1 00:00:04,673 --> 00:00:06,775 GOOD MORNING EVERYONE, AND 2 00:00:06,775 --> 00:00:10,045 WELCOME TO SESSION 7-H A COUPLE 3 00:00:10,045 --> 00:00:10,846 LOGISTIC ISSUES HERE. 4 00:00:10,846 --> 00:00:13,048 SO WE'RE GOING TO -- SORRY WE'RE 5 00:00:13,048 --> 00:00:16,218 GETTING STARTED JUST A MINUTE 6 00:00:16,218 --> 00:00:16,418 LATE. 7 00:00:16,418 --> 00:00:18,988 A COUPLE ADMINISTRATIVE 8 00:00:18,988 --> 00:00:20,289 ANNOUNCEMENTS FROM ME. 9 00:00:20,289 --> 00:00:21,590 HI, THIS IS HOLLY AGAIN. 10 00:00:21,590 --> 00:00:23,425 I SENT YOU ALL AN E-MAIL 11 00:00:23,425 --> 00:00:23,692 YESTERDAY. 12 00:00:23,692 --> 00:00:24,860 TODAY IS THE LAST DAY. 13 00:00:24,860 --> 00:00:27,696 WE'RE GOING TO SEND YOU THE 14 00:00:27,696 --> 00:00:30,532 POST-COURSE ASSESSMENT LATER 15 00:00:30,532 --> 00:00:31,400 TODAY WILL. 16 00:00:31,400 --> 00:00:33,369 IF YOU HAVE FOLLOWED THE COURSE 17 00:00:33,369 --> 00:00:35,771 LIVE, GO AHEAD AND TAKE IT AS 18 00:00:35,771 --> 00:00:38,874 SOON AS YOU WOULD LIKE TO. 19 00:00:38,874 --> 00:00:40,843 FOR THOSE OF YOU WHO NEED TO 20 00:00:40,843 --> 00:00:42,378 SPEND SOME TIME REVIEWING 21 00:00:42,378 --> 00:00:46,315 LECTURES AND TAKING QUIZZES, WE 22 00:00:46,315 --> 00:00:50,552 WILL RE-SEND IT ON THE 16TH. 23 00:00:50,552 --> 00:00:53,288 THE LAST DAY TO REVIEW RECORDED 24 00:00:53,288 --> 00:00:58,227 LECTURES AND COMPLETE -- AND TO 25 00:00:58,227 --> 00:01:00,195 COMPLETE QUIZ SZ TWO WEEKS FROM 26 00:01:00,195 --> 00:01:03,932 TODAY, THE 15TH OF NOVEMBER AT 27 00:01:03,932 --> 00:01:05,134 11:59 P.M. EASTERN TIME. 28 00:01:05,134 --> 00:01:10,506 AND ON YOUR CERTIFICATES WE ARE 29 00:01:10,506 --> 00:01:12,608 GOING TO PREPARE THOSE AFTER THE 30 00:01:12,608 --> 00:01:14,309 15TH SO WE CAN GET ALL THE DATA 31 00:01:14,309 --> 00:01:16,278 IN, YOU'LL GET IT BY DECEMBER 1 32 00:01:16,278 --> 00:01:19,882 OR FOUR WEEKS AFTER CLASS, AS WE 33 00:01:19,882 --> 00:01:22,684 ADVERTISED. 34 00:01:22,684 --> 00:01:24,653 SO A QUICK REVIEW OF TOAVMENTD 35 00:01:24,653 --> 00:01:28,057 FIRST THE WORD OF THE DAY IS 36 00:01:28,057 --> 00:01:28,424 NONINVASIVENESS. 37 00:01:28,424 --> 00:01:30,225 WE WERE GOING TO START WITH 38 00:01:30,225 --> 00:01:32,194 DR. MARIELLE GROSS ON WEARABLES, 39 00:01:32,194 --> 00:01:35,464 SHE'S RUNNING A LITTLE LATE, SO 40 00:01:35,464 --> 00:01:37,433 SASKIA HENDRIKS HAS NICELY 41 00:01:37,433 --> 00:01:39,401 STEPPED IN AND IS GOING TO DO 42 00:01:39,401 --> 00:01:41,937 HER LECTURE ON IMPLANTABLE BRAIN 43 00:01:41,937 --> 00:01:42,271 DEVICES. 44 00:01:42,271 --> 00:01:44,540 THEN WE'LL HAVE DR. GROSS TALK 45 00:01:44,540 --> 00:01:49,044 ABOUT WEARABLES, AND THEN WE'LL 46 00:01:49,044 --> 00:01:54,783 HAVE VAS RAHM -- AND THEN WE'LL 47 00:01:54,783 --> 00:01:57,619 HAVE VAS RAHIMZADEH RSZ TALK 48 00:01:57,619 --> 00:01:59,822 WILL LLM'S. 49 00:01:59,822 --> 00:02:03,125 SASKIA IS HERE AT THE NIH 50 00:02:03,125 --> 00:02:04,226 BIOETHICS AND HAS JOINT 51 00:02:04,226 --> 00:02:06,428 APPOINTMENT IN NEUROETHICS AT 52 00:02:06,428 --> 00:02:07,296 THE NATIONAL INSTITUTE OF 53 00:02:07,296 --> 00:02:08,063 NEUROLOGICAL DISORDERS AND 54 00:02:08,063 --> 00:02:09,832 STROKES, FOCUSES HER RESEARCH ON 55 00:02:09,832 --> 00:02:11,667 RESEARCH ETHICS AND THE ETHICAL, 56 00:02:11,667 --> 00:02:14,536 SOCIAL AND LEGAL IMPLICATIONS OF 57 00:02:14,536 --> 00:02:17,372 EMERGING TECHNOLOGIES, PRIMARILY 58 00:02:17,372 --> 00:02:18,907 IN NEUROSCIENCE AND 59 00:02:18,907 --> 00:02:20,109 REPRODUCTION, THEREFORE, SHE IS 60 00:02:20,109 --> 00:02:21,977 THE PERFECT PERSON TO START US 61 00:02:21,977 --> 00:02:24,480 OFF ON IMPLANTABLE BRAIN 62 00:02:24,480 --> 00:02:26,915 DEVICES, AND IT'S A LOVELY 63 00:02:26,915 --> 00:02:29,084 FOLLOW-UP TO THE LECTURE ON 64 00:02:29,084 --> 00:02:30,052 POST-TRIAL ACCESS THAT WE HAD 65 00:02:30,052 --> 00:02:31,153 LAST WEEK. 66 00:02:31,153 --> 00:02:35,724 SO I'LL HAND IT OFF TO SASKIA. 67 00:02:35,724 --> 00:02:37,426 >> THANK YOU SO MUCH, HOLLY. 68 00:02:37,426 --> 00:02:39,161 IT'S A PLEASURE TO SPEAK HERE 69 00:02:39,161 --> 00:02:39,595 TODAY. 70 00:02:39,595 --> 00:02:39,828 OKAY. 71 00:02:39,828 --> 00:02:44,733 SO I'M GOING TO TALK ABOUT BRAIN 72 00:02:44,733 --> 00:02:45,000 IMPLANTS. 73 00:02:45,000 --> 00:02:46,034 SO LET'S START HERE. 74 00:02:46,034 --> 00:02:48,470 WHY ARE WE IMPLANTING DEVICES IN 75 00:02:48,470 --> 00:02:51,874 PEOPLE'S BRAINS? 76 00:02:51,874 --> 00:02:52,975 WELL, NEUROLOGICAL AND MENTAL 77 00:02:52,975 --> 00:02:54,176 HEALTH DISORDERS ARE CAWGZ A 78 00:02:54,176 --> 00:02:55,677 HIGH BURDEN OF DISEASE, BOTH IN 79 00:02:55,677 --> 00:02:58,547 THE HAD U.S. AND WORLDWIDE. 80 00:02:58,547 --> 00:03:00,382 HOWEVER, THERE HAVE BEEN 81 00:03:00,382 --> 00:03:01,917 EXCITING DEVELOPS IN ENGINEERING 82 00:03:01,917 --> 00:03:04,119 AND NEUROSCIENCE THAT THERE WE 83 00:03:04,119 --> 00:03:05,521 MAY BE DEVELOPING DEVICES THAT 84 00:03:05,521 --> 00:03:07,089 COULD ALLEVIATE THIS HIGH BURDEN 85 00:03:07,089 --> 00:03:07,856 OF DISEASE. 86 00:03:07,856 --> 00:03:10,459 SOME HAVE EVEN DESCRIBED THE 87 00:03:10,459 --> 00:03:12,194 CREATION OF NEW THERAPEUTIC 88 00:03:12,194 --> 00:03:13,862 TOOLS AND ETHICAL IMPERATIVE IN 89 00:03:13,862 --> 00:03:17,466 THIS SPACE. 90 00:03:17,466 --> 00:03:19,468 INDEED, SOME NEURAL IMPLANTS 91 00:03:19,468 --> 00:03:21,069 HAVE ARECEIVED REMARKABLE 92 00:03:21,069 --> 00:03:23,472 SUCCESSES SUCH AS FOR EXAMPLE 93 00:03:23,472 --> 00:03:25,908 DEEP BRAIN STIMULATION FOR 94 00:03:25,908 --> 00:03:36,251 PARKINSON'S DISEASE. 95 00:03:38,921 --> 00:03:41,490 FOR THIS DEVICE, A SPEECH 96 00:03:41,490 --> 00:03:41,790 PROCEDURE -- 97 00:03:41,790 --> 00:03:44,526 >> UCSF RESEARCHERS HAVE SHOWN 98 00:03:44,526 --> 00:03:46,128 THAT FULL WORDS AND SENTENCES 99 00:03:46,128 --> 00:03:47,930 CAN BE DECODED FROM THE BRAIN 100 00:03:47,930 --> 00:03:49,298 ACTIVITY A PERSON WITH PARALYSIS 101 00:03:49,298 --> 00:03:56,038 WHO IS UNABLE TO SPEAK. 102 00:03:56,038 --> 00:04:00,409 DR. EDWARD ARE -- WORKED A -- 103 00:04:00,409 --> 00:04:02,578 WHO LOST THE ABILITY TO 104 00:04:02,578 --> 00:04:04,012 ARTICULATE WORDS FIFTEEN YEARS 105 00:04:04,012 --> 00:04:05,881 AGO, THE MAN HAS RELIED ON OTHER 106 00:04:05,881 --> 00:04:07,616 LIMITED MEANS TO COMMUNICATE. 107 00:04:07,616 --> 00:04:07,849 [MUSIC] 108 00:04:07,849 --> 00:04:09,618 IN THIS STUDY, AN ELECTRODE 109 00:04:09,618 --> 00:04:11,920 DEVICE WAS IMPLANT #-D OVER THE 110 00:04:11,920 --> 00:04:13,121 BRAIN AREA THAT NORMALLY 111 00:04:13,121 --> 00:04:16,158 CONTROLS THE VOCAL TRACT. 112 00:04:16,158 --> 00:04:18,560 A QUESTION WAS DISPLAYED FOR THE 113 00:04:18,560 --> 00:04:19,928 PARTICIPANT AND THE DEVICE 114 00:04:19,928 --> 00:04:21,430 RECORDED BRAIN ACTIVITY WHILE HE 115 00:04:21,430 --> 00:04:24,633 ATTEMPTED TO SPEAK IN REPLY. 116 00:04:24,633 --> 00:04:27,269 A COMPUTER ALGORITHM TRANSLATED 117 00:04:27,269 --> 00:04:28,704 THE BRAIN ACTIVITY PATTERNS INTO 118 00:04:28,704 --> 00:04:35,611 WORDS AND SENTENCES IN REALTIME 119 00:04:35,611 --> 00:04:40,749 HAD. -- IN REALTIME. 120 00:04:40,749 --> 00:04:50,892 [MUSIC] 121 00:04:58,800 --> 00:05:00,702 THE COMPUTER ALGORITHM WAS 122 00:05:00,702 --> 00:05:02,337 TRAINED TO DIFFERENTIATE AMONG 123 00:05:02,337 --> 00:05:05,207 50 WORDS THAT COULD GENERATE 124 00:05:05,207 --> 00:05:07,276 OVER 1,000 SENTENCES. 125 00:05:07,276 --> 00:05:12,014 WORDS WERE DECODE WD UP TO 93% 126 00:05:12,014 --> 00:05:14,249 ACCURACY AT 18 WORDS PER MINUTE. 127 00:05:14,249 --> 00:05:16,952 THIS IS THE FIRST TIME BRAIN 128 00:05:16,952 --> 00:05:18,920 ACTIVITY IN THE SPEECH CORTEX OF 129 00:05:18,920 --> 00:05:21,156 A PARALYZED PERSON HAS BEEN 130 00:05:21,156 --> 00:05:25,560 DECODED INTO FULL WORDS. 131 00:05:25,560 --> 00:05:26,028 [MUSIC] 132 00:05:26,028 --> 00:05:27,362 THE ADVANCE PAVES THE WAY FOR 133 00:05:27,362 --> 00:05:28,997 NEW TECHNOLOGY TO RESTORE 134 00:05:28,997 --> 00:05:30,966 NATURAL AND RAPID COMMUNICATION 135 00:05:30,966 --> 00:05:36,438 FOR PEOPLE WITH SEVERE PARALYSIS 136 00:05:36,438 --> 00:05:38,740 . 137 00:05:38,740 --> 00:05:41,176 >> OKAY. 138 00:05:41,176 --> 00:05:43,812 SO AS YOU MIGHT IMAGINE, 139 00:05:43,812 --> 00:05:45,981 HOWEVER, IN ORDER TO CREATE 140 00:05:45,981 --> 00:05:48,250 THESE NEW DEVICES AS THEY ARE 141 00:05:48,250 --> 00:05:49,818 THERAPEUTIC TOOLS, WE FIRST NEED 142 00:05:49,818 --> 00:05:50,819 CLINICAL RESEARCH TO MAKE SURE 143 00:05:50,819 --> 00:05:52,120 THEY'RE WORKING AND ARE 144 00:05:52,120 --> 00:05:54,623 SUFFICIENTLY SAFE. 145 00:05:54,623 --> 00:05:57,526 NOW, THIS CLIN -- THESE CLINICAL 146 00:05:57,526 --> 00:05:59,127 TRIALS RAISE A NUMBER OF ETHICAL 147 00:05:59,127 --> 00:06:01,530 CHALLENGES, AS YOU YOU MIGHT 148 00:06:01,530 --> 00:06:01,763 IMAGINE. 149 00:06:01,763 --> 00:06:02,731 OF COURSE THERE IS ALREADY 150 00:06:02,731 --> 00:06:04,933 GUIDANCE ON HOW TO DO CLINICAL 151 00:06:04,933 --> 00:06:06,234 RESEARCH ETHICALLY, AS YOU'VE 152 00:06:06,234 --> 00:06:07,302 LEARNED DURING THE COURSE OF 153 00:06:07,302 --> 00:06:09,404 THIS COURSE, AND WE CAN HEAVILY 154 00:06:09,404 --> 00:06:11,506 DRAW ON THAT, ALSO FOR THIS 155 00:06:11,506 --> 00:06:12,140 SPACE. 156 00:06:12,140 --> 00:06:14,910 HOWEVER, SOME OF THE NUANCES AND 157 00:06:14,910 --> 00:06:16,978 THE CONTEXT RELATED FACTORS IN 158 00:06:16,978 --> 00:06:18,213 THIS SPACE REQUIRE SPECIFICATION 159 00:06:18,213 --> 00:06:19,514 AND INTERPRETATION OF THIS 160 00:06:19,514 --> 00:06:22,250 EXISTING GUIDANCE IN THESE 161 00:06:22,250 --> 00:06:23,719 SPECIFIC CHALLENGES. 162 00:06:23,719 --> 00:06:26,455 THE NIH BRAIN INITIATIVE 163 00:06:26,455 --> 00:06:28,090 NEUROETHICS WORKING GROUP 164 00:06:28,090 --> 00:06:31,693 IDENTIFIED THE ETHICS OF NEURAL 165 00:06:31,693 --> 00:06:33,128 ARE BRAIN DEVICE AS A PRIORITY 166 00:06:33,128 --> 00:06:33,362 AREA. 167 00:06:33,362 --> 00:06:35,230 SO TODAY I'LL DISCUSS TWO 168 00:06:35,230 --> 00:06:36,965 SPECIFIC ETHICAL CHALLENGES THAT 169 00:06:36,965 --> 00:06:38,166 WERE IDENTIFIED AS CRITICAL TO 170 00:06:38,166 --> 00:06:39,901 THIS TYPE OF RESEARCH. 