPPORTUNITY FOR MEANINGFUL 1480 00:52:11,520 --> 00:52:12,640 PARTICIPATION IN RELATIONSHIP 1481 00:52:12,640 --> 00:52:14,360 BUILDING. ASHLEY TOUCHED ON THAT 1482 00:52:14,360 --> 00:52:17,720 A BIT AT THE END OF HER TALK AND 1483 00:52:17,720 --> 00:52:20,040 ALSO THAT IT IS NOVEL THAT IT 1484 00:52:20,040 --> 00:52:22,440 CAN BE DIFFICULT FOR PERSPECTIVE 1485 00:52:22,440 --> 00:52:23,760 PARTICIPANTS TO UNDERSTAND WHAT 1486 00:52:23,760 --> 00:52:25,440 TO EXPECT. SO I WILL GIVE YOU A 1487 00:52:25,440 --> 00:52:27,600 GLIMPSE OF THESE THINGS. LEANING 1488 00:52:27,600 --> 00:52:30,320 ON QUOTE FROM OUR INTERVIEWS. 1489 00:52:30,320 --> 00:52:32,120 FIRST WITHOUT A DOUBT, THIS IS 1490 00:52:32,120 --> 00:52:33,640 GROUND BREAKING AND AGENCY 1491 00:52:33,640 --> 00:52:35,080 ENHANCING AND REALLY EXCITING. 1492 00:52:35,080 --> 00:52:37,920 SO ONE PERSON SAYS THEY WILL ASK 1493 00:52:37,920 --> 00:52:39,680 ME TO DO DIFFERENT TASKS PRETEND 1494 00:52:39,680 --> 00:52:41,120 YOU ARE USING YOUR THUMB TO MOVE 1495 00:52:41,120 --> 00:52:43,120 THIS CIRCLE ON THE SCREEN, 1496 00:52:43,120 --> 00:52:45,120 PRETEND. THAT WAS TWILIGHT 1497 00:52:45,120 --> 00:52:46,800 ZONISH TO ME, I THOUGHT REALLY? 1498 00:52:46,800 --> 00:52:48,360 HOW DO I DO THAT? THE MOST 1499 00:52:48,360 --> 00:52:49,560 INCREDIBLE THING TO ME WAS THAT 1500 00:52:49,560 --> 00:52:50,520 I COULD THINK ABOUT DOING 1501 00:52:50,520 --> 00:52:51,800 SOMETHING AND THE COMPUTER KNEW 1502 00:52:51,800 --> 00:52:53,680 MY BRAIN WAS TRYING TO DO IT AND 1503 00:52:53,680 --> 00:52:56,120 IT DID IT AMAZING. ANOTHER 1504 00:52:56,120 --> 00:52:57,200 PERSON SAYS I WOULDN'T GET 1505 00:52:57,200 --> 00:52:58,840 SENSATION OR MOVE MY FINGERS BUT 1506 00:52:58,840 --> 00:53:01,800 JUST WATCHING THE ROBOTIC ARM 1507 00:53:01,800 --> 00:53:03,120 MOVE EXACTLY HOW I WANTED IT TO 1508 00:53:03,120 --> 00:53:04,720 MOVE, IT WAS SO SHOCKING I THINK 1509 00:53:04,720 --> 00:53:06,320 IN THE BEGINNING THAT I WAS ABLE 1510 00:53:06,320 --> 00:53:10,160 TO MOVE THE THUMB. I THINK THAT 1511 00:53:10,160 --> 00:53:11,800 IS WHAT BUILT MY BOND WITH THE 1512 00:53:11,800 --> 00:53:13,560 ROBOTIC ARM, SEEMINGLY TO ACT 1513 00:53:13,560 --> 00:53:14,520 EXACTLY HOW I WANTED TO CONTROL 1514 00:53:14,520 --> 00:53:16,440 IT, I BUILD MY BOND WITH ROBOTIC 1515 00:53:16,440 --> 00:53:18,000 ARM AND MAKE IT TAKE STEPS TO 1516 00:53:18,000 --> 00:53:21,960 PEEL LIKE MY ARM. FASCINATING 1517 00:53:21,960 --> 00:53:24,960 ABOUT SENSE OF EMBODIMENT. BUT 1518 00:53:24,960 --> 00:53:26,560 THERE ARE ALSO CERTAIN WAYS IN 1519 00:53:26,560 --> 00:53:29,080 WHICH IT WAS INVASIVE ON AGENCY. 1520 00:53:29,080 --> 00:53:31,120 SO I THINK ONE THING I WANT TO 1521 00:53:31,120 --> 00:53:33,320 PAUSE A SECOND WE TALK ABOUT 1522 00:53:33,320 --> 00:53:34,320 INVASIVENESS IN THIS SPACE AS IF 1523 00:53:34,320 --> 00:53:38,680 IT IS JUST ABOUT ANYTHINGNA GOES 1524 00:53:38,680 --> 00:53:40,880 UNDER THE SKIN BUT INVASIVENESS 1525 00:53:40,880 --> 00:53:41,920 MATTERS FOR A SENSE OF WHAT I AM 1526 00:53:41,920 --> 00:53:45,160 AS AN AGENT. A THING COULD BE 1527 00:53:45,160 --> 00:53:48,920 OUTSIDE OF MY BRAIN 1528 00:53:48,920 --> 00:53:50,200 NON-IMPLANTABLE ONE THAT COULD 1529 00:53:50,200 --> 00:53:52,680 HAVE INVASIVE ISSUES. SO SOME OF 1530 00:53:52,680 --> 00:53:54,520 THE THINGS PEOPLE SAID HERE, 1531 00:53:54,520 --> 00:53:56,640 THERE IS A FORCE THAT I FEEL 1532 00:53:56,640 --> 00:53:58,600 THAT I'M WRESTLING AGAINST. 1533 00:53:58,600 --> 00:54:01,480 SOMETIMES IT IS NOT AS STRONG, 1534 00:54:01,480 --> 00:54:02,960 OTHER TIMES OVERWHELMING WHERE I 1535 00:54:02,960 --> 00:54:04,400 CAN'T PUSH AGAINST IT. IN FACT 1536 00:54:04,400 --> 00:54:06,160 IT PUSHES ME. I DON'T 1537 00:54:06,160 --> 00:54:08,840 UNDERSTAND WHY IT HAPPENED ON SO 1538 00:54:08,840 --> 00:54:10,680 OCCASIONS AND NOT OTHERS BUT IT 1539 00:54:10,680 --> 00:54:12,840 IS SOMETHING THEY TRYING TO 1540 00:54:12,840 --> 00:54:14,840 FIGURE OUT. IT SAYS LATER I 1541 00:54:14,840 --> 00:54:16,000 FEEL FRUSTRATED BECAUSE I'M 1542 00:54:16,000 --> 00:54:17,200 TRYING TO PUSH THROUGH AND THE 1543 00:54:17,200 --> 00:54:19,320 COMPUTER IS HOLDING ME BACK. I'M 1544 00:54:19,320 --> 00:54:21,000 TRYING TO EXERCISE MY AGENCY IN 1545 00:54:21,000 --> 00:54:22,320 THIS WAY AND THERE'S PUSH BACK 1546 00:54:22,320 --> 00:54:23,880 FROM THE COMPUTER. ANOTHER 1547 00:54:23,880 --> 00:54:25,160 PERSON SAYS WAIT A MINUTE WE 1548 00:54:25,160 --> 00:54:26,440 WERE JUST ROLLING ALONG REALLY 1549 00:54:26,440 --> 00:54:27,560 GOOD AND NOW THINGS AREN'T 1550 00:54:27,560 --> 00:54:29,320 WORKING. WHAT IS WRONG? IT WAS 1551 00:54:29,320 --> 00:54:31,080 FRUSTRATING. AND I HADN'T OPENED 1552 00:54:31,080 --> 00:54:33,320 UP FOR THOUGHT THAT OH, MAYBE 1553 00:54:33,320 --> 00:54:34,640 THEY ARE DOING SOMETHING 1554 00:54:34,640 --> 00:54:36,320 DIFFERENT, MAYBE ARE YOU JOKING 1555 00:54:36,320 --> 00:54:39,920 WITH ME? WHY CAN'T THIS BOARD 1556 00:54:39,920 --> 00:54:41,760 SUPPOSE TO GO DO WHAT IT IS 1557 00:54:41,760 --> 00:54:43,360 SUPPOSED TO DO, I THINK IS THE 1558 00:54:43,360 --> 00:54:44,800 CLAIM THERE, AND THEN IT WORKED 1559 00:54:44,800 --> 00:54:46,680 SO WHY DID THAT HAPPEN? I DON'T 1560 00:54:46,680 --> 00:54:48,240 UNDERSTAND IT. I DON'T 1561 00:54:48,240 --> 00:54:49,160 UNDERSTAND IF IT IS SOMETHING 1562 00:54:49,160 --> 00:54:50,640 I'M DOING SOMETHING RESEARCHERS 1563 00:54:50,640 --> 00:54:52,600 ARE DOING OR WHAT IS HAPPENING. 1564 00:54:52,600 --> 00:54:54,000 IF THINGS GOT AWAY FROM ME, SHE 1565 00:54:54,000 --> 00:54:55,560 SAYS I SAY THIS ISN'T WORKING 1566 00:54:55,560 --> 00:54:57,680 RIGHT, IF I COULDN'T CONTROL IT, 1567 00:54:57,680 --> 00:54:58,920 ESPECIALLY WE HAD ALREADY 1568 00:54:58,920 --> 00:55:01,000 MANAGED TO CONTROL A TASK TASK. THEN 1569 00:55:01,000 --> 00:55:03,320 ALL OF A SUDDEN I DIDN'T HAVE 1570 00:55:03,320 --> 00:55:04,720 CONTROL OVER WHATEVER IT WAS IT 1571 00:55:04,720 --> 00:55:06,400 WAS DOING. I SAY THIS IS NOT 1572 00:55:06,400 --> 00:55:07,920 RIGHT. I KNOW HOW TO DO THIS, 1573 00:55:07,920 --> 00:55:13,080 SOMETHING IS DIFFERENT. I FEEL I 1574 00:55:13,080 --> 00:55:14,640 CAN DO THIS THEN I CAN'T AND I 1575 00:55:14,640 --> 00:55:15,520 CAN'T EXPLAIN WHAT'S HAPPENING 1576 00:55:15,520 --> 00:55:18,120 THERE. FINALLY A THIRD PERSON 1577 00:55:18,120 --> 00:55:20,000 SAYS I FELT LIKE THAT MAYBE WHEN 1578 00:55:20,000 --> 00:55:21,200 THE GAIN ON THE COMPUTER SIDE 1579 00:55:21,200 --> 00:55:23,480 WAS TOO HIGH, IT WAS TOO EASY. I 1580 00:55:23,480 --> 00:55:25,160 HAD TO PUT NO EFFORT IN 1581 00:55:25,160 --> 00:55:27,560 COMPLETING THE TASK. BUT I 1582 00:55:27,560 --> 00:55:29,120 ALWAYS SHARED THAT BECAUSE I 1583 00:55:29,120 --> 00:55:30,520 FELT LIKE I WAS THERE TO WORK 1584 00:55:30,520 --> 00:55:31,520 AND WANTED TO MAKE SURE IT WAS 1585 00:55:31,520 --> 00:55:33,520 ME DOING THE TASK AND NOT THE 1586 00:55:33,520 --> 00:55:34,840 HELP OF THE COMPUTER 1587 00:55:34,840 --> 00:55:36,320 ACCOMPLISHING IT. THAT KIND OF 1588 00:55:36,320 --> 00:55:39,520 SHOWS YOU THIS NEED TO FEEL AGE 1589 00:55:39,520 --> 00:55:41,920 ENIAL. I'M DOING IT AND FEELING 1590 00:55:41,920 --> 00:55:43,800 UNCERTAINTY WHEN IT FEELS TOO 1591 00:55:43,800 --> 00:55:45,520 EASY IT FELT LIKE THE COMPUTER 1592 00:55:45,520 --> 00:55:47,840 WAS DOING IT. THESE ARE TIME 1593 00:55:47,840 --> 00:55:49,760 CONSUMING INTENSIVE STUDIES. 1594 00:55:49,760 --> 00:55:51,640 THEY ARE TYPICALLY SOMEWHERE 1595 00:55:51,640 --> 00:55:52,880 BETWEEN ONE AND FIVE YEARS. 1596 00:55:52,880 --> 00:55:54,560 HIGHLY INTERACTIVE. SO PEOPLE GO 1597 00:55:54,560 --> 00:55:57,120 INTO THE LAB, AT LEAST PRE-COVID 1598 00:55:57,120 --> 00:55:59,720 TWO OR THREE TIMES A WEEK FOR 1599 00:55:59,720 --> 00:56:01,120 TWO HOURS AT LEAST, OFTEN 1600 00:56:01,120 --> 00:56:02,920 REQUIRES TRAVEL TO LAB, PARKING 1601 00:56:02,920 --> 00:56:04,720 AND ALL OF THESE THINGS AS WE 1602 00:56:04,720 --> 00:56:06,800 KNOW CAN BE MADE MORE DIFFICULT 1603 00:56:06,800 --> 00:56:09,480 IN CASES WHERE THE RESEARCH 1604 00:56:09,480 --> 00:56:11,480 PARTICIPANT HAS A NEED FOR 1605 00:56:11,480 --> 00:56:12,800 ACCESSIBLE BAND DISABLED 1606 00:56:12,800 --> 00:56:16,040 PARKING, LOGISTICS OF HAVING A 1607 00:56:16,040 --> 00:56:17,080 CAREGIVER, HEALTH THEM GET THERE 1608 00:56:17,080 --> 00:56:18,960 ET CETERA. SO ONE PERSON SAYS 1609 00:56:18,960 --> 00:56:21,160 HERE JUST TO BE ILLUSTRATIVE. IT 1610 00:56:21,160 --> 00:56:22,320 FELT LIKE I WASN'T IN CONTROL 1611 00:56:22,320 --> 00:56:24,240 SOME OF THE TIME. IT ALSO FELT 1612 00:56:24,240 --> 00:56:25,920 LIKE MY ENERGY MY CAREGIVERS PUT 1613 00:56:25,920 --> 00:56:27,600 TO GET ME THERE ON TIME WAS 1614 00:56:27,600 --> 00:56:29,320 POINTLESS. SO THAT'S WHY I WOULD 1615 00:56:29,320 --> 00:56:30,800 BE MAKING A POINT TO SPEAK OUT 1616 00:56:30,800 --> 00:56:33,120 BECAUSE IT IS THE WHOLE PROCESS 1617 00:56:33,120 --> 00:56:34,600 THAT HAS TO BECOME THE CAREGIVER 1618 00:56:34,600 --> 00:56:37,880 HAS TO BE THERE. I HAD TO BE, 1619 00:56:37,880 --> 00:56:39,800 THE WHOLE EFFORT WOULD BE 1620 00:56:39,800 --> 00:56:41,200 USELESS. IT WAS LIKE WHY WAS I 1621 00:56:41,200 --> 00:56:42,920 THERE, WHY DID IT WAKE UP IN THE 1622 00:56:42,920 --> 00:56:44,520 MORNING? THIS IS JUST -- IT 1623 00:56:44,520 --> 00:56:45,840 TAKES A LOT OF EFFORT TO GET 1624 00:56:45,840 --> 00:56:47,080 THERE, I WANT TO MAKE SURE MY 1625 00:56:47,080 --> 00:56:50,040 TIME IS USED WELL. WHEN THEY 1626 00:56:50,040 --> 00:56:53,120 ARE THERE, IN THESE HIGH LITER 1627 00:56:53,120 --> 00:56:55,840 ACTIVE SESSIONS. I -- 1628 00:56:55,840 --> 00:56:57,440 INTERACTIVE SESSIONS. IT IS 1629 00:56:57,440 --> 00:57:00,520 MENTALLY, JUST DOING VISUAL 1630 00:57:00,520 --> 00:57:02,040 IMAGERY, MENTALLY AND PHYSICALLY 1631 00:57:02,040 --> 00:57:05,120 EXHAUSTING. SO A FEW EXAMPLES OF 1632 00:57:05,120 --> 00:57:05,720 THE SOME OF THE TIME I COULDN'T 1633 00:57:05,720 --> 00:57:06,640 ACCOMPLISH WHAT THEY WANTED ME 1634 00:57:06,640 --> 00:57:08,760 TO ACCOMPLISH ACCOMPLISH. I COME HOME AND 1635 00:57:08,760 --> 00:57:10,480 CONTINUE WORKING IN MY BRAIN. 1636 00:57:10,480 --> 00:57:11,680 COME HOME AND PRACTICE ALL DAY 1637 00:57:11,680 --> 00:57:13,880 LONG. DOESN'T HAVE ROBOTIC ARM, 1638 00:57:13,880 --> 00:57:16,280 DOESN'T HAVE THE SET UP BUT THEY 1639 00:57:16,280 --> 00:57:16,720 ARE PRACTICING THE 1640 00:57:16,720 --> 00:57:17,760 CONCENTRATION. I HAD TO LEARN 1641 00:57:17,760 --> 00:57:19,400 HOW TO COME HOME AND RELAX. 1642 00:57:19,400 --> 00:57:20,480 BECAUSE I WANT TO SAY MAYBE FOR 1643 00:57:20,480 --> 00:57:22,080 A YEAR, I COULDN'T JUST COME 1644 00:57:22,080 --> 00:57:24,120 HOME AND RELAX. I WAS WORKING 1645 00:57:24,120 --> 00:57:26,240 WITH THE ROBOTIC ARM BUT NOT 1646 00:57:26,240 --> 00:57:27,640 PHYSICALLY CONNECTED TO IT. I 1647 00:57:27,640 --> 00:57:29,120 WAS STILL MENTALLY TRYING TO 1648 00:57:29,120 --> 00:57:31,440 ACCOMPLISH IT. IT WAS TOO 1649 00:57:31,440 --> 00:57:32,960 EXHAUSTING. IT WAS TOO MUCH IT 1650 00:57:32,960 --> 00:57:35,600 WAS OVERWHELMING. ANOTHER 1651 00:57:35,600 --> 00:57:37,280 PERSON, VERY HARD, IN FACT IT IS 1652 00:57:37,280 --> 00:57:38,840 PHYSICALLY DRAINING AS WELL AS 1653 00:57:38,840 --> 00:57:40,440 MENTALLY. LIKE I SAID BEFORE WE 1654 00:57:40,440 --> 00:57:42,000 MET UP WITH YOU GUYS WHEN I'M 1655 00:57:42,000 --> 00:57:43,680 DONE WITH A SESSION I'M BEAT. 1656 00:57:43,680 --> 00:57:44,800 ESPECIALLY WHEN WE ARE DOING NEW 1657 00:57:44,800 --> 00:57:46,760 THINGS THAT I HADN'T DONE 1658 00:57:46,760 --> 00:57:48,800 BEFORE. OVER TIME IT IS ALMOST 1659 00:57:48,800 --> 00:57:50,800 LIKE A MUSCLE IN MY MIND, AND IN 1660 00:57:50,800 --> 00:57:54,120 MY ABILITY TO PUSH THE CURSOR. 1661 00:57:54,120 --> 00:57:55,120 IT STRENGTHENS OVER TIME AND 1662 00:57:55,120 --> 00:57:56,360 FREQUENT USE. IT TAKES TIME FOR 1663 00:57:56,360 --> 00:57:57,600 ME THE BUILD UP STRENGTH 1664 00:57:57,600 --> 00:58:00,120 MENTALLY AND PHYSICALLY. BUILT 1665 00:58:00,120 --> 00:58:01,920 UP STRENGTH TO SEND THAT SIGNAL 1666 00:58:01,920 --> 00:58:03,920 DOWN TO MY FOOT AND MIMIC THE 1667 00:58:03,920 --> 00:58:06,000 ACTION OF MOVEMENT. THE FOOT 1668 00:58:06,000 --> 00:58:07,880 ISN'T MOVING AT ALL, THE ARMS 1669 00:58:07,880 --> 00:58:10,200 AREN'T MOVING AT ALL BUT IT IS 1670 00:58:10,200 --> 00:58:14,520 PHYSICALLY EXHAUSTING TO DO THE 1671 00:58:14,520 --> 00:58:16,000 MENTAL WORK. ONE MORE, IN THE 1672 00:58:16,000 --> 00:58:17,760 BEGINNING I TOOK EFFORT INTO IT 1673 00:58:17,760 --> 00:58:19,760 AND TO THE POINT WHERE MY MIND I 1674 00:58:19,760 --> 00:58:22,720 WAS TIRED. MY ARMS WERE TIRED. 1675 00:58:22,720 --> 00:58:25,080 AS IF IT WERE MY HAND, AS IF I 1676 00:58:25,080 --> 00:58:27,120 HAD ACTUALLY BEEN DOING IT. THAT 1677 00:58:27,120 --> 00:58:29,720 STILL HAPPENS. MY ARMS GET 1678 00:58:29,720 --> 00:58:31,480 TIRED. I FIND THAT FASCINATING. 1679 00:58:31,480 --> 00:58:32,920 WHAT IS HAPPENING WHEN A PERSON 1680 00:58:32,920 --> 00:58:35,080 ISN'T MOVING THEIR ARMS BUT 1681 00:58:35,080 --> 00:58:37,960 THEIR ARMS FEEL TIRED THE 1682 00:58:37,960 --> 00:58:40,600 PHENOMENAL EXPERIENCES THAT 1683 00:58:40,600 --> 00:58:42,360 TIREDNESS. AT THE END OF THE 1684 00:58:42,360 --> 00:58:44,680 SESSION I AM TIRED I WOULD FALL 1685 00:58:44,680 --> 00:58:47,600 ASLEEP A COUPLE OF HOURS. THAT 1686 00:58:47,600 --> 00:58:49,600 DEPLETION OF BRAIN POWER. AFTER 1687 00:58:49,600 --> 00:58:51,800 A SESSION. IT IS RISKY. WE KNOW 1688 00:58:51,800 --> 00:58:53,240 THIS. THAT IS WHEN WE ARE 1689 00:58:53,240 --> 00:58:54,600 TALKING UNDERSTANDING OF RISK 1690 00:58:54,600 --> 00:58:56,160 AND THE CONSENT PROCESS, THIS IS 1691 00:58:56,160 --> 00:58:58,680 A KEY THING. ONE PARTICIPANT 1692 00:58:58,680 --> 00:59:00,560 SAYS I CONSULTED MY MOM, MY SON 1693 00:59:00,560 --> 00:59:02,320 MY DAUGHTER I HAD NO FAMILY 1694 00:59:02,320 --> 00:59:03,720 SUPPORT. NOBODY WANTED ME TO DO 1695 00:59:03,720 --> 00:59:05,280 IT. NOBODY WANTED ME TO DO IT. 1696 00:59:05,280 --> 00:59:06,480 THEY THOUGHT I MIGHT DIE OR THAT 1697 00:59:06,480 --> 00:59:08,720 I WOULD HAVE SOME BRAIN DAMAGE. 1698 00:59:08,720 --> 00:59:10,520 BASICALLY THEY TOLD ME THE ONLY 1699 00:59:10,520 --> 00:59:11,960 PART THAT FUNCTIONS CORRECTLY 1700 00:59:11,960 --> 00:59:13,400 ABOUT YOU IS YOUR BRAIN AND YOU 1701 00:59:13,400 --> 00:59:15,720 ARE GOING TO CUT IT OPEN? THEY 1702 00:59:15,720 --> 00:59:17,320 WERE COMPLETELY AGAINST IT. THIS 1703 00:59:17,320 --> 00:59:18,760 IS THE THINGS I HEARD FROM 1704 00:59:18,760 --> 00:59:19,920 OTHERS A HE WILL WITH THINKING 1705 00:59:19,920 --> 00:59:21,760 ABOUT THE PROSPECT OF ENTERING 1706 00:59:21,760 --> 00:59:23,040 SUCH A STUDY. THAT'S THE THING 1707 00:59:23,040 --> 00:59:27,080 THAT IS WORKING WELL, WHY WOULD 1708 00:59:27,080 --> 00:59:28,680 YOU TAKE ANY RISK WITH IT. 1709 00:59:28,680 --> 00:59:31,320 ANOTHER PERSON SAYS I'M STILL 1710 00:59:31,320 --> 00:59:32,440 CAUTIOUS I DON'T WANT ANYTHING 1711 00:59:32,440 --> 00:59:35,040 TO HIT PEDESTALS. WE HAD A 1712 00:59:35,040 --> 00:59:36,440 SITUATION WHERE THERE'S TWO 1713 00:59:36,440 --> 00:59:38,160 PEDESTALS OUT OF ONE THE SCREWS 1714 00:59:38,160 --> 00:59:39,240 CAME LOOSE AND I WAS GETTING 1715 00:59:39,240 --> 00:59:40,320 HEADACHES. THEY TOOK ME TO 1716 00:59:40,320 --> 00:59:42,320 SURGERY AND MOVED THE PEDESTAL 1717 00:59:42,320 --> 00:59:43,880 OVER AND PUT NEW SCREWS IN BUT 1718 00:59:43,880 --> 00:59:45,440 THAT WAS AN OUTPATIENT THING. I 1719 00:59:45,440 --> 00:59:47,680 JUST HAVE TO BE CAREFUL, WE NEED 1720 00:59:47,680 --> 00:59:49,680 TO HAVE OUR HAIR DONE AND MY 1721 00:59:49,680 --> 00:59:51,440 HAIR DRESSER HAS TO BE CAREFUL 1722 00:59:51,440 --> 00:59:52,680 THAT SHOULDN'T HIT THEM WHEN 1723 00:59:52,680 --> 00:59:54,240 WASHING MY HAIR IS IT IS NOT 1724 00:59:54,240 --> 00:59:56,360 ONLY THIS INITIAL SURGICAL RISK 1725 00:59:56,360 --> 00:59:59,320 BUT RISK GOING ALONG OF 1726 00:59:59,320 --> 01:00:00,320 DISLODGING THEM OR NEEDING 1727 01:00:00,320 --> 01:00:01,320 ANOTHER SURGERY TO CONTINUE 1728 01:00:01,320 --> 01:00:05,920 PARTICIPATION. I WANT TO I 1729 01:00:05,920 --> 01:00:07,360 THOUGHT ABOUT THIS ONE, THERE 1730 01:00:07,360 --> 01:00:10,560 ARE GOING TO BE ISSUES ABOUT 1731 01:00:10,560 --> 01:00:13,200 THEIR RECIPROCITY AND THINKING 1732 01:00:13,200 --> 01:00:14,720 ABOUT COMPENSATION OR 1733 01:00:14,720 --> 01:00:17,680 RECOGNITION FOR THE EFFORT PUT 1734 01:00:17,680 --> 01:00:21,320 FORTH BY THE PARTICIPANT. THIS 1735 01:00:21,320 --> 01:00:22,600 PERSON SAYS BECAUSE THE PROJECT 1736 01:00:22,600 --> 01:00:23,720 IS RECEIVING MULTI-MILLION 1737 01:00:23,720 --> 01:00:26,200 DOLLAR, WE ARE TALKING OVER $150 1738 01:00:26,200 --> 01:00:28,560 MILLION DONATIONS, AND I'M OVER 1739 01:00:28,560 --> 01:00:31,920 HERE GETTING $50 FOR MY TIME, 1740 01:00:31,920 --> 01:00:35,280 WHEN I JUST TO COME TO YOU IT 1741 01:00:35,280 --> 01:00:36,000 WOULD TAKE SEVERAL HOURS, ANY 1742 01:00:36,000 --> 01:00:37,560 LEGAL IMMIGRANT DAY LABOR IS 1743 01:00:37,560 --> 01:00:38,960 GETTING PAID MORE THAN WHAT I'M 1744 01:00:38,960 --> 01:00:40,200 DOING AND DIDN'T MAKE SENSE TO 1745 01:00:40,200 --> 01:00:41,200 COME OUT MAKING CAREERS OVER 1746 01:00:41,200 --> 01:00:45,360 HERE. I'M HELPING MAKE CAREERS. 1747 01:00:45,360 --> 01:00:48,320 THESE PEOPLE ARE GOING TO BE 1748 01:00:48,320 --> 01:00:49,240 RECOGNIZED FOR THE REST OF THEIR 1749 01:00:49,240 --> 01:00:50,480 LIVE WHAT IS THEY ESTABLISH, 1750 01:00:50,480 --> 01:00:52,280 WHEY I'M HELPING THEM ACCOMPLISH 1751 01:00:52,280 --> 01:00:53,440 AND THEY ARE NOT RECOGNIZING ME 1752 01:00:53,440 --> 01:01:01,960 AT ALL. THINKING ABOUT WHAT IS 1753 01:01:01,960 --> 01:01:03,320 FAIR IN TERMS OF WHAT THE 1754 01:01:03,320 --> 01:01:05,360 DIFFERENT PARTIES IN THIS 1755 01:01:05,360 --> 01:01:08,320 ENDEAVOR RECEIVE IS SOMETHING I 1756 01:01:08,320 --> 01:01:09,400 THINK WE HAVE TO TALK MORE 1757 01:01:09,400 --> 01:01:13,560 ABOUT. THERE ARE ALSO CONCERNS 1758 01:01:13,560 --> 01:01:14,920 ABOUT CONTINUED ACCESS, I JUST 1759 01:01:14,920 --> 01:01:17,200 LOOK AT IT AS BEING PART OF ME 1760 01:01:17,200 --> 01:01:19,520 THAT WAS THERE BECAUSE WHEN A 1761 01:01:19,520 --> 01:01:21,680 DEVICE IS EXTERNAL IT IS A TOOL. 1762 01:01:21,680 --> 01:01:23,360 BUT IF IT IS PART YOUR KNOWN 1763 01:01:23,360 --> 01:01:25,240 ANATOMY, IT IS THERE, USE IT. I 1764 01:01:25,240 --> 01:01:26,480 ALWAYS LOOK AT IT AS BEING PART 1765 01:01:26,480 --> 01:01:28,120 OF ME, NOT SOMETHING THAT I 1766 01:01:28,120 --> 01:01:30,280 WOULD SHUT OFF OR TURN BACK ON. 1767 01:01:30,280 --> 01:01:34,680 IT BECOMES PART OF WHO I AM. 1768 01:01:34,680 --> 01:01:35,920 SOMEBODY ELSE SAYS YOU WANT TO 1769 01:01:35,920 --> 01:01:37,160 GO MANY THERE BE CONNECTED MOVE 1770 01:01:37,160 --> 01:01:39,080 THE ROBOTIC ARM LIKE A HUMAN 1771 01:01:39,080 --> 01:01:41,040 BODY ARM BUT YOU QUICKLY LEARN 1772 01:01:41,040 --> 01:01:42,680 YOU ARE NOT ABLE TO DO THAT, 1773 01:01:42,680 --> 01:01:44,960 THERE IS A PROCESS, IT WAS 1774 01:01:44,960 --> 01:01:46,160 DISAPPOINTING. IT WASN'T 1775 01:01:46,160 --> 01:01:47,120 DISAPPOINTING TO THE POINT I 1776 01:01:47,120 --> 01:01:48,160 WASN'T GOING TO BE PART OF 1777 01:01:48,160 --> 01:01:48,920 PROJECT AND CONTINUE MOVING 1778 01:01:48,920 --> 01:01:52,200 FORWARD. I WOULD HAVE LIKE TO 1779 01:01:52,200 --> 01:01:54,320 KNOW THAT DARPA WAS THE OWNER OF 1780 01:01:54,320 --> 01:01:56,960 THE ROBOTIC ARM I BEGIN WITH AND 1781 01:01:56,960 --> 01:01:58,440 COULD HAVE CAME IN AND TOOK IT 1782 01:01:58,440 --> 01:02:00,240 WHEN I FELT LIKE IT, THAT IS 1783 01:02:00,240 --> 01:02:02,840 WHAT HAPPENED. SO ONE OF THE 1784 01:02:02,840 --> 01:02:04,760 THOUGHTS HERE IS THAT WHEN YOU 1785 01:02:04,760 --> 01:02:07,520 DO GET SOME ENHANCEMENT IN 1786 01:02:07,520 --> 01:02:09,720 AGENCY OR FEELING OF THIS THING 1787 01:02:09,720 --> 01:02:12,520 BEING EMBODIED, THEN IT IS 1788 01:02:12,520 --> 01:02:15,040 REMOVED, AT THE END OF THE STUDY 1789 01:02:15,040 --> 01:02:18,040 OR WHEN SOMEBODY EXITS THE 1790 01:02:18,040 --> 01:02:19,840 STUDY, THAT -- IT IS NOT JUST 1791 01:02:19,840 --> 01:02:21,560 BACK TO BASELINE, IT FEELS LIKE 1792 01:02:21,560 --> 01:02:24,200 A VIOLATION OF SOMETHING THAT 1793 01:02:24,200 --> 01:02:25,560 CHANGE THE WAY THE PERSON IS IN 1794 01:02:25,560 --> 01:02:28,120 THE WORLD. WE ALSO HEARD THIS I 1795 01:02:28,120 --> 01:02:30,920 WILL JUST SAY I'M MAINLY TALKING 1796 01:02:30,920 --> 01:02:35,040 BCI FOR MOTOR CONTROL STUDIES 1797 01:02:35,040 --> 01:02:37,280 BUT WE ALSO HEARD FROM PEOPLE 1798 01:02:37,280 --> 01:02:40,320 WHO ARE USING RESEARCH OR 1799 01:02:40,320 --> 01:02:44,960 CLINICAL RESEARCH DBS FOR 1800 01:02:44,960 --> 01:02:47,720 PSYCHIATRIC ISSUES. ONE PERSON 1801 01:02:47,720 --> 01:02:49,680 SAID MY ONLY CONCERN IS IF IT 1802 01:02:49,680 --> 01:02:50,960 DOESN'T GET APPROVED HOW MUCH 1803 01:02:50,960 --> 01:02:52,760 SUPPORT ARE WE GOING TO GET ONCE 1804 01:02:52,760 --> 01:02:55,040 THE STUDY ENDS, IT IS IN THERE, 1805 01:02:55,040 --> 01:02:56,520 SEEMS TO BE WORKING BUT I DON'T 1806 01:02:56,520 --> 01:02:57,520 KNOW WHAT HAPPENS WHEN THE STUDY 1807 01:02:57,520 --> 01:03:00,920 ENDS. I WILL SAY SO THESE ARE 1808 01:03:00,920 --> 01:03:02,560 SOME WORRIES THAT CAME OUT FROM 1809 01:03:02,560 --> 01:03:04,520 THE INTERVIEWS. I WILL SAY 1810 01:03:04,520 --> 01:03:05,800 THOUGH THAT PEOPLE REALLY FOUND 1811 01:03:05,800 --> 01:03:08,880 IT MEANINGFUL AND APPRECIATED 1812 01:03:08,880 --> 01:03:10,640 THE RELATIONSHIP BUILDING THAT 1813 01:03:10,640 --> 01:03:13,520 WENT ON GIVEN THE LENGTHY NUMBER 1814 01:03:13,520 --> 01:03:15,680 OF YEARS THEY ARE INVOLVED, 1815 01:03:15,680 --> 01:03:17,320 NUMBER OF TIMES PER WEEK. SO ONE 1816 01:03:17,320 --> 01:03:19,000 PERSON SAYS IT GAVE ME A 1817 01:03:19,000 --> 01:03:20,680 PURPOSE, WHEN I WENT THROUGH THE 1818 01:03:20,680 --> 01:03:23,120 ACCIDENT. AND REALIZED I WAS 1819 01:03:23,120 --> 01:03:24,000 PARALYZED NOT JUST PARALYZED 1820 01:03:24,000 --> 01:03:25,920 FROM LEGS BUT LITERALLY 1821 01:03:25,920 --> 01:03:27,200 SHOULDERS DOWN I THOUGHT IT IS 1822 01:03:27,200 --> 01:03:29,080 OVER FOR ME, HOW AM I GOING TO 1823 01:03:29,080 --> 01:03:30,160 DO THOSE THINGS. THIS IS A 1824 01:03:30,160 --> 01:03:31,720 PERSON WHO WAS A NURSE. HOW AM I 1825 01:03:31,720 --> 01:03:33,120 GOING TO TAKE CARE OF PATIENT? 1826 01:03:33,120 --> 01:03:34,480 AS I STARTED TO ENGAGE MORE INTO 1827 01:03:34,480 --> 01:03:36,120 THIS PROJECT AND SEEING THE 1828 01:03:36,120 --> 01:03:37,760 POTENTIAL BENEFIT, I FEEL LIKE I 1829 01:03:37,760 --> 01:03:40,120 NEVER LEFT THE PROFESSION. MY 1830 01:03:40,120 --> 01:03:42,280 CONTRIBUTION IS HERE. I FEEL 1831 01:03:42,280 --> 01:03:44,960 LIKE I'M DOING SOMETHING VERY 1832 01:03:44,960 --> 01:03:48,200 MEANINGFUL, IT MATTERS. BEYOND 1833 01:03:48,200 --> 01:03:49,320 MYSELF. ANOTHER PERSON SAYS 1834 01:03:49,320 --> 01:03:50,800 BEING INVOLVED WITH THE RESEARCH 1835 01:03:50,800 --> 01:03:54,080 HAS GIVEN ME IMPROVED SENSE OF 1836 01:03:54,080 --> 01:03:55,640 SELF BECAUSE I'M CONTRIBUTING 1837 01:03:55,640 --> 01:03:57,080 NEEDED AND HAVE VALUE FOR THINGS 1838 01:03:57,080 --> 01:04:00,400 I'M ABLE TO DO FOR RESEARCH. SHE 1839 01:04:00,400 --> 01:04:02,120 JOKED ABOUT BEING A LAB RAT THEN 1840 01:04:02,120 --> 01:04:03,720 NOTED PI OF THE STUDY SAID I 1841 01:04:03,720 --> 01:04:07,520 DON'T LOOK AT YOU AS A LAB RAT, 1842 01:04:07,520 --> 01:04:09,960 YOU ARE A CO-WORKER, A 1843 01:04:09,960 --> 01:04:10,720 COLLEAGUE. IT WAS A NICE 1844 01:04:10,720 --> 01:04:11,960 SENTIMENT SO THE SENSE OF DOING 1845 01:04:11,960 --> 01:04:13,400 SOMETHING MEANINGFUL AND 1846 01:04:13,400 --> 01:04:14,520 BUILDING A RELATIONSHIP AS A 1847 01:04:14,520 --> 01:04:18,080 TEAM MEMBER. TO OUR THIRD AIM WE 1848 01:04:18,080 --> 01:04:19,480 ASK PEOPLE IF THEY UNDERSTOOD 1849 01:04:19,480 --> 01:04:20,720 WHAT THEY WERE GETTING INTO. 1850 01:04:20,720 --> 01:04:22,240 THESE ARE PEOPLE ALL THE WAY -- 1851 01:04:22,240 --> 01:04:25,160 WELL INTO THE STUDY OR EVEN OUT 1852 01:04:25,160 --> 01:04:27,080 OF IT. ONE SAYS I THINK I 1853 01:04:27,080 --> 01:04:28,400 UNDERSTOOD AS MUCH AS I WAS 1854 01:04:28,400 --> 01:04:29,480 GOING TO UNDERSTAND WITHOUT 1855 01:04:29,480 --> 01:04:30,920 BEING PART OF IT. I TRIED TO 1856 01:04:30,920 --> 01:04:32,440 ASK ALL THE RIGHT QUESTIONS, I 1857 01:04:32,440 --> 01:04:34,200 COULD, BUT I DON'T THINK 1858 01:04:34,200 --> 01:04:35,760 ANYTHING PREPARES YOU. I DON'T 1859 01:04:35,760 --> 01:04:36,440 THINK YOU CAN ASK THE RIGHT 1860 01:04:36,440 --> 01:04:38,000 QUESTIONS. WITHOUT BEING PART OF 1861 01:04:38,000 --> 01:04:41,920 IT. I THINK THAT'S REALLY 1862 01:04:41,920 --> 01:04:43,080 FASCINATING. YOU DON'T KNOW WHAT 1863 01:04:43,080 --> 01:04:44,240 TO ASK UNTIL YOU ARE ALREADY IN 1864 01:04:44,240 --> 01:04:47,080 THERE. ANOTHER PERSON SAYS I 1865 01:04:47,080 --> 01:04:48,720 UNDERSTOOD IT ON PAPER AND THEN 1866 01:04:48,720 --> 01:04:50,720 TO HAVE IT ACTUALLY HAPPEN TO BE 1867 01:04:50,720 --> 01:04:52,920 DOING THE TASKS ARE COMPLETELY 1868 01:04:52,920 --> 01:04:53,920 DIFFERENT THAN WHAT I THOUGHT IT 1869 01:04:53,920 --> 01:04:55,480 WAS GOING TO BE. I HAD THAT 1870 01:04:55,480 --> 01:04:56,920 THOUGHT THAT I WOULD BE ABLE TO 1871 01:04:56,920 --> 01:05:00,240 START USING A TABLET APPLICATION 1872 01:05:00,240 --> 01:05:01,280 I WAS USED TO USING AND MAN I 1873 01:05:01,280 --> 01:05:03,320 HAD TO DROP DOWN MY EXPECTATIONS 1874 01:05:03,320 --> 01:05:04,600 LOW THAT THIS WAS NOT ABOUT THAT 1875 01:05:04,600 --> 01:05:06,400 AT ALL. SHE SAYS I PROBABLY 1876 01:05:06,400 --> 01:05:07,920 WOULD HAVE WANTED TO TALK TO 1877 01:05:07,920 --> 01:05:10,320 SOMEBODY ALREADY INVOLVED TO SEE 1878 01:05:10,320 --> 01:05:11,760 WHAT THEIR EXPERIENCE WAS LIKE, 1879 01:05:11,760 --> 01:05:13,320 AS IT TURNED OUT THERE'S NOT 1880 01:05:13,320 --> 01:05:16,760 MANY PEOPLE DOING THIS. SO MY 1881 01:05:16,760 --> 01:05:19,840 FINAL SLIDE. SO WHAT. I INVOLVE 1882 01:05:19,840 --> 01:05:23,360 THESE QUOTE I GAVE YOU. SOME 1883 01:05:23,360 --> 01:05:24,720 TENTATIVE TAKE HOME LESSONS. IT 1884 01:05:24,720 --> 01:05:26,320 IS REALLY IMPORTANT TO FIGURE 1885 01:05:26,320 --> 01:05:28,000 OUT WAYS TO RECOGNIZE 1886 01:05:28,000 --> 01:05:28,600 PARTICIPANTS FOR THEIR 1887 01:05:28,600 --> 01:05:30,000 CONTRIBUTIONS FOR THE RISKS THEY 1888 01:05:30,000 --> 01:05:31,720 TAKE, THE TIME THEY INVEST, THE 1889 01:05:31,720 --> 01:05:33,720 WORK THEY DO, AND MENTALLY AND 1890 01:05:33,720 --> 01:05:35,160 PHYSICALLY EXHAUSTING, WE NEED 1891 01:05:35,160 --> 01:05:38,440 TO MAKE SURE THAT THEY GET 1892 01:05:38,440 --> 01:05:40,040 RECOGNITION FOR THAT. IT IS 1893 01:05:40,040 --> 01:05:42,160 GOING TO BE IMPORTANT TO DEVELOP 1894 01:05:42,160 --> 01:05:45,120 CONSENT DISCUSSION TOOL TO HELP 1895 01:05:45,120 --> 01:05:45,640 PERSPECTIVE PARTICIPANTS 1896 01:05:45,640 --> 01:05:47,280 UNDERSTAND WHAT THEY CAN EXPECT. 