171 00:06:39,901 --> 00:06:42,704 FIRST IS THE ANALYSIS AND 172 00:06:42,704 --> 00:06:44,539 ASSESSMENT OF RISK. 173 00:06:44,539 --> 00:06:46,174 SECOND IS POST-TRIAL 174 00:06:46,174 --> 00:06:47,142 RESPONSIBILITIES, AND I'LL SPEND 175 00:06:47,142 --> 00:06:50,011 MOST OF MY TIME THERE. 176 00:06:50,011 --> 00:06:53,715 SO LET'S START WITH RISKS. 177 00:06:53,715 --> 00:06:55,684 SO DETERMINING THE TYPE AND 178 00:06:55,684 --> 00:06:57,886 EXTENT OF RISKS IN THESE TYPES 179 00:06:57,886 --> 00:07:00,055 OF TRIALS IS FUNDAMENTAL TO 180 00:07:00,055 --> 00:07:01,723 EVALUATING THE ETHICS OF NEURAL 181 00:07:01,723 --> 00:07:04,126 DEVICE STUDIES AS IT IS IN OTHER 182 00:07:04,126 --> 00:07:05,127 TYPES OF TRIALS THIS. 183 00:07:05,127 --> 00:07:06,795 ALLOWS US TO PROTECT RESEARCH 184 00:07:06,795 --> 00:07:08,630 PARTICIPANTS FROM UNNECESSARY 185 00:07:08,630 --> 00:07:10,966 HARM, TO INFORM THE RISK/BENEFIT 186 00:07:10,966 --> 00:07:11,933 EVALUATION AND DETERMINE WHETHER 187 00:07:11,933 --> 00:07:13,268 A STUDY IS ETHICAL TO CONDUCT 188 00:07:13,268 --> 00:07:16,938 AND TO ENABLE PROPER INFORMED 189 00:07:16,938 --> 00:07:17,172 CONSENT. 190 00:07:17,172 --> 00:07:19,708 IN THE CONTEXT OF THESE TYPES OF 191 00:07:19,708 --> 00:07:22,110 STUDIES, THERE ARE SIX SOURCES 192 00:07:22,110 --> 00:07:24,279 OF RISKS THAT MAY COME UP IN 193 00:07:24,279 --> 00:07:24,946 THESE TRIALS. 194 00:07:24,946 --> 00:07:26,348 SOME OF THESE RISKS MAY HAVE 195 00:07:26,348 --> 00:07:28,116 SPECIAL MEANING TO PATIENTS 196 00:07:28,116 --> 00:07:30,285 BECAUSE THEY RELATE TO THE 197 00:07:30,285 --> 00:07:30,852 BRAIN. 198 00:07:30,852 --> 00:07:33,321 SO FIRST, SURGERY FOR IMPLANTING 199 00:07:33,321 --> 00:07:35,557 OR REPLACING INVASIVE DEVICES 200 00:07:35,557 --> 00:07:38,627 CAUSES RISKS, INCLUDING THOSE OF 201 00:07:38,627 --> 00:07:40,395 LIKE HEMORRHAGE, STROKE AND 202 00:07:40,395 --> 00:07:40,662 SEIZURES. 203 00:07:40,662 --> 00:07:43,465 OF COURSE, THERE'S ALSO GENERAL 204 00:07:43,465 --> 00:07:45,434 PERKS RI OPERATIVE COMPLICATIONS 205 00:07:45,434 --> 00:07:47,402 THAT ARE RARE BUT CAN BE SEVERE 206 00:07:47,402 --> 00:07:50,806 WHEN THEY OCCUR, LIKE DEEP VEIN 207 00:07:50,806 --> 00:07:51,239 THROMBOSIS. 208 00:07:51,239 --> 00:07:53,074 SECOND, HARDWARE THAT'S 209 00:07:53,074 --> 00:07:56,178 IMPLANTED IN BRAINS POSES RISKS, 210 00:07:56,178 --> 00:07:57,379 INCLUDING, FOR EXAMPLE N A LEAD 211 00:07:57,379 --> 00:07:59,448 CAN BREAK, CAN MIGRATE OR 212 00:07:59,448 --> 00:08:01,650 MALFUNCTION, SOME OF WHICH MAY 213 00:08:01,650 --> 00:08:03,385 REQUIRE ADDITIONAL SURGERY, BUT 214 00:08:03,385 --> 00:08:05,020 MAY ALSO CAUSE THINGS LIKE 215 00:08:05,020 --> 00:08:06,888 BLEEDING AND SO ON. 216 00:08:06,888 --> 00:08:09,191 THE STIMULATION OF THESE DEVICES 217 00:08:09,191 --> 00:08:10,992 CAN CAUSE ADVERSE EFFECTS. 218 00:08:10,992 --> 00:08:12,360 FOR EXAMPLE, WE'VE SEEN THINGS 219 00:08:12,360 --> 00:08:15,330 LIKE SPEECH DISTURBANCES, 220 00:08:15,330 --> 00:08:17,933 PARESTHESIAS AND EFFECTIVE 221 00:08:17,933 --> 00:08:20,001 DISRUPTIONS WITH THE USE OF DEEP 222 00:08:20,001 --> 00:08:22,437 BRAIN STIMULATION, DBS. 223 00:08:22,437 --> 00:08:24,272 SIDE EFFECTS TEND ON DEPEND ON 224 00:08:24,272 --> 00:08:26,274 THE LEVEL AND FOCUS OF THE 225 00:08:26,274 --> 00:08:27,676 STIMULATION AND CAN OFTEN BE 226 00:08:27,676 --> 00:08:29,678 SOMEWHAT ALLEVIATED BY ADJUSTING 227 00:08:29,678 --> 00:08:31,313 THE SETTINGS OF THE DEVICE AND 228 00:08:31,313 --> 00:08:32,614 STIMULATION, ALTHOUGH IN THIS 229 00:08:32,614 --> 00:08:34,282 CASE SOMETIMES THIS INVOLVES 230 00:08:34,282 --> 00:08:35,917 TRADE-OFFS WITH THE THERAPEUTIC 231 00:08:35,917 --> 00:08:36,384 EFFECTS. 232 00:08:36,384 --> 00:08:37,986 SOME STUDIES ALSO REPORT ON 233 00:08:37,986 --> 00:08:40,622 EFFECTS OF DBS AND OTHER 234 00:08:40,622 --> 00:08:42,157 DEVICES, ON COGNITION, 235 00:08:42,157 --> 00:08:43,892 PERSONALITY, MOOD AND BEHAVIOR, 236 00:08:43,892 --> 00:08:46,862 SOMETIMES DESCRIBED AS ATYPICAL 237 00:08:46,862 --> 00:08:47,095 RISKS. 238 00:08:47,095 --> 00:08:49,831 THESE CHANGES ARE REALLY POORLY 239 00:08:49,831 --> 00:08:53,768 UNDERSTOOD, AND UNPREDICTABLE. 240 00:08:53,768 --> 00:08:54,970 AFFECTS ON PERSONALITY OR 241 00:08:54,970 --> 00:08:57,239 BEHAVIOR MAY BE INTEND OR 242 00:08:57,239 --> 00:08:58,340 UNINTENDED, MAY BE CONSIDERED 243 00:08:58,340 --> 00:09:00,509 BENEFICIAL OR HARMFUL AND MAY BE 244 00:09:00,509 --> 00:09:01,910 EVALUATED DIFFERENTLY DEPENDING 245 00:09:01,910 --> 00:09:03,478 ON WHO YOU ASK, THE PARENT OR 246 00:09:03,478 --> 00:09:05,680 THE CAREGIVER OR SOMEONE ELSE. 247 00:09:05,680 --> 00:09:07,649 WE NEED FURTHER RESEARCH TO 248 00:09:07,649 --> 00:09:09,217 STUDY HOW OFTEN THESE TYPES OF 249 00:09:09,217 --> 00:09:10,519 PERSONALITY CHANGES AND 250 00:09:10,519 --> 00:09:13,722 BEHAVIORAL CHANGES OCCUR, 251 00:09:13,722 --> 00:09:14,789 CHARACTERIZED, WHEN THEY ARE 252 00:09:14,789 --> 00:09:16,691 PROBLEMATIC AND WEIGH HOW THESE 253 00:09:16,691 --> 00:09:18,627 RISKS WEIGH AGAINST POSSIBLE 254 00:09:18,627 --> 00:09:20,595 THERAPEUTIC BENEFITS. 255 00:09:20,595 --> 00:09:22,397 AS I'M SURE IS NOT A SURPRISE TO 256 00:09:22,397 --> 00:09:24,633 YOU AT THIS POINT IN THE COURSE, 257 00:09:24,633 --> 00:09:26,735 RESEARCH ITSELF MAY ENTAIL SOME 258 00:09:26,735 --> 00:09:28,603 INCREMENTAL RISKS, INCLUDING, 259 00:09:28,603 --> 00:09:29,704 FOR EXAMPLE, RISKS OF PROCEDURES 260 00:09:29,704 --> 00:09:33,208 THAT ARE CONDUCTED ONLY FOR 261 00:09:33,208 --> 00:09:34,743 RESEARCH PURPOSES, LIKE 262 00:09:34,743 --> 00:09:36,811 EXTENDING A CLINICALLY INDICATED 263 00:09:36,811 --> 00:09:38,113 SURGERY IN ORDER TO DO MORE 264 00:09:38,113 --> 00:09:41,216 MEASUREMENT OF THE BRAIN. 265 00:09:41,216 --> 00:09:43,385 WE ALSO HAVE TO CONSIDER PRIVACY 266 00:09:43,385 --> 00:09:44,052 AND SECURITY. 267 00:09:44,052 --> 00:09:48,423 SO IN TERMS OF PRIVACY, WE 268 00:09:48,423 --> 00:09:51,293 ANALYZE AGGREGATE GRAIN THE MAY 269 00:09:51,293 --> 00:09:52,394 DISCLOSE SENSITIVE OR PRIVATE 270 00:09:52,394 --> 00:09:53,929 INFORMATION ABOUT INDIVIDUALS, 271 00:09:53,929 --> 00:09:55,230 AND THOSE SNROSTLED A TRIAL 272 00:09:55,230 --> 00:09:57,098 SHOULD THINK CAREFULLY ABOUT 273 00:09:57,098 --> 00:09:58,533 WEIGHING THE SOCIAL AND 274 00:09:58,533 --> 00:10:00,168 SCIENTIFIC VALUES OF SHARING 275 00:10:00,168 --> 00:10:01,369 DATA WITH THE PRIVACY INTERESTS 276 00:10:01,369 --> 00:10:04,105 AND OTHER INTERESTS OF POTENTIAL 277 00:10:04,105 --> 00:10:04,439 PARTICIPANTS. 278 00:10:04,439 --> 00:10:07,142 THERE'S ALSO SOME CONCERN ABOUT 279 00:10:07,142 --> 00:10:10,011 THIRD PARTY HACKING OF THE 280 00:10:10,011 --> 00:10:12,213 DEVICE, RESULTING IN 281 00:10:12,213 --> 00:10:14,282 UNAUTHORIZED ACCESS TO DATA, OR 282 00:10:14,282 --> 00:10:16,384 EVEN CHANGING DEVICE SETTINGS, 283 00:10:16,384 --> 00:10:19,020 WHICH COULD POSE SERIOUS HEALTH 284 00:10:19,020 --> 00:10:19,988 RISKS FOR INDIVIDUALS. 285 00:10:19,988 --> 00:10:21,289 I'M UNAWARE OF ANY OF THESE 286 00:10:21,289 --> 00:10:22,624 CASES THAT HAVE ACTUALLY 287 00:10:22,624 --> 00:10:24,492 OCCURRED, BUT THIS IS A RISK 288 00:10:24,492 --> 00:10:25,794 THAT WE'RE BECOMING MORE AWARE 289 00:10:25,794 --> 00:10:28,997 OF FOR IMPLANTED DEVICES IN 290 00:10:28,997 --> 00:10:29,230 GENERAL. 291 00:10:29,230 --> 00:10:30,966 ANOTHER THING TO CONSIDER IS 292 00:10:30,966 --> 00:10:32,567 POTENTIAL FINANCIAL BURDENS. 293 00:10:32,567 --> 00:10:34,336 FOR EXAMPLE, IF THERE IS A 294 00:10:34,336 --> 00:10:35,770 COMPLICATION THAT LEADS TO 295 00:10:35,770 --> 00:10:36,771 LONG-TERM DISABILITY, THIS MIGHT 296 00:10:36,771 --> 00:10:40,475 HAVE A FINANCIAL IMPACT ON THE 297 00:10:40,475 --> 00:10:40,709 PATIENT. 298 00:10:40,709 --> 00:10:43,311 SO IN OUR VIEW, A RESEARCH 299 00:10:43,311 --> 00:10:44,946 PROTOCOL SHOULD BE EVALUATED FOR 300 00:10:44,946 --> 00:10:48,049 THESE SIX SOURCES OF RISKS IN 301 00:10:48,049 --> 00:10:51,987 TERMS OF MAKING THE RISK/BENEFIT 302 00:10:51,987 --> 00:10:52,320 CALCULATION. 303 00:10:52,320 --> 00:10:54,189 SO AS ALWAYS, WE WANT TO 304 00:10:54,189 --> 00:10:56,057 MINIMIZE THE RISKS AS FAR AS 305 00:10:56,057 --> 00:10:57,959 POSSIBLE WITHIN WHAT'S POSSIBLE 306 00:10:57,959 --> 00:10:59,461 FOR THE GOALS OF THE STUDY, AND 307 00:10:59,461 --> 00:11:01,463 WE NEED TO MAKE SURE THAT THE 308 00:11:01,463 --> 00:11:02,864 BENEFITS TO PARTICIPANTS AND 309 00:11:02,864 --> 00:11:05,367 SOCIETY ARE PROPORTIONATE TO OR 310 00:11:05,367 --> 00:11:06,935 OUTWEIGH THE RISKS OF ANY OF 311 00:11:06,935 --> 00:11:07,936 THESE RESEARCH STUDIES. 312 00:11:07,936 --> 00:11:10,105 IN THE CONTEXT OF BRAIN 313 00:11:10,105 --> 00:11:11,973 IMPLANTS, THE RISKS ARE 314 00:11:11,973 --> 00:11:13,508 SUFFICIENTLY HIGH, THAT WE TEND 315 00:11:13,508 --> 00:11:15,710 TONT DO THIS -- THAT WE TEND TO 316 00:11:15,710 --> 00:11:18,213 NOT DO THIS RESEARCH WITH BRAIN 317 00:11:18,213 --> 00:11:20,382 IMPLANTS UNLESS THERE'S EITHER A 318 00:11:20,382 --> 00:11:21,616 SUFFICIENT THERAPEUTIC BENEFIT 319 00:11:21,616 --> 00:11:24,552 TO COMPENSATE THE RISK TO 320 00:11:24,552 --> 00:11:26,855 INDIVIDUALS, OR WE ADD ON A 321 00:11:26,855 --> 00:11:28,490 RESEARCH PROCEDURE TO A 322 00:11:28,490 --> 00:11:30,225 CLINICALLY INDICATED BRAIN 323 00:11:30,225 --> 00:11:32,627 SURGERY, SO FOR EXAMPLE, WE DO 324 00:11:32,627 --> 00:11:34,062 SOME MEASUREMENTS TO BETTER 325 00:11:34,062 --> 00:11:36,598 UNDERSTAND THE BRAIN ON 326 00:11:36,598 --> 00:11:38,333 CONSENTING PATIENTS WHO ARE 327 00:11:38,333 --> 00:11:41,636 UNDERGOING EPILEPSY SURGERY, FOR 328 00:11:41,636 --> 00:11:42,170 EXAMPLE. 329 00:11:42,170 --> 00:11:45,173 SO IN TERMS OF RISK LIMITS OF 330 00:11:45,173 --> 00:11:46,474 ACCEPTABLE RISKS IN THESE TYPES 331 00:11:46,474 --> 00:11:47,709 OF RESEARCH, OF COURSE IT 332 00:11:47,709 --> 00:11:49,577 DEPENDS ON WHETHER IT HAS A 333 00:11:49,577 --> 00:11:52,080 THERAPEUTIC INTENT OR NOT. 334 00:11:52,080 --> 00:11:54,716 WITHIN RESEARCH, WITH A -- WHAT 335 00:11:54,716 --> 00:11:57,252 ARE THE PROSPECTS OF BENEFITS. 336 00:11:57,252 --> 00:12:05,694 AS IN ALL SURGERIES, RISKS ARE 337 00:12:05,694 --> 00:12:07,195 CR DEPENDENT ON BENEFITS. 338 00:12:07,195 --> 00:12:09,631 WITH TRIALS T PATIENTS WITH 339 00:12:09,631 --> 00:12:10,398 TREATMENT-RESISTANT DISORDERS, 340 00:12:10,398 --> 00:12:12,033 FOR WHOM THIS IS A LAST RESORT 341 00:12:12,033 --> 00:12:14,169 OF SOME KIND, AND PATIENTS WITH 342 00:12:14,169 --> 00:12:17,372 SIGNIFICANT BURDENS OF DISEASE. 343 00:12:17,372 --> 00:12:20,775 SO MORE PROTECTION MAY BE 344 00:12:20,775 --> 00:12:21,776 APPROPRIATE FOR CERTAIN 345 00:12:21,776 --> 00:12:24,946 VULNERABLE GROUPS, SUCH AS 346 00:12:24,946 --> 00:12:27,682 ADULTS IF WITH THE, WITH THE 347 00:12:27,682 --> 00:12:28,783 CAPACITY -- OR A PARENT WITH 348 00:12:28,783 --> 00:12:31,286 CAPACITY FOR CONSENT, AS ALWAYS, 349 00:12:31,286 --> 00:12:33,254 PROTECTING VULNERABLE APARTMENT 350 00:12:33,254 --> 00:12:34,956 ANTS BY EXCLUDING THEM FROM 351 00:12:34,956 --> 00:12:36,925 RESEARCH ALSO DEPRIVES THEM OF 352 00:12:36,925 --> 00:12:38,059 THE POTENTIAL BENEFIT TO 353 00:12:38,059 --> 00:12:40,228 RESEARCH AND MAY EXPOSE THE 354 00:12:40,228 --> 00:12:41,763 POPULATION TO MORE RISKS LATER 355 00:12:41,763 --> 00:12:43,865 ON IF INTERVENTIONSES ARE USED 356 00:12:43,865 --> 00:12:45,066 WITHOUT EVIDENCE IN THIS 357 00:12:45,066 --> 00:12:46,034 SPECIFIC TARGET POPULATION. 358 00:12:46,034 --> 00:12:47,902 SO IN TERMS OF RESEARCH WITHOUT 359 00:12:47,902 --> 00:12:49,170 A PROSPECT OF BENEFIT, THESE 360 00:12:49,170 --> 00:12:52,807 WOULD BE THE ADD-ON TYPE OF 361 00:12:52,807 --> 00:12:55,009 STUDIES, THERE'S A NUMBER OF 362 00:12:55,009 --> 00:12:56,544 QUESTIONS ABOUT HOW MUCH RISK IS 363 00:12:56,544 --> 00:12:58,413 ACCEPTABLE FOR THESE TYPES OF 364 00:12:58,413 --> 00:13:00,181 INTERVENTIONS WITHOUT PROSPECT 365 00:13:00,181 --> 00:13:01,015 OF BENEFIT. 366 00:13:01,015 --> 00:13:02,050 FOR EXAMPLE, HOW LONG IS IT 367 00:13:02,050 --> 00:13:07,255 ACCEPTABLE TO PROLONG A SURGERY, 368 00:13:07,255 --> 00:13:08,623 AND I BRAIN SURGERY, IN ORDER TO 369 00:13:08,623 --> 00:13:10,592 JUST OBTAIN MORE KNOWLEDGE FOR 370 00:13:10,592 --> 00:13:12,327 SOCIETY AND SCIENCE. 371 00:13:12,327 --> 00:13:12,560 OKAY. 372 00:13:12,560 --> 00:13:18,900 SO LET'S MOVE TO POST-TRIAL 373 00:13:18,900 --> 00:13:21,202 RESPONSIBILITIES. 374 00:13:21,202 --> 00:13:22,937 SO OBVIOUSLY SINCE THIS IS 375 00:13:22,937 --> 00:13:24,839 CLINICAL RESEARCH, PARTICIPANTS 376 00:13:24,839 --> 00:13:26,241 MAY OR MAY NOT BENEFIT FROM 377 00:13:26,241 --> 00:13:27,208 PARTICIPATING IN A CLINICAL 378 00:13:27,208 --> 00:13:28,643 TRIAL BUT IN MANY OF THESE CASES 379 00:13:28,643 --> 00:13:29,944 OF A RESEARCH WITH THE PROSPECT 380 00:13:29,944 --> 00:13:34,783 OF BENEFIT, THE PROSPECT OF 381 00:13:34,783 --> 00:13:36,417 POTENTIAL BENEFIT IS A STRONG 382 00:13:36,417 --> 00:13:37,519 MOTIVATOR FOR PARTICIPANTS TO 383 00:13:37,519 --> 00:13:38,720 WANT TO PARTICIPATE IN THESE 384 00:13:38,720 --> 00:13:40,455 STUDIES, AND FOR THE MOST PART, 385 00:13:40,455 --> 00:13:42,957 GUIDED BY REGULATIONS AND 386 00:13:42,957 --> 00:13:44,926 ETHICAL FRAMEWORKS, 387 00:13:44,926 --> 00:13:45,693 PARTICIPANTS' INTEREST DURING 388 00:13:45,693 --> 00:13:47,562 THESE TRIALS ARE CAREFULLY 389 00:13:47,562 --> 00:13:48,229 PROTECTED. 390 00:13:48,229 --> 00:13:50,098 HOWEVER, ONE AREA THAT REMAINS 391 00:13:50,098 --> 00:13:52,066 INSUFFICIENTLY ADDRESSED, IN MY 392 00:13:52,066 --> 00:13:54,235 VIEW, IS WHAT HAPPENS TO 393 00:13:54,235 --> 00:13:55,670 PARTICIPANTS WITH THEIR MEDICAL 394 00:13:55,670 --> 00:14:00,809 NEEDS RELATED TO THE DEVICE 395 00:14:00,809 --> 00:14:03,311 AFTER THEIR TRIAL PARTICIPATION 396 00:14:03,311 --> 00:14:03,545 ENDS. 397 00:14:03,545 --> 00:14:05,380 SLOAT ME START WITH A CASE -- SO 398 00:14:05,380 --> 00:14:06,815 LET ME START WITH A CASE, THIS 399 00:14:06,815 --> 00:14:12,487 IS UNFORTUNATELY AN ACTUAL CASE 400 00:14:12,487 --> 00:14:14,422 REPORTED BY JOE BAIRD. 401 00:14:14,422 --> 00:14:18,359 THIS IS A PATIENT WITH SEVERE 402 00:14:18,359 --> 00:14:19,894 EPILEPSY SINCE CHILDHOOD W A 403 00:14:19,894 --> 00:14:21,963 PROFOUND IMPACT ON QUALITY OF 404 00:14:21,963 --> 00:14:22,297 LIFE. 405 00:14:22,297 --> 00:14:23,598 THIS PATIENT VOLUNTEERED FOR 406 00:14:23,598 --> 00:14:26,868 FIRST IN HUMAN TRIAL FOR A BRAIN 407 00:14:26,868 --> 00:14:28,736 COMPUTER INTERFACE WHICH USES 408 00:14:28,736 --> 00:14:30,538 DATA TO PREDICT WHEN EPILEPTIC 409 00:14:30,538 --> 00:14:32,574 PROCEDURES WERE ABOUT TO HAPPEN. 410 00:14:32,574 --> 00:14:33,875 THE BRAIN COMPUTER INTERFACE 411 00:14:33,875 --> 00:14:36,077 THEN ALERTED THE PATIENT, 412 00:14:36,077 --> 00:14:40,048 ALLOWING THEM TO TAKE 413 00:14:40,048 --> 00:14:43,818 PROPHYLACTIC MEDICATION SO THIS 414 00:14:43,818 --> 00:14:45,420 PATIENT WENT FROM AN AVERAGE OF 415 00:14:45,420 --> 00:14:47,589 THREE SEIZURES A MONTH TO NONE, 416 00:14:47,589 --> 00:14:49,023 WHICH PROFOUNDLY IMPACTED HER 417 00:14:49,023 --> 00:14:50,892 QUALITY OF LIFE, THE TYPES OF 418 00:14:50,892 --> 00:14:51,860 ACTIVITIES SHE WAS ABLE TO 419 00:14:51,860 --> 00:14:55,163 ENGAGE IN AND SO ON. 420 00:14:55,163 --> 00:14:56,664 THEN, THE COMPANY EXPERIENCED 421 00:14:56,664 --> 00:14:58,967 WHAT HAS BEEN DESCRIBED AS 422 00:14:58,967 --> 00:15:01,402 FINANCIAL CONSTRAINTS, I BELIEVE 423 00:15:01,402 --> 00:15:06,774 IT FOLDED, AND RECOMMENDED 424 00:15:06,774 --> 00:15:07,175 EXPLANTATION. 425 00:15:07,175 --> 00:15:08,710 LET'S SEE WHAT SHE SAYS, TO HELP 426 00:15:08,710 --> 00:15:09,377 US UNDERSTAND WHAT THIS 427 00:15:09,377 --> 00:15:11,379 EXPERIENCE WAS LIKE FOR THIS 428 00:15:11,379 --> 00:15:11,713 PARTICIPANT. 429 00:15:11,713 --> 00:15:13,081 I WISH I COULD HAVE KEPT IT. 430 00:15:13,081 --> 00:15:14,115 I WOULD HAVE DONE ANYTHING TO 431 00:15:14,115 --> 00:15:15,383 KEEP IT. 432 00:15:15,383 --> 00:15:16,818 I WANTED TO STAY WITH IT. 433 00:15:16,818 --> 00:15:17,919 I WOULD HAVE DONE ANYTHING. 434 00:15:17,919 --> 00:15:19,587 I WOULD HAVE PAID MONEY, I WOULD 435 00:15:19,587 --> 00:15:21,656 HAVE DONE ANYTHING I COULD HAVE. 436 00:15:21,656 --> 00:15:23,958 TO THIS DATE, I'VE NEVER AGAIN 437 00:15:23,958 --> 00:15:26,661 FELT AS SAFE AND SECURE, NOR AM 438 00:15:26,661 --> 00:15:28,496 I THE HAPPY, OUTGOING CONFIDENT 439 00:15:28,496 --> 00:15:29,130 WOMAN I WAS. 440 00:15:29,130 --> 00:15:30,131 I ALWAYS FELT LIKE THERE WAS 441 00:15:30,131 --> 00:15:33,735 PART OF ME MISSING, LIKE I HAD 442 00:15:33,735 --> 00:15:34,836 FORGOTTEN OR LEFT SOMETHING 443 00:15:34,836 --> 00:15:40,174 BEHIND, A PART OF ME. 444 00:15:40,174 --> 00:15:42,477 JUST TO GIVE A LITTLE BIT OF A 445 00:15:42,477 --> 00:15:44,445 DIFFERENT FLAVOR HERE, THIS IS 446 00:15:44,445 --> 00:15:47,515 THE SECOND CASE A PATIENT WITH 447 00:15:47,515 --> 00:15:48,850 TREATMENT-RESISTANT DEPRESSION 448 00:15:48,850 --> 00:15:53,421 WHO HAD UNDERGONE A LOT OF 449 00:15:53,421 --> 00:15:55,957 DIFFERENT CLINICALLY INDICATED 450 00:15:55,957 --> 00:15:58,226 THERAPIES WITHOUT AN EFFECT, AND 451 00:15:58,226 --> 00:15:59,994 SHE DECIDED TO PARTICIPATE IN A 452 00:15:59,994 --> 00:16:02,497 TRIAL INVOLVING DEEP BRAIN 453 00:16:02,497 --> 00:16:02,830 STIMULATION. 454 00:16:02,830 --> 00:16:06,200 AFTER THE TRIAL, SHE WAS ALLOWED 455 00:16:06,200 --> 00:16:08,770 TO KEEP THE DEVICE, AND SHE WAS 456 00:16:08,770 --> 00:16:10,972 VERY HAPPY BECAUSE SHE WAS 457 00:16:10,972 --> 00:16:12,373 FINALLY BENEFITING. 458 00:16:12,373 --> 00:16:14,676 SO HER CLINICAL DEPRESSION 459 00:16:14,676 --> 00:16:18,713 SCORES WENT DOWN. 460 00:16:18,713 --> 00:16:21,783 SO HOWEVER, WHILE SHE HAD THIS 461 00:16:21,783 --> 00:16:23,651 IMPLANT, WHICH WAS BENEFITING 462 00:16:23,651 --> 00:16:28,356 HER, THE DEVICE AT THIS JUNCTURE 463 00:16:28,356 --> 00:16:30,124 WAS NOT YET FDA APPROVED FOR 464 00:16:30,124 --> 00:16:30,725 THIS INDICATION. 465 00:16:30,725 --> 00:16:33,394 SO SHE SAYS, FOR ME, THIS DEVICE 466 00:16:33,394 --> 00:16:35,196 IS NOT AN EXPERIMENT ANYMORE. 467 00:16:35,196 --> 00:16:36,698 WE KNOW THIS WORKS. 468 00:16:36,698 --> 00:16:39,300 THIS IS THE ONLY THING THAT DID 469 00:16:39,300 --> 00:16:39,701 WORK. 470 00:16:39,701 --> 00:16:41,569 IF I NEED A BATTERY REPLACEMENT 471 00:16:41,569 --> 00:16:43,338 OR LEAD FIXED OR ANY OF THOSE 472 00:16:43,338 --> 00:16:45,540 THINGS, IT'S A WAY TO KEEP ME 473 00:16:45,540 --> 00:16:46,174 ALIVE. 474 00:16:46,174 --> 00:16:48,609 SO I'M CONCERNED ABOUT, I WILL 475 00:16:48,609 --> 00:16:50,278 NEVER KNOW FROM ONE SURGERY TO 476 00:16:50,278 --> 00:16:52,213 THE NEXT IF THE NEXT ONE WILL BE 477 00:16:52,213 --> 00:16:56,517 COVERED BY MY INSURANCE. 478 00:16:56,517 --> 00:16:58,052 MANY. 479 00:16:58,052 --> 00:16:58,252 OKAY. 480 00:16:58,252 --> 00:16:59,887 SO UNFORTUNATELY, WE'VE SEEN 481 00:16:59,887 --> 00:17:01,556 SEVERAL CASES IN THE MEDIA OVER 482 00:17:01,556 --> 00:17:04,225 THE PAST YEARS IN WHICH PATIENTS 483 00:17:04,225 --> 00:17:06,260 WERE LEFT WITH A DEFURNGHT 484 00:17:06,260 --> 00:17:08,196 DEVICE AFTER GETTING -- DEFUNCT 485 00:17:08,196 --> 00:17:09,764 DEVICE AFTER GETTING A BRAIN 486 00:17:09,764 --> 00:17:10,198 IMPLANT. 