1897 01:05:47,280 --> 01:05:48,360 THIS IS SOMETHING OUR GROUP IS 1898 01:05:48,360 --> 01:05:49,920 WORKING ON THIS YEAR IN THE 1899 01:05:49,920 --> 01:05:52,160 FINAL YEAR OF OUR GRANT. 1900 01:05:52,160 --> 01:05:53,320 ATTENTION TO SUPPORT STRUCTURE 1901 01:05:53,320 --> 01:05:54,720 WITHIN THE STUDY, THINKING ABOUT 1902 01:05:54,720 --> 01:05:57,760 WAYS THAT PEOPLE CAN BE 1903 01:05:57,760 --> 01:05:58,760 PARTICIPANTS CAN BE AS WELL 1904 01:05:58,760 --> 01:06:01,440 SUPPORTED AS POSSIBLE IN TERMS 1905 01:06:01,440 --> 01:06:03,920 OF GETTING THEIR HAVING COVERAGE 1906 01:06:03,920 --> 01:06:05,840 FOR CAREGIVER ROLES, IF THERE 1907 01:06:05,840 --> 01:06:06,800 ARE CAREGIVERS WHO CONTRIBUTE TO 1908 01:06:06,800 --> 01:06:08,080 THE RESEARCH IN SOME WAY 1909 01:06:08,080 --> 01:06:09,400 UNDERSTANDING WHAT THEY CAN DO 1910 01:06:09,400 --> 01:06:12,080 AND INCLUDING THEM. THINKING 1911 01:06:12,080 --> 01:06:14,960 ABOUT FINANCIAL COMPENSATION. I 1912 01:06:14,960 --> 01:06:15,880 ACKNOWLEDGE THERE ARE DANGERS 1913 01:06:15,880 --> 01:06:17,880 AND IN THE LITERATURE THERE IS 1914 01:06:17,880 --> 01:06:21,920 WORRY ABOUT UNDUE INDUCEMENT, 1915 01:06:21,920 --> 01:06:24,160 GIVEN THAT QUOTE I GAVE ON THE 1916 01:06:24,160 --> 01:06:25,520 FAIR RECIPROCITY SLIDE THERE IS 1917 01:06:25,520 --> 01:06:27,320 A SENSE I'M DOING A LOT HERE. 1918 01:06:27,320 --> 01:06:28,880 AND A LOT OF MONEY IS BEING MADE 1919 01:06:28,880 --> 01:06:31,640 AND I DON'T FEEL LIKE I'M BEING 1920 01:06:31,640 --> 01:06:33,520 TREATED FAIRLY IN TERMS OF WHAT 1921 01:06:33,520 --> 01:06:36,840 MY COMPENSATION IS. OUR TWO 1922 01:06:36,840 --> 01:06:39,680 WONDERFUL POST DOCS HAVE PAPER 1923 01:06:39,680 --> 01:06:43,120 IN PROCESS ON THAT GUPTA AND 1924 01:06:43,120 --> 01:06:45,320 ANDREA, OTHER WAYS TO RECOGNIZE 1925 01:06:45,320 --> 01:06:46,280 AND VALUE AND CONTRIBUTION 1926 01:06:46,280 --> 01:06:48,320 BEYOND PAYMENT. THINGS LIKE 1927 01:06:48,320 --> 01:06:50,400 THINKING OF PEOPLE AS TEAM 1928 01:06:50,400 --> 01:06:52,080 MEMBERS, TRYING TO EXPLORE WHAT 1929 01:06:52,080 --> 01:06:53,640 THAT WOULD MEAN TO MAKE SURE 1930 01:06:53,640 --> 01:06:55,320 PEOPLE FEEL RECOGNIZED AND 1931 01:06:55,320 --> 01:06:59,240 RESPECTED IN THAT ROLE. AND THEN 1932 01:06:59,240 --> 01:07:00,800 ALSO BETTER POST TRIAL ACCESS OR 1933 01:07:00,800 --> 01:07:02,400 HELP TRANSITION OUT OF THE 1934 01:07:02,400 --> 01:07:04,320 STUDY, OUR GROUP RAN A POST 1935 01:07:04,320 --> 01:07:06,680 TRIAL OBLIGATION WORKSHOP LAST 1936 01:07:06,680 --> 01:07:10,280 SPRING AND WE ARE WORKING ON A 1937 01:07:10,280 --> 01:07:12,720 PAPER THAT SHOULD BE SHARED 1938 01:07:12,720 --> 01:07:14,520 AROUND HOW TO MAKE SURE PEOPLE 1939 01:07:14,520 --> 01:07:16,800 ARE REALLY TREATED WELL AND 1940 01:07:16,800 --> 01:07:17,920 SUPPORTED THROUGH THE EXIT OF 1941 01:07:17,920 --> 01:07:22,440 THE STUDY. THIS IS MY AWESOME 1942 01:07:22,440 --> 01:07:25,160 GROUP HERE FROM UDUB. HAPPY TO 1943 01:07:25,160 --> 01:07:29,520 TAKE SOME QUESTIONS. I WILL SEE 1944 01:07:29,520 --> 01:07:30,960 IF I CAN STOP MY SHARE. 1945 01:07:30,960 --> 01:07:33,440 >> THANK YOU, SARA. THAT WAS 1946 01:07:33,440 --> 01:07:35,320 WONDERFUL. COUPLE OF BRIEF 1947 01:07:35,320 --> 01:07:36,320 QUESTIONS FOR SARA BEFORE WE 1948 01:07:36,320 --> 01:07:37,520 START THE PANEL DISCUSSION? 1949 01:07:37,520 --> 01:07:43,960 ANYBODY? ASHLEY. 1950 01:07:43,960 --> 01:07:45,640 >> THANK YOU FOR THAT. 1951 01:07:45,640 --> 01:07:49,360 >> REALLY WONDERFUL WONDERFUL. SO SOME OF 1952 01:07:49,360 --> 01:07:52,320 THE THINGS YOU SAID TO ME, SO WE 1953 01:07:52,320 --> 01:07:55,440 ALSO DO SOME WORK WITH PATIENTS 1954 01:07:55,440 --> 01:07:56,760 WHO ARE LIKE IN EARLY 1955 01:07:56,760 --> 01:07:58,760 FEASIBILITY STUDIES FOR VISUAL 1956 01:07:58,760 --> 01:08:01,720 BCI SYSTEMS, HAVING VISUAL 1957 01:08:01,720 --> 01:08:04,680 CORTICAL PROSTHESIS DEVICE AND 1958 01:08:04,680 --> 01:08:05,800 REALLY COMMON THEMES WHAT YOU 1959 01:08:05,800 --> 01:08:07,680 SHARE AND SOME OF THE THINGS WE 1960 01:08:07,680 --> 01:08:09,440 SEE LIKE EXPECTATIONS, MAYBE 1961 01:08:09,440 --> 01:08:11,120 THAT THIS IS KIND OF LIKE A 1962 01:08:11,120 --> 01:08:12,240 TRANSFORMATIVE EXPERIENCE IN 1963 01:08:12,240 --> 01:08:14,160 SOME WAY WHERE YOU CAN KIND OF 1964 01:08:14,160 --> 01:08:15,080 UNDERSTAND WHAT IT IS LIKE UNTIL 1965 01:08:15,080 --> 01:08:16,400 YOU DO IT. I'M WONDERING 1966 01:08:16,400 --> 01:08:19,480 WHETHER YOUR THOUGHTS ARE, ON 1967 01:08:19,480 --> 01:08:23,440 THE BENEFITS OF CROSS TALK, 1968 01:08:23,440 --> 01:08:25,880 ACROSS THE VARIOUS BCI STUDIES. 1969 01:08:25,880 --> 01:08:27,520 WHAT YOU THINK MIGHT BE THE 1970 01:08:27,520 --> 01:08:31,440 BENEFIT OF BEING ABLE TO SHARE 1971 01:08:31,440 --> 01:08:32,480 THOSE COMPARE THOSE EXPERIENCES. 1972 01:08:32,480 --> 01:08:33,960 WE HAVE BEEN THINKING THERE'S 1973 01:08:33,960 --> 01:08:37,560 SIGNIFICANTLY DIFFERENT BUT I'M 1974 01:08:37,560 --> 01:08:39,000 WONDERING YOUR THOUGHTS ON THAT 1975 01:08:39,000 --> 01:08:40,360 GIVEN MOVEMENT AND VISION AND 1976 01:08:40,360 --> 01:08:41,160 SPEECH AND ALL THE THINGS 1977 01:08:41,160 --> 01:08:41,680 HAPPENING IN THE SPACE. 1978 01:08:41,680 --> 01:08:43,720 >> WE HAVE TO PAY ATTENTION TO 1979 01:08:43,720 --> 01:08:44,880 THOSE DIFFERENCES. BUT I GUESS 1980 01:08:44,880 --> 01:08:46,800 THIS IS WHERE I THINK THE 1981 01:08:46,800 --> 01:08:47,840 EMPIRICAL WORK MATTERS WE NEED 1982 01:08:47,840 --> 01:08:51,120 TO TALK TO PEOPLE IN THE STUDIES 1983 01:08:51,120 --> 01:08:52,440 TO KNOW BETTER WHETHER OR NOT 1984 01:08:52,440 --> 01:08:56,600 THE ISSUES AND THE PHENOMENAL 1985 01:08:56,600 --> 01:08:57,920 EXPERIENCES REALLY SIMILAR AT 1986 01:08:57,920 --> 01:09:01,120 LEAST IN BROAD STROKES OR VERY 1987 01:09:01,120 --> 01:09:07,080 DIFFERENT. I THINK DIFFERENT 1988 01:09:07,080 --> 01:09:08,840 STUDIES SOME IN YOUR HOME, SOME 1989 01:09:08,840 --> 01:09:10,640 INTO THE LAB, IT IS NOT ONLY THE 1990 01:09:10,640 --> 01:09:13,480 MODALITY THAT WE ARE TALKING 1991 01:09:13,480 --> 01:09:15,320 ABOUT BUT HOW THEY ARE ORGANIZED 1992 01:09:15,320 --> 01:09:16,400 AND STRUCTURED. THIS IS WHAT I 1993 01:09:16,400 --> 01:09:17,520 THINK, SO INTERESTING THAT THE 1994 01:09:17,520 --> 01:09:20,120 PEOPLE WE TALK TO SAID YEAH, I 1995 01:09:20,120 --> 01:09:22,280 JUST -- I WOULDN'T HAVE EVEN 1996 01:09:22,280 --> 01:09:25,280 KNOWN WHAT QUESTIONS TO ASK. I 1997 01:09:25,280 --> 01:09:28,120 FEEL LIKE I UNDERSTAND AS BEST I 1998 01:09:28,120 --> 01:09:29,600 COULD BEFORE I HAVE THE 1999 01:09:29,600 --> 01:09:30,840 EXPERIENCE. BUT NOW THAT WE HAVE 2000 01:09:30,840 --> 01:09:32,560 THE EXPERIENCE, LET'S USE THE 2001 01:09:32,560 --> 01:09:36,360 EXPERIENCE TO FEEDBACK TO 2002 01:09:36,360 --> 01:09:37,520 PERSPECTIVE PARTICIPANTS, AS YOU 2003 01:09:37,520 --> 01:09:38,720 SAID IN MY QUESTION IN YOUR 2004 01:09:38,720 --> 01:09:42,720 SESSION ASHLEY, NOT TO JUST PICK 2005 01:09:42,720 --> 01:09:44,280 ONE OR TOKEN HERE TOKEN THERE 2006 01:09:44,280 --> 01:09:46,000 BUT TO SORT OF SAY THIS IS A 2007 01:09:46,000 --> 01:09:48,120 RANGE OF EXPERIENCES THAT PEOPLE 2008 01:09:48,120 --> 01:09:50,480 HAVE HAD DOING THIS AND YOU JUST 2009 01:09:50,480 --> 01:09:52,320 WANT TO KNOW SOMETHING ABOUT 2010 01:09:52,320 --> 01:09:54,120 THAT. BEFORE YOUR SIGNING UP FOR 2011 01:09:54,120 --> 01:09:55,880 IT TO MAKE SURE YOU ARE WELL 2012 01:09:55,880 --> 01:09:57,640 INFORMED. SOME OF THE THINGS I 2013 01:09:57,640 --> 01:10:01,120 DIDN'T TALK ABOUT BUT SOME 2014 01:10:01,120 --> 01:10:03,000 PARTICIPANTS SAID IS THERE ARE 2015 01:10:03,000 --> 01:10:04,240 ALSO LOST OPPORTUNITIES, IF YOU 2016 01:10:04,240 --> 01:10:05,680 ARE IN THIS STUDY YOU ARE NOT 2017 01:10:05,680 --> 01:10:08,120 GOING TO BE IN THE STEM CELL 2018 01:10:08,120 --> 01:10:12,080 STUDY. SO YOU WANT TO BE CLEAR 2019 01:10:12,080 --> 01:10:13,120 ABOUT THE POSSIBILITIES FACING 2020 01:10:13,120 --> 01:10:15,760 WHAT YOU ARE DOING, I THINK WE 2021 01:10:15,760 --> 01:10:18,200 WILL STILL DO IT, I WILL SAY OUR 2022 01:10:18,200 --> 01:10:19,840 PARTICIPANTS I THINK ALL OF THEM 2023 01:10:19,840 --> 01:10:22,280 SAID EVEN THE PEOPLE VERY 2024 01:10:22,280 --> 01:10:24,600 CRITICAL, SAID THEY REALLY LIKED 2025 01:10:24,600 --> 01:10:27,560 BEING IN THIS STUDY. BUT WE ARE 2026 01:10:27,560 --> 01:10:29,880 NOT JUST DONE THERE, THERE ARE 2027 01:10:29,880 --> 01:10:30,800 SIGNIFICANT CONCERNS WE WANT TO 2028 01:10:30,800 --> 01:10:33,360 PAY ATTENTION TO THOSE AND THINK 2029 01:10:33,360 --> 01:10:35,320 ABOUT WAYS ESPECIALLY AS THIS 2030 01:10:35,320 --> 01:10:40,760 WORK EXPANDS THAT WE CAN DO IT 2031 01:10:40,760 --> 01:10:41,720 WITH BETTER SUPPORT FOR THEM AND 2032 01:10:41,720 --> 01:10:42,000 THEIR NEEDS. 2033 01:10:42,000 --> 01:10:44,680 >> STEVE. 2034 01:10:44,680 --> 01:10:46,960 >> SO LET ME JUST FIRST SAY 2035 01:10:46,960 --> 01:10:51,720 AMAZING STUDY STUDY. I THANK YOU AND 2036 01:10:51,720 --> 01:10:55,520 AND THANK ON OUR BEHALF ALL OF 2037 01:10:55,520 --> 01:10:58,560 YOUR TRAINEES AND SO FORTH WHO 2038 01:10:58,560 --> 01:10:59,080 PARTICIPATED. THIS IS 2039 01:10:59,080 --> 01:11:05,680 INCREDIBLE. BUT NOW TO ASK 2040 01:11:05,680 --> 01:11:10,080 SOMETHING PRAGMATIC AND NOTHING 2041 01:11:10,080 --> 01:11:12,280 YOU WOULD FIND IN PHILOSOPHY OR 2042 01:11:12,280 --> 01:11:15,080 DARKER PAGES, WHICH IS HOW DO 2043 01:11:15,080 --> 01:11:16,720 YOU REDUCE THIS TO PRACTICE? YOU 2044 01:11:16,720 --> 01:11:20,920 HAVE DONE THIS EMPIRICAL STUDY, 2045 01:11:20,920 --> 01:11:23,000 IT IS ONE STUDY, IT IS VERY 2046 01:11:23,000 --> 01:11:25,520 CONVINCING. YOU JUST SAID WE 2047 01:11:25,520 --> 01:11:27,200 SHOULD LEARN FROM PEOPLE'S 2048 01:11:27,200 --> 01:11:28,320 EXPERIENCE, WOULDN'T IT BE NICE 2049 01:11:28,320 --> 01:11:29,600 IF THEY KNEW THESE THINGS AHEAD 2050 01:11:29,600 --> 01:11:35,240 OF TIME. THE PROBLEM IS THIS IS 2051 01:11:35,240 --> 01:11:37,080 COMING FROM DIFFERENT FUNDING 2052 01:11:37,080 --> 01:11:40,640 AGENCIES AND DINT UNIVERSITIES. 2053 01:11:40,640 --> 01:11:42,640 ASIDE FROM ALL THE NOT A HUGE 2054 01:11:42,640 --> 01:11:44,720 NUMBER BUT SCHOLAR PAPER IF YOU 2055 01:11:44,720 --> 01:11:45,960 HEARD ONE ABOUT ANOTHER ONE 2056 01:11:45,960 --> 01:11:47,840 TODAY ON ETHICAL COMMITMENTS, 2057 01:11:47,840 --> 01:11:50,640 THESE VERY IMPORTANT PAPERS. IS 2058 01:11:50,640 --> 01:11:53,160 THERE A WAY OF LITERALLY TURNING 2059 01:11:53,160 --> 01:11:55,720 THIS INTO A BEST PRACTICE THAT 2060 01:11:55,720 --> 01:12:00,560 WOULD BE EXPECTED ACROSS FUNDING 2061 01:12:00,560 --> 01:12:03,000 APE GYPSIES, WHEN THEIR PROJECTS 2062 01:12:03,000 --> 01:12:04,440 SUCH AS THIS? IT SHOULD BE A 2063 01:12:04,440 --> 01:12:08,720 LIVING DOCUMENT. BECAUSE I AGREE 2064 01:12:08,720 --> 01:12:11,480 ENTIRELY, THIS IS BASED ON 2065 01:12:11,480 --> 01:12:13,320 PEOPLE'S EXPERIENCE. THAT WILL 2066 01:12:13,320 --> 01:12:15,400 CHANGE OVER TIME OR THERE WILL 2067 01:12:15,400 --> 01:12:17,040 BE NEW POINTS BUT CURIOUS, MAYBE 2068 01:12:17,040 --> 01:12:21,960 IT IS UNFAIR THE ASK YOU, BUT 2069 01:12:21,960 --> 01:12:24,720 HOW WOULD WE -- HOW WOULD WE 2070 01:12:24,720 --> 01:12:27,320 MAKE THE VOLUNTEERS THE 2071 01:12:27,320 --> 01:12:28,680 BENEFICIARIES, THE TRUE 2072 01:12:28,680 --> 01:12:31,720 BENEFICIARIES OF YOUR EMPIRICAL 2073 01:12:31,720 --> 01:12:31,920 WORK? 2074 01:12:31,920 --> 01:12:34,160 >> IT IS A GREAT QUESTION. 2075 01:12:34,160 --> 01:12:35,360 PHILOSOPHERS DOING WORK FOR THE 2076 01:12:35,360 --> 01:12:37,960 NIH ARE GOING TO HAVE TO HAVE 2077 01:12:37,960 --> 01:12:40,400 THAT PRACTICAL TURN. THIS IS 2078 01:12:40,400 --> 01:12:42,720 OUR THIRD AIM IN OUR GRANT AND 2079 01:12:42,720 --> 01:12:45,600 ONE OF THE THINGS THAT WE HAVE 2080 01:12:45,600 --> 01:12:47,760 LOOKED AT WITHIN THERAPEUTICS SO 2081 01:12:47,760 --> 01:12:49,440 CANCER CARE, THERE IS A THING 2082 01:12:49,440 --> 01:12:51,440 CALLED A QUESTION PROMPT LIST. 2083 01:12:51,440 --> 01:12:54,400 WHICH IS A SET OF QUESTIONS THAT 2084 01:12:54,400 --> 01:12:55,640 MIGHT GUIDE YOUR DISCUSSION 2085 01:12:55,640 --> 01:12:57,920 AROUND INFORMED CONSENT AGAIN IN 2086 01:12:57,920 --> 01:13:00,000 THE THERAPEUTIC CONTEXT BUT WE 2087 01:13:00,000 --> 01:13:01,960 THINK THERE ARE WAYS TO PIVOT 2088 01:13:01,960 --> 01:13:05,720 THAT TO THINKING ABOUT INFORM 2089 01:13:05,720 --> 01:13:06,920 CONSENT PROCESS AND THOSE 2090 01:13:06,920 --> 01:13:09,560 QUESTIONS I THINK BY AND LARGE 2091 01:13:09,560 --> 01:13:10,800 WOULD COME FROM PREVIOUS 2092 01:13:10,800 --> 01:13:12,800 PARTICIPANTS. NOW IT IS A MOVING 2093 01:13:12,800 --> 01:13:16,120 THING. SO WE ARE GOING TO -- 2094 01:13:16,120 --> 01:13:18,000 AREAS, THE DEVICE IS GOING TO BE 2095 01:13:18,000 --> 01:13:19,000 DIFFERENT BUT THAT COULD BE 2096 01:13:19,000 --> 01:13:20,120 UPDATE -- IF THERE IS A -- 2097 01:13:20,120 --> 01:13:23,760 >> A LIVING DOCUMENT, NOT A 2098 01:13:23,760 --> 01:13:26,920 MOVING THING BUT A LIVE 2099 01:13:26,920 --> 01:13:27,200 DOCUMENT. 2100 01:13:27,200 --> 01:13:28,560 >> SOMETHING WE CAN KEEP 2101 01:13:28,560 --> 01:13:31,080 UPDATING AND TO ASHLEY'S POINT 2102 01:13:31,080 --> 01:13:32,000 THINKING ABOUT VIDEO THAT IS 2103 01:13:32,000 --> 01:13:33,600 REMOVED FROM THE INDIVIDUAL 2104 01:13:33,600 --> 01:13:39,720 CLINICIAN RESEARCHER, THAT 2105 01:13:39,720 --> 01:13:40,520 CONTAINS INFORMATION THAT MIGHT 2106 01:13:40,520 --> 01:13:41,600 HAVE TO BE SLIGHTLY ADJUSTED IF 2107 01:13:41,600 --> 01:13:44,320 IT IS ABOUT A VISUAL PROSTHETIC 2108 01:13:44,320 --> 01:13:46,320 VERSUS A MOTOR -- BECAUSE THE 2109 01:13:46,320 --> 01:13:46,680 EXPERIENCE IS -- 2110 01:13:46,680 --> 01:13:50,440 >> THAT IS WHY TREATING THIS AS 2111 01:13:50,440 --> 01:13:53,720 BEST PRACTICE, NOT AS A SET OF 2112 01:13:53,720 --> 01:13:54,440 REGULATORY GUIDELINES IS 2113 01:13:54,440 --> 01:13:56,600 IMPORTANT. THE OTHER THING, LET 2114 01:13:56,600 --> 01:13:59,920 ME JUST SAY IS, I'M WARY OF 2115 01:13:59,920 --> 01:14:02,120 INCLUDING THIS IN INFORMED 2116 01:14:02,120 --> 01:14:04,520 CONSENT BECAUSE I GOT THE SENSE 2117 01:14:04,520 --> 01:14:07,520 FROM YOUR DISCUSSION OF YOUR 2118 01:14:07,520 --> 01:14:11,040 EMPIRICAL WORK THAT PEOPLE MAY 2119 01:14:11,040 --> 01:14:13,440 HAVE FELT THERE WAS SO MUCH 2120 01:14:13,440 --> 01:14:14,720 INFORMATION, OR MORE THAN THAT, 2121 01:14:14,720 --> 01:14:15,520 THEY COULDN'T IMAGINE WHAT THEY 2122 01:14:15,520 --> 01:14:18,320 WERE GETTING INTO. AND IT SOUNDS 2123 01:14:18,320 --> 01:14:21,600 LIKE THERE SHOULD BE SOME 2124 01:14:21,600 --> 01:14:24,240 WRITTEN EVIDENCE OF THIS FOR 2125 01:14:24,240 --> 01:14:26,920 SUBJECTS AND THEIR FAMILIES. 2126 01:14:26,920 --> 01:14:28,800 >> WRITTEN EVIDENCE WOULD BE 2127 01:14:28,800 --> 01:14:30,880 GOOD. . FOR THE COMING INTO IT. 2128 01:14:30,880 --> 01:14:33,880 I THINK WE -- INTO THE STUDY, I 2129 01:14:33,880 --> 01:14:35,320 THINK WE ALSO THINK IT IS -- 2130 01:14:35,320 --> 01:14:38,560 CONSENT IS AN ONGOING PROCESS, 2131 01:14:38,560 --> 01:14:40,640 PARTLY ONCE THE PERSON IS IN THE 2132 01:14:40,640 --> 01:14:42,520 STUDY MAYBE THE ONUS SHIFTS TO 2133 01:14:42,520 --> 01:14:44,840 THE RESEARCHER TO BE ASKING 2134 01:14:44,840 --> 01:14:47,680 CERTAIN KINDS OF QUESTIONS ABOUT 2135 01:14:47,680 --> 01:14:51,720 SENSE OF AGENCY, THEIR FELT 2136 01:14:51,720 --> 01:14:52,960 RECOGNITION, DO YOU FEEL HOW ARE 2137 01:14:52,960 --> 01:14:56,040 THINGS GOING CHECK IN, BACK TO 2138 01:14:56,040 --> 01:14:58,360 ASHLEY'S CONCERN ABOUT CLINICIAN 2139 01:14:58,360 --> 01:14:59,320 RESEARCHER MIGHT NEED TO BE 2140 01:14:59,320 --> 01:15:00,760 SOMEBODY WHO IS A LITTLE 2141 01:15:00,760 --> 01:15:04,880 INDEPENDENT BECAUSE WE ALL KNOW 2142 01:15:04,880 --> 01:15:06,160 E MORE VULNERABLE IN THE 2143 01:15:06,160 --> 01:15:08,120 POSITION RESEARCH YOU DON'T WANT 2144 01:15:08,120 --> 01:15:09,720 TO BE THE SQUEAKY WHEEL. 2145 01:15:09,720 --> 01:15:12,720 >> IRBs INONGOING INFORMED 2146 01:15:12,720 --> 01:15:14,720 CONSENT IS A PROCESS, NOT A LOT, 2147 01:15:14,720 --> 01:15:15,120 MAYBE ZERO. 2148 01:15:15,120 --> 01:15:19,800 >> IT IS OFTEN A IDEAL WE ASPIRE 2149 01:15:19,800 --> 01:15:21,520 TO AND MAYBE DON'T PUT INTO 2150 01:15:21,520 --> 01:15:22,920 PRACTICE WELL ENOUGH. IT TENDS 2151 01:15:22,920 --> 01:15:27,280 TO BE EPISODIC. RATHER THAN 2152 01:15:27,280 --> 01:15:28,280 ONGOING. 2153 01:15:28,280 --> 01:15:31,040 >> SAMIR. I WAS GOING TO CALL ON 2154 01:15:31,040 --> 01:15:32,440 YOU BEFORE BUT THEN YOU 2155 01:15:32,440 --> 01:15:35,160 DISAPPEARED. LOOKS LIKE YOU HAD 2156 01:15:35,160 --> 01:15:35,400 SURGERY. 2157 01:15:35,400 --> 01:15:40,600 >> I DID I (INAUDIBLE) IN THE 2158 01:15:40,600 --> 01:15:42,320 DISCUSSION BUT THIS WILL BE 2159 01:15:42,320 --> 01:15:46,280 SHORT. THANKS SO MUCH REALLY 2160 01:15:46,280 --> 01:15:47,880 INTERESTING. WONDERING I WAS 2161 01:15:47,880 --> 01:15:48,760 INTERESTED IN WHAT THE 2162 01:15:48,760 --> 01:15:50,160 PARTICIPANT WHO IS TALKING ABOUT 2163 01:15:50,160 --> 01:15:51,680 THIS RELATIVE MAGNITUDE OF 2164 01:15:51,680 --> 01:15:56,280 DOLLARS SPENT, PROJECT OVERALL 2165 01:15:56,280 --> 01:15:59,800 GIVEN $50 PARKING PERHAPS. AND 2166 01:15:59,800 --> 01:16:01,440 TIMES WHAT WE DISCUSS IN THIS 2167 01:16:01,440 --> 01:16:05,480 GROUP THERE IS THE LAST TIME WE 2168 01:16:05,480 --> 01:16:06,920 MET HOW MUCH IS ENOUGH, TOO 2169 01:16:06,920 --> 01:16:09,440 MUCH, SHOULD THERE BE ANY, NONE, 2170 01:16:09,440 --> 01:16:10,520 COMPENSATION WISE FOR THESE 2171 01:16:10,520 --> 01:16:13,400 PARTICIPANTS IN PARTICULAR FOR 2172 01:16:13,400 --> 01:16:16,640 THESE BCI STUDIES. I WONDER IF 2173 01:16:16,640 --> 01:16:17,320 THAT CONVERSATION WENT FURTHER 2174 01:16:17,320 --> 01:16:18,640 AND WHETHER THE PARTICIPANT HAD 2175 01:16:18,640 --> 01:16:20,920 IDEAS OR SUGGESTIONS, YOU GAVE 2176 01:16:20,920 --> 01:16:23,920 THEM A TON OF MONEY AND IT IS 2177 01:16:23,920 --> 01:16:25,960 UNDUE INFLUENCE, DID THEY HAVE 2178 01:16:25,960 --> 01:16:28,600 ANY SUGGESTIONS FOR WHAT THEY 2179 01:16:28,600 --> 01:16:30,760 THOUGHT WOULD BE THE APPROPRIATE 2180 01:16:30,760 --> 01:16:31,000 BALANCE? 2181 01:16:31,000 --> 01:16:32,720 >> NO, I WILL SAY ABOUT THIS 2182 01:16:32,720 --> 01:16:34,320 ONE, UNFORTUNATELY NOT -- I 2183 01:16:34,320 --> 01:16:40,320 THINK OUR INTERVIEWER WAS MOVED 2184 01:16:40,320 --> 01:16:45,680 BY HOW VEHEMENTLY ABOUT HOW HE 2185 01:16:45,680 --> 01:16:47,680 SPOKE ABOUT IT, IT WAS A LITTLE 2186 01:16:47,680 --> 01:16:49,800 SURPRISED. ONE THING BACK TO 2187 01:16:49,800 --> 01:16:51,000 INTERVIEW OR PLAN IS TO 2188 01:16:51,000 --> 01:16:51,840 INTERVIEW THEM MULTIPLE TIMES SO 2189 01:16:51,840 --> 01:16:53,160 WE CAN ADD THOSE THINGS IN AS WE 2190 01:16:53,160 --> 01:16:58,320 GO. KEY QUESTION. IT IS 2191 01:16:58,320 --> 01:16:59,200 SOMETHING THIS WHOLE GROUP 2192 01:16:59,200 --> 01:17:00,880 SHOULD BE TALKING ABOUT. 2193 01:17:00,880 --> 01:17:02,720 >> I HOPE WE CAN DISCUSS IT MORE 2194 01:17:02,720 --> 01:17:05,520 AT THE PANEL DISCUSSION. KAREN 2195 01:17:05,520 --> 01:17:07,800 DID YOU TAKE YOUR NAME, -- HAND 2196 01:17:07,800 --> 01:17:09,240 DOWN. OKAY. SHOULD WE MOVE TO 2197 01:17:09,240 --> 01:17:12,880 THE PANEL THEN? DID YOU WANT THE 2198 01:17:12,880 --> 01:17:14,480 SAY SOMETHING KAREN? PANEL. 2199 01:17:14,480 --> 01:17:15,640 OKAY. 2200 01:17:15,640 --> 01:17:18,800 >> THANK YOU. SO I WOULD LIKE TO 2201 01:17:18,800 --> 01:17:25,360 INVITE MR. JOHNSON AND DR. 2202 01:17:25,360 --> 01:17:26,360 ZAGHLOUL TO JOIN US FOR THE 2203 01:17:26,360 --> 01:17:28,600 PANEL, I WILL INTRODUCE THEM AND 2204 01:17:28,600 --> 01:17:30,800 THEY CAN MAYBE SAY A WORD OR 2205 01:17:30,800 --> 01:17:32,920 TWO. SO MR. JAMES JOHNSON, THANK 2206 01:17:32,920 --> 01:17:36,560 YOU FOR BEING WITH US TODAY. IS 2207 01:17:36,560 --> 01:17:37,280 A PATIENT PARTICIPANT IN 2208 01:17:37,280 --> 01:17:38,840 RESEARCH STUDIES CONDUCTED AT 2209 01:17:38,840 --> 01:17:41,800 THE TNC BRAIN MACHINE INTERFACE 2210 01:17:41,800 --> 01:17:43,880 CENTER LED BY RICHARD ANDERSON 2211 01:17:43,880 --> 01:17:46,800 AT CAL TECH. OVER THE LAST THREE 2212 01:17:46,800 --> 01:17:49,000 YEARS, HE'S BEEN A LONG TERM 2213 01:17:49,000 --> 01:17:52,520 ACTIVE PARTICIPANT IN STUDIES 2214 01:17:52,520 --> 01:17:53,640 INVESTIGATING MOTOR ACTIVITY AND 2215 01:17:53,640 --> 01:17:54,840 MOTOR PLANNING ACTIVITY TO 2216 01:17:54,840 --> 01:17:55,760 UNDERSTAND HOW BRAIN PROCESS IT 2217 01:17:55,760 --> 01:17:58,200 IS WORLD. THANK YOU FOR JOINING 2218 01:17:58,200 --> 01:18:02,040 US, MR. JOHNSON. DR. KAREEM 2219 01:18:02,040 --> 01:18:06,360 ZAGHLOUL IS A SENIOR 2220 01:18:06,360 --> 01:18:07,040 INVESTIGATOR OF FUNCTIONAL 2221 01:18:07,040 --> 01:18:09,800 RESTORATIVE NEUROSURGEON SECTION 2222 01:18:09,800 --> 01:18:11,240 AT THE NINDS INTRAMURAL PROGRAM 2223 01:18:11,240 --> 01:18:13,880 AT THE NIH. HIS LAB FOCUSES ON 2224 01:18:13,880 --> 01:18:14,960 NEURAL MECHANISMS UNDERLYING 2225 01:18:14,960 --> 01:18:18,920 HUMAN COGNITIVE FUNCTION, DR.S 2226 01:18:18,920 --> 01:18:20,240 ZAGHLOUL RECEIVED HIS M.D. AND 2227 01:18:20,240 --> 01:18:21,840 Ph.D. DEGREES FROM THE 2228 01:18:21,840 --> 01:18:23,360 UNIVERSITY OF PENNSYLVANIA 2229 01:18:23,360 --> 01:18:25,320 COMPLETED A RESIDENCY IN 2230 01:18:25,320 --> 01:18:26,880 NEUROSURGERY AT PENN AND 2231 01:18:26,880 --> 01:18:28,560 COMPLETED CLINICAL FELLOWSHIP IN 2232 01:18:28,560 --> 01:18:30,200 EPILEPSY SURGERY AND DBS 2233 01:18:30,200 --> 01:18:31,680 SURGERY. THANK YOU SO MUCH FOR 2234 01:18:31,680 --> 01:18:34,480 JOINING US TODAY. I WANTED TO 2235 01:18:34,480 --> 01:18:35,920 START BY ASKING MR. JOHNSON IF 2236 01:18:35,920 --> 01:18:37,480 YOU WOULD LIKE TO SAY A FEW 2237 01:18:37,480 --> 01:18:39,000 WORDS OF INTRODUCTION BECAUSE 2238 01:18:39,000 --> 01:18:42,680 OUR OTHER TWO SPEAKERS OF DR. 2239 01:18:42,680 --> 01:18:47,160 GOERING AND FEINSINGER HAD A 2240 01:18:47,160 --> 01:18:48,720 CHANCE TO SPEAK SO I WILL LET 2241 01:18:48,720 --> 01:18:50,600 DR. JOHNSON AND ZAGHLOUL SAY A 2242 01:18:50,600 --> 01:18:52,320 FEW WORDS AND SEE IF ANYONE 2243 01:18:52,320 --> 01:18:53,880 WOULD LIKE THE ASK QUESTIONS AND 2244 01:18:53,880 --> 01:18:55,520 BEGIN THE DIALOGUE. 2245 01:18:55,520 --> 01:18:58,080 MR. JOHNSON, WOULD YOU LIKE TO 2246 01:18:58,080 --> 01:19:00,120 START? 2247 01:19:00,120 --> 01:19:01,240 >> WE CAN HEAR YOU FINE. THANK 2248 01:19:01,240 --> 01:19:03,720 YOU. 2249 01:19:03,720 --> 01:19:09,640 >> MY NAME IS JAMES, AND ACTIVE 2250 01:19:09,640 --> 01:19:14,880 PARTICIPANT IN THE STUDY BMI, 2251 01:19:14,880 --> 01:19:18,720 BRAIN MACHINE INTERFACE. MY 2252 01:19:18,720 --> 01:19:22,040 BACKGROUND IS RESPIRATORY 2253 01:19:22,040 --> 01:19:27,240 THERAPISTS AND I WAS INJURED IN 2254 01:19:27,240 --> 01:19:34,120 A ROLL OVER ACCIDENT IN 2017. I 2255 01:19:34,120 --> 01:19:37,000 WAS WENT THROUGH A LOT OF 2256 01:19:37,000 --> 01:19:40,040 THERAPY AND TOWARDS THE HINT IF 2257 01:19:40,040 --> 01:19:43,720 I STAY AT REHAB FACILITY, I WAS 2258 01:19:43,720 --> 01:19:46,680 APPROACHED BY ONE OF THE 2259 01:19:46,680 --> 01:19:49,320 PHYSICAL THERAPISTS WHO HAPPENED 2260 01:19:49,320 --> 01:19:54,480 TO BE COORDINATOR FOR 2261 01:19:54,480 --> 01:19:56,720 TECHNOLOGIES THAT INJURED 2262 01:19:56,720 --> 01:19:58,840 PATIENTS COULD USE, TO GET ALONG 2263 01:19:58,840 --> 01:20:02,160 IN THE WORLD. AND SHE ASKED IF I 2264 01:20:02,160 --> 01:20:03,840 WOULD BE INTERESTED IN 2265 01:20:03,840 --> 01:20:07,880 PARTICIPATING AT STUDY. KNOW 2266 01:20:07,880 --> 01:20:13,720 MUCH ABOUT STUDIES SO I ASK 2267 01:20:13,720 --> 01:20:16,360 INFORMATION ON -- ABLE TO 2268 01:20:16,360 --> 01:20:22,520 INTRODUCE ME TO TEAM AT CAL TECH 2269 01:20:22,520 --> 01:20:25,160 WORKING WITH DR. RICHARD 2270 01:20:25,160 --> 01:20:28,520 ANDERSON. BASICALLY TOLD ME 2271 01:20:28,520 --> 01:20:31,920 ABOUT STUDY, WHAT IT INVOLVED. 2272 01:20:31,920 --> 01:20:36,000 AND VERY MUCH WAS INTERESTED IN 2273 01:20:36,000 --> 01:20:38,800 THE STUDY BECAUSE AS A 2274 01:20:38,800 --> 01:20:43,000 RESPIRATORY THERAPIST, RN, I 2275 01:20:43,000 --> 01:20:49,600 WORKED IN NEUROLOGY DEPARTMENT. 