487 00:17:10,198 --> 00:17:11,499 FORMER PATIENTS WHO LACK ACCESS 488 00:17:11,499 --> 00:17:13,568 TO THIS TYPE OF CARE CAN 489 00:17:13,568 --> 00:17:15,103 OBVIOUSLY EXPERIENCE SYMPTOM 490 00:17:15,103 --> 00:17:17,972 REBOUND BUT MAY ALSO EXPERIENCE 491 00:17:17,972 --> 00:17:20,241 INCREASED RISKS AND/OR HIGH 492 00:17:20,241 --> 00:17:22,744 OUT-OF-POCKET EXPENSES. 493 00:17:22,744 --> 00:17:24,078 SO THE GENERAL CASE HERE IS 494 00:17:24,078 --> 00:17:25,079 SOMETHING LIKE THIS. 495 00:17:25,079 --> 00:17:29,017 A PATIENT ENROLLS IN A CLINICAL 496 00:17:29,017 --> 00:17:31,319 TRIAL AND FORTUNATELY BENEFIT 497 00:17:31,319 --> 00:17:31,986 FROM THE DEVICE. 498 00:17:31,986 --> 00:17:32,954 DURING THE TRIAL THE PATIENT IS 499 00:17:32,954 --> 00:17:34,188 WELL TAKEN CARE OF BY THE 500 00:17:34,188 --> 00:17:35,390 CLINICAL TEAM, BUT AFTER THE 501 00:17:35,390 --> 00:17:37,792 TRIAL ENDS, MANY PATIENTS WHO 502 00:17:37,792 --> 00:17:38,826 EXPERIENCE BENEFIT FROM THE 503 00:17:38,826 --> 00:17:40,395 DEVICE WANT TO KEEP IT. 504 00:17:40,395 --> 00:17:42,930 AFTER ALL, MOST HAVE BEEN 505 00:17:42,930 --> 00:17:43,931 TREATMENT-RESISTANT TO EXISTING 506 00:17:43,931 --> 00:17:45,133 OPTIONS, MEANING THAT IF THIS 507 00:17:45,133 --> 00:17:46,667 DEVICE WORKS, THIS IS THE ONE 508 00:17:46,667 --> 00:17:49,303 THING THAT WORK FOR THEM. 509 00:17:49,303 --> 00:17:50,738 PATIENTS, HOWEVER, WHO KEEP AN 510 00:17:50,738 --> 00:17:52,040 IMPLANT MAY NEED CERTAIN TYPES 511 00:17:52,040 --> 00:17:54,142 OF CARE TO MAINTAIN THEIR 512 00:17:54,142 --> 00:17:55,977 BENEFITS AND MINIMIZE THEIR 513 00:17:55,977 --> 00:17:57,612 RISKS RELATED TO THE IMPLANT. 514 00:17:57,612 --> 00:18:00,148 THIS COULD RANGE FROM FOLLOW-UP 515 00:18:00,148 --> 00:18:02,650 VISITS TO ADJUST STIMULATION 516 00:18:02,650 --> 00:18:04,419 SETTINGS, BATTERY REPLACEMENT, 517 00:18:04,419 --> 00:18:05,820 DEVICE REPAIR OR EVEN REMOVAL. 518 00:18:05,820 --> 00:18:07,155 IN MANY CASES, HOWEVER, IN THE 519 00:18:07,155 --> 00:18:08,689 U.S. AND SEVERAL OTHER 520 00:18:08,689 --> 00:18:09,991 COUNTRIES, THERE'S NOT ALWAYS A 521 00:18:09,991 --> 00:18:14,829 CLEAR PATHWAY TO RECEIVE THIS 522 00:18:14,829 --> 00:18:15,029 CARE. 523 00:18:15,029 --> 00:18:17,698 FOR EXAMPLE, INSURANCE MAY OFTEN 524 00:18:17,698 --> 00:18:18,866 DENY COVERAGE FOR THE MOST 525 00:18:18,866 --> 00:18:23,237 EXPERIMENTAL TYPES OF IMPLANTS. 526 00:18:23,237 --> 00:18:24,906 THERE EXIST A POTENTIAL GAP IN 527 00:18:24,906 --> 00:18:26,140 PATIENTS' ACCESS TO CLINICAL 528 00:18:26,140 --> 00:18:29,143 CARE THEY NEED RELATED TO THEIR 529 00:18:29,143 --> 00:18:30,678 DEVICE, THEIR RESEARCH 530 00:18:30,678 --> 00:18:31,012 PARTICIPATION. 531 00:18:31,012 --> 00:18:33,114 AND COMMONLY, THE AT RISK PERIOD 532 00:18:33,114 --> 00:18:35,817 FOR THESE GAPS IN CARE IS 533 00:18:35,817 --> 00:18:38,653 BETWEEN WHEN A PATIENT ROLLS OUT 534 00:18:38,653 --> 00:18:40,221 OF THE TRIAL AND WHEN THE DEVICE 535 00:18:40,221 --> 00:18:44,258 IS FDA APPROVE AND PRESUMABLY 536 00:18:44,258 --> 00:18:46,461 INSURED BY -- COVERED BY 537 00:18:46,461 --> 00:18:46,794 INSURANCE. 538 00:18:46,794 --> 00:18:48,229 AND THIS PERIOD MAY LAST A 539 00:18:48,229 --> 00:18:50,098 NUMBER OF YEARS. 540 00:18:50,098 --> 00:18:52,400 BUT THERE ARE SOME OTHER CASES 541 00:18:52,400 --> 00:18:55,670 THAT MAY ACTUALLY EXPAND FOR THE 542 00:18:55,670 --> 00:18:56,204 PATIENT'S LIFETIME. 543 00:18:56,204 --> 00:18:57,538 FOR EXAMPLE, SOME DEVICES NEVER 544 00:18:57,538 --> 00:18:59,841 GET FDA APPROVAL, OR IN SOME 545 00:18:59,841 --> 00:19:02,043 CASES, EVEN IF A DEVICE IS FDA 546 00:19:02,043 --> 00:19:03,311 APPROVED, THE COMPANY GOES OUT 547 00:19:03,311 --> 00:19:06,214 OF BUSINESS OR IT'S A 548 00:19:06,214 --> 00:19:07,615 COMMERCIALLY UNVIABLE PRODUCT OR 549 00:19:07,615 --> 00:19:08,282 SOMETHING ELSE HAPPENS AND 550 00:19:08,282 --> 00:19:09,484 PATIENTS MAY LOSE ACCESS TO THE 551 00:19:09,484 --> 00:19:11,986 CARE THAT THEY NEED. 552 00:19:11,986 --> 00:19:14,589 SO WHAT ARE THE NEEDS THAT 553 00:19:14,589 --> 00:19:15,723 PATIENTS HAVE AFTER THESE TYPES 554 00:19:15,723 --> 00:19:17,658 OF TRIALS? 555 00:19:17,658 --> 00:19:21,429 SO IT ALL STARTS WITH AN OBVIOUS 556 00:19:21,429 --> 00:19:23,064 ONE THAT IS TO ANTICIPATE WHAT A 557 00:19:23,064 --> 00:19:24,599 PATIENT NEEDS AFTER THE TRIAL 558 00:19:24,599 --> 00:19:27,668 ENDS AND PLAN FOR IT. 559 00:19:27,668 --> 00:19:30,505 SEVERAL PLANS MAY REQUIRE 560 00:19:30,505 --> 00:19:32,673 ADVANCE PLANNING, FOR EXAMPLE, 561 00:19:32,673 --> 00:19:35,209 NEGOTIATING BETWEEN DIFFERENT 562 00:19:35,209 --> 00:19:35,543 STAKEHOLDERS. 563 00:19:35,543 --> 00:19:37,945 BUT WE UNFORTUNATELY STILL SEE 564 00:19:37,945 --> 00:19:39,514 HAPPEN THAT TRIALS WITH 565 00:19:39,514 --> 00:19:40,715 IMPLANTED DEVICES ARE STARTED 566 00:19:40,715 --> 00:19:42,016 BEFORE THE TEAM HAS REALLY 567 00:19:42,016 --> 00:19:43,551 THOUGHT ABOUT WHAT HAPPENS AFTER 568 00:19:43,551 --> 00:19:46,988 THE TRIAL ENDS, OR THEY DECIDE 569 00:19:46,988 --> 00:19:49,590 TO RELY ON AD HOC 570 00:19:49,590 --> 00:19:50,892 DECISION-MAKING, MEANING THAT 571 00:19:50,892 --> 00:19:52,560 THEY'LL DECIDE WHAT TO DO WHEN 572 00:19:52,560 --> 00:19:55,396 IT HAPPENS, WHICH CAUSES ANXIETY 573 00:19:55,396 --> 00:19:57,732 FOR PATIENTS. 574 00:19:57,732 --> 00:19:59,133 SO AFTER HEARING ABOUT PATIENTS 575 00:19:59,133 --> 00:20:01,669 WHO LOST ACCESS TO THEIR 576 00:20:01,669 --> 00:20:03,738 EXPERIMENTAL IMPLANTS, SOME 577 00:20:03,738 --> 00:20:05,606 PARTICIPANTS ARE NOW INDICATING 578 00:20:05,606 --> 00:20:06,641 THAT THEY DON'T WANT TO 579 00:20:06,641 --> 00:20:08,342 PARTICIPATE IN THESE TRIALS 580 00:20:08,342 --> 00:20:10,211 UNLESS SUFFICIENT PLAN IS IN 581 00:20:10,211 --> 00:20:13,948 PLACE FOR POST-TRIAL CARE. 582 00:20:13,948 --> 00:20:15,683 SO THIS IS PROBABLY THE LEAST 583 00:20:15,683 --> 00:20:19,220 CONTROVERSIAL THING I'LL SAY 584 00:20:19,220 --> 00:20:20,188 TODAY, WHICH IS WE SHOULD MAKE 585 00:20:20,188 --> 00:20:22,156 SURE THAT PARTICIPANTS KNOW THEY 586 00:20:22,156 --> 00:20:23,591 MIGHT NEED CARE AFTER THE TRIAL 587 00:20:23,591 --> 00:20:24,792 ENDS RELATED TO THEIR IMPLANT 588 00:20:24,792 --> 00:20:26,794 AND WHAT THEY CAN EXPECT IN 589 00:20:26,794 --> 00:20:30,164 TERMS OF ACCESS TO THIS CARE. 590 00:20:30,164 --> 00:20:31,499 SO THAT THEY CAN TAKE THIS 591 00:20:31,499 --> 00:20:32,366 INFORMATION INTO ACCOUNT WHEN 592 00:20:32,366 --> 00:20:33,434 THEY MAKE DECISIONS ABOUT 593 00:20:33,434 --> 00:20:35,770 WHETHER OR NOT TO ENROLL IN A 594 00:20:35,770 --> 00:20:36,170 TRIAL. 595 00:20:36,170 --> 00:20:39,140 WE DON'T HAVE DATA ON THE 596 00:20:39,140 --> 00:20:40,675 PROPORTION OF PATIENTS WHO ARE 597 00:20:40,675 --> 00:20:43,511 TOLD THIS TYPE OF INFORMATION, 598 00:20:43,511 --> 00:20:46,581 BUT IT SEEMS LIKE AT LEAST BASED 599 00:20:46,581 --> 00:20:48,649 ON SMALL QUALITATIVE STUDIES 600 00:20:48,649 --> 00:20:50,117 THERE'S AT LEAST A SIGNIFICANT 601 00:20:50,117 --> 00:20:51,219 PROPORTION OF PATIENTS THAT 602 00:20:51,219 --> 00:20:52,720 DON'T RECALL TALKING ABOUT THIS. 603 00:20:52,720 --> 00:20:54,155 OF COURSE, IT DOESN'T MEAN IT 604 00:20:54,155 --> 00:20:56,457 DIDN'T HAPPEN, BUT AT LEAST IT 605 00:20:56,457 --> 00:20:57,758 SUGGESTS THAT THERE'S AN 606 00:20:57,758 --> 00:20:59,093 OPPORTUNITY TO IMPROVE OUR 607 00:20:59,093 --> 00:21:00,061 INFORMED CON SEBILITY PROCESS 608 00:21:00,061 --> 00:21:02,163 RELATED TO THESE -- CONSENT 609 00:21:02,163 --> 00:21:03,364 PROCESS RELATED TO THESE 610 00:21:03,364 --> 00:21:04,565 QUESTIONS. 611 00:21:04,565 --> 00:21:04,799 OKAY. 612 00:21:04,799 --> 00:21:06,100 SO WE'VE ALREADY TALKED ABOUT 613 00:21:06,100 --> 00:21:08,069 THE FIRST CASE, PATIENTS WHO ARE 614 00:21:08,069 --> 00:21:09,570 EXPERIENCING SIGNIFICANT 615 00:21:09,570 --> 00:21:10,705 CLINICAL BENEFITS MAY WANT TO 616 00:21:10,705 --> 00:21:12,139 KEEP THE DEVICES. 617 00:21:12,139 --> 00:21:13,341 AGAIN, WE DON'T HAVE ANY 618 00:21:13,341 --> 00:21:15,376 ABSOLUTE OR RELATIVE NUMBERS 619 00:21:15,376 --> 00:21:15,643 HERE. 620 00:21:15,643 --> 00:21:17,678 WE JUST HAVE A SMALL, A COUPLE 621 00:21:17,678 --> 00:21:19,880 OF SMALL QUALITATIVE STUDIES IN 622 00:21:19,880 --> 00:21:21,515 WHICH ALMOST ALL PATIENTS WHO 623 00:21:21,515 --> 00:21:22,617 EXPERIENCE SIGNIFICANT BENEFIT 624 00:21:22,617 --> 00:21:24,285 FIT WANTED TO KEEP THE DEVICE, 625 00:21:24,285 --> 00:21:25,853 BUT WE NEED MORE INFORMATION TO 626 00:21:25,853 --> 00:21:28,155 KNOW WHICH PROPORTION THIS IS. 627 00:21:28,155 --> 00:21:29,624 THERE IS, HOWEVER, ONE OTHER 628 00:21:29,624 --> 00:21:32,260 GROUP WE HAVEN'T TALKED ABOUT 629 00:21:32,260 --> 00:21:34,462 YET, AND THAT IS IN SOME CASES 630 00:21:34,462 --> 00:21:36,097 THE RISK SHES EVEN IF THE DEVICE 631 00:21:36,097 --> 00:21:38,199 IS NOT WORKING, THE RISKS OF 632 00:21:38,199 --> 00:21:40,167 TAKING IT OUT ARE HIGHER THAN 633 00:21:40,167 --> 00:21:42,570 LEAVING IT IN PLACE BECAUSE IT 634 00:21:42,570 --> 00:21:43,304 REQUIRES ADDITIONAL BRAIN 635 00:21:43,304 --> 00:21:44,305 SURGERY AND SO ON. 636 00:21:44,305 --> 00:21:45,973 SO IN THOSE CASES, PATIENTS ALSO 637 00:21:45,973 --> 00:21:49,910 HAVE A CLINICAL INTEREST TO KEEP 638 00:21:49,910 --> 00:21:51,979 THE DEVICE. 639 00:21:51,979 --> 00:21:54,382 HOWEVER, ONCE THEY HAVE AN 640 00:21:54,382 --> 00:21:55,283 IMPLANTED, PATIENTS NEED A 641 00:21:55,283 --> 00:21:57,418 NUMBER OF DIFFERENT THINGS, 642 00:21:57,418 --> 00:21:58,853 INCLUDING POTENTIAL EMERGENCY 643 00:21:58,853 --> 00:22:00,087 CARE FOR COMPLICATIONS RELATED 644 00:22:00,087 --> 00:22:03,024 TO THE DEVICE, AS WELL AS 645 00:22:03,024 --> 00:22:04,892 ROUTINE FOLLOW-UP CARE AND 646 00:22:04,892 --> 00:22:06,294 DEVICE SUPPORT HAD AND REPAIR. 647 00:22:06,294 --> 00:22:08,696 I WANT TO HIGHLIGHT A COUPLE OF 648 00:22:08,696 --> 00:22:09,497 THINGS HERE. 649 00:22:09,497 --> 00:22:12,867 9 ACCESS TO SPECIALIZED IT 650 00:22:12,867 --> 00:22:13,200 CLINICIANS. 651 00:22:13,200 --> 00:22:14,835 IN SOME CASES, THESE DEVICES ARE 652 00:22:14,835 --> 00:22:18,205 SO NEW AND UNIQUE THAT IF A 653 00:22:18,205 --> 00:22:20,875 PATIENT, FOR EXAMPLE, NEEDS 654 00:22:20,875 --> 00:22:21,542 STIMULATION SECRETARIES CHANGED 655 00:22:21,542 --> 00:22:23,711 OR NEEDS A LEAD REPLACED OR SOME 656 00:22:23,711 --> 00:22:25,346 SORT OF SURGERY, IT'S REALLY 657 00:22:25,346 --> 00:22:27,214 ONLY THE CLINICAL TEAM, THE 658 00:22:27,214 --> 00:22:28,749 RESEARCH TEAM THAT PUT IT IN 659 00:22:28,749 --> 00:22:30,618 THAT'S WILLING TO PROVIDE 660 00:22:30,618 --> 00:22:31,719 THIS -- WILLING AND SPECIALIZED 661 00:22:31,719 --> 00:22:33,888 ENOUGH TO PROVIDE THIS CARE. 662 00:22:33,888 --> 00:22:36,290 SO THESE PATIENTS CAN BE HIGHLY 663 00:22:36,290 --> 00:22:38,592 DEPENDENT ON THE CLINICAL 664 00:22:38,592 --> 00:22:39,593 RESEARCH TEAM IN ORDER TO 665 00:22:39,593 --> 00:22:42,330 RECEIVE THE POST-TRIAL CARE. 666 00:22:42,330 --> 00:22:44,065 ANOTHER THING THAT'S GOING ON 667 00:22:44,065 --> 00:22:45,900 HERE RELATES TO HARDWARE AND 668 00:22:45,900 --> 00:22:47,268 SOFTWARE UPDATES. 669 00:22:47,268 --> 00:22:49,403 SO SOME OF THESE DEVICES ARE 670 00:22:49,403 --> 00:22:51,839 KIND OF LIKE APPLE PHONES, 671 00:22:51,839 --> 00:22:54,108 MEANING THAT THEY ARE NOT 672 00:22:54,108 --> 00:22:55,242 COMPATIBLE WITH EXISTING 673 00:22:55,242 --> 00:22:58,779 COMMERCIALLY AVAILABLE HARDWARE 674 00:22:58,779 --> 00:23:00,114 PIECES, SO THEY MIGHT HAVE 675 00:23:00,114 --> 00:23:01,415 UNIQUE LEADS, THEY MIGHT HAVE 676 00:23:01,415 --> 00:23:03,017 UNIQUE BATTERIES, THEY MIGHT 677 00:23:03,017 --> 00:23:04,352 HAVE UNIQUE ALL SORTS OF 678 00:23:04,352 --> 00:23:05,886 COMPONENTS AND SOFTWARE, WHICH 679 00:23:05,886 --> 00:23:08,389 AGAIN MAKES THESE PATIENTS 680 00:23:08,389 --> 00:23:09,623 UNIQUELY DEPENDENT ON IN THIS 681 00:23:09,623 --> 00:23:12,026 CASE THE COMPANY TO CONTINUE TO 682 00:23:12,026 --> 00:23:14,962 SUPPORT THIS HARDWARE OR 683 00:23:14,962 --> 00:23:17,365 SOFTWARE. 684 00:23:17,365 --> 00:23:20,568 OF COURSE, CLINICAL TEAMS MAY 685 00:23:20,568 --> 00:23:24,071 RETIRE OR CHANGE RESEARCH FOCUS, 686 00:23:24,071 --> 00:23:26,073 DEVICE COMPANIES, ESPECIALLY IF 687 00:23:26,073 --> 00:23:28,476 IT'S STARTUPS, THEY MIGHT FOLD, 688 00:23:28,476 --> 00:23:31,979 A PRODUCT MIGHT BE COMMERCIALLY 689 00:23:31,979 --> 00:23:32,947 UNVIABLE, SO THINGS CAN HAPPEN 690 00:23:32,947 --> 00:23:34,715 THERE, AND THIS IS OFTEN WHERE 691 00:23:34,715 --> 00:23:38,686 WE'VE SEEN PROBLEMS OCCUR. 692 00:23:38,686 --> 00:23:41,622 OF THE THINGS ON THIS LIST, ONLY 693 00:23:41,622 --> 00:23:43,791 EMERGENCY CARE FOR COMPLICATIONS 694 00:23:43,791 --> 00:23:45,793 OF THE DEVICE IS USUALLY 695 00:23:45,793 --> 00:23:48,963 PROVIDED BY THE PATIENT'S 696 00:23:48,963 --> 00:23:49,830 INSURANCE TION AS WELL AS 697 00:23:49,830 --> 00:23:53,033 FOLLOW-UP VISITS ARE USUALLY 698 00:23:53,033 --> 00:23:55,436 COVERED BY INSURANCE FOR 699 00:23:55,436 --> 00:23:57,405 PATIENTS, IF THIS WAS COVERED 700 00:23:57,405 --> 00:23:58,606 FOR THE CLINICAL INDICATION THEY 701 00:23:58,606 --> 00:23:59,607 HAVE TO START WITH. 702 00:23:59,607 --> 00:24:01,041 THE OTHER THINGS ARE NOT 703 00:24:01,041 --> 00:24:02,576 NECESSARILY STRUCTURALLY COVERED 704 00:24:02,576 --> 00:24:04,545 BY INSURANCE OR ANY OF THE OTHER 705 00:24:04,545 --> 00:24:07,948 STAKEHOLDERS INVOLVED IN THESE 706 00:24:07,948 --> 00:24:09,383 TRIALS. 707 00:24:09,383 --> 00:24:09,817 OKAY. 708 00:24:09,817 --> 00:24:10,985 SO WE'VE LEARNED FROM PATIENTS 709 00:24:10,985 --> 00:24:12,753 THAT THERE WAS SOME OTHER THINGS 710 00:24:12,753 --> 00:24:14,822 THEY MAY NEED OR AT LEAST WOULD 711 00:24:14,822 --> 00:24:16,891 BENEFIT THEM AFTER A TRIAL ENDS. 712 00:24:16,891 --> 00:24:18,993 FOR EXAMPLE, THE HEALTHCARE 713 00:24:18,993 --> 00:24:22,830 SYSTEM CAN BE QUITE COMPLICATED. 714 00:24:22,830 --> 00:24:24,031 ASSISTANCE IN COORDINATING CARE 715 00:24:24,031 --> 00:24:25,766 CAN HELP THEM, FOR EXAMPLE, GET 716 00:24:25,766 --> 00:24:27,067 THE THINGS COVERED THAT WOULD BE 717 00:24:27,067 --> 00:24:29,036 COVERED FOR THEM IF THEY 718 00:24:29,036 --> 00:24:30,204 PROVIDED NECESSARY PAPERWORK AND 719 00:24:30,204 --> 00:24:32,673 SO ON. 720 00:24:32,673 --> 00:24:34,208 THERE'S ALSO THE FACT THAT SOME 721 00:24:34,208 --> 00:24:35,543 OF THESE DEVICES HAVE 722 00:24:35,543 --> 00:24:37,845 IMPLICATIONS FOR OTHER TYPES OF 723 00:24:37,845 --> 00:24:38,045 CARE. 724 00:24:38,045 --> 00:24:40,815 FOR EXAMPLE, SOME IMPLANTS ARE 725 00:24:40,815 --> 00:24:42,216 COMPATIBLE WITH MRI. 726 00:24:42,216 --> 00:24:45,186 OTHER ONES ARE NOT, FOR CLINICAL 727 00:24:45,186 --> 00:24:47,688 PROVIDER IT'S USEFUL TO TELL THE 728 00:24:47,688 --> 00:24:47,988 DIFFERENCE. 729 00:24:47,988 --> 00:24:50,891 SO THERE'S THIS NEED FOR 730 00:24:50,891 --> 00:24:51,525 CLINICALLY RELEVANT INFORMATION 731 00:24:51,525 --> 00:24:53,327 ABOUT THE DEVICE TO BE 732 00:24:53,327 --> 00:24:54,695 ACCESSIBLE FOR CLINICIANS 733 00:24:54,695 --> 00:24:56,163 OUTSIDE THE TEAM AND BECAUSE 734 00:24:56,163 --> 00:24:57,364 RESEARCH RECORDS ARE NOT 735 00:24:57,364 --> 00:24:59,333 NECESSARILY PUT INTO A MEDICAL 736 00:24:59,333 --> 00:25:01,502 RECORD, THIS IS NOT APPLES THE 737 00:25:01,502 --> 00:25:03,037 CASE CURRENTLY. 738 00:25:03,037 --> 00:25:04,805 -- THIS IS NOT ALWAYS THE CASE 739 00:25:04,805 --> 00:25:05,072 CURRENTLY. 740 00:25:05,072 --> 00:25:06,774 I ALSO WANT TO EMPHASIZE THE 741 00:25:06,774 --> 00:25:08,209 LAST POINT HERE, WHICH IS MENTAL 742 00:25:08,209 --> 00:25:11,812 HEALTH SERVICES RELATED TO TRIAL 743 00:25:11,812 --> 00:25:12,813 PARTICIPATION. 744 00:25:12,813 --> 00:25:14,482 SO WE KNOW THAT PARTICIPATING IN 745 00:25:14,482 --> 00:25:17,852 THESE TRIALS AND THEN NOT 746 00:25:17,852 --> 00:25:19,286 BENEFITING OR DISCONTINUING TO 747 00:25:19,286 --> 00:25:22,122 BENEFIT FROM A DEVICE OR EVEN IN 748 00:25:22,122 --> 00:25:26,627 CERTAIN NONTHERAPEUTIC TRIALS 749 00:25:26,627 --> 00:25:28,362 ENGAGEMENT IN THE RESEARCH CAN 750 00:25:28,362 --> 00:25:30,764 HAVE A LARGE EMOTIONAL IMPACT 751 00:25:30,764 --> 00:25:32,967 AND LARGE IMPACT ON THE MENTAL 752 00:25:32,967 --> 00:25:34,068 WELL-BEING OF PATIENTS, AND WE 753 00:25:34,068 --> 00:25:36,470 THINK THAT ESPECIALLY WHEN THEY 754 00:25:36,470 --> 00:25:38,339 TRANSITION OUT OF A TRIAL OR 755 00:25:38,339 --> 00:25:43,043 TRANSITION OUT OF SOMETHING, A 756 00:25:43,043 --> 00:25:47,548 DEVICE, THEY MAY NOT BENEFIT 757 00:25:47,548 --> 00:25:48,415 FROM MENTAL HEALTH SERVICES 758 00:25:48,415 --> 00:25:50,050 RELATED TO THEIR TRIAL 759 00:25:50,050 --> 00:25:51,785 PARTICIPATION, SO DON'T GET ME 760 00:25:51,785 --> 00:25:55,422 LONG, THERE'S A LOT OF RESEARCH 761 00:25:55,422 --> 00:25:56,957 THINGS OUT THERE THAT ARE AMAZE 762 00:25:56,957 --> 00:25:58,058 AND GO CAN DO EVERYTHING THEY 763 00:25:58,058 --> 00:26:00,361 CAN TO HELP THEIR PATIENTS OUT 764 00:26:00,361 --> 00:26:02,096 THERE AFTER THE TRIAL, A LOT OF 765 00:26:02,096 --> 00:26:02,329 TEAMS. 766 00:26:02,329 --> 00:26:03,163 BUT WE HAVE TO RECOGNIZE THAT 767 00:26:03,163 --> 00:26:04,265 THERE ARE LIMITATIONS IN TERMS 768 00:26:04,265 --> 00:26:06,267 OF MISSION AND RESOURCES THAT 769 00:26:06,267 --> 00:26:07,334 THE ORGANIZATIONS WHO ARE 770 00:26:07,334 --> 00:26:09,403 INVOLVED IN THIS RESEARCH HAVE. 771 00:26:09,403 --> 00:26:12,473 FOR EXAMPLE, NIH HAS NO LEGAL 772 00:26:12,473 --> 00:26:13,908 AUTHORITY TO TRANSFER FUNDS ONCE 773 00:26:13,908 --> 00:26:17,945 A TRIAL IS NO LONGER ACTIVE. 774 00:26:17,945 --> 00:26:19,280 CMS IS BOUND BY COVERING THE 775 00:26:19,280 --> 00:26:20,948 TYPES OF CARE THAT ARE INDICATED 776 00:26:20,948 --> 00:26:22,883 BY LAW. 777 00:26:22,883 --> 00:26:24,418 DEVICE COMPANIES MAY SIMPLY BE 778 00:26:24,418 --> 00:26:27,788 UNABLE TO CONTINUE TO MAINTAIN A 779 00:26:27,788 --> 00:26:28,489 VIABLE PRODUCT. 780 00:26:28,489 --> 00:26:30,324 AS A RESULT, MOST OF THE CURRENT 781 00:26:30,324 --> 00:26:31,959 PLANS ARE KIND OF LIKE A 782 00:26:31,959 --> 00:26:34,361 PATCHWORK OF CONDITIONAL 783 00:26:34,361 --> 00:26:35,663 ASSURANCES. 784 00:26:35,663 --> 00:26:38,098 IT DOESN'T HELP THAT WITHIN AND 785 00:26:38,098 --> 00:26:39,300 BETWEEN INVOLVED RESEARCH 786 00:26:39,300 --> 00:26:40,935 INSTITUTIONS, FUNDERS, DEVICE 787 00:26:40,935 --> 00:26:42,136 MANUFACTURERS, INSURANCING 788 00:26:42,136 --> 00:26:44,438 RESEARCHERS, PATIENTS AND 789 00:26:44,438 --> 00:26:46,073 CAREGIVERS, THERE MAY BE 790 00:26:46,073 --> 00:26:47,374 DISAGREEMENT ABOUT WHAT TYPE OF 791 00:26:47,374 --> 00:26:51,312 PLAN IS SUFFICIENT OR 792 00:26:51,312 --> 00:26:52,646 APPROPRIATE AND HOW 793 00:26:52,646 --> 00:26:55,282 RESPONSIBILITY SHOULD BE DIVIDE. 794 00:26:55,282 --> 00:26:56,917 NOW, OF COURSE THE EXISTENCE OF 795 00:26:56,917 --> 00:26:59,219 AN UNMET CLINICAL NEED DOESN'T 796 00:26:59,219 --> 00:27:01,288 IMPLY A MORAL RESPONSIBILITY TO 797 00:27:01,288 --> 00:27:02,489 PROVIDE CARE. 798 00:27:02,489 --> 00:27:05,125 IN FACT, MANY CLINICAL NEEDS ARE 799 00:27:05,125 --> 00:27:06,894 UNFORTUNATELY UNMET IN THIS 800 00:27:06,894 --> 00:27:08,629 COUNTRY, WHICH LEADS US TO A 801 00:27:08,629 --> 00:27:09,830 NORMATIVE QUESTION, THAT IS, 802 00:27:09,830 --> 00:27:11,999 WHAT RESPONSIBILITIES, IF ANY, 803 00:27:11,999 --> 00:27:13,100 DO PROFESSIONAL STAKEHOLDERS 804 00:27:13,100 --> 00:27:14,635 HAVE TO FACILITATE OR PROVIDE 805 00:27:14,635 --> 00:27:16,637 THIS CARE? 806 00:27:16,637 --> 00:27:19,373 AND IT'S POSSIBLE I'LL COME OUT 807 00:27:19,373 --> 00:27:20,474 SOMEWHERE DIFFERENT THAN JOE 808 00:27:20,474 --> 00:27:21,442 HERE, I DON'T KNOW WHAT HE SAID 809 00:27:21,442 --> 00:27:24,244 LAST WEEK, BUT BY WAY OF 810 00:27:24,244 --> 00:27:25,412 REMINDER IN THAT THERE ARE 811 00:27:25,412 --> 00:27:27,047 LARGER DEBATES ABOUT POST TRIAL 812 00:27:27,047 --> 00:27:28,482 CARE, MOST OF WHICH HAVE FOCUSED 813 00:27:28,482 --> 00:27:30,451 ON DRUGS, A LOT OF WHICH HAVE 814 00:27:30,451 --> 00:27:32,086 FOCUSED ON HIV AND A LOT OF 815 00:27:32,086 --> 00:27:34,088 WHICH HAS FOCUSED ON THE CONTEXT 816 00:27:34,088 --> 00:27:35,322 OF INTERNATIONAL RESEARCH. 