2276 01:20:49,600 --> 01:20:51,840 SO I WAS MADE AWARE OF SOME 2277 01:20:51,840 --> 01:20:57,520 THINGS THAT ARE BEING DONE WITH 2278 01:20:57,520 --> 01:21:00,320 PATIENT WHO GOT INJURIES. SO I 2279 01:21:00,320 --> 01:21:02,440 THOUGHT WHY NOT. IT WOULD BE A 2280 01:21:02,440 --> 01:21:07,120 GREAT WAY FOR WHOM? TO 2281 01:21:07,120 --> 01:21:09,720 CONTRIBUTE STILL NOT ONLY AS 2282 01:21:09,720 --> 01:21:14,000 WHICH I IN ADDITION BUT AS 2283 01:21:14,000 --> 01:21:14,840 REGULAR JOE. 2284 01:21:14,840 --> 01:21:16,720 >> GREAT. WONDERFUL. AS WE GET 2285 01:21:16,720 --> 01:21:17,880 INTO THE DISCUSSION I WOULD LOVE 2286 01:21:17,880 --> 01:21:21,880 TO HEAR HOW SOME OF SARA'S 2287 01:21:21,880 --> 01:21:23,320 FINDINGS RESONATED WITH YOU IN 2288 01:21:23,320 --> 01:21:27,360 YOUR EXPERIENCE. DR. ZAGHLOUL 2289 01:21:27,360 --> 01:21:29,120 TELL US ABOUT YOUR PERSPECTIVE 2290 01:21:29,120 --> 01:21:29,320 HERE. 2291 01:21:29,320 --> 01:21:30,960 >> SURE. FIRST I WANT TO THANK 2292 01:21:30,960 --> 01:21:32,320 YOU GUYS FOR PUTTING THISSING TO 2293 01:21:32,320 --> 01:21:33,520 AND THIS HAS BEEN WONDERFUL SO 2294 01:21:33,520 --> 01:21:36,760 FAR AND REALLY GREAT. GREAT 2295 01:21:36,760 --> 01:21:39,880 TALKS AND IMPORTANT TOPIC. I 2296 01:21:39,880 --> 01:21:41,680 KNEW ABOUT ASHLEY'S PAPER BUT 2297 01:21:41,680 --> 01:21:43,880 SARA YOUR STUDY WAS QUITE 2298 01:21:43,880 --> 01:21:46,360 FASCINATING TO HEAR JUST THAT 2299 01:21:46,360 --> 01:21:47,880 PERSPECTIVE. SO JUST GIVE YOU A 2300 01:21:47,880 --> 01:21:51,640 SENSE OF WHO I AM, I'M A 2301 01:21:51,640 --> 01:21:53,720 NEUROSURGEON IN THE NIH 2302 01:21:53,720 --> 01:21:55,200 INTRAMURAL PROGRAM OF THE NIH 2303 01:21:55,200 --> 01:21:56,880 MOST OF MY SORT OF INVOLVEMENT 2304 01:21:56,880 --> 01:21:59,200 IN THIS PARTICULAR AREA REVOLVES 2305 01:21:59,200 --> 01:22:01,880 AROUND PATIENTS WHO ARE GETTING 2306 01:22:01,880 --> 01:22:04,440 INTRACRANIAL ELECTRODES AROUND 2307 01:22:04,440 --> 01:22:05,880 SEE INSURE MONITORS PATIENTS 2308 01:22:05,880 --> 01:22:07,200 WITH EPILEPSY AND OUR RESEARCH 2309 01:22:07,200 --> 01:22:08,920 THIS IS ONE OF THE FOUR 2310 01:22:08,920 --> 01:22:09,520 DIFFERENT AREAS THAT I THINK 2311 01:22:09,520 --> 01:22:10,880 ASHLEY MENTIONED OUR RESEARCH 2312 01:22:10,880 --> 01:22:14,920 WAS SPECIFICALLY ON 2313 01:22:14,920 --> 01:22:16,680 INVESTIGATING NEURAL SIGNALS WE 2314 01:22:16,680 --> 01:22:18,200 CAPTURE FROM ELECTRODES WHILE 2315 01:22:18,200 --> 01:22:19,840 PATIENTS ARE HERE IN THE 2316 01:22:19,840 --> 01:22:20,800 MONITORING PERIOD SO STANDARD 2317 01:22:20,800 --> 01:22:21,760 CLINICAL CARE TO ADDRESS 2318 01:22:21,760 --> 01:22:23,520 QUESTIONS WE THINK MIGHT BE 2319 01:22:23,520 --> 01:22:25,000 IMPORTANT FROM NEUROSCIENCE. SO 2320 01:22:25,000 --> 01:22:26,880 WE THINK ABOUT ISSUES QUITE A 2321 01:22:26,880 --> 01:22:28,360 BIT, WE HAVE NOT BEEN HEAVILY 2322 01:22:28,360 --> 01:22:30,360 INVOLVED IN BCI TECH BOARD BUT 2323 01:22:30,360 --> 01:22:32,240 WE HAVE TALK ABOUT AND THINK 2324 01:22:32,240 --> 01:22:34,280 ABOUT THOSE ISSUES AS WELL. WE 2325 01:22:34,280 --> 01:22:35,120 THINK THESE THINGS ARE VERY 2326 01:22:35,120 --> 01:22:37,480 IMPORTANT ISSUES AND I THINK 2327 01:22:37,480 --> 01:22:39,200 REALLY THE MAIN EMPHASIS WE TRY 2328 01:22:39,200 --> 01:22:40,400 TO AT LEAST CARRY WITH US 2329 01:22:40,400 --> 01:22:41,520 THROUGHOUT OUR WORK IS PUTTING 2330 01:22:41,520 --> 01:22:44,920 THE CLINICAL CARE AND PATIENT 2331 01:22:44,920 --> 01:22:46,200 FIRST. EVERYTHING ELSE BECOMES 2332 01:22:46,200 --> 01:22:47,720 SECONDARY TO THAT. SO WE TRY AS 2333 01:22:47,720 --> 01:22:49,360 MUCH AS POSSIBLE TO REVISIT 2334 01:22:49,360 --> 01:22:51,280 THOSE QUESTIONS OVER AND OVER 2335 01:22:51,280 --> 01:22:54,280 AGAIN FOR EVERY PATIENT IN TERMS 2336 01:22:54,280 --> 01:22:54,760 OF WHO WE ARE. 2337 01:22:54,760 --> 01:22:56,200 >> THANK YOU SO MUCH AND THANKS 2338 01:22:56,200 --> 01:22:59,400 FOR BEING WITH US. SO I WOULD 2339 01:22:59,400 --> 01:23:01,680 LIKE TO INVITE ANYONE TO RAISE 2340 01:23:01,680 --> 01:23:04,560 THEIR HAND AND TO BEGIN TO RAISE 2341 01:23:04,560 --> 01:23:06,000 QUESTIONS THERE WAS FODDER FOR 2342 01:23:06,000 --> 01:23:09,000 DISCUSSION THAT BOTH ASHLEY AND 2343 01:23:09,000 --> 01:23:11,960 SARA GAVE US AND I KNOW WE HAVE 2344 01:23:11,960 --> 01:23:13,120 SOME GENERAL QUESTIONS THAT I'M 2345 01:23:13,120 --> 01:23:14,880 GOING TO ASK NINA TO MAKE SURE 2346 01:23:14,880 --> 01:23:16,920 THEY GET PUT UP SO PEOPLE CAN 2347 01:23:16,920 --> 01:23:18,520 SEE THEM, GENERAL QUESTIONS THAT 2348 01:23:18,520 --> 01:23:19,520 MIGHT GUIDE OUR DISCUSSION BUT 2349 01:23:19,520 --> 01:23:24,040 WE DON'T HAVE TO STICK TO THOSE. 2350 01:23:24,040 --> 01:23:26,520 SO OF COURSE ONE GENERAL 2351 01:23:26,520 --> 01:23:28,800 QUESTION IS, DID -- IS ANYTHING 2352 01:23:28,800 --> 01:23:30,640 BEING MISSED? WE HAVE ALREADY 2353 01:23:30,640 --> 01:23:33,400 TALKED ABOUT A WHOLE BUNCH OF 2354 01:23:33,400 --> 01:23:35,880 ISSUES BOTH IN INTRACRANIAL 2355 01:23:35,880 --> 01:23:37,320 INTEROPERATIVE RESEARCH AND ALSO 2356 01:23:37,320 --> 01:23:41,080 IN THE BCI INTERACTIVE LONG TERM 2357 01:23:41,080 --> 01:23:42,640 STUDIES, DID WE MISS ANY ISSUES 2358 01:23:42,640 --> 01:23:44,600 ARE THERE ISSUES THE REST OF YOU 2359 01:23:44,600 --> 01:23:49,120 THINK OR THOSE WHO SPOKE THINK 2360 01:23:49,120 --> 01:23:50,120 WE DIDN'T -- WE HAVEN'T HEARD 2361 01:23:50,120 --> 01:23:52,600 THAT. 2362 01:23:52,600 --> 01:23:55,040 >> CAN I JUST TOUCH ON SOMETHING 2363 01:23:55,040 --> 01:23:55,160 -- 2364 01:23:55,160 --> 01:23:56,600 >> PLEASE. 2365 01:23:56,600 --> 01:24:02,960 >> SARA MENTIONED. WITH REGARDS 2366 01:24:02,960 --> 01:24:07,280 TO COMPENSATION FOR PARTICIPANTS 2367 01:24:07,280 --> 01:24:11,600 I REALLY DO FOR NEW PERSON, 2368 01:24:11,600 --> 01:24:13,600 DIDN'T GET INTO THE STUDY FOR 2369 01:24:13,600 --> 01:24:18,960 ANY TYPE OF COMPENSATION, SO 2370 01:24:18,960 --> 01:24:22,120 THAT WAS JUST ADDED PLUS MONEY, 2371 01:24:22,120 --> 01:24:23,480 REALLY FOR ME IT WAS MORE ALONG 2372 01:24:23,480 --> 01:24:31,120 THE LINES OF WHAT CAN I DO ABOUT 2373 01:24:31,120 --> 01:24:34,320 THE PLACE I'M IN HOW CAN I BE 2374 01:24:34,320 --> 01:24:39,640 SOMEONE WHO HAS WORK OR VALUE, 2375 01:24:39,640 --> 01:24:44,720 ESPECIALLY HAVING A CAREER SUCH 2376 01:24:44,720 --> 01:24:49,440 AS MINE IN MEDICAL FIELD AND 2377 01:24:49,440 --> 01:24:50,360 UNDERSTANDING WHAT COMES NEXT 2378 01:24:50,360 --> 01:24:55,640 FROM THE BEGINNING OF THE INJURY 2379 01:24:55,640 --> 01:25:00,280 ALL THE WAY UP UNTIL NOW EVEN, I 2380 01:25:00,280 --> 01:25:02,240 UNDERSTOOD EVERY STEP COMING TO 2381 01:25:02,240 --> 01:25:07,760 -- EVERY STEP OF THE WAY. WHEN 2382 01:25:07,760 --> 01:25:11,880 THAT QUESTION WAS PRESENTED TO 2383 01:25:11,880 --> 01:25:12,680 ME WHETHER OR NOT I WOULD BE 2384 01:25:12,680 --> 01:25:17,160 INTERESTED IN A STUDY, I TOOK IT 2385 01:25:17,160 --> 01:25:22,280 AS MY OPPORTUNITY TO CONTINUE TO 2386 01:25:22,280 --> 01:25:23,920 CONTRIBUTE TO MEDICINE IN 2387 01:25:23,920 --> 01:25:27,480 GENERAL AND TO THE WELL BEING OF 2388 01:25:27,480 --> 01:25:29,880 PEOPLE OTHER THAN MYSELF WHO 2389 01:25:29,880 --> 01:25:36,920 GOING THROUGH SIMILAR CRISES. SO 2390 01:25:36,920 --> 01:25:42,080 AS FAR AS COMPENSATION THAT IS 2391 01:25:42,080 --> 01:25:44,400 GREAT, I UNDERSTAND WHAT THAT 2392 01:25:44,400 --> 01:25:45,320 PARTICULAR PERSON WAS TALKING 2393 01:25:45,320 --> 01:25:50,840 ABOUT IN TERMS OF MULTI-MILLION 2394 01:25:50,840 --> 01:25:57,680 DOLLAR PROJECTS AND SEEMS WHAT 2395 01:25:57,680 --> 01:25:59,040 AMOUNTS TO BE PENNIES ON THE 2396 01:25:59,040 --> 01:25:59,880 DOLLAR THAT THE PARTICIPANTS ARE 2397 01:25:59,880 --> 01:26:06,440 GETTING. AND I GET THAT VERY 2398 01:26:06,440 --> 01:26:08,320 MUCH. BUT FOR ME PERSONALLY LIKE 2399 01:26:08,320 --> 01:26:10,320 I SAID, IT WAS MORE ALONG THE 2400 01:26:10,320 --> 01:26:14,160 LINES OF WHAT CAN I DO IN MY 2401 01:26:14,160 --> 01:26:17,080 STATE OF ME HOW CAN I CONTRIBUTE 2402 01:26:17,080 --> 01:26:22,960 LIKE I WAS CONTRIBUTING BEFORE 2403 01:26:22,960 --> 01:26:29,520 OR GRATIFYING LEVEL. I FIND 2404 01:26:29,520 --> 01:26:30,560 RESEARCH TO BE HAPPENING FOR ME. 2405 01:26:30,560 --> 01:26:31,880 >> THANK YOU SO MUCH FOR THAT 2406 01:26:31,880 --> 01:26:33,960 COMMENT. I WANT TO ASK YOU 2407 01:26:33,960 --> 01:26:35,880 FOLLOW-UP QUESTION AN MAYBE SARA 2408 01:26:35,880 --> 01:26:38,440 HAS SOME THINGS TO SAY ABOUT 2409 01:26:38,440 --> 01:26:41,160 THIS. I THINK A LOT OF PEOPLE 2410 01:26:41,160 --> 01:26:42,520 FEEL LIKE THEY ARE -- AND THEY 2411 01:26:42,520 --> 01:26:45,440 ARE, MAKING A HUGE CONTRIBUTION 2412 01:26:45,440 --> 01:26:46,960 TO SCIENCE BY PARTICIPATING IN 2413 01:26:46,960 --> 01:26:50,520 STUDIES OF THIS NATURE. I WONDER 2414 01:26:50,520 --> 01:26:51,720 ABOUT THE -- AN COMPENSATION IS 2415 01:26:51,720 --> 01:26:53,960 A PART OF IT BUT SARA MENTIONED 2416 01:26:53,960 --> 01:26:54,880 SOMETHING BIGGER THAN 2417 01:26:54,880 --> 01:26:57,160 COMPENSATION. I THINK YOU 2418 01:26:57,160 --> 01:27:01,880 CALLED IT FAIR RECIPROCITY WHICH 2419 01:27:01,880 --> 01:27:03,520 INCLUDED RECOGNITION, 2420 01:27:03,520 --> 01:27:04,840 RECOGNITION OF YOUR 2421 01:27:04,840 --> 01:27:07,760 CONTRIBUTION. MR. JOHNSON HOW 2422 01:27:07,760 --> 01:27:09,840 IMPORTANT IS THAT? 2423 01:27:09,840 --> 01:27:14,480 >> VERY IMPORTANT BECAUSE 2424 01:27:14,480 --> 01:27:17,040 EVERYBODY WANTS TO BE RECOGNIZED 2425 01:27:17,040 --> 01:27:21,240 FOR WHAT THEY DO. THAT IS JUST 2426 01:27:21,240 --> 01:27:24,360 WHO WE ARE AS HUMAN BEINGS. WHAT 2427 01:27:24,360 --> 01:27:29,800 I APPRECIATED FROM DR. 2428 01:27:29,800 --> 01:27:32,720 ANDERSON'S TEAM WAS THAT WAS 2429 01:27:32,720 --> 01:27:39,560 ACTUALLY INCLUDED AND CONTRACT 2430 01:27:39,560 --> 01:27:43,640 DID I WANT TO BE RECOGNIZED FOR 2431 01:27:43,640 --> 01:27:46,480 MY CONTRIBUTION ANY STUDIES OR 2432 01:27:46,480 --> 01:27:48,480 PAPERS OR OR IF THERE ARE ANY 2433 01:27:48,480 --> 01:27:49,880 JOURNALS OR ANYTHING OF THE 2434 01:27:49,880 --> 01:27:53,400 NATURE, THEN I WANT TO BE 2435 01:27:53,400 --> 01:27:55,080 RECOGNIZED, I SAID ABSOLUTELY 2436 01:27:55,080 --> 01:27:57,840 YES AND I FEEL THAT ANYBODY MANY 2437 01:27:57,840 --> 01:27:59,280 MY SITUATION WOULD WANT TO BE 2438 01:27:59,280 --> 01:28:06,760 RECOGNIZED. YEAH. 2439 01:28:06,760 --> 01:28:08,880 >> GREAT. SARA OR OTHERS ANYONE 2440 01:28:08,880 --> 01:28:09,600 SAY ANYTHING ABOUT THAT? 2441 01:28:09,600 --> 01:28:11,880 >> I SO APPRECIATE WHAT YOU ARE 2442 01:28:11,880 --> 01:28:13,320 SAYING, JAMES. AND I THINK 2443 01:28:13,320 --> 01:28:19,120 SOMEBODY ELSE THAT WE TALK TO 2444 01:28:19,120 --> 01:28:20,480 INTERESTING THE PRONOUNS. WE 2445 01:28:20,480 --> 01:28:23,080 PUBLISHED A PAPER WE DID THIS 2446 01:28:23,080 --> 01:28:23,960 BECAUSE SHE FELT LIKE SHE WAS 2447 01:28:23,960 --> 01:28:26,600 PART OF THAT TEAM, RECOGNIZED AS 2448 01:28:26,600 --> 01:28:28,160 A EQUALLY CONTRIBUTING MEMBER 2449 01:28:28,160 --> 01:28:29,480 WHO HAD DONE SOMETHING REALLY 2450 01:28:29,480 --> 01:28:32,840 IMPORTANT IN THE WORLD. I GUESS 2451 01:28:32,840 --> 01:28:34,720 I THINK ONE OF THE CONCERNS 2452 01:28:34,720 --> 01:28:37,280 WOULD BE HOW WE MAKE SURE HA 2453 01:28:37,280 --> 01:28:38,520 THAT KIND OF RELATIONSHIP IS 2454 01:28:38,520 --> 01:28:39,720 ALWAYS GOING TO BE PART OF THE 2455 01:28:39,720 --> 01:28:42,480 BAY, ESPECIALLY FOR THESE LONG 2456 01:28:42,480 --> 01:28:44,320 TERM VERY INTENSIVE HIGHLY 2457 01:28:44,320 --> 01:28:45,960 INTERACTIVE STUDIES THAT IT IS 2458 01:28:45,960 --> 01:28:47,960 ALWAYS THERE. I GUESS ON THE 2459 01:28:47,960 --> 01:28:48,920 COMPENSATION QUESTION I DO THINK 2460 01:28:48,920 --> 01:28:50,680 PEOPLE ARE GOING TO BE 2461 01:28:50,680 --> 01:28:53,840 DIFFERENTLY POSITIONED RELATIVE 2462 01:28:53,840 --> 01:28:55,360 TO THIS. ONE OF THE THINGS THAT 2463 01:28:55,360 --> 01:28:58,120 COMES TO MIND I WAS HAVING THIS 2464 01:28:58,120 --> 01:29:01,560 CONVERSATION WITH THE PAST GRAD 2465 01:29:01,560 --> 01:29:03,800 WHO HAS BEEN ADJUNCTS TEACHING 2466 01:29:03,800 --> 01:29:05,160 AND APPARENTLY OUR INSTITUTION 2467 01:29:05,160 --> 01:29:06,800 HAS MADE A RULE THAT YOU ARE NOT 2468 01:29:06,800 --> 01:29:10,440 ALLOWED TO TEACH FOR FREE. SHE 2469 01:29:10,440 --> 01:29:12,400 WANTS TO TEACH FOR FREE BECAUSE 2470 01:29:12,400 --> 01:29:14,320 SHE HAS A RELATIONSHIP WITH 2471 01:29:14,320 --> 01:29:16,720 CERTAIN STUDENTS THAT WANT 2472 01:29:16,720 --> 01:29:18,760 INDEPENDENT STUDY IN HER AREA OF 2473 01:29:18,760 --> 01:29:21,840 EXPERTISE. BUT I UNDERSTAND THE 2474 01:29:21,840 --> 01:29:22,520 UNIVERSITY POSITION AS WELL, 2475 01:29:22,520 --> 01:29:25,400 THERE IS A KIND OF EXPLOITATION 2476 01:29:25,400 --> 01:29:28,320 THAT GOES ON EVEN IF YOU HAVE 2477 01:29:28,320 --> 01:29:30,880 VOLUNTEERS WHO ARE WILLING TO DO 2478 01:29:30,880 --> 01:29:33,360 THAT. SO I WANT TO RECOGNIZE 2479 01:29:33,360 --> 01:29:35,480 INCREDIBLE VALUE OF DOING 2480 01:29:35,480 --> 01:29:37,320 SOMETHING FOR THE SAKE OF 2481 01:29:37,320 --> 01:29:38,240 MEANINGFUL PARTICIPATION AND 2482 01:29:38,240 --> 01:29:40,960 FEELING LIKE YOU ARE MAKING A 2483 01:29:40,960 --> 01:29:42,640 DIFFERENCE. THAT SHOULD NEVER BE 2484 01:29:42,640 --> 01:29:44,720 -- I DON'T WANT IT TO BE JUST A 2485 01:29:44,720 --> 01:29:46,800 JOKE. BUT I ALSO THINK THERE IS 2486 01:29:46,800 --> 01:29:50,320 A WAY WHICH FAIR COMPENSATION 2487 01:29:50,320 --> 01:29:53,120 FOR THE TIME IS PROBABLY 2488 01:29:53,120 --> 01:29:53,880 SOMETHING WE SHOULD TALK ABOUT 2489 01:29:53,880 --> 01:29:55,360 BECAUSE OF INTERACTIVITY AND 2490 01:29:55,360 --> 01:29:57,520 EXTENT OF IT IT FEELS MUCH MORE 2491 01:29:57,520 --> 01:30:00,160 LIKE A KIND OF PART TIME JOB 2492 01:30:00,160 --> 01:30:06,280 THAN OTHER CLINICAL STUDIES. 2493 01:30:06,280 --> 01:30:08,440 >> THREE HANDS. GO I A HEAD, 2494 01:30:08,440 --> 01:30:09,240 JAMES, DID YOU WANT TO RESPOND? 2495 01:30:09,240 --> 01:30:12,280 >> WHAT I HAVE TO SAY TO THAT IS 2496 01:30:12,280 --> 01:30:17,520 EVERYONE IS COMING FOR A 2497 01:30:17,520 --> 01:30:22,960 DIFFERENT -- I GUESS FINANCIAL 2498 01:30:22,960 --> 01:30:27,040 SITUATION WOULD BE UNFORTUNATE 2499 01:30:27,040 --> 01:30:34,560 ALL THE THINGS I DO OR I PAID 2500 01:30:34,560 --> 01:30:35,880 FOR BY MY CAREER NOW AS A 2501 01:30:35,880 --> 01:30:41,520 BUSINESS OWNER. I CAN UNDERSTAND 2502 01:30:41,520 --> 01:30:46,000 HOW OTHERS WOULD FEEL THAT WAY, 2503 01:30:46,000 --> 01:30:47,880 BECAUSE PARTICIPATING IN THESE 2504 01:30:47,880 --> 01:30:53,960 STUDIES IS EXTREMELY TAXING ON 2505 01:30:53,960 --> 01:30:56,000 THE PARTICIPANTS. LITERALLY WHEN 2506 01:30:56,000 --> 01:30:59,360 I LEAVE A SESSION, I JUST WANT 2507 01:30:59,360 --> 01:31:03,480 TO SLEEP. I JUST WANT TO HIT THE 2508 01:31:03,480 --> 01:31:07,880 BED. IT IS LIKE EXERCISING A 2509 01:31:07,880 --> 01:31:09,360 MUSCLE THAT HASN'T WORKED OUT IN 2510 01:31:09,360 --> 01:31:13,320 MONTHS. I THINK YOU GO BACK TO 2511 01:31:13,320 --> 01:31:14,520 THE GYM -- AND THEN YOU GO BACK 2512 01:31:14,520 --> 01:31:20,280 TO THE GYM. YOU HAVE TO BUILD UP 2513 01:31:20,280 --> 01:31:20,880 YOUR STAMINA WITH EACH SESSION 2514 01:31:20,880 --> 01:31:23,680 TO THE POINT WHERE YOU CAN 2515 01:31:23,680 --> 01:31:27,880 ACTUALLY DO TASKS WITHOUT IT 2516 01:31:27,880 --> 01:31:31,160 BEING SO DIFFICULT WHILE DOING 2517 01:31:31,160 --> 01:31:32,800 SOMETHING SO DRAINING. I GET 2518 01:31:32,800 --> 01:31:35,480 THAT, IT IS HARD -- IT IS 2519 01:31:35,480 --> 01:31:36,400 DIFFICULT SOMETIMES BECAUSE WE 2520 01:31:36,400 --> 01:31:42,720 DO RELY ON -- HEAVILY ON OUR 2521 01:31:42,720 --> 01:31:45,160 CAREGIVERS. AND WE DO HAVE TO 2522 01:31:45,160 --> 01:31:47,080 COMPENSATE OUR CAREGIVERS. FOR 2523 01:31:47,080 --> 01:31:53,520 THEIR TIME. AND FOR US TO -- THE 2524 01:31:53,520 --> 01:32:01,000 STUDIES. FOR ME PERSONALLY, PUT 2525 01:32:01,000 --> 01:32:05,600 IT THIS WAY WAY. WE HAVE BEEN DOING 2526 01:32:05,600 --> 01:32:10,320 THIS FOR THREE YEARS PLUS NOW 2527 01:32:10,320 --> 01:32:12,880 AND THERE ARE THINGS THAT WE 2528 01:32:12,880 --> 01:32:16,880 DISCOVERED WHILE DOING THIS IS 2529 01:32:16,880 --> 01:32:21,600 JUST ABSOLUTELY AMAZING. I WANT 2530 01:32:21,600 --> 01:32:24,240 VERY MUCH TO BE PART OF THAT. 2531 01:32:24,240 --> 01:32:29,960 ONE EXAMPLE IS THEY WANT TO SEE 2532 01:32:29,960 --> 01:32:33,440 HOW I WOULD BE ABLE TO MANAGE 2533 01:32:33,440 --> 01:32:41,000 CONTROLS, AND SAY LIKE A VIDEO 2534 01:32:41,000 --> 01:32:42,680 GAME. ASKING WHAT KIND OF VIDEO 2535 01:32:42,680 --> 01:32:44,880 GAMES DO YOU LIKE. I SAID WELL, 2536 01:32:44,880 --> 01:32:47,120 I LIKE FIRST PERSON SHOOTER 2537 01:32:47,120 --> 01:32:51,400 GAMES LIKE CALL OF DUTY AND 2538 01:32:51,400 --> 01:32:57,040 THOSE TYPE OF TITLES, RIGHT? SO 2539 01:32:57,040 --> 01:32:59,720 THEY WERE ABLE TO GET IN THE 2540 01:32:59,720 --> 01:33:01,040 GAME THAT WAS -- THAT HAD AN 2541 01:33:01,040 --> 01:33:03,880 OPEN SOURCE CODE TO WHERE THEY 2542 01:33:03,880 --> 01:33:07,000 COULD WRITE CODE THAT I WOULD BE 2543 01:33:07,000 --> 01:33:13,320 ABLE TO USE IN MY THOUGHTS. SO I 2544 01:33:13,320 --> 01:33:15,880 LITERALLY BLAME VIDEO GAME LIKE 2545 01:33:15,880 --> 01:33:19,760 CALL OF DUTY FIRST PERSON 2546 01:33:19,760 --> 01:33:22,720 SHOOTER, JUST BY COMPLETELY 2547 01:33:22,720 --> 01:33:24,160 CONTROLLING THAT WITH MY 2548 01:33:24,160 --> 01:33:27,000 THOUGHTS. AND THOSE GAMES ARE 2549 01:33:27,000 --> 01:33:31,440 PRETTY INTENSE, THEY ARE VERY 2550 01:33:31,440 --> 01:33:32,960 INTRICATE WITH THE GRAPHICS AND 2551 01:33:32,960 --> 01:33:36,640 MOVEMENT AND CONTROL, IF ANYONE 2552 01:33:36,640 --> 01:33:38,080 HERE HAS EVER PLAYED THOSE 2553 01:33:38,080 --> 01:33:42,760 GAMES. SO THE FACT THAT I'M ABLE 2554 01:33:42,760 --> 01:33:46,880 TO IMAGINE I'M HOLDING A 2555 01:33:46,880 --> 01:33:47,680 PLAYSTATION CONTROLLER IN MY 2556 01:33:47,680 --> 01:33:51,960 HAND AND THEN THE COMPUTER IS 2557 01:33:51,960 --> 01:33:56,200 ABLE TO DIFFERENTIATE WHICH 2558 01:33:56,200 --> 01:33:58,880 NEURAL PATHWAYS ARE BEING USED, 2559 01:33:58,880 --> 01:34:07,120 IN MY THOUGHTS OR IN MY BRAIN TO 2560 01:34:07,120 --> 01:34:09,880 ALLOW ME TO MAKE THAT -- USE 2561 01:34:09,880 --> 01:34:14,560 THOSE CONTROLS. HERE IS ANOTHER 2562 01:34:14,560 --> 01:34:15,680 THING. I DON'T KNOW IF I'M 2563 01:34:15,680 --> 01:34:18,320 ALLOWED TO SAY THIS, BUT A 2564 01:34:18,320 --> 01:34:20,560 PARTICULAR MOTOR COMPANY, CAR 2565 01:34:20,560 --> 01:34:25,320 COMPANY, APPROACHED THE PROJECT 2566 01:34:25,320 --> 01:34:28,800 AND THEY ARE INTERESTED IN 2567 01:34:28,800 --> 01:34:35,160 HAVING ME DRIVE A VEHICLE, 2568 01:34:35,160 --> 01:34:37,440 GETTING MY THOUGHTS THEY WERE 2569 01:34:37,440 --> 01:34:39,360 ABLE THE SEE HOW WELL MY CONTROL 2570 01:34:39,360 --> 01:34:40,960 WAS IN THE GAMING ENVIRONMENT SO 2571 01:34:40,960 --> 01:34:48,440 THEY DEVELOPED A SIMULATOR AND 2572 01:34:48,440 --> 01:34:51,080 SENT IT DOWN TO THE LAB AND I 2573 01:34:51,080 --> 01:34:54,720 WAS ABLE TO CONTROL THE CAR, 2574 01:34:54,720 --> 01:34:55,920 CONTROL THE VEHICLE AND 2575 01:34:55,920 --> 01:35:02,520 SIMULATOR AS WELL. DURING OUR 2576 01:35:02,520 --> 01:35:03,560 FIRST STAGES THREE YEARS IS NOT 2577 01:35:03,560 --> 01:35:09,160 A LOT OF TIME, BUT IN THAT THREE 2578 01:35:09,160 --> 01:35:10,600 YEARS WE HAVE ACCOMPLISHED A 2579 01:35:10,600 --> 01:35:14,800 LOT. I SAID WE OFTEN BECAUSE 2580 01:35:14,800 --> 01:35:16,720 THEY REALLY DO MAKE ME FEEL LIKE 2581 01:35:16,720 --> 01:35:23,520 I AM PART OF THAT TEAM. THAT IS 2582 01:35:23,520 --> 01:35:23,880 EVERYTHING TO ME. 2583 01:35:23,880 --> 01:35:26,160 >> GREAT. THANK YOU. I SEE 2584 01:35:26,160 --> 01:35:29,600 WINSTON AND THEN SAMIR. 2585 01:35:29,600 --> 01:35:31,720 >> PERSONALLY I WANT TO SAY 2586 01:35:31,720 --> 01:35:34,320 HAVING THIS PERSPECTIVE OF 2587 01:35:34,320 --> 01:35:35,520 RESEARCH PARTICIPATION HERE IS 2588 01:35:35,520 --> 01:35:38,560 REALLY WONDERFUL AND GREAT TO 2589 01:35:38,560 --> 01:35:40,600 HEAR, JUST DIRECT EXPERIENCE. I 2590 01:35:40,600 --> 01:35:41,960 WANTED TO GO BACK, I WAS 2591 01:35:41,960 --> 01:35:43,760 THINKING ABOUT THE RELATIONSHIP 2592 01:35:43,760 --> 01:35:47,600 BETWEEN ASHLEY AND SARA'S 2593 01:35:47,600 --> 01:35:49,600 DISCUSSIONS. IN OUR WORK WE HAVE 2594 01:35:49,600 --> 01:35:51,120 A DISTINCT THAT MIGHT BE HELPFUL 2595 01:35:51,120 --> 01:35:52,920 BECAUSE IT SEEMS LIKE THERE'S 2596 01:35:52,920 --> 01:35:53,560 CERTAIN CONSIDERATIONS APPLIED 2597 01:35:53,560 --> 01:35:55,080 TO THE STUDIES ASHLEY WAS 2598 01:35:55,080 --> 01:35:56,160 DISCUSSING THAT DON'T APPLY TO 2599 01:35:56,160 --> 01:35:58,480 SOME OF THE STUDIES SARA IS 2600 01:35:58,480 --> 01:35:59,880 DISCUSSING VICE VERSA. IN SOME 2601 01:35:59,880 --> 01:36:01,760 OF OUR WORK WE DISTINGUISH 2602 01:36:01,760 --> 01:36:03,440 BETWEEN OPPORTUNITIES STUDIES 2603 01:36:03,440 --> 01:36:05,240 WHERE SOMEBODY IS RECEIVING 2604 01:36:05,240 --> 01:36:06,880 NEUROSURGERY FOR CLINICAL 2605 01:36:06,880 --> 01:36:08,200 INDICATION, THEN THERE IS AN 2606 01:36:08,200 --> 01:36:10,680 OPPORTUNITY TO USE MORE BASIC 2607 01:36:10,680 --> 01:36:14,160 NEUROSCIENCE IN THE COURSE OF 2608 01:36:14,160 --> 01:36:16,120 PROCEDURE OR USING DEVICE 2609 01:36:16,120 --> 01:36:17,680 IMPLANTED FOR CLINICAL 2610 01:36:17,680 --> 01:36:19,680 INDICATION, FOR ESTABLISHED 2611 01:36:19,680 --> 01:36:20,880 CLINICAL INDICATION AND 2612 01:36:20,880 --> 01:36:22,920 DISTINGUISHING THOSE FROM 2613 01:36:22,920 --> 01:36:24,800 STUDIES WHICH THE NEUROSURGERY 2614 01:36:24,800 --> 01:36:25,720 IS OPTIONAL FROM A CLINICAL 2615 01:36:25,720 --> 01:36:27,840 POINT OF VIEW AND IT IS DONE FOR 2616 01:36:27,840 --> 01:36:30,720 THE SAKE OF DOING WHAT IS IN 2617 01:36:30,720 --> 01:36:32,240 MANY CASES LONG TERM RESEARCH 2618 01:36:32,240 --> 01:36:34,440 STUDY. SO I'M OFFERING THIS 2619 01:36:34,440 --> 01:36:37,400 DISTINCT WE WORKED ON, I'M 2620 01:36:37,400 --> 01:36:39,240 WONDERING WHO MIGHT BE USEFUL 2621 01:36:39,240 --> 01:36:41,120 HERE BECAUSE CONCERNS ASHLEY 2622 01:36:41,120 --> 01:36:42,480 RAISED H NEAR PAPER IN THE GROUP 2623 01:36:42,480 --> 01:36:44,120 PAPER ABOUT PRESERVING THE 2624 01:36:44,120 --> 01:36:45,560 INTEGRITY OF CLINICAL SPACE OR 2625 01:36:45,560 --> 01:36:47,400 PARTICULAR CONCERNS ABOUT 2626 01:36:47,400 --> 01:36:50,320 VOLUNTARINESS ARE ESPECIALLY 2627 01:36:50,320 --> 01:36:52,680 HUGE WHEN PATIENT PRESENTING FOR 2628 01:36:52,680 --> 01:36:54,240 INDICATED NEUROSURGICAL 2629 01:36:54,240 --> 01:36:54,960 PROCEDURE AND SOMEBODY IS 2630 01:36:54,960 --> 01:36:57,800 OFFERING TO IN ADDITION CONDUCT 2631 01:36:57,800 --> 01:36:59,960 BASIC NEUROSCIENTIFIC RESEARCH 2632 01:36:59,960 --> 01:37:02,840 AS A COURSE. AND THOSE KINDS OF 2633 01:37:02,840 --> 01:37:03,840 CONSIDERATIONS COME UP A LITTLE 2634 01:37:03,840 --> 01:37:05,800 BIT DIFFERENTLY LIKE SARA WAS 2635 01:37:05,800 --> 01:37:07,360 DISCUSSING IN CASE OF PATIENT 2636 01:37:07,360 --> 01:37:10,520 WHO MADE THE DECISION TO SIGN UP 2637 01:37:10,520 --> 01:37:15,120 ENTIRELY VOLUNTARY WAY FOR BRAIN 2638 01:37:15,120 --> 01:37:16,200 SURGERY, THEIR FAMILY WAS A 2639 01:37:16,200 --> 01:37:18,520 LITTLE SKEPTICAL ABOUT. 2640 01:37:18,520 --> 01:37:20,200 PRECISELY BECAUSE IT WASN'T A 2641 01:37:20,200 --> 01:37:21,560 CLINICALLY INDICATED SURGERY. 2642 01:37:21,560 --> 01:37:22,920 SIMILARLY SOME OF THE CONCERNS 2643 01:37:22,920 --> 01:37:25,000 RELATED TO COMPENSATION OR 2644 01:37:25,000 --> 01:37:29,120 ACCESS TO DEVICE AFTER TRIAL 2645 01:37:29,120 --> 01:37:31,440 THOSE DON'T COME UP IN THE SAME 2646 01:37:31,440 --> 01:37:34,160 WAY FOR THESE KINDS OF BASIC 2647 01:37:34,160 --> 01:37:35,320 SCIENCE OPPORTUNITY STUDIES 2648 01:37:35,320 --> 01:37:35,960 WHERE IT IS NOT NECESSARILY 2649 01:37:35,960 --> 01:37:38,800 SOMETHING PEOPLE ARE USING. 2650 01:37:38,800 --> 01:37:42,320 JUST A POINT THAT OCCURRED IN 2651 01:37:42,320 --> 01:37:44,640 TERMS OF PLACES WHERE 2652 01:37:44,640 --> 01:37:47,680 CONSIDERINGS ARE A LITTLE BIT 2653 01:37:47,680 --> 01:37:50,440 DIFFERENT AND DON'T HAVE TO USE 2654 01:37:50,440 --> 01:37:51,960 MY DISTINCT WE CAN COME UP WITH 2655 01:37:51,960 --> 01:37:54,200 A DIFFERENCE WORD, BUT THESE 2656 01:37:54,200 --> 01:37:55,440 DIFFERENT RESEARCH SETTINGS THAT 2657 01:37:55,440 --> 01:37:57,640 SOME WAYS RAISE THE DIFFERENT 2658 01:37:57,640 --> 01:37:58,760 KINDS OF CONCERNS. 2659 01:37:58,760 --> 01:38:01,080 >> HELP. , WINSTON. ONE 2660 01:38:01,080 --> 01:38:03,400 QUESTION BEFORE I TURN TO SAMIR. 2661 01:38:03,400 --> 01:38:05,680 IS THERE EVER COMPENSATION IN 2662 01:38:05,680 --> 01:38:06,840 INTRACRANIAL -- THE ONES THAT 2663 01:38:06,840 --> 01:38:08,120 ARE DONE IN THE MIDDLE OF A 2664 01:38:08,120 --> 01:38:10,600 CLINICAL SITUATION? 2665 01:38:10,600 --> 01:38:12,880 >> I THINK THERE ARE ONES THAT 2666 01:38:12,880 --> 01:38:15,520 SHARE SOME FEATURES OF BOTH. A 2667 01:38:15,520 --> 01:38:17,840 LOT OF ONES THAT ARE DONE MANY 2668 01:38:17,840 --> 01:38:19,520 THE CLINICAL SETTING ARE VERY 2669 01:38:19,520 --> 01:38:21,480 SHORT TERM SO IT IS JUST IN -- 2670 01:38:21,480 --> 01:38:22,240 WHEN SOMEBODY IS IN THE 2671 01:38:22,240 --> 01:38:24,680 OPERATING ROOM OR EPILEPSY 2672 01:38:24,680 --> 01:38:26,120 MONITORING UNIT ASHLEY MENTIONED 2673 01:38:26,120 --> 01:38:27,240 VERY INTERESTING STUDIES THAT 2674 01:38:27,240 --> 01:38:29,920 ARE BEING DONE WITH THE 2675 01:38:29,920 --> 01:38:30,760 NEUROPIECE DEVICE WHERE PEOPLE 2676 01:38:30,760 --> 01:38:32,520 ARE IMPLANTED WITH CLINICALLY 2677 01:38:32,520 --> 01:38:34,680 INDICATED DEVICE FOR EPILEPSY 2678 01:38:34,680 --> 01:38:35,960 BUT BECAUSE THIS DEVICE IS THERE 2679 01:38:35,960 --> 01:38:37,640 BECOMES AN OPPORTUNITY FOR 2680 01:38:37,640 --> 01:38:39,440 LONGER TERM STUDIES. SO IT HAS 2681 01:38:39,440 --> 01:38:42,320 SOME OF THE FEATURES THAT SARA 2682 01:38:42,320 --> 01:38:44,320 WAS TALKING ABOUT IN TERMS OF 2683 01:38:44,320 --> 01:38:46,320 THE DEVICES IMPLANTED FOR 2684 01:38:46,320 --> 01:38:48,520 CLINICAL INDICATION BUT SOMEBODY 2685 01:38:48,520 --> 01:38:50,120 MIGHT BE COMING AT LAB MULTIPLE 2686 01:38:50,120 --> 01:38:52,880 TIMES A WEEK, IN LONG TERM 2687 01:38:52,880 --> 01:38:55,200 BASIS. SO IT DOES HAVE THAT 2688 01:38:55,200 --> 01:38:57,320 LONGER TERM COMPONENT COMPONENT. I DON'T 2689 01:38:57,320 --> 01:38:59,560 KNOW THE DETAILS OF THAT STUDY, 2690 01:38:59,560 --> 01:39:02,360 BUT THAT WOULD BE AN EXAMPLE OF 2691 01:39:02,360 --> 01:39:04,280 AGAIN DEVICE IMPLANTED FOR 2692 01:39:04,280 --> 01:39:05,280 CLINICAL INDICATION THAT 2693 01:39:05,280 --> 01:39:06,720 PROVIDES OPPORTUNITY TO ASK 2694 01:39:06,720 --> 01:39:07,880 RESEARCH QUESTIONS THAT ARE IN 2695 01:39:07,880 --> 01:39:10,920 MANY CASES COMPLETELY 2696 01:39:10,920 --> 01:39:12,600 INDEPENDENT OF THE CLINICAL 2697 01:39:12,600 --> 01:39:14,240 REASON IMPLANTING DEVICE. 2698 01:39:14,240 --> 01:39:16,800 >> SORRY I WANT TO JUMP IN, I 2699 01:39:16,800 --> 01:39:17,640 REALLY LIKE THE OPPORTUNITY AND 2700 01:39:17,640 --> 01:39:20,280 BUNS THAT ARE ADDITIONAL, AND 2701 01:39:20,280 --> 01:39:21,520 WONDER IF WE CAN THINK THE SAME 2702 01:39:21,520 --> 01:39:26,320 FOR VISITS. IF YOU ARE HERE IN 2703 01:39:26,320 --> 01:39:27,760 THE MONITORING UNIT WE ARE HERE 2704 01:39:27,760 --> 01:39:31,360 FOR CLINICAL INDICATION AND 2705 01:39:31,360 --> 01:39:33,800 STAYING THAT PERIOD OF TIME FOR 2706 01:39:33,800 --> 01:39:36,440 CLINICAL REASONS WHEREAS RNS OR 2707 01:39:36,440 --> 01:39:37,440 DEVICE, PLACE FOR CLINICAL 2708 01:39:37,440 --> 01:39:39,800 INDICATION MAYBE COMING BACK FOR 2709 01:39:39,800 --> 01:39:41,880 RESEARCH VISITS THAT ARE EXTRA 2710 01:39:41,880 --> 01:39:45,720 SO MAYBE WE SHOULD ALSO THAT 2711 01:39:45,720 --> 01:39:46,560 DISTINCT NOT JUST TO THE IMPLANT 2712 01:39:46,560 --> 01:39:48,320 OR THE DEVICE BUT ALSO TO THE 2713 01:39:48,320 --> 01:39:55,320 VISITS THEMSELVES. 2714 01:39:55,320 --> 01:39:55,840 >> GREAT DISTINCTION. 