817 00:27:35,322 --> 00:27:37,458 THERE ARE NO REGULATORY OR LEGAL 818 00:27:37,458 --> 00:27:39,460 REQUIREMENTS TO PROVIDE THIS 819 00:27:39,460 --> 00:27:41,095 CARE, BUT THERE HAVE BEEN 820 00:27:41,095 --> 00:27:42,630 LONG-STANDING ETHICAL DEBATES 821 00:27:42,630 --> 00:27:48,002 ABOUT WHAT RESPONSIBILITIES WE 822 00:27:48,002 --> 00:27:48,435 HAVE. 823 00:27:48,435 --> 00:27:49,970 SO HERE ARE WHAT I TAKE TO BE 824 00:27:49,970 --> 00:27:53,273 THE MAIN ARGUMENTS FOR SOME 825 00:27:53,273 --> 00:27:54,041 POST-TRIAL RESPONSIBILITIES. 826 00:27:54,041 --> 00:27:56,944 SO THIS INCLUDES FIRST, IF 827 00:27:56,944 --> 00:27:58,312 YOU'RE A PROFESSIONAL 828 00:27:58,312 --> 00:27:59,847 STAKEHOLDER SNROSTLED A TRIAL 829 00:27:59,847 --> 00:28:01,248 THAT'S -- INVOLVED IN A TRIAL 830 00:28:01,248 --> 00:28:02,916 THAT'S IMPLANTING AN 831 00:28:02,916 --> 00:28:03,684 EXPERIMENTAL DEVICE IN 832 00:28:03,684 --> 00:28:04,885 SOMEBODY'S BRAIN, YOU MAY HAVE 833 00:28:04,885 --> 00:28:06,420 SOME RESPONSIBILITY TO HELP 834 00:28:06,420 --> 00:28:08,589 THESE PATIENTS PREVENT OR 835 00:28:08,589 --> 00:28:09,590 AMELIORATE ANY HARMS THAT MAY 836 00:28:09,590 --> 00:28:10,658 OCCUR TO THEM AS A CONSEQUENCE 837 00:28:10,658 --> 00:28:13,527 OF THIS RESEARCH PARTICIPATION. 838 00:28:13,527 --> 00:28:17,898 WE CALL THIS NONMALEFICENCE. 839 00:28:17,898 --> 00:28:19,667 SIMILARLY, YOU MAY HAVE SOME 840 00:28:19,667 --> 00:28:23,137 RESPONSIBILITY TO HELP ADVANCE 841 00:28:23,137 --> 00:28:28,542 PATIENTS' INTERESTS, B HE 842 00:28:28,542 --> 00:28:29,843 NEFICENCE, SOME EXPRESS THIS 843 00:28:29,843 --> 00:28:30,978 ARGUMENT BY SAYING IT WOULD BE 844 00:28:30,978 --> 00:28:33,213 KIND OF CRUEL TO GIVE A GUY SO 845 00:28:33,213 --> 00:28:34,915 MUCH OF HIS LIFE BACK AND THEN 846 00:28:34,915 --> 00:28:36,650 SNATCH IT AWAY, JUST BECAUSE OF 847 00:28:36,650 --> 00:28:38,652 A FEW PENNIES, ALTHOUGH IT'S 848 00:28:38,652 --> 00:28:41,588 MORE THAN A FEW PENNIES. 849 00:28:41,588 --> 00:28:44,858 IN GENERAL, I THINK 850 00:28:44,858 --> 00:28:46,627 NONMALEFICENCE IS ONE OF THE 851 00:28:46,627 --> 00:28:48,362 STRONGEST ARGUMENTS FOR 852 00:28:48,362 --> 00:28:49,697 POST-TRIAL RESPONSIBILITIES. 853 00:28:49,697 --> 00:28:50,230 OKAY. 854 00:28:50,230 --> 00:28:53,834 SECOND, SOME ARGUE THAT WE HAVE 855 00:28:53,834 --> 00:28:54,635 POST-TRIAL RESPONSIBILITIES 856 00:28:54,635 --> 00:28:56,704 GARNERED IN RECIPROCITY, THAT 857 00:28:56,704 --> 00:28:58,872 IS, WE SHOULD PROVIDE POST-TRIAL 858 00:28:58,872 --> 00:28:59,973 CARE IN RETURN FOR THE BURDENS 859 00:28:59,973 --> 00:29:02,743 AND RISKS THE PATIENT UNDERWENT 860 00:29:02,743 --> 00:29:05,012 TO ADVANCE THE SCIENCE. 861 00:29:05,012 --> 00:29:06,747 SO FOR EXAMPLE, THIS PARTICIPANT 862 00:29:06,747 --> 00:29:08,515 EXPRESSES THAT VIEW THAT IS IT 863 00:29:08,515 --> 00:29:11,452 FELT LIKE HEY, LOOK, I LIKE YOUR 864 00:29:11,452 --> 00:29:12,986 I AM PREGNANTINGS IN MY 865 00:29:12,986 --> 00:29:13,987 BRAIRNTION I'M WALKING AROUND 866 00:29:13,987 --> 00:29:16,490 WITH THIS -- MY BRAIN, I'M 867 00:29:16,490 --> 00:29:17,591 WALKING AROUND WITH THIS, YOU 868 00:29:17,591 --> 00:29:18,592 HAVE SOME RESPONSIBILITY TO, YOU 869 00:29:18,592 --> 00:29:21,195 KNOW, LOOK AFTER ME. 870 00:29:21,195 --> 00:29:21,628 OKAY. 871 00:29:21,628 --> 00:29:25,799 NOW, SOME PEOPLE ARGUE FOR 872 00:29:25,799 --> 00:29:26,366 POST-TRIAL RESPONSIBILITIES 873 00:29:26,366 --> 00:29:27,334 RESPECT FOR PERSONS WRRKS THE 874 00:29:27,334 --> 00:29:29,002 CONCERN IS THAT NOT PROVIDING 875 00:29:29,002 --> 00:29:30,504 THIS TYPE OF CARE COULD BE 876 00:29:30,504 --> 00:29:32,506 CONSTRUED AS USING A PARTICIPANT 877 00:29:32,506 --> 00:29:34,208 AS A MEANS TOWARDS AN END. 878 00:29:34,208 --> 00:29:36,009 AND FINALLY, SOME HAVE ARGUED 879 00:29:36,009 --> 00:29:39,246 THAT THERE ARE SOME 880 00:29:39,246 --> 00:29:40,581 RESPONSIBILITIES GROUNDED IN THE 881 00:29:40,581 --> 00:29:41,582 RELATIONSHIP BETWEEN THE 882 00:29:41,582 --> 00:29:45,419 RESEARCHER AND THE PARTICIPANT 883 00:29:45,419 --> 00:29:46,820 THAT CREATES SOME SORT OF DUTIES 884 00:29:46,820 --> 00:29:48,355 EVEN AFTER A TRIAL ENDS, 885 00:29:48,355 --> 00:29:50,424 REFERRED TO AS A PARTIAL 886 00:29:50,424 --> 00:29:52,659 ENTRUSTMENT RELATIONSHIP. 887 00:29:52,659 --> 00:29:54,628 BUT THERE ARE ALSO SOME REASONS 888 00:29:54,628 --> 00:29:55,963 TO THINK WHY THESE 889 00:29:55,963 --> 00:29:57,798 RESPONSIBILITIES HAVE LIMITS, 890 00:29:57,798 --> 00:29:59,333 AND THEY PRIMARILY COME DOWN TO 891 00:29:59,333 --> 00:30:01,735 OPPORTUNITY COSTS, TO SUPPORT 892 00:30:01,735 --> 00:30:04,605 POST-TRIAL CARE FOR 893 00:30:04,605 --> 00:30:06,006 PARTICIPANTS, WE MIGHT HAVE TO 894 00:30:06,006 --> 00:30:08,108 FOREGO OTHER THINGS, SUCH AS 895 00:30:08,108 --> 00:30:08,976 IMPLEMENT FURTHER TRIALS TO 896 00:30:08,976 --> 00:30:09,943 BENEFIT THE PATIENT POPULATION 897 00:30:09,943 --> 00:30:11,879 AT LARGE, ASSUMING THAT THIS IS 898 00:30:11,879 --> 00:30:12,846 WHAT THE MONEY WOULD OTHERWISE 899 00:30:12,846 --> 00:30:14,982 BE SPENT ON. 900 00:30:14,982 --> 00:30:17,751 SO AT THE CORE, THERE'S THIS 901 00:30:17,751 --> 00:30:19,453 TENSION BETWEEN THE INTERESTS OF 902 00:30:19,453 --> 00:30:22,856 FORMER PARTICIPANTS AND THE 903 00:30:22,856 --> 00:30:23,857 INTERESTS. 904 00:30:23,857 --> 00:30:25,159 SPEED OF THE RESEARCH AND 905 00:30:25,159 --> 00:30:27,127 ADVANCING THE BEEN FACILITIES OF 906 00:30:27,127 --> 00:30:28,228 THE POPULATION -- AND THE 907 00:30:28,228 --> 00:30:29,296 BENEFITS OF THE POPULATION AT 908 00:30:29,296 --> 00:30:29,496 LARGE. 909 00:30:29,496 --> 00:30:32,166 THIS IS ACTUAL A REALLY FAMILIAR 910 00:30:32,166 --> 00:30:33,367 TENSION AND RESEARCH ETHICS IN 911 00:30:33,367 --> 00:30:35,502 GENERAL, AND I HOPE TO CONVINCE 912 00:30:35,502 --> 00:30:36,904 YOU THAT WHEREVER WE PUT THIS 913 00:30:36,904 --> 00:30:38,205 BALANCE, IT SHOULD GO A LITTLE 914 00:30:38,205 --> 00:30:39,807 BIT MORE TOWARDS THE INTERESTS 915 00:30:39,807 --> 00:30:40,974 OF THE PARTICIPANTS IN THESE 916 00:30:40,974 --> 00:30:43,143 TYPES OF TRIALS. 917 00:30:43,143 --> 00:30:45,445 WITHIN LIMITS. 918 00:30:45,445 --> 00:30:48,515 SO THE GENERAL CONSENSUS OF 919 00:30:48,515 --> 00:30:49,516 POST-TRIAL RESPONSIBILITIES WITH 920 00:30:49,516 --> 00:30:50,918 SOMETHING LIKE THIS, WE HAVE 921 00:30:50,918 --> 00:30:52,553 SOME RESPONSIBILITIES, THEY HAVE 922 00:30:52,553 --> 00:30:54,087 LIMITS, AND WHATEVER THEY ARE, 923 00:30:54,087 --> 00:30:55,422 THEY'RE SHARED AMONG THE 924 00:30:55,422 --> 00:30:56,723 STAKEHOLDERS WHO PARTICIPATE IN 925 00:30:56,723 --> 00:30:58,559 THESE TRIALS, SONLT JUST THE 926 00:30:58,559 --> 00:30:59,927 RESEARCHER, BUT ALSO THE FUNDER 927 00:30:59,927 --> 00:31:03,664 AND THE COMPANY AND ALL OF THIS. 928 00:31:03,664 --> 00:31:05,532 AGAIN, I'M NOT SURE EXACTLY WHAT 929 00:31:05,532 --> 00:31:07,835 JOE SAID, BUT THERE'S BEEN SOME 930 00:31:07,835 --> 00:31:09,002 CHALLENGES IN OPERATIONALIZING 931 00:31:09,002 --> 00:31:10,137 AND SPECIFYING THIS, BECAUSE 932 00:31:10,137 --> 00:31:12,206 THIS IS PRETTY HIGH LEVEL, IT'S 933 00:31:12,206 --> 00:31:14,074 HARD TO KNOW WHAT EXACTLY TO DO 934 00:31:14,074 --> 00:31:15,642 IN A SPECIFIC CASE BASED ON THIS 935 00:31:15,642 --> 00:31:18,478 GUIDANCE, AND SOME GROUPS LIKE 936 00:31:18,478 --> 00:31:20,013 MRCT HAVE WORKED ON THE 937 00:31:20,013 --> 00:31:22,850 SPECIFICATION, BUT THEY TEND TO 938 00:31:22,850 --> 00:31:23,884 PURPOSEFULLY EXCLUDE DEVICES. 939 00:31:23,884 --> 00:31:26,453 AND I DO THINK THAT DEVICES, 940 00:31:26,453 --> 00:31:27,754 ESPECIALLY I AM PLANLTDED 941 00:31:27,754 --> 00:31:29,323 DEVICES, ARE KIND OF A UNIQUE 942 00:31:29,323 --> 00:31:31,091 CASE IN THIS CONTEXT. 943 00:31:31,091 --> 00:31:33,994 SO WHY WOULD I SAY THAT? 944 00:31:33,994 --> 00:31:34,194 OKAY. 945 00:31:34,194 --> 00:31:38,498 SO I THINK IN GENERAL, THE 946 00:31:38,498 --> 00:31:41,034 AMOUNT OF RESPONSIBILITIES WE 947 00:31:41,034 --> 00:31:43,070 HAVE KIND OF DEPEND ON THE 948 00:31:43,070 --> 00:31:45,038 CONTEXT OF THE TRIAL BECAUSE 949 00:31:45,038 --> 00:31:47,140 THESE ARG THUMENTS WE JUST 950 00:31:47,140 --> 00:31:48,008 DISCUSSED -- ARG THUMENTS WE 951 00:31:48,008 --> 00:31:49,643 JUST DISCUSSED HAVE MORE 952 00:31:49,643 --> 00:31:52,346 WEIGHTED IN CERTAIN CONTEXTS. 953 00:31:52,346 --> 00:31:56,149 FOR EXAMPLE, BENEFICENCE AND 954 00:31:56,149 --> 00:31:58,218 NONMALEFICENCE HAVE MUCH MORE 955 00:31:58,218 --> 00:31:59,753 WEIGHT IN THE INTERESTS OF 956 00:31:59,753 --> 00:32:01,088 PATIENTS RECEIVING THIS CARE IS 957 00:32:01,088 --> 00:32:01,321 HIGHER. 958 00:32:01,321 --> 00:32:02,789 IN THE CASE OF NEURAL IMPLANTS I 959 00:32:02,789 --> 00:32:04,024 WOULD SAY THESE ARGUMENTS HAVE 960 00:32:04,024 --> 00:32:05,425 QUITE SOME REACH, FIRST BECAUSE 961 00:32:05,425 --> 00:32:07,494 THESE ARE TREATMENT-RESISTANT 962 00:32:07,494 --> 00:32:08,262 PATIENTS WITH SIGNIFICANT 963 00:32:08,262 --> 00:32:11,331 BURDENS OF DISEASE, SO THEIR 964 00:32:11,331 --> 00:32:12,332 BENEFICENCE-BASED CLAIMS CAN BE 965 00:32:12,332 --> 00:32:14,868 QUITE HIGH. 966 00:32:14,868 --> 00:32:17,504 ALSO, NONMALEFICENCE IN THIS 967 00:32:17,504 --> 00:32:18,605 CASE, OBVIOUSLY HAVING A 968 00:32:18,605 --> 00:32:21,875 COMPLICATION RELATED TO A BRAIN 969 00:32:21,875 --> 00:32:24,077 DEVICE CAN HAVE A DETRIMENTAL 970 00:32:24,077 --> 00:32:27,047 IMPACT ON YOUR HEALTH, AND I 971 00:32:27,047 --> 00:32:28,682 THINK DEVICES ARE KIND OF 972 00:32:28,682 --> 00:32:30,017 DIFFERENT THAN PHARMACEUTICALS 973 00:32:30,017 --> 00:32:33,053 IN TERMS OF NONMALEFICENCE IN 974 00:32:33,053 --> 00:32:34,588 THE SENSE THAT FOR DRUGS, IF YOU 975 00:32:34,588 --> 00:32:36,423 KEEP ON USING THEM AFTER THE 976 00:32:36,423 --> 00:32:38,091 TRIAL ENDS, YOU CAN HAVE A 977 00:32:38,091 --> 00:32:41,128 COMPLICATION AND THEN YOU HAVE A 978 00:32:41,128 --> 00:32:41,595 NONMALEFICENCE-BASED 979 00:32:41,595 --> 00:32:43,897 RESPONSIBILITY TO TAKE CARE OF 980 00:32:43,897 --> 00:32:44,097 THAT. 981 00:32:44,097 --> 00:32:46,533 IN THE CASE OF IMPLANTS, YOU CAN 982 00:32:46,533 --> 00:32:48,402 HAVE A COMPLICATION FROM AN I AM 983 00:32:48,402 --> 00:32:50,604 PLABT YOU RECEIVED TWENTY YEARS 984 00:32:50,604 --> 00:32:52,205 AGO -- FROM AN IMPLANT YOU 985 00:32:52,205 --> 00:32:53,440 RECEIVED TWENTY YEARS AGO, 986 00:32:53,440 --> 00:32:53,774 RIGHT? 987 00:32:53,774 --> 00:32:56,810 BUT ALSO EX-PLANTING AN IMPLANT 988 00:32:56,810 --> 00:32:57,477 ENTAILS RISKS. 989 00:32:57,477 --> 00:32:59,980 SO IN THE CASE OF IMPLANTS, 990 00:32:59,980 --> 00:33:01,415 NONMALEFICENCE ALSO PROVIDES AN 991 00:33:01,415 --> 00:33:03,850 ARGUMENT FOR KEEPING THE DEVICE, 992 00:33:03,850 --> 00:33:04,918 AS WELL AS PROVIDE MORE WEIGHT 993 00:33:04,918 --> 00:33:09,289 AFTER THE TRIAL ENDS. 994 00:33:09,289 --> 00:33:09,957 OKAY. 995 00:33:09,957 --> 00:33:10,924 RECIPROCITY TENDS TO HAVE MORE 996 00:33:10,924 --> 00:33:12,225 WEIGHT FOR TRIALS WITH HIGHER 997 00:33:12,225 --> 00:33:14,428 RISKS AND BURDENS, AGAIN, I TOOK 998 00:33:14,428 --> 00:33:15,595 THIS TO BE THE CASE. 999 00:33:15,595 --> 00:33:18,732 SOME OF THESE ESPECIALLY BC I 1000 00:33:18,732 --> 00:33:20,267 TRIALS, THEY INVOLVE NOT JUST 1001 00:33:20,267 --> 00:33:22,336 BRAIN SURGERY BUT ONE OR TWO 1002 00:33:22,336 --> 00:33:23,770 YEARS OF COMING INTO THE CLINIC 1003 00:33:23,770 --> 00:33:25,305 TO TRAIN WITH THE DEVICE FOR 1004 00:33:25,305 --> 00:33:26,940 MANY HOURS A WEEK. 1005 00:33:26,940 --> 00:33:30,210 THESE ARE LIKE REALLY 1006 00:33:30,210 --> 00:33:31,311 SIGNIFICANT BURDENS OF THE 1007 00:33:31,311 --> 00:33:35,382 TRIAL, SO TO SAY. 1008 00:33:35,382 --> 00:33:37,217 RESPECT FOR PERSONS, MORE WEIGHT 1009 00:33:37,217 --> 00:33:38,352 IF PATIENTS LACK ALTHOUGH 1010 00:33:38,352 --> 00:33:39,519 TIFERS, AGAIN, THESE ARE 1011 00:33:39,519 --> 00:33:40,787 TREATMENT VISITS IN PATIENTS. 1012 00:33:40,787 --> 00:33:42,489 AND THE RELATIONSHIP-BASED 1013 00:33:42,489 --> 00:33:43,690 ARGUMENTS HAVE MORE WEIGHT FOR 1014 00:33:43,690 --> 00:33:44,891 TRIALS, AGAIN, WITH HIGH RISK 1015 00:33:44,891 --> 00:33:47,761 AND BURDENS, MORE DEPENDENCY AND 1016 00:33:47,761 --> 00:33:48,595 STRONG RELATIONSHIPS. 1017 00:33:48,595 --> 00:33:51,498 SO WHAT I'M SAYING HERE IS I 1018 00:33:51,498 --> 00:33:53,033 DON'T KNOW THAT ANYTHING IS 1019 00:33:53,033 --> 00:33:54,334 REALLY UNIQUE ABOUT NEURAL 1020 00:33:54,334 --> 00:33:55,669 DEVICES, BUT IF YOU LOOK AT 1021 00:33:55,669 --> 00:33:57,304 THESE ARGUMENTS FOR PROVIDING 1022 00:33:57,304 --> 00:33:58,705 POST TRIAL CARE, IT SEEMS THAT 1023 00:33:58,705 --> 00:34:00,807 ALL OF THEM HAVE MORE WEIGHT IN 1024 00:34:00,807 --> 00:34:03,577 THE CASES OF THESE NEURAL 1025 00:34:03,577 --> 00:34:03,844 IMPLANTS. 1026 00:34:03,844 --> 00:34:06,313 SO IN GENERAL, I THINK 1027 00:34:06,313 --> 00:34:07,647 POST-TRIAL RESPONSIBILITIES ARE 1028 00:34:07,647 --> 00:34:09,116 HIGHER IN NEURAL IMPLANT TRIALS 1029 00:34:09,116 --> 00:34:12,753 THAN IN MOST DRUG TRIALS, ON 1030 00:34:12,753 --> 00:34:12,986 AVERAGE. 1031 00:34:12,986 --> 00:34:15,389 THE ONE THING I HAVEN'T TALKED 1032 00:34:15,389 --> 00:34:17,457 ABOUT YET IS THIS LAST BULLET 1033 00:34:17,457 --> 00:34:19,459 HERE, WHICH IS THE ASSOCIATION 1034 00:34:19,459 --> 00:34:22,362 OF THE BRAIN WITH THINGS LIKE 1035 00:34:22,362 --> 00:34:26,099 IDENTITY AND PERSONALITY. 1036 00:34:26,099 --> 00:34:28,935 SO THIS MIGHT MEAN THAT BRAIN 1037 00:34:28,935 --> 00:34:30,137 IMPLANTS INCLUDING THE BENEFITS 1038 00:34:30,137 --> 00:34:32,572 AND THE RISKS HAVE MORE MEANING 1039 00:34:32,572 --> 00:34:33,140 FOR PATIENTS. 1040 00:34:33,140 --> 00:34:35,375 I THINK WE STILL NEED MORE 1041 00:34:35,375 --> 00:34:36,676 EMPIRICAL AND CONCEPTUAL 1042 00:34:36,676 --> 00:34:37,844 RESEARCH TO FIGURE OUT HOW MUCH 1043 00:34:37,844 --> 00:34:41,982 WEIGHT TO GIVE TO THIS ARGUMENT. 1044 00:34:41,982 --> 00:34:43,517 SO HOW ABOUT NEURAL IMPLANTS 1045 00:34:43,517 --> 00:34:45,052 COMPARED TO OTHER IMPLANTS? 1046 00:34:45,052 --> 00:34:47,454 WELL, I ACTUALLY THINK MANY OF 1047 00:34:47,454 --> 00:34:49,189 THE ARGUMENTS THAT GIVE MORE 1048 00:34:49,189 --> 00:34:50,624 WEIGHT TO POST-TRIAL 1049 00:34:50,624 --> 00:34:51,625 RESPONSIBILITIES FOR NEURAL 1050 00:34:51,625 --> 00:34:53,026 IMPLANTS ALSO APPLY TO CERTAIN 1051 00:34:53,026 --> 00:34:55,195 TYPES OF OTHER IMPLANTS, FOR 1052 00:34:55,195 --> 00:34:57,097 EXAMPLE, THINK ABOUT CARDIAC 1053 00:34:57,097 --> 00:34:58,532 PACEMAKERS, FOR EXAMPLE, THEY'RE 1054 00:34:58,532 --> 00:35:00,033 PROBABLY RELATIVELY SIMILAR. 1055 00:35:00,033 --> 00:35:01,802 BUT THERE ARE OTHER IMPLANTS 1056 00:35:01,802 --> 00:35:03,336 THAT MAY BE SOMEWHERE ELSE ON 1057 00:35:03,336 --> 00:35:08,275 THE SPECTRUM, LIKE, FOR EXAMPLE, 1058 00:35:08,275 --> 00:35:09,476 ANTI-CONCEPTION IMPLANTS OR 1059 00:35:09,476 --> 00:35:12,412 MAYBE CERTAIN IMPLANTS FOR 1060 00:35:12,412 --> 00:35:13,747 DIABETES THAT ARE JUST MUCH 1061 00:35:13,747 --> 00:35:15,916 LOWER RISK RS EASIER TO TAKE OUT 1062 00:35:15,916 --> 00:35:19,419 AND SO ON. 1063 00:35:19,419 --> 00:35:20,921 I DO THINK THAT NEURAL DEVICE 1064 00:35:20,921 --> 00:35:22,155 VERCH RELATIVELY IN AN EARLY 1065 00:35:22,155 --> 00:35:23,290 STAGE COMPARED TO SOME OTHER 1066 00:35:23,290 --> 00:35:25,692 FIELDS OF MEDICINE THAT USUALLY 1067 00:35:25,692 --> 00:35:27,627 HL DHAISH USE A LOT OF IMPLANTS. 1068 00:35:27,627 --> 00:35:29,196 FOR EXAMPLE, CARDIOLOGY OR 1069 00:35:29,196 --> 00:35:30,730 ORTHOPEDICS OR SOMETHING LIKE 1070 00:35:30,730 --> 00:35:32,466 THAT, WHICH CREATES MORE GAPS 1071 00:35:32,466 --> 00:35:33,333 FOR PATIENTS. 1072 00:35:33,333 --> 00:35:35,969 SO FOR EXAMPLE H THESE DEVICES 1073 00:35:35,969 --> 00:35:37,704 TEND TO BE AT A MUCH MORE EARLY 1074 00:35:37,704 --> 00:35:40,474 STAGE, WHICH MEANS THAT THEY ARE 1075 00:35:40,474 --> 00:35:43,410 NONFDA APREUFERRED FOR DIFFERENT 1076 00:35:43,410 --> 00:35:44,945 INDICATION, PATIENTS DESCROONT A 1077 00:35:44,945 --> 00:35:46,012 CLINICALLY AVAILABLE 1078 00:35:46,012 --> 00:35:47,247 ALTERNATIVE, LIKE THERE ARE MANY 1079 00:35:47,247 --> 00:35:48,648 COCHLEAR IMPLANTS, FOR EXAMPLE, 1080 00:35:48,648 --> 00:35:49,549 ALREADY ON THE MARKET, IF YOU 1081 00:35:49,549 --> 00:35:51,051 GET AN EXPERIMENTAL ONE THAT 1082 00:35:51,051 --> 00:35:52,619 DOESN'T WORK OR IT WORKS, BUT 1083 00:35:52,619 --> 00:35:54,020 YOU CAN ALSO SWITCH TO ANOTHER 1084 00:35:54,020 --> 00:35:54,888 ONE PRESUMABLY. 1085 00:35:54,888 --> 00:35:57,757 SO THAT'S NOT THE CASE FOR THESE 1086 00:35:57,757 --> 00:35:58,091 NEUROIMPLANTS. 1087 00:35:58,091 --> 00:35:58,992 ANOTHER THING THAT HAPPENED IN 1088 00:35:58,992 --> 00:36:01,361 SOME OTHER IMPLANT FIELDS LIKE 1089 00:36:01,361 --> 00:36:03,663 CARDIOLOGY IS THEY ESTABLISH 1090 00:36:03,663 --> 00:36:04,865 COMPATIBILITY STANDARDS FOR 1091 00:36:04,865 --> 00:36:05,198 HARDWARE. 1092 00:36:05,198 --> 00:36:10,137 SO WE HAVEN'T DONE THAT YET FOR 1093 00:36:10,137 --> 00:36:11,671 NEUROSCIENCE. 1094 00:36:11,671 --> 00:36:12,439 NEWBORN-IMPLANTED IMPLANTS I 1095 00:36:12,439 --> 00:36:14,441 THINK ARE A LITTLE BIT 1096 00:36:14,441 --> 00:36:14,708 DIFFERENT. 1097 00:36:14,708 --> 00:36:15,308 MANY OF THE FACTORS THAT COME 1098 00:36:15,308 --> 00:36:18,044 TOGETHER FOR OUR IMPLANTS TO 1099 00:36:18,044 --> 00:36:18,979 INCREASE THE RESPONSIBILITIES 1100 00:36:18,979 --> 00:36:22,249 ARE LESS COMMON FOR NONIMPLANTED 1101 00:36:22,249 --> 00:36:23,884 DEVICES, FOR EXAMPLE, THERE'S NO 1102 00:36:23,884 --> 00:36:25,619 IMPLANT TO TAKE OUT, MAY TARGET 1103 00:36:25,619 --> 00:36:27,487 LESS SEVERE CONDITIONS, NOT 1104 00:36:27,487 --> 00:36:29,122 NECESSARILY TREATMENT-RESISTANT 1105 00:36:29,122 --> 00:36:30,757 PATIENTS, TRIALS MAY NOT BE AS 1106 00:36:30,757 --> 00:36:30,991 RISKY. 1107 00:36:30,991 --> 00:36:32,959 SO I THINK THE NON-IMPLANTED 1108 00:36:32,959 --> 00:36:34,928 DEVICES IN TERMS OF POST-TRIAL 1109 00:36:34,928 --> 00:36:37,330 RESPONSIBILITIES MAY BE MORE 1110 00:36:37,330 --> 00:36:39,799 LIKE DRUGS, FOR EXAMPLE. 1111 00:36:39,799 --> 00:36:42,269 ON THE OTHER HAND, GENE THERAPY 1112 00:36:42,269 --> 00:36:44,171 TRIALS HAVE MORE IN COMMON WITH 1113 00:36:44,171 --> 00:36:45,772 I AM IMPLANTS, BUT THAT'S 1114 00:36:45,772 --> 00:36:46,673 ANOTHER TALK. 1115 00:36:46,673 --> 00:36:47,040 OKAY. 1116 00:36:47,040 --> 00:36:50,377 SO WE MADE A COUPLE OF 1117 00:36:50,377 --> 00:36:51,244 RECOMMENDATIONS, AND SUGGEST 1118 00:36:51,244 --> 00:36:52,579 SOME POTENTIAL STRATEGIES FOR 1119 00:36:52,579 --> 00:36:54,548 DREARING THESE NEEDS -- FOR 1120 00:36:54,548 --> 00:36:55,649 ADDRESSING THESE NEEDS. 1121 00:36:55,649 --> 00:36:57,584 I'M GOING TO GO OVER ALL OF 1122 00:36:57,584 --> 00:36:58,919 THEM, BUT BASICALLY THE BASICS 1123 00:36:58,919 --> 00:37:01,755 ARE WE THINK THOSE INVOLVED IN 1124 00:37:01,755 --> 00:37:03,056 THESE TRIALS SHOULD ANTICIPATE 1125 00:37:03,056 --> 00:37:04,491 AND PLAN FOR POST-TRIAL NEEDS 1126 00:37:04,491 --> 00:37:07,127 AND PROPERLY INFORM 1127 00:37:07,127 --> 00:37:07,460 PARTICIPANTS. 