2715 01:39:55,840 --> 01:39:57,120 >> FOLKS RESPONDED TO THE LAST 2716 01:39:57,120 --> 01:40:01,400 ONE, THE QUESTIONING HAD -- I 2717 01:40:01,400 --> 01:40:02,840 THINK IT IS UNCOMMON FOR 2718 01:40:02,840 --> 01:40:05,680 RESEARCH THAT HAPPENS IN THE OR 2719 01:40:05,680 --> 01:40:10,200 DURING DBI OR TO BE COMPENSATED 2720 01:40:10,200 --> 01:40:14,120 OUR IRB DOESN'T DO THAT. I THINK 2721 01:40:14,120 --> 01:40:16,880 IT IS UNCOMMON BUT THE DISTINCT 2722 01:40:16,880 --> 01:40:17,880 WHERE SPECIFICALLY FOR RESEARCH 2723 01:40:17,880 --> 01:40:19,280 THAT ARE NOT PART OF CLINICAL 2724 01:40:19,280 --> 01:40:22,120 CARE THOSE OFTEN ARE, SO I USE 2725 01:40:22,120 --> 01:40:23,960 THE EMU FOR TRIAL, DOING 2726 01:40:23,960 --> 01:40:25,720 PATIENTS WITH DEPRESSION, THEY 2727 01:40:25,720 --> 01:40:27,640 ARE ONLY THERE FOR THE TRIAL 2728 01:40:27,640 --> 01:40:29,360 THEY GET PAID FOR VISIT AND EMU 2729 01:40:29,360 --> 01:40:31,440 STATES, LONGER THEY GET PAID 2730 01:40:31,440 --> 01:40:32,920 MORE. SO THAT DISTINCT WORKS 2731 01:40:32,920 --> 01:40:35,760 WELL FOR THAT. MY QUESTION OR 2732 01:40:35,760 --> 01:40:38,680 I'M NOT QUESTION BUT I GUESS 2733 01:40:38,680 --> 01:40:41,440 COMMENT IS FROM A COUPLE TRENDS 2734 01:40:41,440 --> 01:40:43,880 AGO ON THIS ISSUE OF 2735 01:40:43,880 --> 01:40:47,400 RECOGNITIONRECOGNITION. THAT MENTIONED AND 2736 01:40:47,400 --> 01:40:49,040 WE CAN CHAT ABOUT. THANK YOU FOR 2737 01:40:49,040 --> 01:40:51,040 YOUR PARTICIPATION. SOMEONE NOT 2738 01:40:51,040 --> 01:40:53,840 INVOLVED IN THAT RESEARCH AT ALL 2739 01:40:53,840 --> 01:40:57,040 AND I KNOW AND RESPECT THE WORK 2740 01:40:57,040 --> 01:40:58,960 AND I THINK IT IS WONDERFUL THAT 2741 01:40:58,960 --> 01:41:01,080 YOU AND FOLKS LIKE YOU ARE 2742 01:41:01,080 --> 01:41:02,720 INTERESTED PARTICIPATING SO THAT 2743 01:41:02,720 --> 01:41:05,240 WE CAN ALL LEARN. AS AN 2744 01:41:05,240 --> 01:41:06,160 INTERESTED BYSTANDER I THANK 2745 01:41:06,160 --> 01:41:09,360 YOU. 2746 01:41:09,360 --> 01:41:11,240 >> ISSUE OF RECOGNITION IS 2747 01:41:11,240 --> 01:41:13,520 IMPORTANT ONE AND CUTS BOTH 2748 01:41:13,520 --> 01:41:18,840 WAYS. AS YOU SAID AS WE DICES 2749 01:41:18,840 --> 01:41:24,760 CUD-- THEOTHER SIDE IS WE HAVE TO BE 2750 01:41:24,760 --> 01:41:27,320 CAREFUL WITH HOW WE PORTRAY IT 2751 01:41:27,320 --> 01:41:29,520 TO POTENTIAL PARTICIPANTS. SO I 2752 01:41:29,520 --> 01:41:30,880 WONDER HOW IF WE TAKE IT BACK TO 2753 01:41:30,880 --> 01:41:33,560 THE POINT OF TALKING TO A 2754 01:41:33,560 --> 01:41:36,520 POTENTIAL CANDIDATE FOR BCI 2755 01:41:36,520 --> 01:41:38,920 STUDY OR INPATIENT EPILEPSY 2756 01:41:38,920 --> 01:41:40,680 STUDY, WE HAVE TO BE CAREFUL 2757 01:41:40,680 --> 01:41:42,280 ABOUT WHAT WE TALK A BIT ABOUT 2758 01:41:42,280 --> 01:41:43,840 AS BENEFITS OF PARTICIPATING IN 2759 01:41:43,840 --> 01:41:50,000 THE STUDY. HOW DOES ONE TALK 2760 01:41:50,000 --> 01:41:54,640 ABOUT RECOGNITION WITHOUT 2761 01:41:54,640 --> 01:41:55,960 HIGHLIGHTING OR UNDERSCORING TOO 2762 01:41:55,960 --> 01:41:57,840 MUCH TO MAKE IT SOUND LIKE A 2763 01:41:57,840 --> 01:42:02,320 BENEFIT THAT COULD BE AGAIN SORT 2764 01:42:02,320 --> 01:42:04,000 OF GIVEN MORE WAY OR BEING USED 2765 01:42:04,000 --> 01:42:06,240 IN A WAY TO INFLUENCE BEYOND 2766 01:42:06,240 --> 01:42:11,080 WHAT IS APPROPRIATE. 2767 01:42:11,080 --> 01:42:12,880 COMPENSATION IS ONE THING, 2768 01:42:12,880 --> 01:42:14,000 RECOGNITION IN GENERAL IN TERMS 2769 01:42:14,000 --> 01:42:15,800 OF SO AND SO PARTICIPATED IN 2770 01:42:15,800 --> 01:42:19,880 THIS STUDY. I THINK TOO MUCH AND 2771 01:42:19,880 --> 01:42:23,520 IT COULD BE INAPPROPRIATE, TOO 2772 01:42:23,520 --> 01:42:24,320 LITTLE AND PARTICIPANT FEELS 2773 01:42:24,320 --> 01:42:27,720 USED. AS WE HEARD BOTH WAYS. 2774 01:42:27,720 --> 01:42:29,880 IT IS CHALLENGE BECAUSE EVERYONE 2775 01:42:29,880 --> 01:42:33,720 HAS EVERY INDIVIDUAL PERSON HAS 2776 01:42:33,720 --> 01:42:35,040 DIFFERENT LINE WHERE THAT 2777 01:42:35,040 --> 01:42:36,400 TRANSITION MIGHT OCCUR. AND I 2778 01:42:36,400 --> 01:42:38,360 THINK THAT IS WHAT MAKES IT 2779 01:42:38,360 --> 01:42:42,560 CHALLENGING. I WONDER IF ONE 2780 01:42:42,560 --> 01:42:46,400 SOLUTION IS TO FOR ANY 2781 01:42:46,400 --> 01:42:49,240 INDIVIDUAL WHO IS BEING 2782 01:42:49,240 --> 01:42:51,720 CONSIDERED FOR ENROLLMENT IN 2783 01:42:51,720 --> 01:42:53,440 THESE STUDIES TO TRY TO BROADEN 2784 01:42:53,440 --> 01:42:57,600 THEIR OWN UNDERSTANDING OF THIS 2785 01:42:57,600 --> 01:43:01,080 WORLD OUT THERE, ALL THE PEOPLE 2786 01:43:01,080 --> 01:43:03,360 ON THE ZOOM BOXES, ALL THE 2787 01:43:03,360 --> 01:43:04,800 PARTICIPANTS WHO HAVE BEEN IN 2788 01:43:04,800 --> 01:43:06,120 THESE STUDIES TO LET THEM KNOW 2789 01:43:06,120 --> 01:43:11,120 THEY ARE PART OF THIS ECOSYSTEM, 2790 01:43:11,120 --> 01:43:13,960 OF CLINICIANS AND SCIENTIST, 2791 01:43:13,960 --> 01:43:16,200 PARTICIPANTS, AND LET THEM KNOW 2792 01:43:16,200 --> 01:43:18,320 THERE'S DIFFERENT PERSPECTIVES 2793 01:43:18,320 --> 01:43:20,680 THAT EACH OF THESE PEOPLE HAVE 2794 01:43:20,680 --> 01:43:22,680 INDIVIDUALLY. T IT GETS BACK TO 2795 01:43:22,680 --> 01:43:25,040 QUESTION OF THIS VIDEO, HOW 2796 01:43:25,040 --> 01:43:26,400 SPECIFIC OR GENERAL CAN IT BE. 2797 01:43:26,400 --> 01:43:28,280 WE DISCUSS THIS IN THE ROH 2798 01:43:28,280 --> 01:43:30,400 MEETINGS AND THE IDEA BEEN TO 2799 01:43:30,400 --> 01:43:32,040 CREATE A FEW RADIOS, ONE FOR 2800 01:43:32,040 --> 01:43:34,520 PEOPLE THAT PARTICIPATE IN BCI 2801 01:43:34,520 --> 01:43:35,520 LIKE THINGS WHERE SURGERY IS 2802 01:43:35,520 --> 01:43:37,800 JUST FOR RESEARCH AND HAVING MET 2803 01:43:37,800 --> 01:43:39,960 MULTIPLE BUSINESS VERSUS ANOTHER 2804 01:43:39,960 --> 01:43:42,120 ONE WHERE SURGERIES IN CLINICAL 2805 01:43:42,120 --> 01:43:43,400 AND YOU SEE IN EMU AND 2806 01:43:43,400 --> 01:43:44,720 PARTICIPATE IN THESE STUDIES. 2807 01:43:44,720 --> 01:43:46,160 BUT FOR THEM TO BE ABLE TO 2808 01:43:46,160 --> 01:43:48,920 UNDERSTAND THAT THEY ARE NOT THE 2809 01:43:48,920 --> 01:43:50,320 ONLY PERSON AND WILL SAY THIS 2810 01:43:50,320 --> 01:43:52,120 HAS BEEN GOING ON AND HOW LONG 2811 01:43:52,120 --> 01:43:53,240 BUT THEM TO KNOW THEY ARE NOT 2812 01:43:53,240 --> 01:43:55,200 THE ONLY ONE, ALL OF THIS HAS 2813 01:43:55,200 --> 01:43:59,320 GONE ON BEFORE AND CONTINUE 2814 01:43:59,320 --> 01:44:02,120 AFTER, -- SORRY. PAUSE. FOR 2815 01:44:02,120 --> 01:44:05,400 THE AUDIO. BUT TO LET THEM KNOW 2816 01:44:05,400 --> 01:44:07,920 THEY ARE PART OF THIS CONTINUUM 2817 01:44:07,920 --> 01:44:10,400 THAT HAS PRODUCED THIS -- THESE 2818 01:44:10,400 --> 01:44:11,880 RESULTS BEFORE AND WILL CONTINUE 2819 01:44:11,880 --> 01:44:15,560 PRODUCING RESULTS IN THE FUTURE. 2820 01:44:15,560 --> 01:44:19,280 MAYBE THAT COULD DO IT IN SOME 2821 01:44:19,280 --> 01:44:22,720 GENITAL APPROPRIATE WAY THEY 2822 01:44:22,720 --> 01:44:24,800 KNOW PART OF THE FAMILY THIS 2823 01:44:24,800 --> 01:44:28,240 ECOSYSTEM OF PARTICIPANTS, TO 2824 01:44:28,240 --> 01:44:30,960 GIVE THEM THE OPPORTUNITY TO 2825 01:44:30,960 --> 01:44:32,200 DECLINE IF THEY WOULD LIKE TO 2826 01:44:32,200 --> 01:44:33,800 BUT IF THEY PARTICIPATE THANE 2827 01:44:33,800 --> 01:44:35,720 THEY ARE PART OF A BIGGER 2828 01:44:35,720 --> 01:44:38,920 PROJECT. AND THAT MAYBE A WAY 2829 01:44:38,920 --> 01:44:44,560 TO PROVIDE THEM WITH THE BROAD 2830 01:44:44,560 --> 01:44:47,320 UNDERSTANDING THAT -- BUT STILL 2831 01:44:47,320 --> 01:44:49,120 APPROPRIATE IN TERMS OF NOT 2832 01:44:49,120 --> 01:44:51,920 BEING UNDULY INFLUENTIAL. 2833 01:44:51,920 --> 01:44:54,320 >> GREAT. THANK YOU. I SEE FIVE 2834 01:44:54,320 --> 01:44:57,400 HANDS UP. ASHLEY FIRST. 2835 01:44:57,400 --> 01:44:59,640 >> I WANTED TO RESPOND TO SOME 2836 01:44:59,640 --> 01:45:02,560 OF THE THINGS THAT SAMEER WAS 2837 01:45:02,560 --> 01:45:04,320 SAYING. I WANT TO -- MAYBE THIS 2838 01:45:04,320 --> 01:45:06,560 WILL COMPLICATE THINGS MORE BUT 2839 01:45:06,560 --> 01:45:08,120 PHILOSOPHERS LIKE TO DO THIS. IN 2840 01:45:08,120 --> 01:45:09,840 A DIFFERENT PROJECT THAN I'M 2841 01:45:09,840 --> 01:45:12,800 PART OF WE HAVE BEEN TALKING 2842 01:45:12,800 --> 01:45:14,400 WITH ORGAN DONORS AND GRAPPLING 2843 01:45:14,400 --> 01:45:15,840 WITH THIS CHALLENGE OF HOW TO 2844 01:45:15,840 --> 01:45:17,360 ENHANCE INFORMED CONSENT FOR 2845 01:45:17,360 --> 01:45:19,280 PEOPLE WHO WANT TO DONATED 2846 01:45:19,280 --> 01:45:21,440 ORGANS AND THINKING HOW THAT 2847 01:45:21,440 --> 01:45:22,880 EXPERIENCE IS TRANSFORMATIVE, A 2848 01:45:22,880 --> 01:45:23,880 LOT OF PEOPLE SAY THEY DON'T 2849 01:45:23,880 --> 01:45:25,560 REALLY KNOW WHAT IT WOULD BE 2850 01:45:25,560 --> 01:45:28,000 LIKE TO GIVE A EVERYBODY TO 2851 01:45:28,000 --> 01:45:29,600 SOMEONE ELSE AND SAVE HAIR LIFE 2852 01:45:29,600 --> 01:45:31,840 SO WHAT THEY HAVE DONE IS MADE A 2853 01:45:31,840 --> 01:45:35,600 REPOSITORY OF STORIES THEY HAVE 2854 01:45:35,600 --> 01:45:37,720 COLLECTED FROM POTENTIAL DONORS 2855 01:45:37,720 --> 01:45:38,720 RECIPIENTS, PEOPLE WHO HAVE DONE 2856 01:45:38,720 --> 01:45:43,920 IT. AND OFFERED IT AS A KIND OF 2857 01:45:43,920 --> 01:45:47,480 PROPOSE IT AS A RESOURCE FOR 2858 01:45:47,480 --> 01:45:51,320 PATIENTS BUT NOT PUT FORWARD OR 2859 01:45:51,320 --> 01:45:53,720 PLUCKED ANY PARTICULAR 2860 01:45:53,720 --> 01:45:55,640 NARRATIVES TO OFFER WITH ANY 2861 01:45:55,640 --> 01:45:56,720 PARTICULAR VALENCE. THAT HAS ITS 2862 01:45:56,720 --> 01:45:59,800 OWN SET OF CHALLENGES SO RAISES 2863 01:45:59,800 --> 01:46:01,200 HOST OF OTHER CONCERNS. YOU WILL 2864 01:46:01,200 --> 01:46:03,440 GET THE STORIES THAT PEOPLE WANT 2865 01:46:03,440 --> 01:46:05,000 TO SHARE. I THINK SOME OF THE 2866 01:46:05,000 --> 01:46:06,960 STUFF WE ARE TALKING ABOUT TODAY 2867 01:46:06,960 --> 01:46:08,280 GRAPPLING WITH THESE QUESTIONS. 2868 01:46:08,280 --> 01:46:10,520 SO HOW DO WE -- IT NOT ONLY 2869 01:46:10,520 --> 01:46:11,920 MATTER WHAT IS IS IN THOSE 2870 01:46:11,920 --> 01:46:13,040 STORIES BUT WHO IS PUTTING 2871 01:46:13,040 --> 01:46:14,560 FORWARD AND WHAT REASON SO YOU 2872 01:46:14,560 --> 01:46:17,480 CAN PUT FORWARD THE SAME SET OF 2873 01:46:17,480 --> 01:46:19,040 EXPERIENCES BUT THERE WOULD BE A 2874 01:46:19,040 --> 01:46:19,560 DIFFERENT INTENTION BEHIND 2875 01:46:19,560 --> 01:46:21,200 OFFERING THOSE STORIES AND I 2876 01:46:21,200 --> 01:46:22,720 THINK THE APPROPRIATE USE IN A 2877 01:46:22,720 --> 01:46:26,520 WAY THAT RESPONDS TO PATIENT 2878 01:46:26,520 --> 01:46:28,720 RECOGNIZES THE PARTICIPANTS AS 2879 01:46:28,720 --> 01:46:29,720 PEOPLE WITH INTEREST AND STAKE 2880 01:46:29,720 --> 01:46:31,440 AND DESIRE TO PARTICIPATE BUT 2881 01:46:31,440 --> 01:46:33,600 ALSO CAREFUL ABOUT WHETHER THAT 2882 01:46:33,600 --> 01:46:35,040 IS BEING USED IN BAYS THAT ARE 2883 01:46:35,040 --> 01:46:36,800 RAISING QUESTIONS ABOUT 2884 01:46:36,800 --> 01:46:39,280 INFLUENCE AS SAMEER SUGGESTED SO 2885 01:46:39,280 --> 01:46:41,320 I WANTED TO THROW MORE 2886 01:46:41,320 --> 01:46:43,320 COMPLICATION OUT THERE. 2887 01:46:43,320 --> 01:46:45,720 >> NICE TO HEAR ABOUT THE 2888 01:46:45,720 --> 01:46:50,160 REPOSITORY. HANK. 2889 01:46:50,160 --> 01:46:51,280 >> LAWYERS LIKE ADDING 2890 01:46:51,280 --> 01:46:54,160 COMPLICATIONS TOO. I'M NOT SURE 2891 01:46:54,160 --> 01:46:55,720 IF THIS IS REALLY ADDING 2892 01:46:55,720 --> 01:46:56,920 COMPLICATION BUT IT OCCURRED TO 2893 01:46:56,920 --> 01:47:00,360 ME TO WONDER LISTENING TO THIS, 2894 01:47:00,360 --> 01:47:02,720 HOW BROAD OR NARROW OF SCOPE OF 2895 01:47:02,720 --> 01:47:06,800 KINDS OF TRIALS ARE WE TALKING 2896 01:47:06,800 --> 01:47:08,480 ABOUT? THE FIRST PRESENTATION 2897 01:47:08,480 --> 01:47:11,760 WAS INTRACORTICAL WORK. BUT 2898 01:47:11,760 --> 01:47:12,960 THERE IS A HUGE DIFFERENCE 2899 01:47:12,960 --> 01:47:14,520 BETWEEN BCI RESEARCH AND SAY 2900 01:47:14,520 --> 01:47:16,960 PUTTING AN ECOG ON A PATIENT IN 2901 01:47:16,960 --> 01:47:19,080 THE HOSPITAL WAITING FOR 2902 01:47:19,080 --> 01:47:20,200 EPILEPTIC SEIZURE, MAYBE ONE 2903 01:47:20,200 --> 01:47:22,240 TIME IN THEIR LIFE EXPERIENCE, 2904 01:47:22,240 --> 01:47:25,760 SARA TALKED ABOUT WHAT WAS YOUR 2905 01:47:25,760 --> 01:47:30,920 TITLE? LONG TERM HIGHLY 2906 01:47:30,920 --> 01:47:32,360 INTERACTIVE STUDIES WHICH I 2907 01:47:32,360 --> 01:47:34,720 THINK MAYBE CAPTURE SOME OF THIS 2908 01:47:34,720 --> 01:47:37,280 BETTER BUT THERE WILL BE LOTS OF 2909 01:47:37,280 --> 01:47:39,280 VARIATIONS AND EVERYTHING BCI IS 2910 01:47:39,280 --> 01:47:41,000 A LONG TERM HIGHLY INTERACTIVE 2911 01:47:41,000 --> 01:47:42,480 STUDY, MAYBE CARRYING AROUND A 2912 01:47:42,480 --> 01:47:43,680 CELL PHONE AND DOING SOMETHING 2913 01:47:43,680 --> 01:47:45,280 ONCE OR TWICE A DAY ON THE CELL 2914 01:47:45,280 --> 01:47:47,240 PHONE IS A LONG TERM HIGHLY 2915 01:47:47,240 --> 01:47:49,120 INTERACTIVE STUDY. AND OF COURSE 2916 01:47:49,120 --> 01:47:51,680 THERE IS A WHOLE ISSUE THAT DOES 2917 01:47:51,680 --> 01:47:54,320 THIS HOW TO WHAT EXTENT THIS 2918 01:47:54,320 --> 01:47:55,920 EXTENDS BEYOND NEUROSCIENCE AND 2919 01:47:55,920 --> 01:47:58,480 NEUROSTUDIESSTUDIES. SO CURIOUS THE 2920 01:47:58,480 --> 01:48:01,320 PEOPLE HAVE THOUGHTS WHAT THE 2921 01:48:01,320 --> 01:48:03,560 CONTOUR, WHAT THE SHAPE OR SCOPE 2922 01:48:03,560 --> 01:48:08,880 OF KINDS OF STUDIES THAT THIS 2923 01:48:08,880 --> 01:48:11,840 GIVES US, THAT ARE ENCOMPASSED 2924 01:48:11,840 --> 01:48:13,720 IN THE LESS SONS THAT WE HAVE 2925 01:48:13,720 --> 01:48:17,880 BEEN TALKING ABOUT SO FAR. 2926 01:48:17,880 --> 01:48:19,840 >> YOU WANT TO CALL ON SOMEBODY 2927 01:48:19,840 --> 01:48:21,440 SPECIFICALLY TO ANSWER THAT? OR 2928 01:48:21,440 --> 01:48:23,200 JUST WANT GENERAL DISCUSSION? 2929 01:48:23,200 --> 01:48:25,960 >> I JUST PUT THAT OUT THERE. 2930 01:48:25,960 --> 01:48:26,880 KRISTINA, IF YOU WANTED TO 2931 01:48:26,880 --> 01:48:27,760 ANSWER THAT, THAT'S OKAY WITH 2932 01:48:27,760 --> 01:48:28,680 ME. 2933 01:48:28,680 --> 01:48:31,320 >> I ACTUALLY THINK WHAT WINSTON 2934 01:48:31,320 --> 01:48:33,560 OFFERED A WHILE AGO IS A NICE 2935 01:48:33,560 --> 01:48:37,400 WAY TO DICHOTOMIES, SOME ARE 2936 01:48:37,400 --> 01:48:38,320 OPPORTUNISTIC AND SOME ARE 2937 01:48:38,320 --> 01:48:40,840 OPTIONAL. IT IS NOT THE ONLY 2938 01:48:40,840 --> 01:48:44,880 DISTINCTION BUT A USEFUL 2939 01:48:44,880 --> 01:48:45,880 DISTINCTION, DR. ZAGHLOUL ADDED 2940 01:48:45,880 --> 01:48:46,120 TO THAT. 2941 01:48:46,120 --> 01:48:48,320 >> HI, DO I GET TO GO NEXT? I 2942 01:48:48,320 --> 01:48:50,760 THINK IT IS REALLY INTERESTING 2943 01:48:50,760 --> 01:48:52,720 QUESTION FROM HANK. WHEN WINSTON 2944 01:48:52,720 --> 01:48:55,600 WAS OFFERING THE DISTINCTION, I 2945 01:48:55,600 --> 01:48:57,560 THOUSAND WE HAVE THAT -- IN THE 2946 01:48:57,560 --> 01:49:00,280 TWO PRESENTATIONS, VERY 2947 01:49:00,280 --> 01:49:01,440 DIFFERENT KINDS OF THINGS. AS 2948 01:49:01,440 --> 01:49:02,480 PEOPLE SAID THERE'S SO MANY 2949 01:49:02,480 --> 01:49:05,800 THINGS IN THE MIDDLE, GROUP IS 2950 01:49:05,800 --> 01:49:10,640 WORKING WITH -- HERE AT UDUB ON 2951 01:49:10,640 --> 01:49:15,120 INTRACORTICAL DBS FOR POST 2952 01:49:15,120 --> 01:49:17,000 STROKE STUDY. THAT IS A RESEARCH 2953 01:49:17,000 --> 01:49:21,640 STUDY THAT DOESN'T REQUIRE A 2954 01:49:21,640 --> 01:49:22,720 NEUROSURGERY FOR THE PERSON 2955 01:49:22,720 --> 01:49:25,360 WOULDN'T NEED IT FOR NORMAL 2956 01:49:25,360 --> 01:49:28,000 REHAB POST STROKE BUT AIM IS 2957 01:49:28,000 --> 01:49:30,200 THERAPEUTIC IN THE WAY SPONSOR 2958 01:49:30,200 --> 01:49:33,560 BCI STUDIES TALK ABOUT, IT IS A 2959 01:49:33,560 --> 01:49:37,880 QUALITY OF LIFE ENHANCER AIM BUT 2960 01:49:37,880 --> 01:49:39,440 NOT THERAPEUTIC IN THE SAME 2961 01:49:39,440 --> 01:49:41,360 SENSE THAT WE TYPICALLY THINK OF 2962 01:49:41,360 --> 01:49:43,800 IT. I DO THINK AS WE EXPAND 2963 01:49:43,800 --> 01:49:47,880 THESE STUDY, IN DIFFERENT 2964 01:49:47,880 --> 01:49:48,880 DIRECTIONS, I DON'T KNOW THAT 2965 01:49:48,880 --> 01:49:49,520 THAT BROAD DISTINCTION IS GOING 2966 01:49:49,520 --> 01:49:53,040 TO CAPTURE. THINGS FULLY. BUT I 2967 01:49:53,040 --> 01:49:56,000 LIKE IT AS A LITTLE HANDLE TO 2968 01:49:56,000 --> 01:49:58,120 HOLD ON TO LEAST FOR RIGHT NOW. 2969 01:49:58,120 --> 01:50:00,720 I DO THINK THE INTEROPERATIVE 2970 01:50:00,720 --> 01:50:03,000 ONES ARE QUITE DIFFERENT. 2971 01:50:03,000 --> 01:50:05,200 ASHLEY'S POINTS WHICH WE HAVEN'T 2972 01:50:05,200 --> 01:50:07,080 TALKED ABOUT YET, ABOUT 2973 01:50:07,080 --> 01:50:09,400 POSSIBILITY OF REFUSAL WHEN YOU 2974 01:50:09,400 --> 01:50:12,160 ARE IN AN INCREDIBLY VULNERABLE 2975 01:50:12,160 --> 01:50:13,720 POSITION AWAKE MAYBE WITH YOUR 2976 01:50:13,720 --> 01:50:16,520 HEAD IN THE STEREO TACTIC FRAME. 2977 01:50:16,520 --> 01:50:18,520 HOW CAPABLE ARE YOU IN THAT 2978 01:50:18,520 --> 01:50:21,080 STATE OF REALLY UNDERSTANDING, I 2979 01:50:21,080 --> 01:50:23,800 WORKED WITH ANNA WEXLER ON A 2980 01:50:23,800 --> 01:50:25,680 STUDY OF PEOPLE DOING 2981 01:50:25,680 --> 01:50:26,640 INTEROPERATIVE BASIC 2982 01:50:26,640 --> 01:50:27,880 NEUROSCIENCE STUDIES AN PEOPLE 2983 01:50:27,880 --> 01:50:31,560 THAT SHE TALKED TO DIDN'T FULLY 2984 01:50:31,560 --> 01:50:32,280 UNDERSTAND LIKE THEIR MEMORY OF 2985 01:50:32,280 --> 01:50:34,600 WHAT WAS HAPPENING IN THAT TIME 2986 01:50:34,600 --> 01:50:37,600 FRAME WAS NOT VERY CLEAR. SO I 2987 01:50:37,600 --> 01:50:38,360 THINK THERE ARE INTERESTING 2988 01:50:38,360 --> 01:50:40,320 QUESTIONS THERE THAT ARE VERY 2989 01:50:40,320 --> 01:50:41,600 DIFFERENT. LAST THING I WANT TO 2990 01:50:41,600 --> 01:50:44,880 SAY, THIS IS SOMETHING KAREN HAS 2991 01:50:44,880 --> 01:50:47,440 SAID IN MANY OCCASIONS. I WANT 2992 01:50:47,440 --> 01:50:49,360 TO ECHO IT, ONE OF THE KEY 2993 01:50:49,360 --> 01:50:50,920 THINGS ABOUT RECOGNITION IS 2994 01:50:50,920 --> 01:50:53,360 ENSURING THAT THE PERSON WHO IS 2995 01:50:53,360 --> 01:50:54,280 A PARTICIPANT ALWAYS FEELS LIKE 2996 01:50:54,280 --> 01:50:58,200 THEY ARE TREATED AS A SUBJECT AN 2997 01:50:58,200 --> 01:50:59,880 AGENT, NOT THE OBJECTIVE STUDY 2998 01:50:59,880 --> 01:51:02,800 WHO IS JUST PASSIVELY 2999 01:51:02,800 --> 01:51:04,880 CONTRIBUTING SOME NEURAL DATA. 3000 01:51:04,880 --> 01:51:06,240 ESPECIALLY FOR THE LONG TERM 3001 01:51:06,240 --> 01:51:09,160 INTERACTIVE ONES SO THEY ARE 3002 01:51:09,160 --> 01:51:11,120 RECOGNIZED AS A HIGHLY IMPORTANT 3003 01:51:11,120 --> 01:51:12,960 CONTRIBUTING TEAM MEMBER. I 3004 01:51:12,960 --> 01:51:14,760 THINK IT IS AN OPEN QUESTION, 3005 01:51:14,760 --> 01:51:16,520 EXACTLY HOW WE DO THAT TO GO 3006 01:51:16,520 --> 01:51:22,280 BACK TO SAMEER'S POINT, WITHOUT 3007 01:51:22,280 --> 01:51:23,760 SOMEHOW OVEREMPHASIZING THAT 3008 01:51:23,760 --> 01:51:25,120 BENEFIT TO LURE PEOPLE INTO THE 3009 01:51:25,120 --> 01:51:27,840 STUDY. 3010 01:51:27,840 --> 01:51:30,000 >> SORRY, KEEP GOING. 3011 01:51:30,000 --> 01:51:31,600 >> I WAS JUST GOING TO SNEAK IN 3012 01:51:31,600 --> 01:51:34,520 AND SAY I COMPLETELY AGREE AND I 3013 01:51:34,520 --> 01:51:36,880 WOULD ALSO SAY THIS QUESTION OF 3014 01:51:36,880 --> 01:51:39,120 RECOGNITION IS NOT A MOOT POINT 3015 01:51:39,120 --> 01:51:41,120 EVEN IN THE INTEROPERATIVE STUDY 3016 01:51:41,120 --> 01:51:42,960 SO SOME OF THE THINGS WE HEARD 3017 01:51:42,960 --> 01:51:45,840 PATIENTS SAY LONG TERM HIGHLY 3018 01:51:45,840 --> 01:51:47,840 INTERACTIVE STUDY CARING ABOUT 3019 01:51:47,840 --> 01:51:49,160 RESEARCH INTEREST AND 3020 01:51:49,160 --> 01:51:50,560 PARTICIPATION HOW CAN WE RESPOND 3021 01:51:50,560 --> 01:51:51,680 TO INTEREST AND TREAT THOSE 3022 01:51:51,680 --> 01:51:54,440 PARTICIPANTS AS PEOPLE AS AGENTS 3023 01:51:54,440 --> 01:51:56,120 AS WELL. EVEN THOUGH WHEN 3024 01:51:56,120 --> 01:51:57,720 PARTICIPATING IN THE STUDY, 3025 01:51:57,720 --> 01:51:58,920 THERE'S ALL SORTS OF 3026 01:51:58,920 --> 01:52:00,280 COMPLICATING FACTORS IN THE OR. 3027 01:52:00,280 --> 01:52:03,080 THIS IS A FANTASTIC POINT AS 3028 01:52:03,080 --> 01:52:04,080 WELL AND CAN APPLY THOSE 3029 01:52:04,080 --> 01:52:07,000 STUDIES. 3030 01:52:07,000 --> 01:52:08,720 >> KAREN IN A SECOND BUT ALSO 3031 01:52:08,720 --> 01:52:12,520 RESPOND TO WHAT SARA SAID, I 3032 01:52:12,520 --> 01:52:15,800 THINK THERE ARE SO MANY -- THERE 3033 01:52:15,800 --> 01:52:17,120 IS A DISTINCT THAT CAN START US 3034 01:52:17,120 --> 01:52:19,720 AND THEN WE GO DOWN THE ROAD AND 3035 01:52:19,720 --> 01:52:20,760 THERE'S OTHER DISTINCTIONS ALONG 3036 01:52:20,760 --> 01:52:22,560 THE WAY. YOU MADE THAT POINT 3037 01:52:22,560 --> 01:52:24,640 BEAUTIFULLY THAT YOU CAN'T JUST 3038 01:52:24,640 --> 01:52:25,640 SAY OPPORTUNISTIC VERSUS 3039 01:52:25,640 --> 01:52:27,080 OPTIONAL BECAUSE THERE'S SO MANY 3040 01:52:27,080 --> 01:52:29,080 OTHER CONSIDERATIONS. ONE THING 3041 01:52:29,080 --> 01:52:32,280 THAT IS INTERESTING IS WHAT ARE 3042 01:52:32,280 --> 01:52:34,640 THE DINTSES THAT MATTER FOR THE 3043 01:52:34,640 --> 01:52:35,600 ETHICAL CONSIDERATIONS WE NEED 3044 01:52:35,600 --> 01:52:37,560 TO THINK ABOUT SO WE HAVE TALKED 3045 01:52:37,560 --> 01:52:39,800 ABOUT COMPENSATION AND 3046 01:52:39,800 --> 01:52:41,440 RECOGNITION BOTH OF YOU SPOKE 3047 01:52:41,440 --> 01:52:42,520 ABOUT IN YOUR PRESENTATIONS AND 3048 01:52:42,520 --> 01:52:44,560 WE HAVEN'T SPOKEN ABOUT IT YET 3049 01:52:44,560 --> 01:52:48,400 MUCH ON THIS PANEL, THIS WHOLE 3050 01:52:48,400 --> 01:52:51,040 QUESTION OF WHAT IS CONSENT, AS 3051 01:52:51,040 --> 01:52:52,560 STEVE MENTIONED EARLIER, NOT 3052 01:52:52,560 --> 01:52:55,040 JUST CONSENT BUT DISCUSSION ALL 3053 01:52:55,040 --> 01:52:57,200 THE WAY THROUGH. AND BEING PART 3054 01:52:57,200 --> 01:52:58,720 OF THAT DISCUSSION ALL THE WAY 3055 01:52:58,720 --> 01:52:59,960 LIEU SO THOSE ARE OTHER THINGS 3056 01:52:59,960 --> 01:53:06,320 TO GET BACK TO. KAREN. 3057 01:53:06,320 --> 01:53:11,240 >> I REALLY APPRECIATED 3058 01:53:11,240 --> 01:53:11,960 PERSPECTIVE BROUGHT UP SEVERAL 3059 01:53:11,960 --> 01:53:14,720 TIMES AND I'M GRATEFUL TO JAMES 3060 01:53:14,720 --> 01:53:16,800 FOR BEING HERE. IT MADE ME 3061 01:53:16,800 --> 01:53:17,960 WONDER SOMETHING SIMILAR TO WHAT 3062 01:53:17,960 --> 01:53:20,400 EVA PUT IN THE CHAT WHERE SHE 3063 01:53:20,400 --> 01:53:21,920 ASKS FOR SUPPORT GROUPS OR 3064 01:53:21,920 --> 01:53:23,000 RESEARCH PARTICIPANTS AND 3065 01:53:23,000 --> 01:53:26,160 CAREGIVERS AND I WAS WONDERING 3066 01:53:26,160 --> 01:53:30,400 IF JM -- MAYBE SARA AN ASHLEY 3067 01:53:30,400 --> 01:53:32,880 COULD MENTION, IF THERE WERE 3068 01:53:32,880 --> 01:53:36,480 ALREADY EXISTING COMMUNITIES OF 3069 01:53:36,480 --> 01:53:39,280 PARTICIPANT RESEARCHERS IN THE 3070 01:53:39,280 --> 01:53:43,640 BCI SPACE, IF THERE AREN'T ANY 3071 01:53:43,640 --> 01:53:46,720 IS WILL A DESIRE TO HAVE ONE? 3072 01:53:46,720 --> 01:53:49,840 AND MAYBE THAT COULD HELP US 3073 01:53:49,840 --> 01:53:53,440 WITH OUR ONGOING PROCEDURES FOR 3074 01:53:53,440 --> 01:53:55,200 -- ONGOING PROCEDURES FOR 3075 01:53:55,200 --> 01:53:59,960 CONSENT. SEE IF YOU CAN STILL 3076 01:53:59,960 --> 01:54:00,480 HEAR ME. 3077 01:54:00,480 --> 01:54:02,280 >> WE CAN. 3078 01:54:02,280 --> 01:54:05,960 >> SO -- I'M SORRY, GO AHEAD 3079 01:54:05,960 --> 01:54:06,320 JAMES. 3080 01:54:06,320 --> 01:54:09,720 >> UNFORTUNATELY THERE AREN'T 3081 01:54:09,720 --> 01:54:12,160 ANY SUPPORT GROUPS FOR PEOPLE 3082 01:54:12,160 --> 01:54:16,120 WHO ARE PARTICIPATING IN 3083 01:54:16,120 --> 01:54:20,320 STUDIES. I THINK PARTLY TO DO 3084 01:54:20,320 --> 01:54:23,000 WITH -- THEY MAY BE INVOLVED IN 3085 01:54:23,000 --> 01:54:27,320 DIFFERENT ASPECT OF THE STUDY. I 3086 01:54:27,320 --> 01:54:31,920 KNOW FOR PARTICIPANTS UNDER DR. 3087 01:54:31,920 --> 01:54:33,760 ANDERSON, AT CAL TECH THERE ARE 3088 01:54:33,760 --> 01:54:36,920 DIFFERENT ASPECTS OF THIS STUDY, 3089 01:54:36,920 --> 01:54:39,120 FOR EXAMPLE IMPLANTS ARE IN 3090 01:54:39,120 --> 01:54:43,480 DIFFERENT AREAS OF THE BRAIN. 3091 01:54:43,480 --> 01:54:45,120 FOR EACH INDIVIDUAL PARTICIPANT. 3092 01:54:45,120 --> 01:54:52,040 BUT IN TERMS OF A COMMUNITY 3093 01:54:52,040 --> 01:54:52,920 TYPESET UP WHERE WE CAN COMMON 3094 01:54:52,920 --> 01:54:57,080 KATE WITH EACH OTHER, I BELIEVE 3095 01:54:57,080 --> 01:55:00,080 THAT EXISTS. 3096 01:55:00,080 --> 01:55:03,080 >> OKAY. GO AHEAD SARA. 3097 01:55:03,080 --> 01:55:04,880 >> JAMES, DO YOU THINK IT WOULD 3098 01:55:04,880 --> 01:55:07,600 BE HELPFUL OR VALUABLE AND I 3099 01:55:07,600 --> 01:55:10,040 THINK IN RESPONSE TO KAREN, I 3100 01:55:10,040 --> 01:55:12,240 WOULD THINK ABOUT THIS STUDY WE 3101 01:55:12,240 --> 01:55:14,400 DID NOW A WHILE BACK WITH PEOPLE 3102 01:55:14,400 --> 01:55:16,920 USING AN EXPERIMENTAL DBS, FOR 3103 01:55:16,920 --> 01:55:18,800 TREATMENT RESISTANT DEPRESSION 3104 01:55:18,800 --> 01:55:20,480 AND/OR OCD. THAT GROUP OF PEOPLE 3105 01:55:20,480 --> 01:55:22,720 WE DID A FOCUS GROUP RATHER THAN 3106 01:55:22,720 --> 01:55:23,720 INDIVIDUAL INTERVIEWS. THEY 3107 01:55:23,720 --> 01:55:25,680 WERE EXCHANGING CONTACT 3108 01:55:25,680 --> 01:55:27,880 INFORMATION AFTERWARD THINKING 3109 01:55:27,880 --> 01:55:28,760 SOMEBODY ELSE WHO HAS THIS 3110 01:55:28,760 --> 01:55:31,440 EXPERIENCE AND CAN TALK TO ME 3111 01:55:31,440 --> 01:55:32,720 ABOUT JUST ONE OF THE THINGS WE 3112 01:55:32,720 --> 01:55:35,320 FOUND WAS INTERESTING CHANGES IN 3113 01:55:35,320 --> 01:55:36,400 RELATIONSHIPS ON THE BASIS OF 3114 01:55:36,400 --> 01:55:38,400 KNOWING YOU HAD THIS DEVICE THAT 3115 01:55:38,400 --> 01:55:42,080 COULD ALTER SOMETHING ABOUT YOUR 3116 01:55:42,080 --> 01:55:43,280 MOOD OR BEHAVIOR ESPECIALLY WITH 3117 01:55:43,280 --> 01:55:46,120 THE PATIENT CONTROLLER WHETHER 3118 01:55:46,120 --> 01:55:48,160 YOU COULD BE SHIFTED IN RESPONSE 3119 01:55:48,160 --> 01:55:49,600 TO THINGS THAT OTHER FAMILY 3120 01:55:49,600 --> 01:55:51,520 MEMBERS WERE SAYING SO IT WAS 3121 01:55:51,520 --> 01:55:55,360 REALLY IMPORTANT FOR THAT GROUP 3122 01:55:55,360 --> 01:55:56,720 TO SEEMINGLY THROUGH THIS 3123 01:55:56,720 --> 01:55:57,840 EXPERIENCE OF FOCUS GROUP HAVE 3124 01:55:57,840 --> 01:55:59,920 ACCESS TO OTHER PEOPLE. I DON'T 3125 01:55:59,920 --> 01:56:02,760 KNOW. CURIOUS FROM JAMES, DO YOU 3126 01:56:02,760 --> 01:56:06,760 THINK IT WOULD BE INTERESTING, 3127 01:56:06,760 --> 01:56:07,880 HELPFUL, ONE FOR YOU WHO IS IN 3128 01:56:07,880 --> 01:56:09,320 THE STUDY AND THINKING ABOUT 3129 01:56:09,320 --> 01:56:12,240 PROSPECTIVE PEOPLE COMING INTO A 3130 01:56:12,240 --> 01:56:14,240 STUDY TO BE ABLE TO JOIN A CHAT 3131 01:56:14,240 --> 01:56:15,240 GROUP WITH YOU AND OTHERS WHO 3132 01:56:15,240 --> 01:56:17,280 ARE ALREADY IN IT. 3133 01:56:17,280 --> 01:56:22,640 >> ABSOLUTELY. IF I WAS ABLE TO 3134 01:56:22,640 --> 01:56:27,120 SPEAK WITH PEOPLE WHO ARE 3135 01:56:27,120 --> 01:56:27,920 INVOLVED IN THE SAME STUDY, THAT 3136 01:56:27,920 --> 01:56:29,640 WOULD BE GREAT. I WOULD LOVE TO 3137 01:56:29,640 --> 01:56:33,120 SWAP STORIES AND HEAR SOME OF 3138 01:56:33,120 --> 01:56:37,680 THE CHALLENGES THEY EXPERIENCE. 3139 01:56:37,680 --> 01:56:40,840 SO AND SOME OF THE SOLUTIONS 3140 01:56:40,840 --> 01:56:43,320 THEY MIGHT HAVE. NOT ALL FUTURES 3141 01:56:43,320 --> 01:56:44,960 AND ROSES, IT IS QUITE 3142 01:56:44,960 --> 01:56:47,720 CHALLENGING. I MEAN, WE HAVE TO 3143 01:56:47,720 --> 01:56:50,920 WALK AROUND WITH OUR PHYSICAL 3144 01:56:50,920 --> 01:56:52,920 APPEARANCE ALTERED. WE HAVE 3145 01:56:52,920 --> 01:56:58,480 THESE ELECTRODES STUCK ON THEIR 3146 01:56:58,480 --> 01:57:04,000 -- OUR HEADS. I USE TO NEVER 3147 01:57:04,000 --> 01:57:06,520 WEAR HATS BEFORE, NOW I WEAR 3148 01:57:06,520 --> 01:57:08,880 HATS BECAUSE IT IS EASIER TO 3149 01:57:08,880 --> 01:57:14,920 WHERE WEAR A HAT THAN HAVE THE 3150 01:57:14,920 --> 01:57:16,120 STARES WHEN PEOPLE ASK WHAT IS 3151 01:57:16,120 --> 01:57:19,440 THAT ON YOUR HEAD. SO YEAH, 3152 01:57:19,440 --> 01:57:23,080 THERE IS A DEGREE OF DEPRESSION 3153 01:57:23,080 --> 01:57:26,080 THAT IS ASSOCIATED WITH WHAT WE 3154 01:57:26,080 --> 01:57:30,800 HAVE TO GO THROUGH. TO HAVE 3155 01:57:30,800 --> 01:57:34,120 FOCUS GROUP OR INTERACTION WITH 3156 01:57:34,120 --> 01:57:40,360 OTHERS THAT WOULD BE BENEFICIAL. 3157 01:57:40,360 --> 01:57:44,200 >> GO AHEAD SARA. YOU WANT TO 3158 01:57:44,200 --> 01:57:44,720 RESPOND? 3159 01:57:44,720 --> 01:57:45,200 >> MY HAND. 3160 01:57:45,200 --> 01:57:48,560 >> I WANTED TO SAY, THINKING 3161 01:57:48,560 --> 01:57:50,040 HANK'S QUESTION MAYBE SOME OF -- 3162 01:57:50,040 --> 01:57:52,160 ONE OF THE THINGS THAT IS 3163 01:57:52,160 --> 01:57:54,160 RELEVANT TO HOW INTERACTIVE -- 3164 01:57:54,160 --> 01:57:55,360 SO ONE OF THE THINGS I WAS 3165 01:57:55,360 --> 01:57:58,880 TRAINED TO ADDRESS IN MY SLIDES 3166 01:57:58,880 --> 01:58:00,960 IS TIME CONSUMING NATURE OF IT 3167 01:58:00,960 --> 01:58:04,080 AND INVASIVENESS IN THIS NON--- 3168 01:58:04,080 --> 01:58:06,200 NOT FOCUSED ON SURGICAL RISK BUT 3169 01:58:06,200 --> 01:58:09,400 ON THE INVASIVENESS IN YOUR LIFE 3170 01:58:09,400 --> 01:58:10,840 KIND OF WHICH I THINK MATTERS 3171 01:58:10,840 --> 01:58:13,480 THERE IS A WAY IN WHICH THE CELL 3172 01:58:13,480 --> 01:58:18,160 PHONE STUDY THAT YOU DESCRIBED 3173 01:58:18,160 --> 01:58:20,120 HANK, IT IS MULTIPLE TIMES 3174 01:58:20,120 --> 01:58:21,280 DURING THE DAY YOUR PHONE BUZZES 3175 01:58:21,280 --> 01:58:22,360 AND YOU HAVE TO DO SOMETHING BUT 3176 01:58:22,360 --> 01:58:24,760 IF YOU ARE DONE IN FIVE MINUTES 3177 01:58:24,760 --> 01:58:27,640 YOU ARE NOT TAXED MENTALLY AND 3178 01:58:27,640 --> 01:58:28,960 PHYSICALLY, YOU DON'T HAVE TO GO 3179 01:58:28,960 --> 01:58:31,200 SOMEWHERE TO DO IT, THAT SEEMS 3180 01:58:31,200 --> 01:58:34,120 COMPLETELY DIFFERENT FROM -- THE 3181 01:58:34,120 --> 01:58:36,080 JOB YOU DO THAT IS VERY TIRING 3182 01:58:36,080 --> 01:58:37,640 IN YOUR AS JAMES SAID YOU ARE 3183 01:58:37,640 --> 01:58:39,120 TIRED WHEN YOU GO HOME, IT IS 3184 01:58:39,120 --> 01:58:41,520 NOT JUST THE TIME IN THE LAB BUT 3185 01:58:41,520 --> 01:58:42,840 WHAT FOLLOWS FROM THAT. I THINK 3186 01:58:42,840 --> 01:58:45,800 THAT IS ONE RELEVANT FEATURE. I 3187 01:58:45,800 --> 01:58:50,800 DON'T HAVE A TAXONOMY PREPARED. 3188 01:58:50,800 --> 01:58:52,480 >> I WOULD LIKE TO SHIFT OUR 3189 01:58:52,480 --> 01:58:54,720 DISCUSSION A LITTLE BIT, ALL THE 3190 01:58:54,720 --> 01:58:55,520 THINGS WE HAVE BEEN TALKING 3191 01:58:55,520 --> 01:58:57,960 ABOUT MIGHT BE RELEVANT HERE, I 3192 01:58:57,960 --> 01:59:01,120 WANT TO ASK EVERYBODY IF THEY 3193 01:59:01,120 --> 01:59:05,120 CAN THINK ABOUT AND OPINE ON 3194 01:59:05,120 --> 01:59:06,320 WHAT ETHICAL CHALLENGES HAVE 3195 01:59:06,320 --> 01:59:09,520 BEEN IDENTIFIED IN THESE 3196 01:59:09,520 --> 01:59:13,120 DISCUSSIONS OR RELATED ONES, 3197 01:59:13,120 --> 01:59:15,360 THAT MIGHT BENEFIT FROM 3198 01:59:15,360 --> 01:59:17,720 ADDITIONAL RESEARCH, ADDITIONAL 3199 01:59:17,720 --> 01:59:19,400 GUIDANCE OR DISCUSSION BY THE 3200 01:59:19,400 --> 01:59:20,920 NEUROETHICS WORKING GROUP OR 3201 01:59:20,920 --> 01:59:23,560 SOME COMBINATION THEREOF. SO YOU 3202 01:59:23,560 --> 01:59:25,320 HAVE TO THINK ABOUT ALL THE 3203 01:59:25,320 --> 01:59:26,120 THINGS WE HAVE BEEN TALKING 3204 01:59:26,120 --> 01:59:27,320 ABOUT, WHAT DO WE NEED MORE 3205 01:59:27,320 --> 01:59:29,440 RESEARCH ON? WHAT DO WE NEED 3206 01:59:29,440 --> 01:59:31,440 MORE GUIDANCE ON? WHAT CAN THE 3207 01:59:31,440 --> 01:59:35,080 NEWG DO AS A -- FOR ANY OF THESE 3208 01:59:35,080 --> 01:59:37,920 ISSUES IN TERMS OF FORWARDING 3209 01:59:37,920 --> 01:59:42,320 THE DISCUSSION. ANY IDEAS ON 3210 01:59:42,320 --> 01:59:44,440 THAT? I CAN CALL ON EVERYBODY, 3211 01:59:44,440 --> 01:59:47,640 OR I CAN LET YOU VOLUNTEER. 3212 01:59:47,640 --> 01:59:51,400 SAMEER. GO FOR IT. 3213 01:59:51,400 --> 01:59:56,400 >> WONDER WE TALKED ABOUT THIS 3214 01:59:56,400 --> 01:59:59,480 ASHLEY IN YOUR -- YOU TALKED 3215 01:59:59,480 --> 02:00:03,720 ABOUT THIS, THE DUAL ROLE ISSUE 3216 02:00:03,720 --> 02:00:05,160 AND AS SOMEONE STUCK IN DUAL 3217 02:00:05,160 --> 02:00:10,080 ROLE I WONDER HOW BEST TO DO 3218 02:00:10,080 --> 02:00:13,920 THIS. WE TALKED ABOUT VARIOUS 3219 02:00:13,920 --> 02:00:15,520 MODELS, IN EXTREMES ARE THAT ON 3220 02:00:15,520 --> 02:00:20,000 THE ONE HAND THE QUESTION 3221 02:00:20,000 --> 02:00:21,320 SCIENTIST DOES THE ENTIRE 3222 02:00:21,320 --> 02:00:22,720 CONSENT, THAT IS IT. ON THE 3223 02:00:22,720 --> 02:00:24,240 OTHER HAND THEY GIVE IT UP 3224 02:00:24,240 --> 02:00:26,680 ENTIRELY TO SOMEONE ELSE. AND 3225 02:00:26,680 --> 02:00:28,120 THE OTHER PERSON DOES IT. THEN 3226 02:00:28,120 --> 02:00:31,680 MAYBE THERE IS VARIOUS HYBRID 3227 02:00:31,680 --> 02:00:35,920 MODELS WHERE THE DUAL ROLE 3228 02:00:35,920 --> 02:00:37,440 PERSON HAS SOME PARTICIPATION IN 3229 02:00:37,440 --> 02:00:40,320 IT. JUST SPEAKING OF MYSELF THAT 3230 02:00:40,320 --> 02:00:44,920 IS WHAT WE DO, I WILL 3231 02:00:44,920 --> 02:00:47,000 PARTICIPATE IN IT JUST TO A 3232 02:00:47,000 --> 02:00:48,360 CERTAIN POINT THEN HAND OFF FOR 3233 02:00:48,360 --> 02:00:49,360 SOMEONE ELSE TO PICK UP AND 3234 02:00:49,360 --> 02:00:53,040 FINISH. IT IS NOT PERFECT, 3235 02:00:53,040 --> 02:00:54,760 DOESN'T WORK EVERY TIME BUT THE 3236 02:00:54,760 --> 02:00:56,680 REASON FOR THAT I FEEL LIKE IS 3237 02:00:56,680 --> 02:01:00,520 JUST THE DISCUSSION OFTEN 3238 02:01:00,520 --> 02:01:01,160 INVOLVE NOT JUST RESEARCH 3239 02:01:01,160 --> 02:01:02,600 TOTALLY SEPARATE FROM THE 3240 02:01:02,600 --> 02:01:05,240 SURGERY BUT FOR POTENTIAL 3241 02:01:05,240 --> 02:01:07,320 PARTICIPANT, THEY ARE ALL 3242 02:01:07,320 --> 02:01:09,280 INTERTWINED. IT IS HARD NOT TO 3243 02:01:09,280 --> 02:01:13,000 BE THERE WHEN THEY START ASKING 3244 02:01:13,000 --> 02:01:14,920 ABOUT -- WHAT IF THIS HAPPENS, 3245 02:01:14,920 --> 02:01:17,920 RESEARCH COORDINATORS SO I WOULD 3246 02:01:17,920 --> 02:01:22,400 LIKE TO KNOW, I MEAN FROM THE 3247 02:01:22,400 --> 02:01:25,720 CANDIDATE ENROLLED PARTICIPATE 3248 02:01:25,720 --> 02:01:29,960 PERSPECTIVE, WHICH OF THESE HAY 3249 02:01:29,960 --> 02:01:30,720 THINK WOULD BE USEFUL IN TERMS 3250 02:01:30,720 --> 02:01:32,520 OF GETTING INFORMATION THEY 3251 02:01:32,520 --> 02:01:33,920 NEED, BEING ABLE TO MAKE A 3252 02:01:33,920 --> 02:01:38,080 DECISION THAT IS INFORMED, 3253 02:01:38,080 --> 02:01:42,480 TOTALLY WITHOUT INFLUENCE FROM 3254 02:01:42,480 --> 02:01:45,760 CLINICIANS, SUCH AS MYSELF WHO 3255 02:01:45,760 --> 02:01:48,160 THEY TRUST BUT TRUST FOR THE 3256 02:01:48,160 --> 02:01:50,160 SURGERY, SEPARATE THING, WHERE 3257 02:01:50,160 --> 02:01:52,080 THEY TRUST WHAT WE ARE DOING ON 3258 02:01:52,080 --> 02:01:54,000 RESEARCH SIDE OF THINGS. I DON'T 3259 02:01:54,000 --> 02:01:56,320 KNOW HOW BEST TO DO IT. A CROSS 3260 02:01:56,320 --> 02:01:57,960 SECTION THROUGH WHAT IS 3261 02:01:57,960 --> 02:01:59,520 HAPPENING NOW BECAUSE EVERYONE 3262 02:01:59,520 --> 02:02:01,960 IS DOING IT DIFFERENTLY, YOU GET 3263 02:02:01,960 --> 02:02:04,160 A SNAP SHOT AND IF YOU SORT OF 3264 02:02:04,160 --> 02:02:07,720 HAVE IT DETAILED ENOUGH OF HOW 3265 02:02:07,720 --> 02:02:09,960 THE PROCESS WAS DONE, IF THERE 3266 02:02:09,960 --> 02:02:11,840 IS AN ACCOUNT MAYBE HAVE SOME 3267 02:02:11,840 --> 02:02:13,400 SENSE WHAT WORKED WELL AND WHAT 3268 02:02:13,400 --> 02:02:18,280 DIDN'T. IN A CROSS SECTIONAL 3269 02:02:18,280 --> 02:02:20,080 WAY. MAYBE FROM THAT YOU CAN 3270 02:02:20,080 --> 02:02:21,880 HOBBLE TOGETHER TO PITCH THIS 3271 02:02:21,880 --> 02:02:22,560 THING TO WORK BEST. 3272 02:02:22,560 --> 02:02:24,920 >> SO YOU ARE TALKING RESEARCH, 3273 02:02:24,920 --> 02:02:26,920 DOING RESEARCH IN THAT ISSUE 3274 02:02:26,920 --> 02:02:28,120 ESPECIALLY FROM THE PERSPECTIVE 3275 02:02:28,120 --> 02:02:28,520 OF PARTICIPANTS. 3276 02:02:28,520 --> 02:02:28,840 >> RIGHT. 3277 02:02:28,840 --> 02:02:37,920 >> GREAT. GREAT IDEA. OTHERS. 3278 02:02:37,920 --> 02:02:41,320 ANYBODY ELSE HAVE IDEAS ABOUT 3279 02:02:41,320 --> 02:02:41,920 RESEARCH GUIDANCE OR NEWG 3280 02:02:41,920 --> 02:02:44,840 UPTAKE? ON ISSUES WE HAVE 3281 02:02:44,840 --> 02:02:53,240 DISCUSSED TODAY? JIM. 3282 02:02:53,240 --> 02:02:55,360 >> THANKS, CHRISTINE, SOMETHING 3283 02:02:55,360 --> 02:02:56,480 I HAVE BEEN STRUCK BY FROM 3284 02:02:56,480 --> 02:02:59,320 DISCUSSION TODAY IS THIS IDEA OF 3285 02:02:59,320 --> 02:03:01,640 CONSENT FOR STUDIES YOU 3286 02:03:01,640 --> 02:03:02,880 PRESUMPTIVELY NOT HAVE 3287 02:03:02,880 --> 02:03:04,000 THERAPEUTIC BENEFIT AND IDEA 3288 02:03:04,000 --> 02:03:04,920 CONTINUING CONSENT THROUGHOUT 3289 02:03:04,920 --> 02:03:08,720 THE STUDY. TRY TO THINK ABOUT 3290 02:03:08,720 --> 02:03:09,720 HOW DEVELOP GUIDANCE WITH 3291 02:03:09,720 --> 02:03:11,840 RESPECT TO THAT, WHETHER OR NOT 3292 02:03:11,840 --> 02:03:13,840 THERE IS A GENERAL TYPE OF 3293 02:03:13,840 --> 02:03:15,880 GUIDANCE DONE OR IS IT ALL HAVE 3294 02:03:15,880 --> 02:03:17,760 TO BE SPECIFIC TAILORED TO THE 3295 02:03:17,760 --> 02:03:20,280 PARTICULAR INDIVIDUAL OR 3296 02:03:20,280 --> 02:03:22,840 PARTICULAR STUDY. I THINK THAT 3297 02:03:22,840 --> 02:03:24,120 WOULD BENEFIT THE COMMUNITY 3298 02:03:24,120 --> 02:03:26,280 PATIENTS AND RESEARCH IN 3299 02:03:26,280 --> 02:03:27,080 GENERAL. 3300 02:03:27,080 --> 02:03:30,960 >> GREAT. YOU ARE SUGGESTING WE 3301 02:03:30,960 --> 02:03:32,320 NEED GUIDANCE AND WE NEED -- 3302 02:03:32,320 --> 02:03:34,960 THAT MIGHT BE SOMETHING THE NEWG 3303 02:03:34,960 --> 02:03:35,640 COULD AT LEAST DISCUSS? 3304 02:03:35,640 --> 02:03:38,160 >> EXACTLY. THERE ARE NUMBER OF 3305 02:03:38,160 --> 02:03:40,480 THINGS THAT CAN BE DONE TO TRY 3306 02:03:40,480 --> 02:03:42,520 TO FLUSH THAT OUT A LITTLE BIT. 3307 02:03:42,520 --> 02:03:46,400 >> GREAT. WINSTON. 3308 02:03:46,400 --> 02:03:48,280 >> 3309 02:03:48,280 --> 02:03:50,560 >> IT WAS NINA THAT DISTRIBUTED 3310 02:03:50,560 --> 02:03:52,960 TALKING AND THINKING POINTS. I 3311 02:03:52,960 --> 02:03:56,280 AM STRUCK BY THIS ONE ABOUT THE 3312 02:03:56,280 --> 02:03:59,720 BRINGING INVESTIGATORS TOGETHER 3313 02:03:59,720 --> 02:04:01,240 PUTTING TOGETHER THESE KINDS OF 3314 02:04:01,240 --> 02:04:04,760 GUIDELINES AND THINKING A LITTLE 3315 02:04:04,760 --> 02:04:07,960 BIT ABOUT WHERE RESPONSIBILITY 3316 02:04:07,960 --> 02:04:10,760 LIES FOR ESTABLISHING STANDARDS, 3317 02:04:10,760 --> 02:04:13,520 IT IS IMPORTANT THE WAY ASHLEY 3318 02:04:13,520 --> 02:04:14,640 SAID THESE ARE PRESENTED FOR 3319 02:04:14,640 --> 02:04:16,320 DISCUSSION. OBVIOUSLY WE NEED 3320 02:04:16,320 --> 02:04:17,440 INVESTIGATORS TO PARTICIPATE IN 3321 02:04:17,440 --> 02:04:20,760 THAT DISCUSSION AND BRING THOSE 3322 02:04:20,760 --> 02:04:22,320 EXPERIENCES. BUT I JUST THOUGHT 3323 02:04:22,320 --> 02:04:24,120 THE THE WAY NINA POSED THE 3324 02:04:24,120 --> 02:04:25,200 QUESTION WAS INTERESTING. I 3325 02:04:25,200 --> 02:04:26,640 DON'T HAVE AN IMMEDIATE RESPONSE 3326 02:04:26,640 --> 02:04:35,320 TO IT. BUT -- I THINK IT IS 3327 02:04:35,320 --> 02:04:36,520 NOTEWORTHY THAT THE NEURON PAPER 3328 02:04:36,520 --> 02:04:38,400 IS PRESENTED BY THE COMMUNITY 3329 02:04:38,400 --> 02:04:39,640 INVESTIGATORS DOING THE WORK. 3330 02:04:39,640 --> 02:04:42,160 WHICH I THINK IS WHAT GIVES IT 3331 02:04:42,160 --> 02:04:44,800 THE POWER AND WHAT MAKES IT SO 3332 02:04:44,800 --> 02:04:46,040 SIGNIFICANT. BUT AT THE SAME 3333 02:04:46,040 --> 02:04:47,720 TIME THERE IS A WHOLE BUNCH OF 3334 02:04:47,720 --> 02:04:51,560 OTHER STAKEHOLDERS THAT OUGHT TO 3335 02:04:51,560 --> 02:04:53,040 HAVE SOME SAY, IT IS HARD TO 3336 02:04:53,040 --> 02:04:55,720 KNOW EXACTLY HOW TO 3337 02:04:55,720 --> 02:04:58,800 OPERATIONALIZE THAT SO FORTH. SO 3338 02:04:58,800 --> 02:05:00,280 THAT'S SOMETHING THAT YEAH, A 3339 02:05:00,280 --> 02:05:02,960 PERSON -- OCCURS TO ME AS 3340 02:05:02,960 --> 02:05:03,920 SOMETHING THAT'S WORTH 3341 02:05:03,920 --> 02:05:05,920 CONSIDERING FROM OUR 3342 02:05:05,920 --> 02:05:07,200 PERSPECTIVE, ALSO UNDERSTANDING 3343 02:05:07,200 --> 02:05:11,240 WE ARE ALSO DEEP INSIDE, AS 3344 02:05:11,240 --> 02:05:12,920 BEING PART OF FUNDING AGENCY 3345 02:05:12,920 --> 02:05:17,440 THAT IS FUNDING THIS WORK. HOW 3346 02:05:17,440 --> 02:05:20,400 TO THINK ABOUT SORT OF BROADER 3347 02:05:20,400 --> 02:05:21,320 PARTICIPATION, MAYBE PART IS 3348 02:05:21,320 --> 02:05:22,680 HAVING STUDY AND PUTTING THESE 3349 02:05:22,680 --> 02:05:28,080 THINGS OUT THERE, AND HAVING 3350 02:05:28,080 --> 02:05:30,080 MORE OPEN DISCUSSION THAN I 3351 02:05:30,080 --> 02:05:33,400 THINK IS AVAILABLE BEFORE. 3352 02:05:33,400 --> 02:05:35,320 >> GREAT. THANK YOU, WINSTON. 3353 02:05:35,320 --> 02:05:37,920 STEVE. 3354 02:05:37,920 --> 02:05:40,640 >> THIS I THINK IS A CHALLENGING 3355 02:05:40,640 --> 02:05:45,600 ONE, BUT I THINK IN SARA AND 3356 02:05:45,600 --> 02:05:48,840 ASHLEY RAISE THE ISSUE OF 3357 02:05:48,840 --> 02:05:50,120 PARTICIPANTS AS BOTH SUBJECTS 3358 02:05:50,120 --> 02:05:53,640 AND OBJECTS, THE REASON IT IS 3359 02:05:53,640 --> 02:05:56,840 HARD IS BECAUSE EVEN IN ORDINARY 3360 02:05:56,840 --> 02:05:59,200 CLINICAL MEDICINE EVERYBODY IS 3361 02:05:59,200 --> 02:06:02,880 BOTH. EVEN ORDINARY CLINICAL 3362 02:06:02,880 --> 02:06:05,600 MEDICINE IT IS A STANCE THAT IS 3363 02:06:05,600 --> 02:06:11,840 OFTEN NOT HANDLED WELL. AND WHEN 3364 02:06:11,840 --> 02:06:14,480 YOU ARE MAKING A DIAGNOSIS AND 3365 02:06:14,480 --> 02:06:16,400 THINKING OF A PERSON AS A MEMBER 3366 02:06:16,400 --> 02:06:18,520 OF A CLASS THAT GETS A CERTAIN 3367 02:06:18,520 --> 02:06:24,120 DRUG OR WHEN YOU ARE PUTTING 3368 02:06:24,120 --> 02:06:26,320 FINDING THE RIGHT PLACE FOR THE 3369 02:06:26,320 --> 02:06:28,960 ELECTRODE IN PERSON'S BRAIN THAT 3370 02:06:28,960 --> 02:06:35,120 ARE OBJECTS. THEN YOU WANT TO 3371 02:06:35,120 --> 02:06:37,800 SWITCH AND SAY THAT THESE 3372 02:06:37,800 --> 02:06:40,080 PARTICIPANTS ARE -- WE WANT 3373 02:06:40,080 --> 02:06:44,920 THOSE AGENTS AS BASICALLY 3374 02:06:44,920 --> 02:06:49,760 SUBJECT. AND I'M NOT POSITIVE 3375 02:06:49,760 --> 02:06:53,840 HOW ONE GOES ABOUT IMPROVING 3376 02:06:53,840 --> 02:06:56,200 THAT -- ANYBODY WHO IS A 3377 02:06:56,200 --> 02:06:57,120 CLINICIAN HAS SEEN FAILED 3378 02:06:57,120 --> 02:06:59,240 ATTEMPTS TO TREAT PEOPLE AS 3379 02:06:59,240 --> 02:07:01,720 SUBJECTS WHICH IS JUST 3380 02:07:01,720 --> 02:07:06,520 PATRONIZING FOR EXAMPLE. 3381 02:07:06,520 --> 02:07:07,720 SOMEWHAT DISTANT EXAMPLE. THE 3382 02:07:07,720 --> 02:07:09,040 REASON I THINK ABOUT THIS, WHEN 3383 02:07:09,040 --> 02:07:11,160 I WAS NIH DIRECTOR IN THE '90s 3384 02:07:11,160 --> 02:07:15,800 A LONG TIME AGO, I -- FOR OUR 3385 02:07:15,800 --> 02:07:17,720 CLINICAL TRIALS AND HEALTH 3386 02:07:17,720 --> 02:07:21,040 SERVICES PORTFOLIO, I INCLUDED 3387 02:07:21,040 --> 02:07:24,440 PATIENTS AND ADVOCATES AND 3388 02:07:24,440 --> 02:07:27,880 FAMILIES AND NUMBER ON STUDY 3389 02:07:27,880 --> 02:07:30,720 SECTIONS, WITH THE ROLE NOT OF 3390 02:07:30,720 --> 02:07:32,280 JUDGING STATISTICS BUT WITH THE 3391 02:07:32,280 --> 02:07:34,520 ROLE OF TALKING ABOUT WHAT 3392 02:07:34,520 --> 02:07:36,440 MEASURE, WHAT MATTERS TO THEM. 3393 02:07:36,440 --> 02:07:38,840 WHAT OUTCOMES THEY CARE ABOUT. 3394 02:07:38,840 --> 02:07:40,800 AND THE DEGREE TO WHICH THE 3395 02:07:40,800 --> 02:07:43,000 MEMBERS OF THE STUDY SECTION 3396 02:07:43,000 --> 02:07:45,760 HATED THAT, WAS EXTRAORDINARY, A 3397 02:07:45,760 --> 02:07:48,920 FEW PEOPLE CAME AROUND. IT WAS 3398 02:07:48,920 --> 02:07:50,720 THE FIRST THING THAT DISAPPEARED 3399 02:07:50,720 --> 02:07:52,280 WHEN I HAD LEFT TO GO BACK TO 3400 02:07:52,280 --> 02:07:57,120 ACADEMIA. SO I THINK WE -- I 3401 02:07:57,120 --> 02:08:01,520 THINK THAT SARA AND ASHLEY AND 3402 02:08:01,520 --> 02:08:04,760 OTHERS HAVE HIT ON A REALLY 3403 02:08:04,760 --> 02:08:08,160 IMPORTANT AND NAUGHTY PROBLEM, 3404 02:08:08,160 --> 02:08:12,000 HOW WE HAVE BOTH -- BOTH OF 3405 02:08:12,000 --> 02:08:16,880 THESE MIND SETS, THEY HATE IT SO 3406 02:08:16,880 --> 02:08:18,040 MUCH BECAUSE HARP THE EXPERTS 3407 02:08:18,040 --> 02:08:20,000 AND THEY WOULDN'T SAY THIS 3408 02:08:20,000 --> 02:08:21,120 OUTLOUD, THEY WERE AFRAID THEY 3409 02:08:21,120 --> 02:08:23,480 WOULD BE TOLD WHAT TO DO AND 3410 02:08:23,480 --> 02:08:25,320 JUST BECAUSE YOU HAVE THIS LIVED 3411 02:08:25,320 --> 02:08:27,720 EXPERIENCE DOESN'T MAKE YOU 3412 02:08:27,720 --> 02:08:29,560 EXPERT BUT RULES ARE I THINK 3413 02:08:29,560 --> 02:08:30,960 WELL LAID OUT. IN FACT WE 3414 02:08:30,960 --> 02:08:35,840 LEARNED A LOT. THEY WERE NOT 3415 02:08:35,840 --> 02:08:37,480 MOST PARTICIPANTS WERE RATHER 3416 02:08:37,480 --> 02:08:39,080 UNINTERESTED IN THE SYMPTOM 3417 02:08:39,080 --> 02:08:44,000 REDUCTION SCALES THAT WE USE FOR 3418 02:08:44,000 --> 02:08:45,240 PHASE 3 TRIALS, THEY WERE 3419 02:08:45,240 --> 02:08:46,840 INTERESTED IN FUNCTION, WILL I 3420 02:08:46,840 --> 02:08:48,320 BE ABLE TO GO BACK-TO-SCHOOL, 3421 02:08:48,320 --> 02:08:50,200 WORK, HOW CAN I BE USEFUL IN 3422 02:08:50,200 --> 02:08:53,120 SOCIETY. IT'S AN ECHO WHAT WE 3423 02:08:53,120 --> 02:08:54,440 HEARD HERE AGAIN I DON'T WANT TO 3424 02:08:54,440 --> 02:08:56,520 GO ON TOO LONG IT IS JUST THAT 3425 02:08:56,520 --> 02:09:03,400 IF THERE WAS A WAY OF THINKING 3426 02:09:03,400 --> 02:09:07,120 ABOUT GUIDELINES WORKSHOPS FOR 3427 02:09:07,120 --> 02:09:08,960 INVESTIGATORS, THIS IS ONE OF 3428 02:09:08,960 --> 02:09:11,360 THOSE THINGS, IT IS LIKE 3429 02:09:11,360 --> 02:09:12,320 GRASPING JELL-O. I CAN'T EVEN 3430 02:09:12,320 --> 02:09:14,880 GIVE YOU PERFECT FORMULATION. 3431 02:09:14,880 --> 02:09:16,880 BUT IT IS SO IMPORTANT. T SO 3432 02:09:16,880 --> 02:09:17,880 IMPORTANT HOW THE PARTICIPANTS 3433 02:09:17,880 --> 02:09:22,520 WILL FEEL. AND ENGAUGE. 3434 02:09:22,520 --> 02:09:26,480 >> GOOD POINT STEVEN. IN MY OWN 3435 02:09:26,480 --> 02:09:28,240 MIND THE DIFFERENCE BETWEEN 3436 02:09:28,240 --> 02:09:29,360 WORKING WITH WORKING WITH 3437 02:09:29,360 --> 02:09:30,960 SOMEBODY AND LONG TERM 3438 02:09:30,960 --> 02:09:33,120 INTERACTIVE STUDY SEEING THEM 3439 02:09:33,120 --> 02:09:34,760 ONCE OR COLLECTING THEIR DATA 3440 02:09:34,760 --> 02:09:36,320 FROM SECONDARY SOURCE IS VERY 3441 02:09:36,320 --> 02:09:38,040 DIFFERENT IN TERMS OF HOW WE 3442 02:09:38,040 --> 02:09:39,520 THINK ABOUT THE -- WHO THEY ARE 3443 02:09:39,520 --> 02:09:42,520 AND WHAT THE COLLABORATION IS. 3444 02:09:42,520 --> 02:09:46,600 >> AND ASHLEY JUST MENTIONED THE 3445 02:09:46,600 --> 02:09:47,840 DISTINCT BETWEEN OBJECTIVE 3446 02:09:47,840 --> 02:09:49,560 STANCE AND INVOLVED STANCE BUT 3447 02:09:49,560 --> 02:09:53,320 WHAT I WOULD SAY IS GOOD 3448 02:09:53,320 --> 02:09:58,480 CLINICIANS SWITCH STANCES NOT 3449 02:09:58,480 --> 02:09:59,480 WITH CONSCIOUS INTENTION, THEY 3450 02:09:59,480 --> 02:10:01,920 PICK UP THE SOCIAL SIGNALS AS 3451 02:10:01,920 --> 02:10:03,760 THEY SWITCH MIND SETS AND TWO 3452 02:10:03,760 --> 02:10:05,280 ARE PRETTY INCOMPATIBLE I 3453 02:10:05,280 --> 02:10:08,760 BELIEVE. I THINK THEY WERE 3454 02:10:08,760 --> 02:10:09,880 DISTINCT WHICH IS WHY IT IS SO 3455 02:10:09,880 --> 02:10:12,080 CHALLENGING. 3456 02:10:12,080 --> 02:10:14,520 >> ALL RIGHT. THANK YOU. HANKS. 3457 02:10:14,520 --> 02:10:17,160 >> I THINK IT MIGHT BE FUN TO 3458 02:10:17,160 --> 02:10:20,840 TRY TO FIGURE OUT A TAX ON MINI 3459 02:10:20,840 --> 02:10:23,120 i-- TAXONOMY OF THE ISSUES AND 3460 02:10:23,120 --> 02:10:26,000 THE TAXONOMY TIED TO DIFFERENT 3461 02:10:26,000 --> 02:10:27,480 INTERVENTION BUS DIFFERENT KINDS 3462 02:10:27,480 --> 02:10:30,120 OF THINGS WHETHER IT IS SUPPORT 3463 02:10:30,120 --> 02:10:32,120 SESSIONS, FOR THE RESEARCH 3464 02:10:32,120 --> 02:10:33,280 PARTICIPANTS, WHETHER 3465 02:10:33,280 --> 02:10:35,960 COMPENSATION, WHETHER IT IS 3466 02:10:35,960 --> 02:10:36,880 RECOGNITION WHETHER SOMETHING 3467 02:10:36,880 --> 02:10:40,600 ELSE, THAT IS SOMETHING HA COULD 3468 02:10:40,600 --> 02:10:43,760 BE DONE BY SOMEBODY AMBITIOUS 3469 02:10:43,760 --> 02:10:45,320 ASSOCIATED WITH NEWG THAT COULD 3470 02:10:45,320 --> 02:10:48,200 THEN END UP BEING A NEWG 3471 02:10:48,200 --> 02:10:51,960 DISCUSSED AND POLISHED PAPER 3472 02:10:51,960 --> 02:10:55,040 WITH COMMENTARY FROM 3473 02:10:55,040 --> 02:10:57,560 INVESTIGATORS AS WELL. 3474 02:10:57,560 --> 02:11:00,480 >> AND DO YOU MEAN AS A RESEARCH 3475 02:11:00,480 --> 02:11:03,320 PROJECT OR AS A DISCUSSION? 3476 02:11:03,320 --> 02:11:03,960 ITEM? 3477 02:11:03,960 --> 02:11:09,320 >> I THINK ULTIMATELY AS A 3478 02:11:09,320 --> 02:11:10,600 PUBLICATION. WHETHER IT IS WHAT 3479 02:11:10,600 --> 02:11:14,280 DO YOU CALL IT RESEARCH EXACTLY 3480 02:11:14,280 --> 02:11:19,240 I'M NOT SURE. YES. 3481 02:11:19,240 --> 02:11:21,360 >> OKAY. I WOULD SAY JUST TWO 3482 02:11:21,360 --> 02:11:23,720 THINGS THEN TURN TO JOHN FOR FEW 3483 02:11:23,720 --> 02:11:25,000 CLOSING REMARKS. 3484 02:11:25,000 --> 02:11:26,480 >> STEVE DID YOU HAVE SOMETHING 3485 02:11:26,480 --> 02:11:27,120 ELSE TO SAY? 3486 02:11:27,120 --> 02:11:32,000 >> NO, NO. I WAS READING THE 3487 02:11:32,000 --> 02:11:32,760 EXCELLENT CHAT COMMENTS. 3488 02:11:32,760 --> 02:11:34,200 >> A LOT OF GREAT CHAT COMMENTS 3489 02:11:34,200 --> 02:11:35,840 FOR THOSE WHO HAVEN'T HAD A 3490 02:11:35,840 --> 02:11:38,800 CHANCE TO LOOK AT THEN, PLEASE 3491 02:11:38,800 --> 02:11:41,120 DO. I WANT TO FIRST OF ALL THANK 3492 02:11:41,120 --> 02:11:45,320 THE PANELISTS, ALL FOUR OF THEM. 3493 02:11:45,320 --> 02:11:48,920 DR. GOERING, DR. FEINSINGER, DR. 3494 02:11:48,920 --> 02:11:50,840 ZAGHLOUL AND MR. JOHNSON. WE 3495 02:11:50,840 --> 02:11:54,040 REALLY APPRECIATED YOUR 3496 02:11:54,040 --> 02:11:55,160 PERSPECTIVES AND YOUR -- THE 3497 02:11:55,160 --> 02:11:56,560 TIME YOU TOOK TO SHARE YOUR 3498 02:11:56,560 --> 02:12:00,320 EXPERTISE WITH US. AND SOME OF 3499 02:12:00,320 --> 02:12:01,720 THE GREAT THINGS YOU RAISED FOR 3500 02:12:01,720 --> 02:12:04,560 US TO THINK ABOUT. IT DOES SEEM 3501 02:12:04,560 --> 02:12:06,560 CLEAR TO ME FROM THIS DISCUSSION 3502 02:12:06,560 --> 02:12:07,320 THAT THERE ARE DISTINCTIONS 3503 02:12:07,320 --> 02:12:08,920 BETWEEN THESE KINDS OF RESEARCH 3504 02:12:08,920 --> 02:12:10,320 THAT ARE RELEVANT TO HOW WE 3505 02:12:10,320 --> 02:12:12,080 THINK ABOUT THEM ETHICALLY AND 3506 02:12:12,080 --> 02:12:14,840 THAT WE DO NEED TO SORT OF PAY 3507 02:12:14,840 --> 02:12:16,840 ATTENTION TO THOSE DISTINCTIONS. 3508 02:12:16,840 --> 02:12:18,360 BUT ACROSS ALL OF THE 3509 02:12:18,360 --> 02:12:20,360 DISTINCTIONS THERE'S STILL SOME 3510 02:12:20,360 --> 02:12:21,160 COMMON FEATURES. THERE ARE 3511 02:12:21,160 --> 02:12:22,520 PEOPLE THAT WE ARE WORKING WITH 3512 02:12:22,520 --> 02:12:25,240 AND WE NEED TO TREAT THEM 3513 02:12:25,240 --> 02:12:27,200 RESPECTFULLY, WE NEED TO THINK 3514 02:12:27,200 --> 02:12:28,480 ABOUT HOW WE GIVE THEM 3515 02:12:28,480 --> 02:12:32,360 INFORMATION AND HOW THEY CAN OR 3516 02:12:32,360 --> 02:12:34,040 CANNOT UNDERSTAND IT AND WHETHER 3517 02:12:34,040 --> 02:12:35,640 OR NOT THEY FEEL LIKE THEY CAN 3518 02:12:35,640 --> 02:12:38,400 MAKE A CHOICE, WHAT THAT CHOICE 3519 02:12:38,400 --> 02:12:40,320 IS. HOW WE RECOGNIZE THEM FOR 3520 02:12:40,320 --> 02:12:42,200 THAT. AND HOW WE TALK TO THEM 3521 02:12:42,200 --> 02:12:43,960 THROUGHOUT THE ENTIRE STUDY. 3522 02:12:43,960 --> 02:12:45,520 THEN THERE WERE OTHER THINGS 3523 02:12:45,520 --> 02:12:47,640 THAT PEOPLE BROUGHT UP THAT WE 3524 02:12:47,640 --> 02:12:50,560 DIDN'T TALK ABOUT MUCH, TRUST I 3525 02:12:50,560 --> 02:12:51,920 THINK ASHLEY BROUGHT UP TRUST 3526 02:12:51,920 --> 02:12:54,080 WHICH IS SUCH AN IMPORTANT 3527 02:12:54,080 --> 02:12:56,520 ISSUE. SARA BROUGHT UP THE POST 3528 02:12:56,520 --> 02:12:58,280 TRIAL ISSUES WHICH ARE RELEVANT 3529 02:12:58,280 --> 02:12:59,360 TO SO MANY OTHER KINDS OF 3530 02:12:59,360 --> 02:13:01,560 RESEARCH THAT WE DIDN'T TALK 3531 02:13:01,560 --> 02:13:03,120 ABOUT TODAY. AS I HEARD YOU SAY 3532 02:13:03,120 --> 02:13:06,760 YOU HAD A WORKSHOP WE ARE HAVING 3533 02:13:06,760 --> 02:13:08,880 A WORKSHOP, NEWG IS HAVING A 3534 02:13:08,880 --> 02:13:10,240 WORKSHOP THIS YEAR ON THAT TOPIC 3535 02:13:10,240 --> 02:13:11,320 TOO SO THERE ARE OTHER ISSUES 3536 02:13:11,320 --> 02:13:13,200 THAT ARE CIRCULATING IN THE AIR 3537 02:13:13,200 --> 02:13:14,520 HERE BUT IT WAS A RICH 3538 02:13:14,520 --> 02:13:16,480 DISCUSSION AND I APPRECIATE ALL 3539 02:13:16,480 --> 02:13:18,440 THE CONTRIBUTIONS PEOPLE MAKE. 3540 02:13:18,440 --> 02:13:21,840 NOW I'M GOING TO TURN IT OVER TO 3541 02:13:21,840 --> 02:13:23,280 JOHN AND TAKE IT FROM THERE. 3542 02:13:23,280 --> 02:13:24,880 >> THANKS VERY MUCH. I WANT TO 3543 02:13:24,880 --> 02:13:28,040 ECHO CHRISTINE'S THANKS TO ALL 3544 02:13:28,040 --> 02:13:30,040 THE PANELISTS HERE. AND 3545 02:13:30,040 --> 02:13:32,000 EVERYBODY WHO PARTICIPATED IN 3546 02:13:32,000 --> 02:13:34,120 THIS ILLUMINATING CONVERSATION. 3547 02:13:34,120 --> 02:13:37,360 MR. JOHNSON WE APPRECIATE YOUR 3548 02:13:37,360 --> 02:13:41,320 PARTICIPATION IN DR. ANDERSON'S 3549 02:13:41,320 --> 02:13:42,760 STUDY YOU HELPED ADVANCE THE 3550 02:13:42,760 --> 02:13:44,880 SCIENCE AND WE ARE APPRECIATIVE 3551 02:13:44,880 --> 02:13:46,920 OF THAT AND YOUR WILLINGNESS TO 3552 02:13:46,920 --> 02:13:48,520 GIVE US YOUR PERSPECTIVES. I 3553 02:13:48,520 --> 02:13:50,720 ALSO THINK ASHLEY AND SARA'S 3554 02:13:50,720 --> 02:13:53,040 PRESENTATIONS ALSO HIGHLIGHT FOR 3555 02:13:53,040 --> 02:13:54,920 ME TWO IMPORTANT THINGS THAT WE 3556 02:13:54,920 --> 02:13:56,760 WILL I THINK HELP US IN THE LONG 3557 02:13:56,760 --> 02:13:58,760 RUN ADVANCE ALONG SOME OF THESE 3558 02:13:58,760 --> 02:14:02,440 ISSUES THAT STEVE MENTION AD 3559 02:14:02,440 --> 02:14:04,600 GRASPING AT JELL-O APTLY. ONE IS 3560 02:14:04,600 --> 02:14:06,480 EMPIRICAL RESEARCH IMPORTANCE. 3561 02:14:06,480 --> 02:14:07,600 WE HAVE TO BE DATA DRIVEN 3562 02:14:07,600 --> 02:14:08,600 UNDERSTAND WHAT THE ISSUES ARE, 3563 02:14:08,600 --> 02:14:11,720 THE PROBLEMS ARE, BOTTLENECKS 3564 02:14:11,720 --> 02:14:13,280 BEFORE WE THINK ABOUT SOLUTIONS. 3565 02:14:13,280 --> 02:14:15,240 THE OTHER PIECE EMBODIED BY THE 3566 02:14:15,240 --> 02:14:16,440 RESEARCH OPPORTUNITIES HUMANS 3567 02:14:16,440 --> 02:14:17,600 CONSORTIUM AND ASHLEY DID 3568 02:14:17,600 --> 02:14:19,000 WONDERFUL PAPER THAT YOU FOLKS 3569 02:14:19,000 --> 02:14:20,600 PUT TOGETHER, WAS SO CLEARLY 3570 02:14:20,600 --> 02:14:23,160 FRAMING WHAT THE ISSUES ARE. BUT 3571 02:14:23,160 --> 02:14:27,320 ALSO COMING UP WITH I THINK SOME 3572 02:14:27,320 --> 02:14:29,000 VERY REASONABLE -- MORE THAN 3573 02:14:29,000 --> 02:14:30,720 REASONABLE ACTIONABLE SOLUTIONS. 3574 02:14:30,720 --> 02:14:33,360 AND I THINK HERE REALLY 3575 02:14:33,360 --> 02:14:34,680 UNDERSCORES THE POWER OF HAVING 3576 02:14:34,680 --> 02:14:37,200 THE INVESTIGATORS WHO ARE DOING 3577 02:14:37,200 --> 02:14:40,800 IT. AND ARE AWARE OF THE ISSUES 3578 02:14:40,800 --> 02:14:43,360 TO BE COMING UP WITH BEST 3579 02:14:43,360 --> 02:14:45,240 PRACTICES. WHETHER THESE BECOME 3580 02:14:45,240 --> 02:14:47,000 GUIDELINES OR NOT, I THINK IT IS 3581 02:14:47,000 --> 02:14:47,960 ALWAYS BETTER THAT THE FOLKS 3582 02:14:47,960 --> 02:14:50,360 DOING THE WORK COME UP, IDENTIFY 3583 02:14:50,360 --> 02:14:51,920 PROBLEMS AND PROPOSE SOLUTIONS 3584 02:14:51,920 --> 02:14:53,800 RATHER THAN HAVING SOMEBODY 3585 02:14:53,800 --> 02:14:54,640 TELLS THEM WHAT THE SOLUTION 3586 02:14:54,640 --> 02:14:56,920 SHOULD BE. SO RATHER THAN BEING 3587 02:14:56,920 --> 02:14:58,800 PRESCRIPTIVE FROM THE NIH POINT 3588 02:14:58,800 --> 02:15:01,520 OF VIEW IT IS BETTER IF WE 3589 02:15:01,520 --> 02:15:04,080 ASSIST INVESTIGATORS AND 3590 02:15:04,080 --> 02:15:04,880 RESEARCH PARTICIPANTS COME UP 3591 02:15:04,880 --> 02:15:07,080 WITH SOLUTIONS THAT WILL WORK 3592 02:15:07,080 --> 02:15:08,720 REALLY WELL, PROTECT INTERESTS 3593 02:15:08,720 --> 02:15:11,120 OF OUR HUMAN SUBJECTS, HUMAN 3594 02:15:11,120 --> 02:15:11,960 PARTICIPANTS, WHILE ALSO 3595 02:15:11,960 --> 02:15:13,640 ADVANCING THE SCIENCE. SO THIS 3596 02:15:13,640 --> 02:15:15,960 IS GRASPING AT JELL-O, I THIS I 3597 02:15:15,960 --> 02:15:17,320 ALSO THE PATH TO GETTING FROM 3598 02:15:17,320 --> 02:15:21,040 POINT A TO B WHERE WE HAVE BEST 3599 02:15:21,040 --> 02:15:23,120 PRACTICES DEFINED, MAYBE THEY 3600 02:15:23,120 --> 02:15:24,880 WILL BECOME GUIDELINES OR NOT, 3601 02:15:24,880 --> 02:15:26,480 THAT IS ALSO MURKY BUT I THINK 3602 02:15:26,480 --> 02:15:27,920 WITH THIS CORE GROUP OF FOLKS 3603 02:15:27,920 --> 02:15:29,120 THAT ARE BEING SUPPORTED NOT 3604 02:15:29,120 --> 02:15:31,120 JUST BY BRAIN BUT ALSO OTHERS 3605 02:15:31,120 --> 02:15:33,040 SECTORS OF NIH AND OTHER 3606 02:15:33,040 --> 02:15:38,120 RESEARCH GOING ON, I THINK YOU 3607 02:15:38,120 --> 02:15:39,560 FOLKS KNOW GOOD PRACTICE WHEN 3608 02:15:39,560 --> 02:15:41,200 YOU SITE AND ONCE ACCEPTED BY 3609 02:15:41,200 --> 02:15:43,320 RESEARCH COMMUNITY THE CLINICAL 3610 02:15:43,320 --> 02:15:45,520 COMMUNITY, I THINK IT WILL BE 3611 02:15:45,520 --> 02:15:47,280 EASY TO SPREAD THE GOOD WORD 3612 02:15:47,280 --> 02:15:49,960 GOOD PRACTICE FROM THERE. SO 3613 02:15:49,960 --> 02:15:51,440 ANYTHING THAT BRAIN CAN DO TO 3614 02:15:51,440 --> 02:15:53,920 ASSIST CATALYZE THESE 3615 02:15:53,920 --> 02:15:55,120 DISCUSSIONS TO SUPPORT THEM 3616 02:15:55,120 --> 02:15:56,480 WHETHER IT BE SUPPORTING 3617 02:15:56,480 --> 02:15:58,440 CONSORTIA OR WORKSHOPS 3618 02:15:58,440 --> 02:16:00,200 ENCOURAGING YOU FOLKS TO SIT 3619 02:16:00,200 --> 02:16:02,040 DOWN AND WRITE ANOTHER SET OF 3620 02:16:02,040 --> 02:16:04,240 PAPERS, BUT I H I THIS POSITION 3621 02:16:04,240 --> 02:16:06,320 PAPERS HAVE VERY -- I THINK THIS 3622 02:16:06,320 --> 02:16:07,680 POSITION PAPERS ARE IMPORTANT IN 3623 02:16:07,680 --> 02:16:08,920 FRAMING DIRECTING WHERE THE 3624 02:16:08,920 --> 02:16:09,720 CONVERSATION NEEDS TO BE. THANK 3625 02:16:09,720 --> 02:16:11,240 YOU ALL FOR A GREAT DISCUSSION. 3626 02:16:11,240 --> 02:16:13,240 THIS HAS REALLY BEEN 3627 02:16:13,240 --> 02:16:16,400 ILLUMINATING AT LEAST FOR ME. 3628 02:16:16,400 --> 02:16:21,960 >> NOW IT IS TIME FOR A BREAK. 3629 02:16:21,960 --> 02:16:25,600 WELCOME BACK. I'M IN CHARGE OF 3630 02:16:25,600 --> 02:16:27,520 MODERATING THE LAST COUPLE OF 3631 02:16:27,520 --> 02:16:30,120 SESSIONS OF TODAY'S MEETING. BUT 3632 02:16:30,120 --> 02:16:34,080 BEFORE I DO I WANT TO NOTE TWO 3633 02:16:34,080 --> 02:16:36,440 PERSONAL THINGS. AS -- I WENT 3634 02:16:36,440 --> 02:16:38,360 BACK AND LOOKED THE FIRST 3635 02:16:38,360 --> 02:16:40,720 DOCUMENT I CAN FIND IN MY 3636 02:16:40,720 --> 02:16:44,400 COMPUTER MEMORY THAT HAS NEWG ON 3637 02:16:44,400 --> 02:16:47,400 IT IS FROM MAY OF 2016. IT 3638 02:16:47,400 --> 02:16:50,960 REFERS TO A MEETING IN FEBRUARY 3639 02:16:50,960 --> 02:16:53,160 OF 2016 AND I VAGUELY REMEMBER 3640 02:16:53,160 --> 02:16:54,920 THERE MAY HAVE BEEN EARLIER 3641 02:16:54,920 --> 02:16:56,000 TALKS ABOUT FOUNDING OF THE NEWG 3642 02:16:56,000 --> 02:16:58,640 BACK IN 2015 BUT BASICALLY WE 3643 02:16:58,640 --> 02:17:01,120 HAVE BEEN AROUND FOR SIX YEARS. 3644 02:17:01,120 --> 02:17:03,880 PLUS OR MINUS, A LITTLE BIT. 3645 02:17:03,880 --> 02:17:05,440 ALL THAT TIME STEVE HYMAN HAS 3646 02:17:05,440 --> 02:17:09,040 BEEN A MEMBER OF THE NEWG. JUST 3647 02:17:09,040 --> 02:17:12,600 AS STEVE HYMAN HAS BEEN A MEMBER 3648 02:17:12,600 --> 02:17:15,600 -- A FORCE IN THE MODERN ERA OF 3649 02:17:15,600 --> 02:17:17,000 NEUROETHICS SINCE IT STARTED, 3650 02:17:17,000 --> 02:17:20,120 JUST ABOUT 20 YEARS AGO THIS 3651 02:17:20,120 --> 02:17:22,840 YEAR, I DATED TO THE MAY 2002 3652 02:17:22,840 --> 02:17:24,920 DATA FOUNDATION SPONSORED 3653 02:17:24,920 --> 02:17:25,880 CONFERENCE IN SAN FRANCISCO 3654 02:17:25,880 --> 02:17:30,320 WHICH STEVE HAD A HUGE ROLE IN. 3655 02:17:30,320 --> 02:17:31,920 WITH STEVE OVER THE LAST 20 3656 02:17:31,920 --> 02:17:33,400 YEARS ON THESE KINDS OF ISSUES 3657 02:17:33,400 --> 02:17:34,680 AND HE'S BEEN REALLY IMPORTANT 3658 02:17:34,680 --> 02:17:38,840 FOR THE NEWG. I'M SORRY TO SEE 3659 02:17:38,840 --> 02:17:46,560 HIM ROTATE OFF. SECONDLY, KHARA 3660 02:17:46,560 --> 02:17:47,200 RAMOS HAS BEEN PART OF THE NEWG 3661 02:17:47,200 --> 02:17:50,240 SINCE THE BEGINNING AND PROBABLY 3662 02:17:50,240 --> 02:17:51,520 ONE OF THE MOST IMPORTANT PARTS 3663 02:17:51,520 --> 02:17:53,120 OF NEWG IN TERMS OF BEING THE 3664 02:17:53,120 --> 02:17:56,280 PERSON WHO MADE IT WORK. AND SO 3665 02:17:56,280 --> 02:17:57,560 I DON'T KNOW -- I HAVEN'T SEEN 3666 02:17:57,560 --> 02:17:58,560 HER ON THE PARTICIPANT LIST, I 3667 02:17:58,560 --> 02:18:01,040 DON'T KNOW WHETHER SHE'S LISTING 3668 02:18:01,040 --> 02:18:03,960 OR NOT, BUT I HOPE SHE'S FEELING 3669 02:18:03,960 --> 02:18:05,040 GOOD PROVIBRATIONS BEING SENT 3670 02:18:05,040 --> 02:18:06,520 HER WAY, THIS IS OUR FIRST 3671 02:18:06,520 --> 02:18:08,040 MEETING WITHOUT HER, AND DOESN'T 3672 02:18:08,040 --> 02:18:09,480 FEEL THE SAME I'M SURE IT WILL 3673 02:18:09,480 --> 02:18:12,800 GO -- WE WILL TO GOURD FINE AS 3674 02:18:12,800 --> 02:18:14,360 I'M SURE SHE WILL GO FORWARD 3675 02:18:14,360 --> 02:18:17,440 FINE IN HER FUTURE ENDEAVORS BUT 3676 02:18:17,440 --> 02:18:19,880 AS A PERSONAL LEVEL I WANT TO 3677 02:18:19,880 --> 02:18:22,160 NOTE MY GREAT APPRECIATION FOR 3678 02:18:22,160 --> 02:18:26,040 ALL THE WORK SHE'S DONE WITH THE 3679 02:18:26,040 --> 02:18:28,640 NEUROETHICS WORKING GROUP OF THE 3680 02:18:28,640 --> 02:18:30,520 MULTI-COUNCIL WORKING GROUP OF 3681 02:18:30,520 --> 02:18:35,760 THE NIH BRAIN SERVICE MARK 3682 02:18:35,760 --> 02:18:37,320 INITIATIVE. WHAT HAS THE NEWG 3683 02:18:37,320 --> 02:18:39,880 DONE? WHAT ARE WE SUPPOSED TO BE 3684 02:18:39,880 --> 02:18:41,200 TALKING ABOUT IN THE REMAINDER 3685 02:18:41,200 --> 02:18:42,760 OF TODAY'S MEETING? THAT IS 3686 02:18:42,760 --> 02:18:45,000 REALLY WHAT WE SHOULD BE DOING 3687 02:18:45,000 --> 02:18:46,000 GOING FORWARD. WHAT WE SHOULD 3688 02:18:46,000 --> 02:18:46,960 BE DOING THIS YEAR AND GOING 3689 02:18:46,960 --> 02:18:48,960 FORWARD AND A LITTLE BIT OF 3690 02:18:48,960 --> 02:18:51,640 BACKGROUND. SO I HOPE TO SAY 3691 02:18:51,640 --> 02:18:52,800 VERY LITTLE IN THIS. THIS IS 3692 02:18:52,800 --> 02:18:54,240 REALLY TO HEAR FROM PEOPLE ON 3693 02:18:54,240 --> 02:18:57,160 THE NEWG AND OTHERS ON THE CALL. 3694 02:18:57,160 --> 02:18:58,680 THINGS THAT YOU SHOULD DO, I 3695 02:18:58,680 --> 02:19:00,240 WANT TO START OUT BY DOING A 3696 02:19:00,240 --> 02:19:01,280 LITTLE REVIEW ABOUT WHAT WE HAVE 3697 02:19:01,280 --> 02:19:06,920 DONE. WE PROVIDE INPUT BUT NEVER 3698 02:19:06,920 --> 02:19:10,160 QUOTE ADVICE CLOSE QUOTE TO 3699 02:19:10,160 --> 02:19:12,080 BRAIN OFTEN THROUGH THESE 3700 02:19:12,080 --> 02:19:14,400 MEETINGS VEHICLED GENERALLY 3701 02:19:14,400 --> 02:19:16,600 TWICE A YEAR. WE PROVIDE INPUT 3702 02:19:16,600 --> 02:19:20,120 ON THE TEAM AND NEUROETHICS PAY 3703 02:19:20,120 --> 02:19:23,320 PLAN AND ON NON-NEUROETHICS PLAY 3704 02:19:23,320 --> 02:19:25,320 PLAN WHEN APPROPRIATE, WE GIVE 3705 02:19:25,320 --> 02:19:27,720 INPUT ON CONCEPTS WITH 3706 02:19:27,720 --> 02:19:29,560 ANTICIPATED NEUROETHICS ISSUES, 3707 02:19:29,560 --> 02:19:31,520 AND INPUT ON APPLICATIONS FOR 3708 02:19:31,520 --> 02:19:34,320 PROGRAM STAFF, CONSULTATION FOR 3709 02:19:34,320 --> 02:19:36,560 BRAIN GRANTEES THAT IS ONE THAT 3710 02:19:36,560 --> 02:19:38,240 I THINK IS MOST INTERESTING WORK 3711 02:19:38,240 --> 02:19:39,560 AND SOMETHING I WOULD LIKE TO 3712 02:19:39,560 --> 02:19:42,040 SEE HAPPEN EVEN MORE MORE. WE DO AN 3713 02:19:42,040 --> 02:19:44,560 ANNUAL PORTFOLIO ANALYSIS OF 3714 02:19:44,560 --> 02:19:46,560 BRAIN INITIATIVES GRANTS AND HOW 3715 02:19:46,560 --> 02:19:48,160 HAY MAY HAVE WHERE AND HOW THEY 3716 02:19:48,160 --> 02:19:49,560 MAY HAVE THEIR NEUROETHICS 3717 02:19:49,560 --> 02:19:52,720 IMPLICATIONS. WE PUBLISHED AT 3718 02:19:52,720 --> 02:19:54,520 LEAST FOUR THINGS FOR THE NEWG, 3719 02:19:54,520 --> 02:19:56,120 POINTS TO CONSIDER FOR THE FIELD 3720 02:19:56,120 --> 02:20:01,400 OR WE HAVE INFORMED PUBLISHED 3721 02:20:01,400 --> 02:20:04,320 PIECES, WE CONDUCTED RESEARCH ON 3722 02:20:04,320 --> 02:20:06,880 RESEARCH WITH NEURAL TISSUE 3723 02:20:06,880 --> 02:20:09,520 ETHICS WITH INVASIVE AND 3724 02:20:09,520 --> 02:20:10,720 NON-INVASIVE DEVICES IN HUMANS 3725 02:20:10,720 --> 02:20:12,720 AN TWO WORKSHOPS COMING OUT THAT 3726 02:20:12,720 --> 02:20:14,840 HAVE HAD TOPICS IDENTIFY FROM 3727 02:20:14,840 --> 02:20:17,360 NEWG INPUT WHILE POST TRIAL 3728 02:20:17,360 --> 02:20:19,360 RESPONSIBILITIES AND ONLINE DATA 3729 02:20:19,360 --> 02:20:22,320 SHARING BOTH PLAN FOR 2022. ALL 3730 02:20:22,320 --> 02:20:25,400 THAT IS NICE. ALL THAT IS IN THE 3731 02:20:25,400 --> 02:20:28,440 PAST OR SOON BE IN THE PAST. THE 3732 02:20:28,440 --> 02:20:31,920 QUESTION NOW IS WHAT IS NEXT? ON 3733 02:20:31,920 --> 02:20:37,320 THAT I'M JUST GOING TO OPEN THE 3734 02:20:37,320 --> 02:20:39,480 FLOOR TO COMMENTS FROM PEOPLE 3735 02:20:39,480 --> 02:20:41,360 ABOUT WHAT THEY THINK WE SHOULD 3736 02:20:41,360 --> 02:20:44,920 BE DOING, WE HAVE GOT A SLIDE UP 3737 02:20:44,920 --> 02:20:48,320 ABOUT SOME OF THE THINGS WE 3738 02:20:48,320 --> 02:20:49,880 MIGHT THINK ABOUT IF WE ARE 3739 02:20:49,880 --> 02:20:54,480 TRYING TO DO TAXONOMY FUTURE 3740 02:20:54,480 --> 02:20:57,120 NEWG ACTIVITIES, WITHIN THAT 3741 02:20:57,120 --> 02:20:58,760 FRAMEWORK OR OUTSIDE THEM WHAT 3742 02:20:58,760 --> 02:21:00,920 SHOULD WE BE THINKING ABOUT WHAT 3743 02:21:00,920 --> 02:21:02,320 SHOULD WE BE WORRYING ABOUT, 3744 02:21:02,320 --> 02:21:07,720 WHAT DO YOU WANT US TO CONSIDER? 3745 02:21:07,720 --> 02:21:09,000 THAT IS IS NOT A RHETORICAL 3746 02:21:09,000 --> 02:21:14,040 QUESTION. KICKING IT OVER TO 3747 02:21:14,040 --> 02:21:17,720 ANYBODY WHO WANTS TO CONTRIBUTE 3748 02:21:17,720 --> 02:21:24,600 THROUGH RAISING YOUR YELLOW OR 3749 02:21:24,600 --> 02:21:36,280 OTHERWISE COLORED HAND. WINSTON. 3750 02:21:36,280 --> 02:21:39,680 >> YOU ARE MUTEDDED WINSTON. 3751 02:21:39,680 --> 02:21:43,680 >> TURNED ON THE VIDEO. 3752 02:21:43,680 --> 02:21:45,160 SOMETHING I THINK WITH 3753 02:21:45,160 --> 02:21:46,080 CONVERSATIONS ABOUT SCIENCE AND 3754 02:21:46,080 --> 02:21:48,080 SOCIAL JUSTICE LAST YEAR AND 3755 02:21:48,080 --> 02:21:49,920 ALSO RELEVANT TO THE 3756 02:21:49,920 --> 02:21:51,120 CONVERSATION WE WERE JUST HAVING 3757 02:21:51,120 --> 02:21:53,360 HAS TO DO WITH PUBLIC ENGAGEMENT 3758 02:21:53,360 --> 02:21:54,720 AND NEUROSCIENCE AND WHAT THAT 3759 02:21:54,720 --> 02:21:57,520 MIGHT MEAN AND LOOK LIKE. SO I 3760 02:21:57,520 --> 02:22:00,280 WAS JUST THINKING ABOUT KAREN'S 3761 02:22:00,280 --> 02:22:02,560 POST ON THE CHAT HAVING TO DO 3762 02:22:02,560 --> 02:22:03,800 WITH HOW TO ENGAGE WITH 3763 02:22:03,800 --> 02:22:04,920 DIFFERENT COMMUNE THES THAT ARE 3764 02:22:04,920 --> 02:22:08,240 AFFECTED BY NEUROSCIENCE AND I 3765 02:22:08,240 --> 02:22:09,360 THINK IT WOULD BE INTERESTING TO 3766 02:22:09,360 --> 02:22:11,440 THINK A LITTLE BIT ABOUT WHAT 3767 02:22:11,440 --> 02:22:14,200 THAT MIGHT LOOK LIKE AND MODELS 3768 02:22:14,200 --> 02:22:17,720 THAT ENGAGEMENT THAT GO BEYOND 3769 02:22:17,720 --> 02:22:19,640 COMMUNICATION DISSEMINATION AND 3770 02:22:19,640 --> 02:22:23,160 THAT GET INTO SOME OF THESE 30 3771 02:22:23,160 --> 02:22:24,920 QUESTIONS STEVE WAS TALKING 3772 02:22:24,920 --> 02:22:28,760 ABOUT BEFORE ABOUT HOW TO 3773 02:22:28,760 --> 02:22:31,920 INVOLVE, WHAT IS APPROPRIATE TO 3774 02:22:31,920 --> 02:22:33,360 INVOLVE IN PUBLIC OR PEOPLE 3775 02:22:33,360 --> 02:22:35,880 AFFECTED BY SCIENTIFIC RESEARCH, 3776 02:22:35,880 --> 02:22:37,920 INTO AGENDA SETTING AND INTO 3777 02:22:37,920 --> 02:22:38,800 THINKING ABOUT THESE ETHICAL 3778 02:22:38,800 --> 02:22:42,920 QUESTIONS. 3779 02:22:42,920 --> 02:22:44,320 >> ANY PARTICULAR THOUGHTS ABOUT 3780 02:22:44,320 --> 02:22:47,920 HOW TO GO ABOUT THAT SET OF 3781 02:22:47,920 --> 02:22:49,200 QUESTIONS? 3782 02:22:49,200 --> 02:22:50,440 >> IT WAS KIND OF HOPING THAT I 3783 02:22:50,440 --> 02:22:51,720 WOULD BE SERVING SOMETHING UP 3784 02:22:51,720 --> 02:22:53,400 FOR KAREN TO RESPOND TO BUT I 3785 02:22:53,400 --> 02:22:54,480 DIDN'T WANT TO PUT HER ON THE 3786 02:22:54,480 --> 02:22:57,440 SPOT, SHE'S PROBABLY THE PERSON 3787 02:22:57,440 --> 02:23:00,040 WHO I THINK OF HAS THOUGHT 3788 02:23:00,040 --> 02:23:02,080 DEEPLY ABOUT THESE ISSUES. THESE 3789 02:23:02,080 --> 02:23:03,840 MODELS ABOUT COMMUNITY ADVISORY 3790 02:23:03,840 --> 02:23:05,680 BOARDS OR SOMETHING WE TRYING TO 3791 02:23:05,680 --> 02:23:07,600 INCORPORATE TO OUR WORK THOUGH 3792 02:23:07,600 --> 02:23:09,280 I'LL SHARE THAT I THINK IT HAS 3793 02:23:09,280 --> 02:23:12,040 BEEN TRICKY TO THINK HOW THIS 3794 02:23:12,040 --> 02:23:15,440 REALLY FITS IN, AND SOME IS 3795 02:23:15,440 --> 02:23:19,760 WITHIN NIH AND MORE BROADLY YOU 3796 02:23:19,760 --> 02:23:22,760 HAVE MORE INVESTIGATOR INITIATED 3797 02:23:22,760 --> 02:23:26,720 RESEARCH. I THINK EVEN THINKING 3798 02:23:26,720 --> 02:23:30,760 ABOUT HOW TO FIT IN COMMUNITY 3799 02:23:30,760 --> 02:23:33,520 PARTICIPANT PERSPECTIVES INTO 3800 02:23:33,520 --> 02:23:34,960 AGENDA SETTING RESEARCH CAN BE 3801 02:23:34,960 --> 02:23:36,600 CHALLENGING IN TERMS OF HOW TO 3802 02:23:36,600 --> 02:23:39,440 GENUINELY DO THAT WITHIN THE 3803 02:23:39,440 --> 02:23:40,480 INVESTIGATOR INITIATED MODEL 3804 02:23:40,480 --> 02:23:43,200 THAT WE HAVE. 3805 02:23:43,200 --> 02:23:46,320 >> OKAY. WE'LL LEAVE OPEN 3806 02:23:46,320 --> 02:23:48,720 POSSIBILITY OF KAREN'S YELLOW 3807 02:23:48,720 --> 02:23:50,120 HAND OR OTHERWISE COLORED HAND 3808 02:23:50,120 --> 02:23:52,560 GOING UP BUT NOT SEEING IT RIGHT 3809 02:23:52,560 --> 02:23:53,120 NOW. 3810 02:23:53,120 --> 02:23:57,920 >> SORRY. I HAD EYE SURGERY SO I 3811 02:23:57,920 --> 02:24:02,520 CAN'T REALLY SEE. I THINK ONE OF 3812 02:24:02,520 --> 02:24:03,920 THE THINGS THAT ACTUALLY HAD A 3813 02:24:03,920 --> 02:24:08,600 LITTLE BIT OF A CHAT WITH 3814 02:24:08,600 --> 02:24:09,920 YASMEEN WHO HAS PARTICIPATED IN 3815 02:24:09,920 --> 02:24:12,680 ALL OF US WORK AND I THINK ALL 3816 02:24:12,680 --> 02:24:15,200 OF US IS BROUGHT UP SEVERAL 3817 02:24:15,200 --> 02:24:17,480 TIMES IN THINKING ABOUT HOW TO 3818 02:24:17,480 --> 02:24:20,040 -- THAT ARE ENGAGED IN COMMUNITY 3819 02:24:20,040 --> 02:24:21,720 OF PARTICIPANTS AND FAMILIES AND 3820 02:24:21,720 --> 02:24:26,120 THEIR ADVOCATES, FAMILY 3821 02:24:26,120 --> 02:24:28,440 ADVOCATES AND INDIVIDUALS WHO 3822 02:24:28,440 --> 02:24:29,560 LIVE, HAVE THESE LIVED 3823 02:24:29,560 --> 02:24:31,320 EXPERIENCES TO SHARE. RIGHT NOW 3824 02:24:31,320 --> 02:24:35,720 IT SEEMS LIKE WE RELY ENTIRELY 3825 02:24:35,720 --> 02:24:38,560 -- NOT ENTIRELY, BUT A LOT ON 3826 02:24:38,560 --> 02:24:39,920 OUR NEUROETHICS RESEARCHERS TO 3827 02:24:39,920 --> 02:24:41,720 BRING US THESE INSIGHTS FROM THE 3828 02:24:41,720 --> 02:24:43,440 PARTICIPANTS, WHICH IS REALLY 3829 02:24:43,440 --> 02:24:45,280 GREAT BECAUSE THEY CERTAINLY 3830 02:24:45,280 --> 02:24:47,600 OFFER A IMPORTANT FILTER IN 3831 02:24:47,600 --> 02:24:49,920 SKILL SET, SYNTHESIZING THAT 3832 02:24:49,920 --> 02:24:52,320 INFORMATION. I WONDER AS WE TRY 3833 02:24:52,320 --> 02:24:54,240 TO ASSIST IN DEVELOPING GUIDANCE 3834 02:24:54,240 --> 02:24:59,600 IF WE MIGHT CREATE SOME STRONGER 3835 02:24:59,600 --> 02:25:01,000 MORE SUSTAINABLE IMPACTFUL TYPES 3836 02:25:01,000 --> 02:25:04,440 OF GUIDANCE IF WE SYSTEMATICALLY 3837 02:25:04,440 --> 02:25:05,520 ENGAGE SYSTEM OF THOSE GROUPS 3838 02:25:05,520 --> 02:25:10,320 AND PLUG INTO WHAT ALREADY 3839 02:25:10,320 --> 02:25:11,280 KISSES AND CARVE OUT SOMETHING 3840 02:25:11,280 --> 02:25:13,480 FOR ALL OF US, I DON'T 3841 02:25:13,480 --> 02:25:14,520 UNDERSTAND ALL THE COMPONENTS 3842 02:25:14,520 --> 02:25:17,920 BUT PEOPLE AT NIH WHO COULD 3843 02:25:17,920 --> 02:25:19,920 HELP. THE OTHER BIGGER QUESTION 3844 02:25:19,920 --> 02:25:22,800 BEFORE JOINING PUBLIC ENGAGEMENT 3845 02:25:22,800 --> 02:25:26,720 EXERCISE OR EXITING TO THEM 3846 02:25:26,720 --> 02:25:28,160 WOULD BE WHETHER BRAIN, I 3847 02:25:28,160 --> 02:25:29,720 BROUGHT THIS UP BEFORE IS 3848 02:25:29,720 --> 02:25:33,240 INTERESTED IN THE POSSIBILITY OF 3849 02:25:33,240 --> 02:25:34,360 HEARING CURRENT NARRATIVES WHAT 3850 02:25:34,360 --> 02:25:37,680 THEY ARE ALREADY DOING. THERE 3851 02:25:37,680 --> 02:25:39,000 MAYBE TRUE OPENNESS TO THAT, 3852 02:25:39,000 --> 02:25:41,280 THERE MAYBE OPENNESS TO PARTS OF 3853 02:25:41,280 --> 02:25:43,920 IT VERSUS OTHERS. I DON'T THINK 3854 02:25:43,920 --> 02:25:46,120 WE CAN -- WITH AUTHENTICALLY DO 3855 02:25:46,120 --> 02:25:47,760 A PUBLIC ENGAGEMENT EXERCISE 3856 02:25:47,760 --> 02:25:49,720 THAT IS DEFINED BY -- AS STATE 3857 02:25:49,720 --> 02:25:51,240 OF THE ART AS BIDIRECTIONAL 3858 02:25:51,240 --> 02:25:54,840 COMMUNICATION AT MINIMUM. 3859 02:25:54,840 --> 02:25:55,680 WITHOUT BEING ANSWER TO THAT 3860 02:25:55,680 --> 02:25:56,960 FIRST AND I DON'T KNOW IF WE 3861 02:25:56,960 --> 02:25:58,440 PLAN TO HAVE THAT CONVERSATION 3862 02:25:58,440 --> 02:26:00,800 NOW OR IN THE FUTURE. 3863 02:26:00,800 --> 02:26:02,960 >> INTERESTING, KAREN, DO YOU 3864 02:26:02,960 --> 02:26:04,960 HAVE AN EXAMPLE OF COUNTER 3865 02:26:04,960 --> 02:26:07,920 NARRATIVE THAT YOU THINK MIGHT 3866 02:26:07,920 --> 02:26:13,200 BE PARTICULARLY USEFUL? 3867 02:26:13,200 --> 02:26:15,160 >> THE RESEARCH MAYBE THE WAY 3868 02:26:15,160 --> 02:26:17,320 IT'SING THBEING DONE IS NOT 3869 02:26:17,320 --> 02:26:18,520 ACCEPTABLE. MAYBE PARTICIPANTS 3870 02:26:18,520 --> 02:26:19,720 DON'T THINK THAT RESEARCH SHOULD 3871 02:26:19,720 --> 02:26:21,360 HAPPEN, DON'T THINK A CERTAIN 3872 02:26:21,360 --> 02:26:22,600 USE IS ACCEPTABLE, SOMETHING 3873 02:26:22,600 --> 02:26:24,920 THAT FEELS IMPRACTICAL TO 3874 02:26:24,920 --> 02:26:28,000 SCIENTIST BUT FEELS NECESSARY 3875 02:26:28,000 --> 02:26:31,880 FOR PARTICIPANTS. 3876 02:26:31,880 --> 02:26:33,520 >> DO YOU HAVE SPECIFIC EXAMPLES 3877 02:26:33,520 --> 02:26:34,480 OF SOMETHING THAT MIGHT FALL 3878 02:26:34,480 --> 02:26:37,760 INTO THAT CATEGORY. MAYBE SOME 3879 02:26:37,760 --> 02:26:39,560 ORGANOID RESEARCH WOULD LEAD TO 3880 02:26:39,560 --> 02:26:41,960 COUNTER EXAMPLES, THROUGH SOME 3881 02:26:41,960 --> 02:26:45,080 CHIMERA RESEARCH? 3882 02:26:45,080 --> 02:26:50,320 >> I GUESS I'M THINKING MORE 3883 02:26:50,320 --> 02:26:51,520 SPECIFICALLY ABOUT -- THE CASES 3884 02:26:51,520 --> 02:26:54,400 IT SEEMED SENSITIVE IS WITH 3885 02:26:54,400 --> 02:26:56,080 HUMAN PARTICIPANTS STUDIES. AND 3886 02:26:56,080 --> 02:27:00,520 GETTING PERSPECTIVES ON WAYS IN 3887 02:27:00,520 --> 02:27:03,120 WHICH THAT FROM DETAILS WE HAVE 3888 02:27:03,120 --> 02:27:05,800 HEARD FROM RESEARCHERS LIKE SARA 3889 02:27:05,800 --> 02:27:07,280 AND ASHLEY IF THERE ARE CERTAIN 3890 02:27:07,280 --> 02:27:10,120 THINGS WE HEAR WE ARE WILLING TO 3891 02:27:10,120 --> 02:27:11,680 UPDATE ADJUST IN OUR PRACTICES 3892 02:27:11,680 --> 02:27:13,800 ARE WE WILLING DO HEAR FOR 3893 02:27:13,800 --> 02:27:18,160 EXAMPLE, WE TALKED ABOUT VALUE 3894 02:27:18,160 --> 02:27:21,120 PROPOSITION AND COMPENSATION AND 3895 02:27:21,120 --> 02:27:23,760 ARE WE WILLING TO LISTEN TO AND 3896 02:27:23,760 --> 02:27:24,960 INTEGRATE VARIETY OF 3897 02:27:24,960 --> 02:27:27,920 PERSPECTIVES AN LIVED 3898 02:27:27,920 --> 02:27:32,400 EXPERIENCES THAT DETERMINE 3899 02:27:32,400 --> 02:27:35,960 PROPORTION OF RISK OF THOSE 3900 02:27:35,960 --> 02:27:36,320 INDIVIDUALS. 3901 02:27:36,320 --> 02:27:37,360 >> STEVE. 3902 02:27:37,360 --> 02:27:41,320 >> I HAVE TWO THINGS AND BY THE 3903 02:27:41,320 --> 02:27:43,760 WAY THEY POINT TO THE FACT THAT 3904 02:27:43,760 --> 02:27:47,320 REALLY TIME FOR ME TO MOVE ON 3905 02:27:47,320 --> 02:27:49,080 BECAUSE I PERSEVERATE ON SOME OF 3906 02:27:49,080 --> 02:27:51,280 THESE THINGS. BUT ONE IS 3907 02:27:51,280 --> 02:27:58,160 PREDICTION. THERE ARE NOW 3908 02:27:58,160 --> 02:27:59,600 SEVERAL COMPANIES THAT ARE 3909 02:27:59,600 --> 02:28:01,320 OFFERING TO USE POLYGENIC SCORES 3910 02:28:01,320 --> 02:28:06,840 FOR EDUCATIONAL ATTAINMENT OR 3911 02:28:06,840 --> 02:28:08,160 COGNITIVE ABILITY, SO NOT JUST 3912 02:28:08,160 --> 02:28:10,640 DISEASE RISK LIKE TYPE TWO 3913 02:28:10,640 --> 02:28:12,080 DIABETES BUT COGNITIVE ABILITY 3914 02:28:12,080 --> 02:28:13,960 FOR EMBRYO SELECTION, PEOPLE WHO 3915 02:28:13,960 --> 02:28:16,800 UNDERGO IVF AND THERE IS A 3916 02:28:16,800 --> 02:28:22,440 COMPANY BASED AT STANFORD CALLED 3917 02:28:22,440 --> 02:28:23,880 ORCHID THAT WANTS TO EXTEND 3918 02:28:23,880 --> 02:28:27,360 THESE APPROACHES WE ALL KNOW 3919 02:28:27,360 --> 02:28:29,720 THAT THERE ARE AD ROW VOW KATES 3920 02:28:29,720 --> 02:28:32,360 FOR POLYGENIC SCORES FOR 3921 02:28:32,360 --> 02:28:34,120 COGNITIVE ABILITY, PERSONALIZED 3922 02:28:34,120 --> 02:28:35,760 EDUCATION BUT OLD DAYS CALLED 3923 02:28:35,760 --> 02:28:37,000 TRACK AND IT WASN'T A VERY GOOD 3924 02:28:37,000 --> 02:28:42,040 THING. AND WHILE THIS IS REALLY 3925 02:28:42,040 --> 02:28:44,760 MORE GENETICS WHEEL HOUSE, WE 3926 02:28:44,760 --> 02:28:46,640 IMAGINE INTEGRATING DATA TYPES 3927 02:28:46,640 --> 02:28:50,520 AND IMAGINE INTEGRATING 3928 02:28:50,520 --> 02:28:54,640 POLYGENIC SCORES WITH ADVANCED 3929 02:28:54,640 --> 02:28:57,440 NEUROIMAGING TECHNOLOGIES, OR 3930 02:28:57,440 --> 02:28:59,520 WHAT WE ARE GOING TO LEARN FROM 3931 02:28:59,520 --> 02:29:07,200 SINGLE CELL ATLASES. AND YOU CAN 3932 02:29:07,200 --> 02:29:12,520 IMAGINE PRETTY POWERFUL 3933 02:29:12,520 --> 02:29:14,320 PREDICTIVE MECHANISMS WHICH 3934 02:29:14,320 --> 02:29:16,520 COULD LEAD TO PROBLEMATIC -- 3935 02:29:16,520 --> 02:29:18,480 THEY -- IT LEADS VERY GOOD 3936 02:29:18,480 --> 02:29:20,680 THINGS, RIGHT, WITH RESPECT TO 3937 02:29:20,680 --> 02:29:21,680 PREVENTION OF DISEASE BUT THEY 3938 02:29:21,680 --> 02:29:28,320 CAN ALSO LEAD TO FORECLOSING 3939 02:29:28,320 --> 02:29:30,400 PEOPLE'S OPPORTUNITIES AND 3940 02:29:30,400 --> 02:29:31,000 SOCIETY TRAGICALLY OFTEN TIPS 3941 02:29:31,000 --> 02:29:33,080 TOWARD THE LATTER. SO I THINK 3942 02:29:33,080 --> 02:29:33,920 THIS IDEA OF PREDICTION IS 3943 02:29:33,920 --> 02:29:42,240 IMPORTANT. THE OTHER ONE IS 3944 02:29:42,240 --> 02:29:46,120 UNDER THE FOR ME THE SUBJECT TO 3945 02:29:46,120 --> 02:29:47,800 IT OF WE LIKE TO MEASURE THE 3946 02:29:47,800 --> 02:29:51,680 WRONG THINGS VERY, VERY WELL. 3947 02:29:51,680 --> 02:29:52,680 BECAUSE THEY ARE EASILY 3948 02:29:52,680 --> 02:29:54,920 MEASURED. IN MEDICINE IN 3949 02:29:54,920 --> 02:29:59,520 NEUROLOGY AND PSYCHIATRY, IN 3950 02:29:59,520 --> 02:30:02,840 NEUROSURGERY WE NOW ARE WHAT WE 3951 02:30:02,840 --> 02:30:04,920 CAN MEASURE JUST TAKE METAPHOR 3952 02:30:04,920 --> 02:30:08,920 REFLEXES THOSE ARE EASY TO 3953 02:30:08,920 --> 02:30:11,440 MEASURE. BUT WE DON'T LIKE TO TO 3954 02:30:11,440 --> 02:30:12,920 MEASURE THINGS LIKE -- WHAT IS 3955 02:30:12,920 --> 02:30:16,120 AT THE TOP OF THE LIST THAT 3956 02:30:16,120 --> 02:30:20,160 CHRISTINE GAVE OUT CAME FROM 3957 02:30:20,160 --> 02:30:23,440 BRAIN 2.0 REPORT WHICH ARE 3958 02:30:23,440 --> 02:30:24,680 THINGS LIKE PERSON HOOD IDENTITY 3959 02:30:24,680 --> 02:30:27,080 AGENCY MORAL AGENCY AND 3960 02:30:27,080 --> 02:30:32,920 AUTONOMY. THESE CONCEPTS OFTEN 3961 02:30:32,920 --> 02:30:35,120 FEEL FOREIGN TO BRAIN SCIENTISTS 3962 02:30:35,120 --> 02:30:40,160 AND CLINICAL INVESTIGATORS BUT 3963 02:30:40,160 --> 02:30:42,680 IN FACT MAYBE AS A RESULT WE 3964 02:30:42,680 --> 02:30:45,560 DON'T SPEND ENOUGH TIME ON. AND 3965 02:30:45,560 --> 02:30:49,320 THEY DO HAVE PRACTICAL 3966 02:30:49,320 --> 02:30:50,720 IMPLICATION, THINGS LIKE ADVANCE 3967 02:30:50,720 --> 02:30:57,600 DIRECTIVES. OR LEGAL 3968 02:30:57,600 --> 02:30:58,840 CULPABILITY UNDER NARROW 3969 02:30:58,840 --> 02:31:00,440 CIRCUMSTANCES THAT NEED IT 3970 02:31:00,440 --> 02:31:03,120 DESCRIBED TO US BECAUSE SHE'S 3971 02:31:03,120 --> 02:31:03,880 STUDIED NEUROSCIENCE AND THE 3972 02:31:03,880 --> 02:31:11,240 LAW. OR THE QUESTION OF AUTONOMY 3973 02:31:11,240 --> 02:31:14,800 OR WHAT IS NOW APPEARING MORE 3974 02:31:14,800 --> 02:31:18,560 AND MORE IN THE NEWSPAPERS 3975 02:31:18,560 --> 02:31:21,680 EXPLAINING AWAY WELL PUBLICIZED 3976 02:31:21,680 --> 02:31:23,280 NEGATIVE BEHAVIORS OR CRIMES 3977 02:31:23,280 --> 02:31:24,920 BASED ON MENTAL ILLNESS, THIS IS 3978 02:31:24,920 --> 02:31:32,080 MAKING A COME BACK. I THINK ALL 3979 02:31:32,080 --> 02:31:33,640 OF THESE THOUGH THEY TEND TO BE 3980 02:31:33,640 --> 02:31:35,280 OUT OF THE WHEEL HOUSE OF 3981 02:31:35,280 --> 02:31:39,360 NEUROBIOLOGY ARE GOING TO BE 3982 02:31:39,360 --> 02:31:40,600 VERY IMPORTANT -- HAVE VERY 3983 02:31:40,600 --> 02:31:42,680 IMPORTANT IMPLICATIONS AGAIN 3984 02:31:42,680 --> 02:31:45,840 FROM BOSS BASIC SIDE OF THE 3985 02:31:45,840 --> 02:31:48,480 BRAIN BUT ALSO FROM THE KINDS OF 3986 02:31:48,480 --> 02:31:50,560 INTERVENTIONS THAT WE HEARD 3987 02:31:50,560 --> 02:31:53,520 ABOUT TODAY AND THAT WE HEARD 3988 02:31:53,520 --> 02:31:54,640 REFLECTIONS ON FROM ASHLEY AND 3989 02:31:54,640 --> 02:31:57,360 SARA. SO THOSE WOULD BE MY 3990 02:31:57,360 --> 02:31:59,880 SUGGESTIONS, NOT TO -- 3991 02:31:59,880 --> 02:32:03,520 ESPECIALLY PREDICTION AND OTHER 3992 02:32:03,520 --> 02:32:09,240 GROUPS OF IDEAS SHOULDN'T SLIP 3993 02:32:09,240 --> 02:32:11,280 AWAY AND BE IGNORED. 3994 02:32:11,280 --> 02:32:16,920 >> I DO WANT TO PUSH BAGGEN THE 3995 02:32:16,920 --> 02:32:19,680 IDEA THAT ORCHID IS BASED OUT OF 3996 02:32:19,680 --> 02:32:20,080 STANFORD THOUGH -- 3997 02:32:20,080 --> 02:32:21,720 >> I DID THAT FOR YOU, HANK. 3998 02:32:21,720 --> 02:32:24,320 >> I KNOW YOU DID. BUT ACTUALLY 3999 02:32:24,320 --> 02:32:25,760 YOU TOUCHED A NERVE YOU MAY NOT 4000 02:32:25,760 --> 02:32:28,280 HAVE REALIZED YOU WERE GOING TO 4001 02:32:28,280 --> 02:32:30,960 HIT, IT'S FOUNDER WAS ACTUALLY A 4002 02:32:30,960 --> 02:32:32,920 -- AS A SOPHOMORE WAS A STUDENT 4003 02:32:32,920 --> 02:32:35,120 IN MY LAW AND BIOSCIENCES 4004 02:32:35,120 --> 02:32:38,080 SEMINAR WHERE SHE EITHER -- SHE 4005 02:32:38,080 --> 02:32:39,640 SEEMED AT THE TIME TO DO WELL 4006 02:32:39,640 --> 02:32:42,120 THOUGH IN RETROSPECT I'M NOT 4007 02:32:42,120 --> 02:32:43,560 SURE I GAVE HER THE RIGHT GRADE 4008 02:32:43,560 --> 02:32:47,400 BUT I DO THINK THE PREDICTION 4009 02:32:47,400 --> 02:32:48,960 STUFF IS IMPORTANT AND THOUGH 4010 02:32:48,960 --> 02:32:51,240 BRAIN HAS NOT BEEN -- HAS NOT 4011 02:32:51,240 --> 02:32:53,720 FOCUSED ON GENETIC ISSUES 4012 02:32:53,720 --> 02:32:54,960 SUBSTANTIALLY, THE PREDICTION 4013 02:32:54,960 --> 02:32:57,640 INVOLVES ALL SORTS OF THINGS 4014 02:32:57,640 --> 02:32:59,760 THAT GO FAR BEYOND GENETICS FROM 4015 02:32:59,760 --> 02:33:01,200 STRUCTURAL AND FUNCTIONAL SORTS 4016 02:33:01,200 --> 02:33:03,520 OF MEASURES, BIOMARKERS, 4017 02:33:03,520 --> 02:33:05,320 MEASURES, ALL SORTS OF THINGS. 4018 02:33:05,320 --> 02:33:07,160 >> INTEGRATION ALSO MULTIPLE 4019 02:33:07,160 --> 02:33:08,880 DATA TYPES THAT WILL MAKE IT SO 4020 02:33:08,880 --> 02:33:10,440 POWERFUL. 4021 02:33:10,440 --> 02:33:15,360 >> YEAH. CHRISTINE. 4022 02:33:15,360 --> 02:33:20,480 >> SO I WANTED TO PICK UP ON 4023 02:33:20,480 --> 02:33:21,800 ACTUALLY BOTH WHAT WINSTON AND 4024 02:33:21,800 --> 02:33:23,480 KAREN WERE TALKING ABOUT AND A 4025 02:33:23,480 --> 02:33:24,600 LITTLE BIT WHAT STEVE WAS 4026 02:33:24,600 --> 02:33:27,320 TALKING ABOUT SO IN TERMS OF THE 4027 02:33:27,320 --> 02:33:29,520 PUBLIC ENGAGEMENT AND INVOLVING 4028 02:33:29,520 --> 02:33:32,280 PARTICIPANTS, I THINK THERE'S 4029 02:33:32,280 --> 02:33:33,840 TWO REALLY IMPORTANT WAYS THE 4030 02:33:33,840 --> 02:33:37,960 PUBLIC CAN BE ENGAGED. ONE IS 4031 02:33:37,960 --> 02:33:39,760 ENGAGING MEMBERS OF PUBLIC ARE 4032 02:33:39,760 --> 02:33:41,320 NOT NECESSARILY PARTICIPANTS IN 4033 02:33:41,320 --> 02:33:42,760 STUDIES BUT HAVE VIEWS HOW 4034 02:33:42,760 --> 02:33:45,200 RESEARCH OUGHT TO GO AND MIGHT 4035 02:33:45,200 --> 02:33:47,360 WANT TO UNDERSTAND WHAT RESEARCH 4036 02:33:47,360 --> 02:33:48,760 IS ALL ABOUT. THERE'S SOME 4037 02:33:48,760 --> 02:33:51,640 REALLY INTERESTING MODELS OF 4038 02:33:51,640 --> 02:33:52,520 DEMOCRATIC DELIBERATION AND 4039 02:33:52,520 --> 02:33:55,160 OTHER KINDS OF EXERCISES TO 4040 02:33:55,160 --> 02:33:56,160 ENGAGE GENERAL MEMBERS OF THE 4041 02:33:56,160 --> 02:33:58,480 PUBLIC IN UNDERSTANDING KINDS OF 4042 02:33:58,480 --> 02:34:00,960 SCIENCE AND THE VALUE OF CERTAIN 4043 02:34:00,960 --> 02:34:03,880 SCIENCE AND SORT OF PITFALLS OF 4044 02:34:03,880 --> 02:34:05,200 CERTAIN SCIENCE, SO HA IS A 4045 02:34:05,200 --> 02:34:06,920 REALLY INTERESTING WAY THE GO. I 4046 02:34:06,920 --> 02:34:08,040 ALSO THINK IT IS VERY DIFFERENT 4047 02:34:08,040 --> 02:34:10,800 THAN THE IDEA OF BRINGING PEOPLE 4048 02:34:10,800 --> 02:34:14,200 IN TO THE SYSTEM. ANOTHER MODEL 4049 02:34:14,200 --> 02:34:15,640 THAT MIGHT BE WORTH LOOKING AT 4050 02:34:15,640 --> 02:34:18,480 OR THINKING ABOUT IS THE HIV 4051 02:34:18,480 --> 02:34:22,160 MODEL, WHERE I SORT OF GREW UP 4052 02:34:22,160 --> 02:34:25,840 AND THERE ARE IN THAT RESEARCH 4053 02:34:25,840 --> 02:34:26,920 ENTERPRISE, THERE ARE VERY 4054 02:34:26,920 --> 02:34:30,960 ACTIVE CABS, MEMBERS OF THE 4055 02:34:30,960 --> 02:34:34,480 COMMUNITY ON SCIENTIFIC REVIEW 4056 02:34:34,480 --> 02:34:37,160 BOARDS, PLANNING BOARDS, ON -- 4057 02:34:37,160 --> 02:34:39,240 AT EVERY LEVEL SO THEY HELP IN 4058 02:34:39,240 --> 02:34:41,400 THE PRIORITY SETTING, IN THE 4059 02:34:41,400 --> 02:34:43,280 DESIGN, IN THE EXECUTION OF 4060 02:34:43,280 --> 02:34:46,960 RESEARCH, THAT IS A VERY UNIQUE 4061 02:34:46,960 --> 02:34:49,000 MODEL THAT IS WORTH AT LEAST 4062 02:34:49,000 --> 02:34:52,920 THINKING ABOUT IN THIS CONTEXT. 4063 02:34:52,920 --> 02:34:54,880 I THINK KAREN'S VIEW THOUGH IS 4064 02:34:54,880 --> 02:34:58,000 WHAT -- KAREN'S CAUTION ABOUT 4065 02:34:58,000 --> 02:35:02,880 WHAT ARE WE WILLING TO DO HERE, 4066 02:35:02,880 --> 02:35:05,040 DO WE WANT VERY IMPORTANT THING 4067 02:35:05,040 --> 02:35:07,320 TO KEEP IN MIND. WITH RESPECT 4068 02:35:07,320 --> 02:35:09,040 TO WHAT STEVE SAID ABOUT 4069 02:35:09,040 --> 02:35:10,800 PREDICTION, I THINK IT RAISES 4070 02:35:10,800 --> 02:35:13,360 ALSO A WHOLE SET OF OTHER 4071 02:35:13,360 --> 02:35:15,040 QUESTIONS LIKE USE OF 4072 02:35:15,040 --> 02:35:18,360 NEUROSCIENCE OUTSIDE OF THE 4073 02:35:18,360 --> 02:35:19,760 CLINIC. YOU SAID EDUCATION AND 4074 02:35:19,760 --> 02:35:24,080 OTHER AREAS OF LIFE WHERE SOME 4075 02:35:24,080 --> 02:35:25,080 OF THE FINDINGS THAT MIGHT BE 4076 02:35:25,080 --> 02:35:28,400 COMING FROM THE STUDIES THAT 4077 02:35:28,400 --> 02:35:30,880 BRAIN IS DOING OR THINKING OF 4078 02:35:30,880 --> 02:35:33,520 DOING IN THE FUTURE COULD BE 4079 02:35:33,520 --> 02:35:35,000 USED BOTH INTEGRATE WITH OTHER 4080 02:35:35,000 --> 02:35:37,960 DATA AND NOT, TO MAKE DECISIONS 4081 02:35:37,960 --> 02:35:41,720 OUTSIDE OF THE CLINIC. SO THE 4082 02:35:41,720 --> 02:35:42,600 QUESTION, HOW MUCH DOES BRAIN 4083 02:35:42,600 --> 02:35:44,000 GET INVOLVED WITH THOSE KINDS OF 4084 02:35:44,000 --> 02:35:49,120 DECISIONS. AND INTERESTK IDEA 4085 02:35:49,120 --> 02:35:53,840 OF O IN THIS WHOLE WORLD OF 4086 02:35:53,840 --> 02:35:55,280 PREDICTION, HOW MUCH PUBLIC 4087 02:35:55,280 --> 02:35:57,520 ENGAGEMENT MIGHT BE USEFUL THERE 4088 02:35:57,520 --> 02:36:02,320 TO SORT OF THINK ABOUT LIMITS ON 4089 02:36:02,320 --> 02:36:04,520 THOSE PREDICTIVE ALGORITHMS IF 4090 02:36:04,520 --> 02:36:10,520 LIMITS ARE ON THE TABLE. AND ONE 4091 02:36:10,520 --> 02:36:13,120 LAST THING. STEVE MENTIONED WE 4092 02:36:13,120 --> 02:36:15,120 DON'T DO WELL MEASURING AGENCY 4093 02:36:15,120 --> 02:36:17,840 AND AUTONOMY IN THOSE ISSUES. I 4094 02:36:17,840 --> 02:36:19,640 AGREE, STEVE, WE DON'T AND I 4095 02:36:19,640 --> 02:36:23,280 HAVE IMPRESSED BY SARA'S STUDY 4096 02:36:23,280 --> 02:36:25,360 WHERE SHE PART OF WHAT THEY ARE 4097 02:36:25,360 --> 02:36:27,880 TRYING TO DO IS UNDERSTAND 4098 02:36:27,880 --> 02:36:29,560 AGENCY SO FUND MORGUE RESEARCH 4099 02:36:29,560 --> 02:36:33,440 LIKE THAT, THAT CAN HELP US 4100 02:36:33,440 --> 02:36:36,520 REALLY DELVE INTO SOME OF THOSE 4101 02:36:36,520 --> 02:36:37,680 COMPLICATED CONCEPTS AND 4102 02:36:37,680 --> 02:36:39,200 PHENOMENON AND UNDERSTAND THEM 4103 02:36:39,200 --> 02:36:40,360 FROM PERSPECTIVE OF PEOPLE WE 4104 02:36:40,360 --> 02:36:41,920 ARE WORKING WITH, IS A REALLY 4105 02:36:41,920 --> 02:36:47,720 VALUABLE WAY TO GO FORWARD. 4106 02:36:47,720 --> 02:36:49,640 >> SO I DO THINK SOME OF WHAT 4107 02:36:49,640 --> 02:36:51,520 STEVE BROUGHT UP RAISES A DEEP 4108 02:36:51,520 --> 02:36:54,640 QUESTION ABOUT THE NEWG AND THAT 4109 02:36:54,640 --> 02:36:57,320 IS ARE WE LOOKING, IT HAS BEEN 4110 02:36:57,320 --> 02:37:01,720 CLEAR WE ARE NOT A GENERAL 4111 02:37:01,720 --> 02:37:04,360 NEUROETHICS GROUP. WE ARE GIVING 4112 02:37:04,360 --> 02:37:05,640 INPUT TO THE BRAIN INITIATIVE. 4113 02:37:05,640 --> 02:37:06,720 WE ARE PART OF THE BRAIN 4114 02:37:06,720 --> 02:37:08,400 INITIATIVE, ARE WE LIMITED TO 4115 02:37:08,400 --> 02:37:10,560 ONLY THINGS THAT THE BRAIN 4116 02:37:10,560 --> 02:37:12,000 INITIATIVE DOES. THAT ARE 4117 02:37:12,000 --> 02:37:14,040 DIRECTLY AFFECTED OR SOMEWHAT 4118 02:37:14,040 --> 02:37:15,720 INDIRECTLY AFFECTED BY THE BRAIN 4119 02:37:15,720 --> 02:37:17,040 INITIATIVE. IT IS AN IMPORTANT 4120 02:37:17,040 --> 02:37:20,080 QUESTION GOING FORWARD. HOW 4121 02:37:20,080 --> 02:37:21,560 CLOSE THE NEWG NEEDS TO BE TIED 4122 02:37:21,560 --> 02:37:23,080 TO THE BRAIN INITIATIVE WHICH 4123 02:37:23,080 --> 02:37:27,320 HASN'T BEEN DOING A LOT OF THIS 4124 02:37:27,320 --> 02:37:29,720 PREDICTIVE WORK THOUGH I SUSPECT 4125 02:37:29,720 --> 02:37:31,600 THERE IS SOME OUT THERE. BUT 4126 02:37:31,600 --> 02:37:33,480 CERTAINLY THE TOOLS THE BRAIN 4127 02:37:33,480 --> 02:37:35,960 INITIATIVE IS WORKING ON COULD 4128 02:37:35,960 --> 02:37:38,840 PLAY A ROLE IN SOME OF THAT. I 4129 02:37:38,840 --> 02:37:41,360 WOULD SAY STEVE ALSO IT IS NOT 4130 02:37:41,360 --> 02:37:42,520 JUST PREDICTIVE BUT EARLY 4131 02:37:42,520 --> 02:37:46,560 DIAGNOSTIC. SO THINGS LIKE BLOOD 4132 02:37:46,560 --> 02:37:52,960 SERUM BIOMARKERS FOR ALZHEIMER'S 4133 02:37:52,960 --> 02:37:54,160 DISEASE ALSO HAVE SUBSTANTIAL 4134 02:37:54,160 --> 02:37:55,920 EFFECTS IF THEY BECOME VALIDATE 4135 02:37:55,920 --> 02:37:59,240 AND WIDELY AVAILABLE. IT IS 4136 02:37:59,240 --> 02:38:00,080 SOMETHING THE NEWG SHOULD BE 4137 02:38:00,080 --> 02:38:01,920 TAKING ON OR NOT, THE QUESTION 4138 02:38:01,920 --> 02:38:02,720 ABOVE MY PAY GRADE. 4139 02:38:02,720 --> 02:38:06,480 >> I'M MORE CONCERNED ABOUT THE 4140 02:38:06,480 --> 02:38:10,080 NON-MEDICAL. I THINK WHEN IT WAS 4141 02:38:10,080 --> 02:38:14,480 POSSIBLE TO PREDICT HUNTINGTON'S 4142 02:38:14,480 --> 02:38:18,680 DISEASE BEGINNING AROUND 1990, 4143 02:38:18,680 --> 02:38:20,240 SOME OF THE QUESTIONS LIKE SERUM 4144 02:38:20,240 --> 02:38:24,000 -- AN EASIER SERUM TEST FOR 4145 02:38:24,000 --> 02:38:25,600 ALZHEIMER RISK STARTED TO GET 4146 02:38:25,600 --> 02:38:27,840 RAISED BUT I DO THINK -- I THINK 4147 02:38:27,840 --> 02:38:31,040 SOME OF THE IMAGING TECHNOLOGIES 4148 02:38:31,040 --> 02:38:33,280 THAT HAVE AT LEAST BEEN 4149 02:38:33,280 --> 02:38:37,560 FACILITATED BY BRAIN HAVE BEEN 4150 02:38:37,560 --> 02:38:39,920 -- HAVE REASONABLE CORRELATIONS 4151 02:38:39,920 --> 02:38:44,160 WITH COGNITIVE ABILITIES AND 4152 02:38:44,160 --> 02:38:47,000 PUNITIVELY WITH IQ. I HAVEN'T 4153 02:38:47,000 --> 02:38:51,840 READ THAT LETTER CAREFULLY. 4154 02:38:51,840 --> 02:38:54,320 AGAIN, EVEN THOUGH BRAIN ISN'T 4155 02:38:54,320 --> 02:38:57,840 DOING THE KIND OF POPULATION 4156 02:38:57,840 --> 02:38:59,360 GENETICS CERTAINLY THE GENETICS 4157 02:38:59,360 --> 02:39:03,440 OF COGNITIVE ABILITY AND 4158 02:39:03,440 --> 02:39:07,800 PUNITIVELY OF EDUCATIONAL 4159 02:39:07,800 --> 02:39:08,920 ATTAINMENT IF INTEGRATED WITH 4160 02:39:08,920 --> 02:39:10,840 SOME OF THAT IMAGING WORK AND 4161 02:39:10,840 --> 02:39:11,920 POTENTIALLY SINGLE CELL WORK 4162 02:39:11,920 --> 02:39:16,160 WHICH WE WILL GET TO IN BIOLOGY, 4163 02:39:16,160 --> 02:39:21,000 I THINK IF NOT THE NEWG THEN 4164 02:39:21,000 --> 02:39:22,520 WHO. SOMEBODY SHOULD BE TAKING 4165 02:39:22,520 --> 02:39:24,160 THIS UP FROM A VERY 4166 02:39:24,160 --> 02:39:27,240 SOPHISTICATED POINT OF VIEW. AND 4167 02:39:27,240 --> 02:39:28,920 NOT JUST TRASH ALL OF IT AHEAD 4168 02:39:28,920 --> 02:39:30,800 OF TIME BUT TO UNDERSTAND WHAT 4169 02:39:30,800 --> 02:39:34,400 ACTUALLY HOW GOOD IS PREDICTION 4170 02:39:34,400 --> 02:39:36,920 AND ALSO HOW PROBABILISTIC AND 4171 02:39:36,920 --> 02:39:40,360 WHAT ARE -- AND IF YOU APPLY 4172 02:39:40,360 --> 02:39:44,920 THAT TO POLICIES OUTSIDE OF 4173 02:39:44,920 --> 02:39:47,920 MEDICINE, WHAT -- ARE THERE 4174 02:39:47,920 --> 02:39:50,480 BENEFITS? I ALWAYS SEE THE RISKS 4175 02:39:50,480 --> 02:39:51,720 BUT YOU KNOW, THERE MAYBE 4176 02:39:51,720 --> 02:39:53,400 BENEFITS AS WELL. 4177 02:39:53,400 --> 02:39:57,800 >> SO I THINK THE ORDER THE 4178 02:39:57,800 --> 02:39:59,880 HANDS WENT UP A LITTLE 4179 02:39:59,880 --> 02:40:01,440 DIFFERENTLY THE WAY THEY 4180 02:40:01,440 --> 02:40:04,840 DISPLAYED ON MY SCREEN. NITA 4181 02:40:04,840 --> 02:40:06,600 NEXT THEN CHRISTINE, JOHN AN 4182 02:40:06,600 --> 02:40:06,960 JIM. 4183 02:40:06,960 --> 02:40:10,240 >> THANKS, HANK. SO I WANT TO 4184 02:40:10,240 --> 02:40:13,880 COMMENT ON KIND OF WHERE I HOPE 4185 02:40:13,880 --> 02:40:15,760 WE GO IN THREE DIFFERENT WAYS. 4186 02:40:15,760 --> 02:40:18,320 ONE IS TOPICALLY WHICH IS I DO 4187 02:40:18,320 --> 02:40:21,000 THINK LOOKING AT AREAS OF 4188 02:40:21,000 --> 02:40:22,320 INTERSECTION WITH NEUROETHICS 4189 02:40:22,320 --> 02:40:24,120 INCLUDING GENETICS BUT ALSO 4190 02:40:24,120 --> 02:40:27,400 ARTIFICIAL INTELLIGENCE, IS AN 4191 02:40:27,400 --> 02:40:30,240 AREA REALLY VALUABLE FOR US TO 4192 02:40:30,240 --> 02:40:32,120 MOVE INTO, THERE'S SO MANY 4193 02:40:32,120 --> 02:40:33,120 ISSUES THAT OVERLAP THAT WE 4194 02:40:33,120 --> 02:40:36,440 HAVEN'T REALLY TOUCHED UPON. I 4195 02:40:36,440 --> 02:40:38,880 ALSO WOULD LIKE FOR US TO FOCUS 4196 02:40:38,880 --> 02:40:40,680 MORE ON MISINFORMATION BOTH AT 4197 02:40:40,680 --> 02:40:44,240 EFFECT ON BRAIN BUT ALSO HOW 4198 02:40:44,240 --> 02:40:45,440 MISINFORMATION SPREADS, 4199 02:40:45,440 --> 02:40:47,000 MISINFORMATION IN AGE OF COVID, 4200 02:40:47,000 --> 02:40:48,720 WHAT WE MIGHT BE ABLE TO DO IN 4201 02:40:48,720 --> 02:40:51,680 ASSISTING WITH THAT, WHICH 4202 02:40:51,680 --> 02:40:56,680 BRINGS ME TO SOME WHAT I HOPE WE 4203 02:40:56,680 --> 02:40:59,240 DO, PART I HOPE WE HOLD MORE 4204 02:40:59,240 --> 02:41:00,480 WORKSHOPS, THAT WOULD BE 4205 02:41:00,480 --> 02:41:03,520 TANGIBLE WORKSHOPS FOR PEOPLE 4206 02:41:03,520 --> 02:41:05,040 WHO ARE INVESTIGATORS IN THE 4207 02:41:05,040 --> 02:41:07,520 BRAIN AND OTHERS AND THAT 4208 02:41:07,520 --> 02:41:09,880 INCLUDE THINGS LIKE SCIENCE 4209 02:41:09,880 --> 02:41:11,120 COMMUNICATION WORKSHOPS. I'M 4210 02:41:11,120 --> 02:41:20,920 VERY IMPRESSED WITH PROJECT HALO 4211 02:41:20,920 --> 02:41:22,400 ENGAGEMENT TRAINING SCIENCETISES 4212 02:41:22,400 --> 02:41:25,760 TO DEVELOP TIKTOK VIDEOS TO 4213 02:41:25,760 --> 02:41:27,560 SPREAD INFORMATION TO COMBAT 4214 02:41:27,560 --> 02:41:28,360 MISINFORMATION AND I WOULD LOVE 4215 02:41:28,360 --> 02:41:30,240 FOR US TO SEE, LOVE TO SEE US 4216 02:41:30,240 --> 02:41:33,680 ENGAGED IN MORE SKILLS BASED 4217 02:41:33,680 --> 02:41:35,520 WORKSHOPS. WHICH INCLUDES 4218 02:41:35,520 --> 02:41:36,560 STRATEGIES FOR INTEGRATION OF 4219 02:41:36,560 --> 02:41:40,640 ETHICS INTO RESEARCH PROGRAMS. 4220 02:41:40,640 --> 02:41:43,080 HOW -- WHAT ARE DIFFERENT MODELS 4221 02:41:43,080 --> 02:41:45,160 THAT RESEARCH TEAMS USE, WHAT 4222 02:41:45,160 --> 02:41:46,480 REQUEST THAT LOOK LIKE FOR REAL 4223 02:41:46,480 --> 02:41:49,080 WORLD INTEGRATION. ALSO THINGS 4224 02:41:49,080 --> 02:41:52,680 LIKE HOW TO UNDERTAKE A GOOD 4225 02:41:52,680 --> 02:41:54,040 PROCESS DEMOCRATIC DELIBERATION. 4226 02:41:54,040 --> 02:41:56,520 WHAT ARE GOOD MODELS FOR 4227 02:41:56,520 --> 02:41:57,120 DEMOCRATIC DELIBERATION SO 4228 02:41:57,120 --> 02:41:58,120 THINGS THAT ARE THE TEACHING 4229 02:41:58,120 --> 02:42:02,480 ROLE IN SOME WAYS, A 4230 02:42:02,480 --> 02:42:03,880 BIDIRECTIONAL CONVERSATION IN 4231 02:42:03,880 --> 02:42:05,440 OTHER WAYS. THINGS THAT COULD 4232 02:42:05,440 --> 02:42:10,160 ALLOW US TO REALLY BE ABLE TO BE 4233 02:42:10,160 --> 02:42:12,920 ABLE TO PROVIDE MORE OF A 4234 02:42:12,920 --> 02:42:13,720 SERVICE AND PRO SEAL DO YOU 4235 02:42:13,720 --> 02:42:16,240 RECALLLY I HOPE THERE'S SOME 4236 02:42:16,240 --> 02:42:17,520 THINGS THAT PAST EXPERIENCES WE 4237 02:42:17,520 --> 02:42:19,080 START TO SHORE UP LIKE ONE OF 4238 02:42:19,080 --> 02:42:21,480 THEM IS I THINK ETHICS 4239 02:42:21,480 --> 02:42:22,840 CONSULTATIONS HAVE TAKEN 4240 02:42:22,840 --> 02:42:23,800 DIFFERENT FORMS OVER TIME NEWG 4241 02:42:23,800 --> 02:42:25,360 IS CONSTITUTED, LOVE FOR US TO 4242 02:42:25,360 --> 02:42:28,560 COME UP WITH WHAT IS MEANT BY 4243 02:42:28,560 --> 02:42:30,440 ETHICS CONSUL STATION, WHAT IS 4244 02:42:30,440 --> 02:42:32,320 THE GOAL, WHAT IS THE PRODUCT 4245 02:42:32,320 --> 02:42:33,640 EXPECTED. WHAT DOES THE 4246 02:42:33,640 --> 02:42:35,320 PROCEDURE LOOK LIKE AND 4247 02:42:35,320 --> 02:42:37,320 FOLLOWING THROUGH ON PRODUCTS IF 4248 02:42:37,320 --> 02:42:39,520 WE ARE GOING TO PROVIDE ADVICE 4249 02:42:39,520 --> 02:42:42,320 AND COUNCIL, I KNOW WE DON'T 4250 02:42:42,320 --> 02:42:43,600 TECHNICALLY, IS THERE A MEMO 4251 02:42:43,600 --> 02:42:46,120 WRITE UP, IS THERE GOING TO BE 4252 02:42:46,120 --> 02:42:47,800 WHAT WHAT IS T IT THAT 4253 02:42:47,800 --> 02:42:48,600 INVESTIGATORS HOPE FOR OR 4254 02:42:48,600 --> 02:42:50,480 EXPLAIN. I ALSO WOULD LIKE 4255 02:42:50,480 --> 02:42:51,840 PROCEDURALLY FOR US TO BE MORE 4256 02:42:51,840 --> 02:42:52,960 ENGAGED WITH OTHER GROUPS THAT 4257 02:42:52,960 --> 02:42:56,720 ARE DOING NEUROETHICS. SO IF FOR 4258 02:42:56,720 --> 02:42:58,920 EXAMPLE WE DO SKILLS BASED 4259 02:42:58,920 --> 02:43:00,520 WORKSHOP, WORKING WITH OTHERS 4260 02:43:00,520 --> 02:43:02,280 WHO ARE DOING THE SAME, WORKING 4261 02:43:02,280 --> 02:43:04,360 MORE EXPLICITLY WITH IEEE AS 4262 02:43:04,360 --> 02:43:06,440 THEY ARE DEVELOPING THEIR 4263 02:43:06,440 --> 02:43:08,000 GUIDELINES WORKING MORE 4264 02:43:08,000 --> 02:43:09,720 EXCLUSIVELY WITH THE 4265 02:43:09,720 --> 02:43:10,320 INTERNATIONAL NEUROETHICS 4266 02:43:10,320 --> 02:43:11,000 SOCIETY, WITH OTHER 4267 02:43:11,000 --> 02:43:12,440 ORGANIZATIONS THAT ARE 4268 02:43:12,440 --> 02:43:14,160 UNDERTAKING THESE SIMILAR IDEAS 4269 02:43:14,160 --> 02:43:17,920 TO REACH OUT AND BE PART OF 4270 02:43:17,920 --> 02:43:19,440 INNER TRADITIONAL COMMUNITIES 4271 02:43:19,440 --> 02:43:21,240 THAT IS OUT THERE. THOSE ARE 4272 02:43:21,240 --> 02:43:23,080 SOME OF THE THINGS WE HOPE WE'LL 4273 02:43:23,080 --> 02:43:27,840 DO AS NEWG AS WE MOVE FORWARDS. 4274 02:43:27,840 --> 02:43:31,480 >> THANK YOU. JOHN. 4275 02:43:31,480 --> 02:43:35,240 >> I SEE JIM AND KAREN HAD THEIR 4276 02:43:35,240 --> 02:43:37,560 HANDS UP, IF YOU ALLOW ME TO 4277 02:43:37,560 --> 02:43:38,640 HAVE THE LAST WORD THAT WOULD BE 4278 02:43:38,640 --> 02:43:40,920 FINE. 4279 02:43:40,920 --> 02:43:43,560 >> I'LL ALLOW YOU TO HAVE AT 4280 02:43:43,560 --> 02:43:45,320 LEAST THE NEXT TO LAST WORD BUT 4281 02:43:45,320 --> 02:43:46,200 MAY KEEP THE LAST WORD FOR 4282 02:43:46,200 --> 02:43:48,200 MYSELF. 4283 02:43:48,200 --> 02:43:50,520 >> THANKS, HANK. 4284 02:43:50,520 --> 02:43:52,160 THREE POINTS THAT I WANT TO 4285 02:43:52,160 --> 02:43:55,840 COMMENT ON COUPLE HAVE BEEN 4286 02:43:55,840 --> 02:43:59,960 MENTIONED BY OTHERS. ONE IS 4287 02:43:59,960 --> 02:44:01,720 SEVERAL THINGS DISCUSSED TODAY. 4288 02:44:01,720 --> 02:44:05,800 WE ARE PART OF NEUROETHICS 4289 02:44:05,800 --> 02:44:08,360 REPORT THAT CAME OUT ABOUT A 4290 02:44:08,360 --> 02:44:09,920 YEAR AND A HALF AGO NOW SO THERE 4291 02:44:09,920 --> 02:44:11,720 IS SOME BACKGROUND WITH ASPECT 4292 02:44:11,720 --> 02:44:15,000 OF THAT, THAT DRIVE ASPECTS OF 4293 02:44:15,000 --> 02:44:15,960 THIS. ONE IMPORTANT THING THAT 4294 02:44:15,960 --> 02:44:18,280 CAME OUT OF THAT REPORT WAS IDEA 4295 02:44:18,280 --> 02:44:21,280 OF CONSCIOUSNESS. AND I DO THINK 4296 02:44:21,280 --> 02:44:25,680 ONE CAN THINK ABOUT NEWG BEING 4297 02:44:25,680 --> 02:44:27,360 MORE INVOLVED IN DOING WHAT THE 4298 02:44:27,360 --> 02:44:28,480 BRAIN ANYWHERETIVE HAS DONE SO 4299 02:44:28,480 --> 02:44:29,720 WELL IN THE PAST. ONE REASON THE 4300 02:44:29,720 --> 02:44:33,120 SINGLE CELL INITIATIVE AND OTHER 4301 02:44:33,120 --> 02:44:36,400 COMPONENTS OF THE WORKING GROUP 4302 02:44:36,400 --> 02:44:37,200 EFFORTS HAVE WORKED IS BECAUSE 4303 02:44:37,200 --> 02:44:39,480 IT ENGAGED PEOPLE FROM DIFFERENT 4304 02:44:39,480 --> 02:44:41,160 DISCLINES AND CHEMISTS ENGINEERS 4305 02:44:41,160 --> 02:44:43,120 MOLECULAR BIOLOGISTS. AND I 4306 02:44:43,120 --> 02:44:44,800 THINK THE NEWG COULD POTENTIALLY 4307 02:44:44,800 --> 02:44:48,520 DO A WORKSHOP OR SPONSOR GROUP 4308 02:44:48,520 --> 02:44:52,720 OF SCIENTIST TALK ABOUT 4309 02:44:52,720 --> 02:44:54,120 CONSCIOUSNESS FROM BIOLOGICAL 4310 02:44:54,120 --> 02:44:56,680 PERSPECTIVE TO ETHICAL 4311 02:44:56,680 --> 02:44:57,960 PERSPECTIVE PHILOSOPHICAL 4312 02:44:57,960 --> 02:44:59,520 PERSPECTIVE AND TRY TO COME TO 4313 02:44:59,520 --> 02:45:02,160 SOME IDEA ABOUT HOW TO APPROACH 4314 02:45:02,160 --> 02:45:04,280 THIS IDEA FROM ETHICAL AND 4315 02:45:04,280 --> 02:45:06,000 POTENTIALLY SCIENTIFIC 4316 02:45:06,000 --> 02:45:07,880 PERSPECTIVE TO HELP MAYBE GIVE 4317 02:45:07,880 --> 02:45:08,880 GUIDANCE TO MULTI-COUNCIL 4318 02:45:08,880 --> 02:45:10,320 WORKING GROUP SO I THINK THERE 4319 02:45:10,320 --> 02:45:14,560 IS ROOM FOR DOING THAT. ONE 4320 02:45:14,560 --> 02:45:16,680 OTHER THING THAT'S PROBLEMATIC 4321 02:45:16,680 --> 02:45:19,600 IN THIS SORT OF GOES STEVE'S 4322 02:45:19,600 --> 02:45:21,400 COMMENTS IN OFFHAND WAY, IS ONE 4323 02:45:21,400 --> 02:45:25,040 OF THE ISSUES WITH HUMAN STUDIES 4324 02:45:25,040 --> 02:45:28,040 PARTICULARLY IN BRAIN IS POWER. 4325 02:45:28,040 --> 02:45:29,640 HOW MANY SUBJECTS PATIENTS USED 4326 02:45:29,640 --> 02:45:32,240 TO GENERATE DATA PEOPLE ARE 4327 02:45:32,240 --> 02:45:33,440 CLAIMING TO HAVE GENERATE SOD 4328 02:45:33,440 --> 02:45:35,200 THIS IS WHERE THE IDEA USING 4329 02:45:35,200 --> 02:45:38,040 DIFFERENT TAPES OF DATA SETS 4330 02:45:38,040 --> 02:45:39,920 MAYBE VERY IMPORTANT. MAYBE I 4331 02:45:39,920 --> 02:45:41,200 CAN DECREASE POWER WITH MULTIPLE 4332 02:45:41,200 --> 02:45:43,640 DATA SETS THAT ARE WORKING 4333 02:45:43,640 --> 02:45:46,040 TOGETHER TO INFORM POTENTIAL 4334 02:45:46,040 --> 02:45:50,520 TYPE OF OUTCOME. SO I DO THINK 4335 02:45:50,520 --> 02:45:51,640 THAT SOME DISCUSSION AND WORK 4336 02:45:51,640 --> 02:45:56,000 RELATED TO HOW TO THINK ABOUT 4337 02:45:56,000 --> 02:45:59,720 HOW TO GET HARD CORE DATA THAT 4338 02:45:59,720 --> 02:46:04,080 GUIDES ETHICAL DISCUSSIONS AND 4339 02:46:04,080 --> 02:46:06,480 MOVE ETHICAL CONSULTATION 4340 02:46:06,480 --> 02:46:07,640 FORWARD WOULD BE USEFUL SO 4341 02:46:07,640 --> 02:46:10,120 THERE'S INNER MIXING THAT WOULD 4342 02:46:10,120 --> 02:46:12,800 BE IMPORTANT. FINALLY NITA 4343 02:46:12,800 --> 02:46:14,040 MENTIONED THIS IDEA OF WORKING 4344 02:46:14,040 --> 02:46:16,720 WITH OTHER GROUPS, AND I WANTED 4345 02:46:16,720 --> 02:46:17,680 TO AGREE PARTICULARLY WITH 4346 02:46:17,680 --> 02:46:19,400 RESPECT TO THE INTERNATIONAL 4347 02:46:19,400 --> 02:46:21,080 COMMUNITY, HOW KAREN'S LED AN 4348 02:46:21,080 --> 02:46:23,160 EFFORT IN THIS, OR BEEN INVOLVED 4349 02:46:23,160 --> 02:46:25,600 IN EFFORT IN THIS FOR THE LAST 4350 02:46:25,600 --> 02:46:27,600 FEW YEARS. I DO THINK THAT IF 4351 02:46:27,600 --> 02:46:30,320 THE NEWG WERE MAYBE TO HAVE ONE 4352 02:46:30,320 --> 02:46:33,120 MEETING A YEAR, NOT OUR STANDARD 4353 02:46:33,120 --> 02:46:34,480 -- BUT ADDITIONAL MEETING A 4354 02:46:34,480 --> 02:46:36,760 YEAR, PERHAPS WHERE 4355 02:46:36,760 --> 02:46:38,200 INTERNATIONAL COMMUNITY AND 4356 02:46:38,200 --> 02:46:39,480 INTERNATIONAL BRAIN GROUPS GET 4357 02:46:39,480 --> 02:46:41,760 TOGETHER DISCUSS FOR AN 4358 02:46:41,760 --> 02:46:42,920 AFTERNOON OR DAY THINGS THEY ARE 4359 02:46:42,920 --> 02:46:44,240 WORKING ON TO SEE IF THERE MIGHT 4360 02:46:44,240 --> 02:46:47,120 BE POTENTIAL INTERACTIONS OR 4361 02:46:47,120 --> 02:46:48,080 COLLABORATION TO COME FROM THAT, 4362 02:46:48,080 --> 02:46:50,680 WE CAN CERTAINLY LEARN FROM EACH 4363 02:46:50,680 --> 02:46:53,720 OTHER AND I THINK CODIFY THAT 4364 02:46:53,720 --> 02:46:55,920 INTO POTENTIAL MEETING AT LEAST 4365 02:46:55,920 --> 02:46:57,400 ONCE A YEAR MIGHT BE USEFUL. SO 4366 02:46:57,400 --> 02:46:58,720 THOSE ARE THE THINGS I WANT TO 4367 02:46:58,720 --> 02:47:00,280 HIGHLIGHT. 4368 02:47:00,280 --> 02:47:06,120 >> THANKS, JIM. THE 4369 02:47:06,120 --> 02:47:07,840 INTERNATIONAL MEETING IS 4370 02:47:07,840 --> 02:47:10,920 INTRIGUING, NOT JUST NATIONAL OR 4371 02:47:10,920 --> 02:47:13,760 REGIONALLY ORGANIZED PRODUCTS 4372 02:47:13,760 --> 02:47:14,760 REVOLUTIONIZED OR GROUP THINGS 4373 02:47:14,760 --> 02:47:18,880 LIKE IEEE OR OECD WHICH ARE 4374 02:47:18,880 --> 02:47:19,880 PARTICULAR NATIONAL BRAIN 4375 02:47:19,880 --> 02:47:24,240 PROJECTS BUT IT MIGHT BE FUN TO 4376 02:47:24,240 --> 02:47:27,200 HOST -- VIRTUALLY HOST, A 4377 02:47:27,200 --> 02:47:28,640 MEETING OF LOTS OF DIFFERENT 4378 02:47:28,640 --> 02:47:29,960 PARTICIPANTS. SO REPRESENTATIVES 4379 02:47:29,960 --> 02:47:35,600 OF LOTS OF DIFFERENT GROUPS. 4380 02:47:35,600 --> 02:47:37,920 KAREN. 4381 02:47:37,920 --> 02:47:41,600 >> I REALLY LIKED ESPECIALLY 4382 02:47:41,600 --> 02:47:45,560 NITA'S AND JIMS COMMENTS, SEEMS 4383 02:47:45,560 --> 02:47:46,800 LIKE -- AND I LIKE THE SKILLS 4384 02:47:46,800 --> 02:47:49,240 BASED WORKSHOPS, I LIKE THE IDEA 4385 02:47:49,240 --> 02:47:50,480 OF BEING INTENTIONAL ABOUT 4386 02:47:50,480 --> 02:47:52,480 ETHICS CONSULTATIONS AND ALSO 4387 02:47:52,480 --> 02:47:53,720 HOW WE ENGAGE WITH OTHER GROUPS 4388 02:47:53,720 --> 02:47:58,520 AND WONDER IF IT MIGHT BE A GOOD 4389 02:47:58,520 --> 02:47:59,560 FILE TO DO A SELF-ASSESSMENT NOT 4390 02:47:59,560 --> 02:48:01,240 SURE WE HAVE TO SEE HOW WELL WE 4391 02:48:01,240 --> 02:48:03,800 DELIVERED ON WHAT WE SAID WE 4392 02:48:03,800 --> 02:48:06,520 WOULD DO AND ALSO IF WE HAVE 4393 02:48:06,520 --> 02:48:07,880 CHANGE GOALS AND METRICS WE CAN 4394 02:48:07,880 --> 02:48:09,840 USE, WE KEEP TALKING ABOUT HOW 4395 02:48:09,840 --> 02:48:11,160 EVERYONE ELSE NEEDS TO BE 4396 02:48:11,160 --> 02:48:12,080 EMPIRICAL AND MIGHT BE WORTH 4397 02:48:12,080 --> 02:48:13,400 DOING A ROUGH SKETCH OF HOW WE 4398 02:48:13,400 --> 02:48:18,640 HAVE BEEN DOING. MAYBE HAVE MORE 4399 02:48:18,640 --> 02:48:20,720 INFORMED APPROACH HOW TO BE MORE 4400 02:48:20,720 --> 02:48:22,880 IMPACTFUL LATER OR AREAS WE HAVE 4401 02:48:22,880 --> 02:48:24,320 IMPACTFUL AND IMMEDIATE TO KEEP 4402 02:48:24,320 --> 02:48:25,760 GOING. I DON'T KNOW P ANYONE IS 4403 02:48:25,760 --> 02:48:27,120 COLLECTING THAT INFORMATION OR 4404 02:48:27,120 --> 02:48:29,760 IF SOME OF THAT IS HAPPENING 4405 02:48:29,760 --> 02:48:32,400 OFFLINE. ALSO WANT TO REITERATE 4406 02:48:32,400 --> 02:48:34,400 WHAT JIM SAID ABOUT CONNECTING 4407 02:48:34,400 --> 02:48:35,600 AND NITA TOO WITH THE BROAD 4408 02:48:35,600 --> 02:48:36,920 COMMUNITY, A LOT OF THINGS THAT 4409 02:48:36,920 --> 02:48:39,520 WERE PROPOSED LIKE SKILLS BASED 4410 02:48:39,520 --> 02:48:40,520 WORKSHOPS AND NEUROETHICS 4411 02:48:40,520 --> 02:48:41,600 EDUCATION, THERE'S SEVERAL 4412 02:48:41,600 --> 02:48:45,000 GROUPS WHO BUILT THAT AND ARE 4413 02:48:45,000 --> 02:48:46,680 COLLABORATING TOGETHER LIKE EBRO 4414 02:48:46,680 --> 02:48:50,280 AND HPB AND INS RECENTLY SOME 4415 02:48:50,280 --> 02:48:54,480 CONNECTIONS TO THAT WITH THE 4416 02:48:54,480 --> 02:48:56,920 BOARD THERE. AND ALSO AS FAR AS 4417 02:48:56,920 --> 02:49:00,320 ENGAGEMENT PIECES HBP HAS VERY 4418 02:49:00,320 --> 02:49:02,520 ELABORATE PROCESS THEY WOULD I'M 4419 02:49:02,520 --> 02:49:04,480 SURE BE WILLING TO SHARE. THEN 4420 02:49:04,480 --> 02:49:06,880 THERE ARE TWO BROADER LANDSCAPE 4421 02:49:06,880 --> 02:49:08,640 QUESTIONS THAT I HAVE WONDERED, 4422 02:49:08,640 --> 02:49:11,960 WHETHER WE WANT TO BE PART OF 4423 02:49:11,960 --> 02:49:14,840 AND ONE IS LECD, MENTIONED BY 4424 02:49:14,840 --> 02:49:19,520 HANK, IT IS IMPLEMENTATION OF 4425 02:49:19,520 --> 02:49:21,840 NEURAL RESPONSIBLE 4426 02:49:21,840 --> 02:49:23,920 RECOMMENDATION ON RESPONSIBLE 4427 02:49:23,920 --> 02:49:25,160 INNOVATION AND NEURAL TECHNOLOGY 4428 02:49:25,160 --> 02:49:28,640 WHICH IS A LEGAL INSTRUMENT 4429 02:49:28,640 --> 02:49:30,120 DECEMBER 2019 AND NOW ALL MEMBER 4430 02:49:30,120 --> 02:49:32,680 COUNTRY ALSO HAVE TO REPORT BACK 4431 02:49:32,680 --> 02:49:34,240 BY 2024 HOW THAW IMPLEMENTED 4432 02:49:34,240 --> 02:49:35,920 THAT. IT MIGHT BE INTERESTING 4433 02:49:35,920 --> 02:49:37,000 FOR US TO BE PART OF THAT 4434 02:49:37,000 --> 02:49:38,560 CONVERSATION OR THINKING ABOUT 4435 02:49:38,560 --> 02:49:40,360 AREAS OF ALIGNMENT FOR HOW WE 4436 02:49:40,360 --> 02:49:42,200 CAN IMPLEMENT WITHIN BRAIN, AND 4437 02:49:42,200 --> 02:49:44,440 THEN THE OTHER IS EVEN WITH THE 4438 02:49:44,440 --> 02:49:49,720 DATA SHARING PIECE THAT WAS 4439 02:49:49,720 --> 02:49:51,320 MENTIONED E BRAINS THIS MORNING 4440 02:49:51,320 --> 02:49:52,640 PARTICIPATED IN EXPERT 4441 02:49:52,640 --> 02:49:56,360 CONSULTATION ON ITS VISION HOW 4442 02:49:56,360 --> 02:49:57,480 THEY PLAN TO DEVELOP STRATEGY 4443 02:49:57,480 --> 02:49:58,920 FOR THAT VISION LATER AND MAYBE 4444 02:49:58,920 --> 02:50:02,320 THAT'S SOMETHING WE SHOULD ALSO 4445 02:50:02,320 --> 02:50:05,440 BE CONSIDERING. BUT I THINK IT 4446 02:50:05,440 --> 02:50:11,120 MATTERS FROM PIR SPECKTIVE OF 4447 02:50:11,120 --> 02:50:12,360 BRAIN BECAUSE WE AREN'T DECISION 4448 02:50:12,360 --> 02:50:13,920 MAKERS IN OUR GROUP HERE, WHAT 4449 02:50:13,920 --> 02:50:15,040 WE SHOULD BE DOING AND IF THAT 4450 02:50:15,040 --> 02:50:17,160 WOULD BE -- WOULD EVEN ENGAGING 4451 02:50:17,160 --> 02:50:18,320 IN THE BROADER COMMUNITY LIKE 4452 02:50:18,320 --> 02:50:19,920 THAT BE PART OF A SUCCESS METRIC 4453 02:50:19,920 --> 02:50:21,800 FOR US OR IS THAT GOING TO 4454 02:50:21,800 --> 02:50:22,840 DIFFUSE OUR EFFORTS TOO MUCH AND 4455 02:50:22,840 --> 02:50:24,280 THERE'S A LOT OF SPECIFIC THINGS 4456 02:50:24,280 --> 02:50:29,560 TO DO TOO. SO IT WOULD BE GOOD 4457 02:50:29,560 --> 02:50:31,320 IF -- DOES HAVE THE SECOND TO 4458 02:50:31,320 --> 02:50:34,000 LAST WORD TO ELABORATE. 4459 02:50:34,000 --> 02:50:36,120 >> GREAT SEGUE LAST PART IN 4460 02:50:36,120 --> 02:50:38,200 PARTICULAR, OVER TO JOHN. 4461 02:50:38,200 --> 02:50:40,720 >> APPRECIATE ALL THESE COMMENTS 4462 02:50:40,720 --> 02:50:43,560 AND THOUGHTS. MANY -- ACTUALLY 4463 02:50:43,560 --> 02:50:47,520 ALL RESONATE DEEPLY WITH ME. IN 4464 02:50:47,520 --> 02:50:49,200 THINKING BIG PICTURE ISSUES, 4465 02:50:49,200 --> 02:50:50,840 THEY HAVE ALL BEEN MENTIONED TOP 4466 02:50:50,840 --> 02:50:52,160 OF MY LIST WAS THE ISSUE OF 4467 02:50:52,160 --> 02:50:52,840 AGENCY, WE HAVE BEEN TALKING 4468 02:50:52,840 --> 02:50:56,120 ABOUT THAT FOR A WHILE. UNLIKE 4469 02:50:56,120 --> 02:50:58,760 OTHER INTERVENTION IN HUMANS 4470 02:50:58,760 --> 02:51:01,400 ONCE YOU START MODULATING OR 4471 02:51:01,400 --> 02:51:02,720 PLAYING WITH PERSON -- A 4472 02:51:02,720 --> 02:51:05,480 PERSON'S BRAIN YOU ARE ACTUALLY 4473 02:51:05,480 --> 02:51:06,840 RUNNING REAL RISK NOT JUST 4474 02:51:06,840 --> 02:51:10,320 IMAGINARY RISK OF INTERFERING OR 4475 02:51:10,320 --> 02:51:11,800 CHANGING THEIR AGENCY AND THEIR 4476 02:51:11,800 --> 02:51:13,440 AUTONOMY SO THAT IS A BIG ONE. 4477 02:51:13,440 --> 02:51:15,760 WE TALKED ABOUT DATA USE AND 4478 02:51:15,760 --> 02:51:16,960 DATA MISUSE WHICH ALSO TOUCHES 4479 02:51:16,960 --> 02:51:19,040 ON PRIVACY ISSUES THAT -- I HOPE 4480 02:51:19,040 --> 02:51:21,880 WE WILL GET TO WORKSHOP OF OUR 4481 02:51:21,880 --> 02:51:23,320 OWN ON THAT AND THESE ARE 4482 02:51:23,320 --> 02:51:27,920 WORKSHOPS BUBBLING UP ELSEWHERE. 4483 02:51:27,920 --> 02:51:28,920 A BIG ISSUE WE HAVE BEEN 4484 02:51:28,920 --> 02:51:29,920 GRAPPLING WITH TOGETHER WITH 4485 02:51:29,920 --> 02:51:31,920 REST OF THE WORLD ARE ISSUES OF 4486 02:51:31,920 --> 02:51:33,320 EQUITY AND ACCESS AND ENGAGEMENT 4487 02:51:33,320 --> 02:51:37,520 AND DOING BETTER JOB ENGAGEMENT 4488 02:51:37,520 --> 02:51:38,920 UNDERSTANDING NOT JUST WITH WHOM 4489 02:51:38,920 --> 02:51:40,520 TO ENGAGE BUT HOW TO ENGAGE WILL 4490 02:51:40,520 --> 02:51:43,160 BE VERY, VERY IMPORTANT. SO I 4491 02:51:43,160 --> 02:51:44,600 THINK THE NEWG CAN HELP PLAY -- 4492 02:51:44,600 --> 02:51:45,800 CONTINUE TO PLAY A ROLE IN 4493 02:51:45,800 --> 02:51:47,960 ADDRESSING ISSUES LIKE THAT. ONE 4494 02:51:47,960 --> 02:51:49,920 THING I JUST WANT TO BRING THIS 4495 02:51:49,920 --> 02:51:51,640 BACK TO AND I WILL COME BACK TO 4496 02:51:51,640 --> 02:51:54,720 THE LAST YEAR AS AN EXAMPLE OF 4497 02:51:54,720 --> 02:51:57,680 THIS, IS THAT BRAIN IS SMALL. 4498 02:51:57,680 --> 02:51:59,520 BRAIN IS TINY IN COMPARISON TO 4499 02:51:59,520 --> 02:52:01,640 THE REST OF NIH AND EVEN SMALL 4500 02:52:01,640 --> 02:52:04,280 IN COMPARISON TO REST OF 4501 02:52:04,280 --> 02:52:06,800 NEUROSCIENCE COMMUNITY FUNDED 4502 02:52:06,800 --> 02:52:10,400 RESEARCH BY NIH. BUT WE ARE 4503 02:52:10,400 --> 02:52:12,400 DOING THINGS IF NOT AT CUT EDGE 4504 02:52:12,400 --> 02:52:14,520 OFTENTIMES THE LEADING EDGE, AS 4505 02:52:14,520 --> 02:52:17,920 WE GET INTO MANY ISSUES HERE 4506 02:52:17,920 --> 02:52:20,200 TODAY WE DO NEED TO BE CAREFUL 4507 02:52:20,200 --> 02:52:25,160 AND BE AHEAD OF THE GAME ON 4508 02:52:25,160 --> 02:52:27,760 THIS, IN TERMS OF NEWG REMIT OF 4509 02:52:27,760 --> 02:52:29,520 NEWG IS TO ADVISE BRAIN IN THESE 4510 02:52:29,520 --> 02:52:31,480 AREAS. AND I WILL BE FIRM ON 4511 02:52:31,480 --> 02:52:33,600 THAT. THAT'S NOT TO SAY THAT 4512 02:52:33,600 --> 02:52:35,000 BRAIN AND NEWG AND THEREFORE 4513 02:52:35,000 --> 02:52:38,680 BRAIN CANNOT HAVE MUCH LARGER 4514 02:52:38,680 --> 02:52:39,760 OUTSIDE SIZED IMPACT ON REST OF 4515 02:52:39,760 --> 02:52:41,880 THE FIELD. WE ARE SEEING THAT 4516 02:52:41,880 --> 02:52:43,200 ALREADY. WE HAVE PLENTY OF 4517 02:52:43,200 --> 02:52:44,440 THINGS TO WORRY ABOUT THAT ARE 4518 02:52:44,440 --> 02:52:47,080 AT THE LEADING EDGE THAT WE 4519 02:52:47,080 --> 02:52:49,520 SHOULD STAY FOCUSED ON THAT WILL 4520 02:52:49,520 --> 02:52:51,400 IN FACT HELP GENERAL FIELD OF 4521 02:52:51,400 --> 02:52:52,520 NEUROSCIENCE AND HUMAN 4522 02:52:52,520 --> 02:52:54,120 NEUROSCIENCE RESEARCH AS WELL AS 4523 02:52:54,120 --> 02:52:55,280 BIOMEDICAL RESEARCH IN GENERAL I 4524 02:52:55,280 --> 02:52:57,720 WOULD THINK. AND I JUST WANT TO 4525 02:52:57,720 --> 02:53:00,440 BRING UP TWO EXAMPLES THAT I 4526 02:53:00,440 --> 02:53:01,640 WORK QUITE WELL THAT BENEFITED 4527 02:53:01,640 --> 02:53:03,400 ME AS DIRECTOR, THE PROGRAM IN 4528 02:53:03,400 --> 02:53:05,080 GENERAL. THAT IS THE EFFORTS 4529 02:53:05,080 --> 02:53:07,120 THAT WE UNDERTOOK OVER THE LAST 4530 02:53:07,120 --> 02:53:09,240 YEAR, YEAR AND A HALF, AT THE 4531 02:53:09,240 --> 02:53:13,520 START OF THE BLACK LIVES MATTER 4532 02:53:13,520 --> 02:53:14,680 MOVEMENT, THE FINAL RECOGNITION 4533 02:53:14,680 --> 02:53:17,080 THAT WE DO HAVE A PROBLEM WITH 4534 02:53:17,080 --> 02:53:19,240 RACISM IN PARTICULAR ANTI-BLACK 4535 02:53:19,240 --> 02:53:23,560 RACISM AND HOW NOBODY CAN REALLY 4536 02:53:23,560 --> 02:53:24,400 FILAREE LEAVED OF ADDRESSING IT 4537 02:53:24,400 --> 02:53:28,000 IN ALL THE WORK THAT WE DO. THIS 4538 02:53:28,000 --> 02:53:29,320 COMES DOWN TO THE PEOPLE DOING 4539 02:53:29,320 --> 02:53:31,760 THE RESEARCH, DECIDING WHAT THE 4540 02:53:31,760 --> 02:53:34,120 STUDY -- WHAT TO STUDY AND 4541 02:53:34,120 --> 02:53:36,920 GIVING ACCESS DEMOCRATIZING 4542 02:53:36,920 --> 02:53:39,760 ACCESS ACROSS THE BOARD. SO I 4543 02:53:39,760 --> 02:53:41,440 THINK WE HAVE TWO VERY IMPORTANT 4544 02:53:41,440 --> 02:53:43,000 ADVANCES THAT CAME OUT OF BRAIN 4545 02:53:43,000 --> 02:53:46,000 THIS PAST YEAR. ONE OF THOSE WAS 4546 02:53:46,000 --> 02:53:47,920 DEMAND FOR HAVING DIVERSE 4547 02:53:47,920 --> 02:53:49,240 PERSPECTIVES AND OUR RESEARCH 4548 02:53:49,240 --> 02:53:50,520 TEAMS THAT WILL IMPACT THE 4549 02:53:50,520 --> 02:53:53,640 RESEARCH YOU DO OVER THE LONG 4550 02:53:53,640 --> 02:53:55,720 HAUL. BRAIN IS TINY BUT WE ARE 4551 02:53:55,720 --> 02:53:57,720 SEEING UPTAKE ON PLAN FOR 4552 02:53:57,720 --> 02:53:59,040 ENHANCING DIVERSE PERSPECTIVES 4553 02:53:59,040 --> 02:54:00,120 REQUIREMENT ACROSS THE NIH AND 4554 02:54:00,120 --> 02:54:02,320 THAT'S DOVE TAILING WITH THE 4555 02:54:02,320 --> 02:54:04,160 FINAL RECOGNITION AND PEOPLE 4556 02:54:04,160 --> 02:54:05,640 WALKING THE WALK OF DEALING WITH 4557 02:54:05,640 --> 02:54:06,720 THIS IN A PROACTIVE AND 4558 02:54:06,720 --> 02:54:09,440 CONSTRUCTIVE WAY. THIS IS AN 4559 02:54:09,440 --> 02:54:11,440 AREA THAT FRANKLY WE RECEIVED A 4560 02:54:11,440 --> 02:54:12,960 LOT OF GREAT FEEDBACK AND 4561 02:54:12,960 --> 02:54:18,320 SUPPORT FROM NEWG AND SWG. THE 4562 02:54:18,320 --> 02:54:19,920 OTHER IS SETTING OF LARGE HUMAN 4563 02:54:19,920 --> 02:54:24,240 CELL ATLAS PROJECT WHICH WILL BE 4564 02:54:24,240 --> 02:54:28,400 LAUNCHING -- 4565 02:54:28,400 --> 02:54:29,000 WHICH WILL BE LAUNCHING IN THE 4566 02:54:29,000 --> 02:54:31,640 NEXT YEAR OR SO, AND WE APPROACH 4567 02:54:31,640 --> 02:54:33,200 THE VERY CRITICAL ISSUE OF WHO 4568 02:54:33,200 --> 02:54:36,520 ARE WE GOING TO STUDY AND THE 4569 02:54:36,520 --> 02:54:37,720 IMPORTANCE OF DIVERSITY IN OUR 4570 02:54:37,720 --> 02:54:39,040 HUMAN SUBJECT POPULATION THE 4571 02:54:39,040 --> 02:54:40,920 MAKE THESE TOOLS AND RESOURCES 4572 02:54:40,920 --> 02:54:42,920 TRULY USEFUL, THIS CAME OUT 4573 02:54:42,920 --> 02:54:44,880 DIRECTLY FROM CONVERSATIONS AT 4574 02:54:44,880 --> 02:54:46,920 NEWG AND IN PARTICULAR A PAPER 4575 02:54:46,920 --> 02:54:48,920 THAT STEVE HYMAN SENT THE NIGHT 4576 02:54:48,920 --> 02:54:50,520 BEFORE THE MEETING WHILE HAVING 4577 02:54:50,520 --> 02:54:52,120 THIS VERY INTENSE EMAIL EXCHANGE 4578 02:54:52,120 --> 02:54:54,320 AND I THINK THIS REALLY WAS A 4579 02:54:54,320 --> 02:54:55,840 WATER SHED MOMENT FOR MYSELF AND 4580 02:54:55,840 --> 02:54:57,160 I HOPE FOR THE FIELD AND 4581 02:54:57,160 --> 02:55:00,280 SOMETHING THAT'S BEING ADOPTED 4582 02:55:00,280 --> 02:55:02,120 ACROSS THE DOMAIN, INCLUDING BY 4583 02:55:02,120 --> 02:55:04,240 OTHER FUNDERS WHO ARE INTERESTED 4584 02:55:04,240 --> 02:55:05,400 IN DEVELOPING COMPREHENSIVE 4585 02:55:05,400 --> 02:55:07,880 HUMAN CELL ATLASES. SO I HOPE 4586 02:55:07,880 --> 02:55:09,080 THESE KINDS OF APPROACHES 4587 02:55:09,080 --> 02:55:10,960 CONTINUE TO HELP INFORM HOW TO 4588 02:55:10,960 --> 02:55:13,280 PROCEED IN THESE TRICKY AREAS 4589 02:55:13,280 --> 02:55:14,920 WHERE WE MAY NOT ACTUALLY KNOW 4590 02:55:14,920 --> 02:55:17,520 WHERE ALL THE PROBLEMS ARE. AND 4591 02:55:17,520 --> 02:55:20,920 I THINK THEY WILL HELP US NOT 4592 02:55:20,920 --> 02:55:23,160 ONLY SOLVE OUR OWN ISSUES AND 4593 02:55:23,160 --> 02:55:24,520 PREVENTING US FROM GETTING IN 4594 02:55:24,520 --> 02:55:26,440 TROUBLE BUT SERVE AS EXAMPLE FOR 4595 02:55:26,440 --> 02:55:28,680 THE REST OF THE FIELD SO BRAIN 4596 02:55:28,680 --> 02:55:30,560 CAN HAVE OUTSIZE IMPACT IF WE 4597 02:55:30,560 --> 02:55:33,640 FOCUS ON THINGS IN FRONT OF US 4598 02:55:33,640 --> 02:55:36,840 AND AS I THINK WAS IT KAREN 4599 02:55:36,840 --> 02:55:39,680 ANITA SAID IF WE FOCUS ON 4600 02:55:39,680 --> 02:55:42,640 DEVELOPING SKILLS AND SOLUTIONS 4601 02:55:42,640 --> 02:55:44,000 AND THINGS PEOPLE CAN ACT ON WE 4602 02:55:44,000 --> 02:55:45,840 CAN HAVE OUTSIZE IMPACT ON THE 4603 02:55:45,840 --> 02:55:48,320 FIELD IN GENERAL GENERAL. SO THOSE ARE 4604 02:55:48,320 --> 02:55:50,600 MY TWO CENTS AND COMMENTS AND I 4605 02:55:50,600 --> 02:55:51,920 WILL PASS IT BACK TO YOU. 4606 02:55:51,920 --> 02:55:55,120 >> I DON'T HAVE WAY IN THE MUCH 4607 02:55:55,120 --> 02:55:56,560 OF COMMENTS OTHER THAN TO SAY I 4608 02:55:56,560 --> 02:55:58,320 THINK THIS IS A GOOD THING IT IS 4609 02:55:58,320 --> 02:55:59,960 BEING RECORDED BUT HERE WE ARE 4610 02:55:59,960 --> 02:56:01,320 INTO THE FOURTH HOUR OF ZOOM 4611 02:56:01,320 --> 02:56:02,880 MEETING NOT SURE HOW MANY GREAT 4612 02:56:02,880 --> 02:56:05,720 IDEAS I JUST HEARD HAVE STUCK IN 4613 02:56:05,720 --> 02:56:12,680 MY BRAIN BUT HAPPILY RECORD AND 4614 02:56:12,680 --> 02:56:13,960 TRAN SCIENCED AN DISCUSSED AS 4615 02:56:13,960 --> 02:56:19,400 NEWG TRIES TO FIGURE HOW TO 4616 02:56:19,400 --> 02:56:22,920 MAXIMIZE USEFUL IMPACT FOR BRAIN 4617 02:56:22,920 --> 02:56:24,640 INITIATIVE NEUROSCIENCE AND TO 4618 02:56:24,640 --> 02:56:27,480 BE REALLY GRANDIOSE FOR HUMANITY 4619 02:56:27,480 --> 02:56:30,120 AS A WHOLE. SO THANKS TO 4620 02:56:30,120 --> 02:56:32,760 EVERYBODY WHO SPOKE UP ABOUT 4621 02:56:32,760 --> 02:56:33,800 THEIR THOUGHTS. ABOUT WHAT NEWG 4622 02:56:33,800 --> 02:56:35,720 SHOULD BE DOING. WE MOVE INTO 4623 02:56:35,720 --> 02:56:38,200 THE LAST SEGMENT OF TODAY'S 4624 02:56:38,200 --> 02:56:39,520 MEETING. WHICH IS THE ROUND 4625 02:56:39,520 --> 02:56:42,520 TABLE WHERE I INVITE PEOPLE ON 4626 02:56:42,520 --> 02:56:45,160 THE NEWG TO TALK ABOUT LET US 4627 02:56:45,160 --> 02:56:46,840 KNOW ANYTHING THAT YOU KNOW OF 4628 02:56:46,840 --> 02:56:49,720 THAT'S GOING ON THAT MIGHT BE A 4629 02:56:49,720 --> 02:56:51,160 GENERAL INTEREST. I ACTUALLY 4630 02:56:51,160 --> 02:56:52,920 WILL START WITH A QUESTION. THIS 4631 02:56:52,920 --> 02:56:54,800 IS SOMETHING I KNOW ABOUT BUT I 4632 02:56:54,800 --> 02:56:57,000 WONDER IF THERE IS ANY SUCH 4633 02:56:57,000 --> 02:56:58,560 THING, AFTER I REALIZE WE ARE 4634 02:56:58,560 --> 02:57:00,720 COMING UP ON THE 20TH 4635 02:57:00,720 --> 02:57:02,320 ANNIVERSARY OF THE DANA MEETING 4636 02:57:02,320 --> 02:57:06,360 MAY OF 2002 WHICH I DO THINK WAS 4637 02:57:06,360 --> 02:57:09,200 THE BEGINNING OF WHAT I CONSIDER 4638 02:57:09,200 --> 02:57:10,680 MODERN NEUROETHICS, DOES ANYBODY 4639 02:57:10,680 --> 02:57:12,960 KNOW OF ANYTHING GOING ON TO TRY 4640 02:57:12,960 --> 02:57:15,520 TO COMMEMORATE IT AND REMEMBER 4641 02:57:15,520 --> 02:57:20,720 IT NEE MOREIALIZE IT IN ANYWAY? 4642 02:57:20,720 --> 02:57:23,680 NOT SEE -- MEMORIALIZE IT IN ANY 4643 02:57:23,680 --> 02:57:23,840 WAY? 4644 02:57:23,840 --> 02:57:26,800 >> NITA HAS HER HAND UP. 4645 02:57:26,800 --> 02:57:30,320 >> HI, NITA. 4646 02:57:30,320 --> 02:57:31,880 >> SINCE NOBODY KNOWS ANYTHING 4647 02:57:31,880 --> 02:57:34,000 ABOUT THAT, PROBABLY TOO LATE TO 4648 02:57:34,000 --> 02:57:35,960 ORGANIZE ANYTHING FOR THAT, 4649 02:57:35,960 --> 02:57:39,320 MAYBE WE WILL LOOK FOR THE 25TH 4650 02:57:39,320 --> 02:57:40,920 ANNIVERSARY. ROUND TABLE 4651 02:57:40,920 --> 02:57:42,280 CONTRIBUTIONS. RAISE YOUR HANDS, 4652 02:57:42,280 --> 02:57:44,520 NITA. 4653 02:57:44,520 --> 02:57:46,920 >> I THINK I HAVE UPDATED FOLKS 4654 02:57:46,920 --> 02:57:49,520 ON THIS IN THE PAST BUT I WANTED 4655 02:57:49,520 --> 02:57:51,400 TO UPDATE PARTICULARLY SINCE JIM 4656 02:57:51,400 --> 02:57:54,160 MENTIONED CONSCIOUSNESS. I'M 4657 02:57:54,160 --> 02:57:57,120 SERVING AS THE REPORTER WHICH IS 4658 02:57:57,120 --> 02:58:01,800 LIKE THE OUTSIDE EXPERT. FOR THE 4659 02:58:01,800 --> 02:58:05,320 UNIFORM LAW COMMISSIONS DRAFTING 4660 02:58:05,320 --> 02:58:06,840 EFFORT ON RECONSIDERING THE 4661 02:58:06,840 --> 02:58:10,560 UNIFORM DECLARATION OF DEATH ACT 4662 02:58:10,560 --> 02:58:12,440 WHICH IN PARTICULAR FOCUSES ON 4663 02:58:12,440 --> 02:58:14,080 THE NEUROLOGICAL CRITERIA FOR 4664 02:58:14,080 --> 02:58:19,000 DEATH. SEVERAL ARE SERVING ISING 4665 02:58:19,000 --> 02:58:22,360 AS OBSERVERS ON THAT PROCESS, 4666 02:58:22,360 --> 02:58:24,560 OTHERS HAVE DIRECTED PEOPLE MY 4667 02:58:24,560 --> 02:58:25,520 WAY WHO SHOULD BE PARTICIPATING 4668 02:58:25,520 --> 02:58:27,520 IN THE PROCESS LIKE FOR EXAMPLE 4669 02:58:27,520 --> 02:58:30,360 TRANSPLANT COMMUNITY OR OTHER 4670 02:58:30,360 --> 02:58:31,720 FOLKS WHO SHOULD BE AT THE TABLE 4671 02:58:31,720 --> 02:58:33,480 FOR THOSE CONSIDERINGS. THOSE 4672 02:58:33,480 --> 02:58:34,960 OF YOU WHO DON'T KNOW THE 4673 02:58:34,960 --> 02:58:38,080 UNIFORM LAW COMMISSION, IS A 4674 02:58:38,080 --> 02:58:39,960 COMMISSION WHERE EVERY STATE HAS 4675 02:58:39,960 --> 02:58:43,800 REPRESENTATIVES WHO ARE 4676 02:58:43,800 --> 02:58:45,520 COMMISSIONERS WHO ADOPT 4677 02:58:45,520 --> 02:58:48,120 DIFFERENT STATUTES THAT SERVE AS 4678 02:58:48,120 --> 02:58:49,920 MODEL LEGISLATION FOR STATES FOR 4679 02:58:49,920 --> 02:58:51,920 UNIFORMITY OF LAW WOULD BE 4680 02:58:51,920 --> 02:58:54,440 USEFUL. AND OBVIOUSLY DEFINITION 4681 02:58:54,440 --> 02:58:55,920 OF DEATH THAT IS A USEFUL PLACE 4682 02:58:55,920 --> 02:58:58,000 TO HAVE UNIFORMITY OF LAW AND 4683 02:58:58,000 --> 02:59:00,640 HOW THE COUNTRY DEFINES BOTH 4684 02:59:00,640 --> 02:59:02,920 WHAT HOW DEATH IS DEFINED BUT 4685 02:59:02,920 --> 02:59:03,960 ALSO THE CRITERIA FOR 4686 02:59:03,960 --> 02:59:07,520 ESTABLISHING DEATH. WE HAD A 4687 02:59:07,520 --> 02:59:09,520 YEAR LONG STUDY COMMITTEE WHICH 4688 02:59:09,520 --> 02:59:10,960 STUDIED THE ISSUE IT WENT 4689 02:59:10,960 --> 02:59:12,920 FORWARD INTO WHAT IS NOW A 4690 02:59:12,920 --> 02:59:15,240 DRAFTING COMMITTEE SO WE ARE 4691 02:59:15,240 --> 02:59:17,920 WORKING ON REDRAFTING OR 4692 02:59:17,920 --> 02:59:19,200 UPDATING THE DRAFTING WITH 4693 02:59:19,200 --> 02:59:20,840 RESPECT TO EMERGING NEUROSCIENCE 4694 02:59:20,840 --> 02:59:24,480 AND OTHER ISSUES THE EUDA, WE 4695 02:59:24,480 --> 02:59:25,800 ARE ABOUT TO START THE PROCESS 4696 02:59:25,800 --> 02:59:29,040 OF REVIEWING POSSIBLE DRAFTS SO 4697 02:59:29,040 --> 02:59:31,520 I WELCOME ANYONE TO CONTRIBUTE 4698 02:59:31,520 --> 02:59:33,160 TO SEND ME NAMES TO PEOPLE WHO 4699 02:59:33,160 --> 02:59:35,560 YOU THINK OUGHT TO BE AT THE 4700 02:59:35,560 --> 02:59:37,360 TABLE IF THEY ARE NOT ALREADY 4701 02:59:37,360 --> 02:59:38,120 BECAUSE THERE ARE POSSIBILITIES 4702 02:59:38,120 --> 02:59:39,760 FOR PEOPLE TO SERVE AS OUTSIDE 4703 02:59:39,760 --> 02:59:41,320 OBSERVERS WHO ARE EXPERTS THAT 4704 02:59:41,320 --> 02:59:43,520 COME TO THE TABLE FOR 4705 02:59:43,520 --> 02:59:44,520 CONVERSATION BUT OBVIOUSLY AN 4706 02:59:44,520 --> 02:59:46,480 IMPORTANT ISSUE FOR NEUROETHICS 4707 02:59:46,480 --> 02:59:47,680 AND QUESTIONS OF CONSCIOUSNESS 4708 02:59:47,680 --> 02:59:49,720 AND HOW WE MEASURE CONSCIOUSNESS 4709 02:59:49,720 --> 02:59:51,320 TURN OUT TO BE QUITE IMPORTANT 4710 02:59:51,320 --> 02:59:52,600 FOR HOW WE ARE THINKING ABOUT 4711 02:59:52,600 --> 02:59:54,320 DRAFTING AS WELL. 4712 02:59:54,320 --> 03:00:01,640 >> THANK YOU. SAMEER. 4713 03:00:01,640 --> 03:00:03,440 >> THANKS. TWO QUICK THINGS. ONE 4714 03:00:03,440 --> 03:00:07,920 IS WE TALKED ABOUT ACTUALLY 4715 03:00:07,920 --> 03:00:11,880 GROUPS IN PAPER NEURON EARLIER 4716 03:00:11,880 --> 03:00:16,320 FOOD, THERE WAS A ARTICLE 4717 03:00:16,320 --> 03:00:17,840 SCIENCE PIECE ON THAT WHO MANY 4718 03:00:17,840 --> 03:00:20,320 MAY HAVE ALREADY SEEN. ON SOCIAL 4719 03:00:20,320 --> 03:00:21,760 MEDIA AND VARIOUS THINGS BUT I 4720 03:00:21,760 --> 03:00:23,520 CAN PUT THEM IN CHAT IF PEOPLE 4721 03:00:23,520 --> 03:00:26,400 LIKE TO READ IT BUT THERE IS AN 4722 03:00:26,400 --> 03:00:27,360 WELL WRITTEN PIECE THAT BRINGS 4723 03:00:27,360 --> 03:00:30,320 UP INTERESTING POINTS. AS THEY 4724 03:00:30,320 --> 03:00:32,440 RELATE TO TRUST, TRUST ABOUT 4725 03:00:32,440 --> 03:00:34,840 SURGICAL PROCEDURE SHOUT 4726 03:00:34,840 --> 03:00:35,800 AUTOMATICALLY CARRY OVER TO 4727 03:00:35,800 --> 03:00:38,120 TRUST ABOUT RESEARCH. NOT 4728 03:00:38,120 --> 03:00:40,720 INTENTIONALLY, THERE'S 4729 03:00:40,720 --> 03:00:42,080 INTENTIONAL POINTS ABOUT MICE 4730 03:00:42,080 --> 03:00:43,720 BUT UNINTENTIONAL THINGS A BASED 4731 03:00:43,720 --> 03:00:45,520 ON WHAT PATIENTS SAID, THAT ARE 4732 03:00:45,520 --> 03:00:47,520 THOUGHT PROVOKING. I CAN PUT 4733 03:00:47,520 --> 03:00:49,040 THAT IN THERE IN CASE PEOPLE 4734 03:00:49,040 --> 03:00:57,160 HAVEN'T SEEN IT. ASSN MEETING, 4735 03:00:57,160 --> 03:00:57,960 NEUROSURGERY DEALS WITH THINGS 4736 03:00:57,960 --> 03:01:00,920 THEY ARE TALKING ABOUT IN TERMS 4737 03:01:00,920 --> 03:01:06,440 OF RESEARCH PIGGY BACKED TO 4738 03:01:06,440 --> 03:01:07,920 NEUROSURGERY OPPORTUNITIES, 4739 03:01:07,920 --> 03:01:10,400 MEETING IN JUNE, THIS WHOLE 4740 03:01:10,400 --> 03:01:13,480 SECTION AT LEAST -- ON 4741 03:01:13,480 --> 03:01:14,800 NEUROETHICS SO PEOPLE WHO ARE 4742 03:01:14,800 --> 03:01:15,920 INTERESTED IN THAT CAN CERTAINLY 4743 03:01:15,920 --> 03:01:17,520 (INAUDIBLE) -- 4744 03:01:17,520 --> 03:01:21,880 >> IT'S BECOME A FAIRLY COMMON 4745 03:01:21,880 --> 03:01:22,800 FEATURE OTTOMITEING BUT THE PICK 4746 03:01:22,800 --> 03:01:24,440 UP IS INCREASING STEADILY FOR 4747 03:01:24,440 --> 03:01:26,920 ALL THE REASONS THAT YOU 4748 03:01:26,920 --> 03:01:27,920 WOULDN'T EXPECT. I WILL PUT A 4749 03:01:27,920 --> 03:01:31,440 LINK INTO THE CHAT ON THAT TOO. 4750 03:01:31,440 --> 03:01:35,720 >> THANK YOU. SID. 4751 03:01:35,720 --> 03:01:39,800 >> HI, EVERYBODY. MY MAIN 4752 03:01:39,800 --> 03:01:41,400 ANNOUNCEMENT IS MY BOOK ON 4753 03:01:41,400 --> 03:01:43,760 DISORDERS OF CONSCIOUSNESS NOW 4754 03:01:43,760 --> 03:01:45,160 YOU CAN'T SEE IT BECAUSE OF MY 4755 03:01:45,160 --> 03:01:47,000 WEIRD CAMERA, EXISTS AS A THING 4756 03:01:47,000 --> 03:01:50,440 OUTSIDE MY BRAIN NOW. WHICH I'M 4757 03:01:50,440 --> 03:01:52,320 VERY HAPPY, THERE YOU GO. YOU 4758 03:01:52,320 --> 03:01:54,960 CAN KIND OF SEE IT THERE. IT HAS 4759 03:01:54,960 --> 03:01:56,720 A NICE COVER. I'M VERY HAPPY TO 4760 03:01:56,720 --> 03:02:01,000 BE DONE WITH THAT. I HOPE WE DO 4761 03:02:01,000 --> 03:02:02,280 MORE WORK ON CONSCIOUSNESS 4762 03:02:02,280 --> 03:02:06,880 OBVIOUSLY. 4763 03:02:06,880 --> 03:02:08,640 >> THE PEN STRUCTURE IN ENGLISH 4764 03:02:08,640 --> 03:02:10,920 SO USEFUL, IT IS HARD TO SAY 4765 03:02:10,920 --> 03:02:12,480 THAT IT IS FUN -- IT IS GOOD TO 4766 03:02:12,480 --> 03:02:13,800 BE WRITING A BOOK BUT IT IS 4767 03:02:13,800 --> 03:02:15,760 CERTAINLY EASY TO SAY IT IS GOOD 4768 03:02:15,760 --> 03:02:18,880 TO HAVE WRITTEN A BOOK. TO HAVE 4769 03:02:18,880 --> 03:02:20,360 PUBLISH AD BOOK. 4770 03:02:20,360 --> 03:02:20,760 CONGRATULATIONS. 4771 03:02:20,760 --> 03:02:22,080 >> THANK YOU. 4772 03:02:22,080 --> 03:02:25,720 >> OTHER COMMENTS. OTHER THINGS 4773 03:02:25,720 --> 03:02:26,680 GOING ON PEOPLE SHOULD KNOW 4774 03:02:26,680 --> 03:02:35,000 ABOUT? 4775 03:02:35,000 --> 03:02:38,920 >> WELL LOOKS LIKE WE HAVE GOT 4776 03:02:38,920 --> 03:02:46,360 SOMETHING IN CHAT. FROM WALTER. 4777 03:02:46,360 --> 03:02:47,800 NEUROCRITICAL CARE SOCIETY HAS A 4778 03:02:47,800 --> 03:02:49,800 CAMPAIGN ON CURING COMA 4779 03:02:49,800 --> 03:02:51,920 PREDICTING RECOVERY OR 4780 03:02:51,920 --> 03:02:53,240 NON-RECOVERY FROM COMA. 4781 03:02:53,240 --> 03:02:57,800 INTERESTING. THAT A NEW HAND OR 4782 03:02:57,800 --> 03:03:01,320 OLD HAND NITA? AN OLD HAND. ALL 4783 03:03:01,320 --> 03:03:03,400 RIGHT. LET'S CONCEIVABLE WE 4784 03:03:03,400 --> 03:03:06,360 MIGHT ACTUALLY GIVE YOU A FEW 4785 03:03:06,360 --> 03:03:10,040 MINUTES OF FOUND TIME. 4786 03:03:10,040 --> 03:03:14,960 CHRISTINE, JOHN, ANY LAST WORDS? 4787 03:03:14,960 --> 03:03:18,600 >> ONLY TO THANK EVERYBODY FOR 4788 03:03:18,600 --> 03:03:20,600 THEIR CONTRIBUTIONS AND 4789 03:03:20,600 --> 03:03:21,680 ENGAGEMENT AND GREAT DISCUSSION 4790 03:03:21,680 --> 03:03:24,720 AND GOOD IDEAS. IT IS NICE TO 4791 03:03:24,720 --> 03:03:26,720 SEE Y'ALL ON THE SCREEN, WISH I 4792 03:03:26,720 --> 03:03:27,880 COULD SEE YOU IN PERSON SOME 4793 03:03:27,880 --> 03:03:28,200 DAY. 4794 03:03:28,200 --> 03:03:30,200 >> SOME DAY. 4795 03:03:30,200 --> 03:03:32,440 >> DITTO. THANK YOU ALL SO MUCH 4796 03:03:32,440 --> 03:03:34,320 FOR GREAT -- FOR US IN 4797 03:03:34,320 --> 03:03:36,920 CALIFORNIA MORNING DISCUSSION 4798 03:03:36,920 --> 03:03:38,120 LOOKING FORWARD TO DOING MUCH 4799 03:03:38,120 --> 03:03:39,960 MORE MOVING AHEAD ON SOME OF 4800 03:03:39,960 --> 03:03:41,600 THESE ISSUES AND HOPEFULLY 4801 03:03:41,600 --> 03:03:43,440 SOONER RATHER THAN LATER SEEING 4802 03:03:43,440 --> 03:03:45,520 EVERYONE IN PERSON AGAIN, NICE 4803 03:03:45,520 --> 03:03:48,600 TO DO. ALL RIGHT. ENJOY YOUR 4804 03:03:48,600 --> 03:03:51,440 FOUND SIX MINUTES AND WE WILL 4805 03:03:51,440 --> 03:06:06,800 SEE YOU SOMETIME. BYE-BYE ALL.