1128 00:37:07,460 --> 00:37:09,095 WILL IT MIGHT BE THE CASE THAT 1129 00:37:09,095 --> 00:37:10,297 THIS WOULD REQUIRE OR IT WOULD 1130 00:37:10,297 --> 00:37:14,000 BE HELPFUL FOR FUNDERS, FDA'S OR 1131 00:37:14,000 --> 00:37:15,902 IRBS TO RECOMMEND OR ASSESS 1132 00:37:15,902 --> 00:37:18,305 THESE PLANS FOR CARE AND/OR THE 1133 00:37:18,305 --> 00:37:20,373 DISCLOSURE GUIDANCE, AND THE 1134 00:37:20,373 --> 00:37:23,109 BRAIN INITIATIVE IS IS ALREADY 1135 00:37:23,109 --> 00:37:24,911 DOING THAT AT THIS POINTED, 1136 00:37:24,911 --> 00:37:27,280 ASKING FOR A POST-TRIAL PLAN FOR 1137 00:37:27,280 --> 00:37:29,182 SOME OF THESE FUNDING 1138 00:37:29,182 --> 00:37:29,516 OPPORTUNITIES. 1139 00:37:29,516 --> 00:37:32,352 THE INFORMED CONSENT PIECE MAY 1140 00:37:32,352 --> 00:37:34,321 BENEFIT FROM REGULATORY 1141 00:37:34,321 --> 00:37:37,157 GUIDANCE, ALTHOUGH I WILL SAY 1142 00:37:37,157 --> 00:37:39,025 THAT THE RANKS ALREADY SAY WE 1143 00:37:39,025 --> 00:37:40,327 SHOULD DISCLOSE REASONABLY 1144 00:37:40,327 --> 00:37:44,397 FORESEEABLE RISKS, BURDENS AND 1145 00:37:44,397 --> 00:37:46,132 BENEFITS, AND IN MY VIEW, THAT 1146 00:37:46,132 --> 00:37:47,734 COULD BE INTERPRETED AS 1147 00:37:47,734 --> 00:37:49,869 INCLUDING RISKS, BENEFITS AND 1148 00:37:49,869 --> 00:37:51,304 BURDENS AFTER TRIALS END. 1149 00:37:51,304 --> 00:37:52,772 IT'S NOT SPECIFIED THAT WAY IN 1150 00:37:52,772 --> 00:37:55,242 THE RANKS, IT'S NOT INTERPRETED 1151 00:37:55,242 --> 00:37:57,110 THAT WAY BROADLY, BUT I THINK 1152 00:37:57,110 --> 00:37:59,479 MAYBE WE COULD INTERPRET IT THAT 1153 00:37:59,479 --> 00:37:59,713 WAY. 1154 00:37:59,713 --> 00:38:01,047 I ALSO THINK GENERALLY IF 1155 00:38:01,047 --> 00:38:02,983 PATIENTS HAVE A STRONG CLINICAL 1156 00:38:02,983 --> 00:38:04,784 INTEREST IN KEEPING THE DEVICE, 1157 00:38:04,784 --> 00:38:06,620 WE SHOULD REALLY TRY TO MAKE 1158 00:38:06,620 --> 00:38:09,155 SURE THEY CAN. 1159 00:38:09,155 --> 00:38:10,690 AND THEN FOR PATIENTS WHO KEEP 1160 00:38:10,690 --> 00:38:12,659 AN IMPLANT, I THINK WE SHOULD DO 1161 00:38:12,659 --> 00:38:14,628 OUR BEST TO FACILITATE ACCESS TO 1162 00:38:14,628 --> 00:38:17,564 EMERGENCY AND ROUTINE CARE AND 1163 00:38:17,564 --> 00:38:19,132 MINIMIZE OUT-OF-POCKET COSTS AS 1164 00:38:19,132 --> 00:38:19,866 FAR AS POSSIBLE. 1165 00:38:19,866 --> 00:38:21,401 IF WE HAVE TO SET PRIORITIES 1166 00:38:21,401 --> 00:38:23,903 BETWEEN WHAT TYPES OF CARE WE 1167 00:38:23,903 --> 00:38:25,372 SUPPORT, I THINK WE SHOULD FOCUS 1168 00:38:25,372 --> 00:38:27,007 ON RESPONSIBILITIES THAT ARE 1169 00:38:27,007 --> 00:38:29,709 GROUNDED IN NONMA LEF 1170 00:38:29,709 --> 00:38:30,844 NONMALEFICENCE BECAUSE I 1171 00:38:30,844 --> 00:38:32,312 THINK -- NONMA LEF SINCE BECAUSE 1172 00:38:32,312 --> 00:38:35,348 I THINK THIS IS THE STRONGEST 1173 00:38:35,348 --> 00:38:36,983 RESPONSIBILITY WE HAVE TO 1174 00:38:36,983 --> 00:38:37,317 PARTICIPANTS. 1175 00:38:37,317 --> 00:38:38,718 SOME MODELS FOR SHARING THE 1176 00:38:38,718 --> 00:38:39,686 COSTS FOR DOING THIS. 1177 00:38:39,686 --> 00:38:41,755 WE ARE CURRENTLY NEGOTIATING 1178 00:38:41,755 --> 00:38:44,090 DIFFERENT PIECES, MAYBE LIKE AN 1179 00:38:44,090 --> 00:38:46,293 INSTITUTION WAIVES THE FEE FOR 1180 00:38:46,293 --> 00:38:48,461 OPERATING ROOM FOR UNINSURED 1181 00:38:48,461 --> 00:38:49,663 PATIENTS AND THE MANUFACTURER 1182 00:38:49,663 --> 00:38:51,865 DONATES FIVE BATTERIES OR 1183 00:38:51,865 --> 00:38:52,132 WHATEVER. 1184 00:38:52,132 --> 00:38:53,733 THERE'S THIS OTHER MODEL WHICH 1185 00:38:53,733 --> 00:38:55,635 WE'RE INCREASINGLY LOOKING AT, 1186 00:38:55,635 --> 00:38:57,437 WHICH IS HAD THAT STAKEHOLDERS 1187 00:38:57,437 --> 00:39:00,707 ALL PAY INTO A SPECIFIC TYPE OF 1188 00:39:00,707 --> 00:39:01,808 INSURANCE, FUND OR ESCROW OR 1189 00:39:01,808 --> 00:39:03,677 SOME SORT OF COMBINATION OF 1190 00:39:03,677 --> 00:39:05,111 FUNDS, JUST LIKE THE VACCINE 1191 00:39:05,111 --> 00:39:07,280 INJURY FUND IN SOME WAYS, THAT 1192 00:39:07,280 --> 00:39:09,049 MIGHT COVER A SMALL PROGRAM OF 1193 00:39:09,049 --> 00:39:10,283 RESEARCH OR ALL RELEVANT 1194 00:39:10,283 --> 00:39:11,885 RESEARCH SUPPORTED BY A FUNDER, 1195 00:39:11,885 --> 00:39:14,120 MANUFACTURER OR AN INSTITUTION. 1196 00:39:14,120 --> 00:39:15,655 THIS MAY HAVE THE BENEFIT THAT 1197 00:39:15,655 --> 00:39:18,158 IT REDUCES THE FINANCIAL RISKS 1198 00:39:18,158 --> 00:39:21,227 FOR ANY OF THE INDIVIDUAL 1199 00:39:21,227 --> 00:39:22,662 STAKEHOLDER INVOLVED, WHILE ALSO 1200 00:39:22,662 --> 00:39:26,266 THE UPFRONT CONTRIBUTIONS MAY 1201 00:39:26,266 --> 00:39:27,801 PROVIDE MORE STABILITY OF 1202 00:39:27,801 --> 00:39:31,404 COVERAGE FOR PATIENTS. 1203 00:39:31,404 --> 00:39:33,573 SUCH AN INSURANCE PLAN OR FUND 1204 00:39:33,573 --> 00:39:35,742 COULD BE MANAGED BY AN IMPARTIAL 1205 00:39:35,742 --> 00:39:38,411 THIRD PARTY, WHICH WOULD REQUIRE 1206 00:39:38,411 --> 00:39:41,414 CLEAR ARTICULATED COVERAGE 1207 00:39:41,414 --> 00:39:41,748 CRITERIA. 1208 00:39:41,748 --> 00:39:42,649 ANOTHER THING I THINK WE SHOULD 1209 00:39:42,649 --> 00:39:44,617 CONSIDER FOR THIS PARTICULAR 1210 00:39:44,617 --> 00:39:46,386 CONTEXT IS POLICIES OR PRACTICES 1211 00:39:46,386 --> 00:39:48,154 THAT ALLOW COVERAGE TO HEALTH 1212 00:39:48,154 --> 00:39:50,557 INSURANCE BASED ON INDIVIDUAL 1213 00:39:50,557 --> 00:39:54,160 LEVEL BENEFIT. 1214 00:39:54,160 --> 00:39:55,795 SO RIGHT NOW COVERAGE DECISIONS 1215 00:39:55,795 --> 00:39:57,430 ARE LARGELY MADE ON GROUP LEVEL 1216 00:39:57,430 --> 00:39:58,765 BENEFITS, WHICH MAKE SENSE ON A 1217 00:39:58,765 --> 00:40:00,266 POPULATION LEVEL, EXCEPT IN 1218 00:40:00,266 --> 00:40:02,569 THESE CASES WHERE THERE'S STRONG 1219 00:40:02,569 --> 00:40:04,003 EVIDENCE FOR INDIVIDUAL LEVEL 1220 00:40:04,003 --> 00:40:06,406 BENEFIT, I THINK WE MIGHT LOOK 1221 00:40:06,406 --> 00:40:07,841 INTO OPPORTUNITIES FOR INSURANCE 1222 00:40:07,841 --> 00:40:10,243 COVERAGE TOO. 1223 00:40:10,243 --> 00:40:13,179 WE SHOULD TRY TO AVOID THESE 1224 00:40:13,179 --> 00:40:14,714 CASES WHERE THESE CLINICIANS 1225 00:40:14,714 --> 00:40:16,282 WITH HARDWARE OR SOFTWARE 1226 00:40:16,282 --> 00:40:18,017 UPDATES THAT PATIENTS ARE SO 1227 00:40:18,017 --> 00:40:19,753 DEPENDENT ON FALL AWAY AND THEN 1228 00:40:19,753 --> 00:40:22,021 ARE REALLY DIFFICULT TO RESTORE. 1229 00:40:22,021 --> 00:40:23,723 FOR EXAMPLE, WE MIGHT WANT TO 1230 00:40:23,723 --> 00:40:25,725 TRAIN A NETWORK OF CLINICAL 1231 00:40:25,725 --> 00:40:27,560 SPECIALISTS CAPABLE OF PROVIDING 1232 00:40:27,560 --> 00:40:29,996 THIS CARE AND COMPANIES SHOULD 1233 00:40:29,996 --> 00:40:33,366 CONSIDER STRATEGIES TO PROTECT 1234 00:40:33,366 --> 00:40:34,801 PATIENTS AGAINST LOSING ACCESS 1235 00:40:34,801 --> 00:40:36,202 TO A REASONABLE NUMBER OF 1236 00:40:36,202 --> 00:40:39,139 HARDWARE OR SOFTWARE, LIKE SOME 1237 00:40:39,139 --> 00:40:42,442 OF THE STRATEGIES ON THIS PAGE. 1238 00:40:42,442 --> 00:40:42,776 OKAY. 1239 00:40:42,776 --> 00:40:45,945 SO THE MAIN CONCERN ABOUT 1240 00:40:45,945 --> 00:40:48,047 PROVIDING MORE POST-TRIAL CARE 1241 00:40:48,047 --> 00:40:50,016 IS UNDULY AFFECTING SCIENTIFIC 1242 00:40:50,016 --> 00:40:51,885 PROGRESS, AS WE'VE TALKED ABOUT 1243 00:40:51,885 --> 00:40:52,118 BEFORE. 1244 00:40:52,118 --> 00:40:54,421 FOR EXAMPLE, THIS MIGHT 1245 00:40:54,421 --> 00:40:55,722 DISINCENTIVIZE COMPANIES AND 1246 00:40:55,722 --> 00:40:56,589 RESEARCH INSTITUTIONS IN 1247 00:40:56,589 --> 00:40:57,991 PARTICIPATING IN THIS TYPE OF 1248 00:40:57,991 --> 00:40:59,859 RESEARCH, OR IT MIGHT MOVE SOME 1249 00:40:59,859 --> 00:41:02,262 OF THIS RESEARCH TO DIFFERENT 1250 00:41:02,262 --> 00:41:03,363 JURISDICTIONS, WHERE THERE ARE 1251 00:41:03,363 --> 00:41:05,698 LESS STRINGENT REQUIREMENTS. 1252 00:41:05,698 --> 00:41:07,834 I THINK WE SHOULD CAREFULLY 1253 00:41:07,834 --> 00:41:10,270 CONSIDER THESE POTENTIAL 1254 00:41:10,270 --> 00:41:11,271 DRAWBACKS, ESPECIALLY IN TERMS 1255 00:41:11,271 --> 00:41:14,441 OF MANDATING REQUIREMENTS, AND 1256 00:41:14,441 --> 00:41:15,542 IN DETERMINING HOW 1257 00:41:15,542 --> 00:41:16,976 RESPONSIBILITIES ARE 1258 00:41:16,976 --> 00:41:18,778 OPERATIONALIZED AND DISTRIBUTED, 1259 00:41:18,778 --> 00:41:20,747 FOR EXAMPLE, SPECIFYING LIMITS 1260 00:41:20,747 --> 00:41:23,349 AND CRITERIA FOR SUPPORTING POST 1261 00:41:23,349 --> 00:41:24,551 TRIAL CARE SEEMS VERY REASONABLE 1262 00:41:24,551 --> 00:41:25,652 TO ME. 1263 00:41:25,652 --> 00:41:27,854 WE MIGHT ALSO WANT TO THINK 1264 00:41:27,854 --> 00:41:29,622 ABOUT INCENTIVES AND OTHER 1265 00:41:29,622 --> 00:41:30,924 POLICY-LEVEL STRATEGIES TO 1266 00:41:30,924 --> 00:41:32,826 CONSIDER AND REDUCE POTENTIAL 1267 00:41:32,826 --> 00:41:33,827 DETERRENT EFFECTS OF PROVIDING 1268 00:41:33,827 --> 00:41:38,164 THIS CARE. 1269 00:41:38,164 --> 00:41:38,398 OKAY. 1270 00:41:38,398 --> 00:41:42,869 SO LET ME END HERE. 1271 00:41:42,869 --> 00:41:44,404 TRIALS INCLUDING BRAIN IMPLANTS 1272 00:41:44,404 --> 00:41:49,776 CAN CAUSE SIGNIFICANT RISKS. 1273 00:41:49,776 --> 00:41:51,744 STILL, PATIENTS ARE VOLUNTEERING 1274 00:41:51,744 --> 00:41:53,379 IN THEM IN ORDER TO BENEFIT 1275 00:41:53,379 --> 00:41:55,381 SOCIETY AND IN THE HOPES OF 1276 00:41:55,381 --> 00:41:57,317 BENEFITING THEMSELVES. 1277 00:41:57,317 --> 00:41:59,385 NOW, THESE PATIENTS ARE AT RISK, 1278 00:41:59,385 --> 00:42:01,254 NOT JUST OF THE RISKS WRN THE 1279 00:42:01,254 --> 00:42:02,689 TRIAL, BUT ALSO AT RISK OF 1280 00:42:02,689 --> 00:42:04,457 SIGNIFICANT UNMET CLINICAL NEEDS 1281 00:42:04,457 --> 00:42:07,026 RELATED TO THEIR RESEARCH 1282 00:42:07,026 --> 00:42:08,862 PARTICIPATION AFTER TRIALS END. 1283 00:42:08,862 --> 00:42:11,898 SO YOU MIGHT DISAGREE WITH SOME 1284 00:42:11,898 --> 00:42:13,299 OF THE SPECIFICS THAT I PROPOSE, 1285 00:42:13,299 --> 00:42:15,068 AND WE CAN TALK ABOUT THAT. 1286 00:42:15,068 --> 00:42:15,969 BUT I HOPE TO CONVINCE YOU THAT 1287 00:42:15,969 --> 00:42:18,371 THE NATURE OF THESE BRAIN 1288 00:42:18,371 --> 00:42:19,572 IMPLANT TRIALS INCLUDING THE 1289 00:42:19,572 --> 00:42:20,540 RISKS GIVES US SOME 1290 00:42:20,540 --> 00:42:22,275 RESPONSIBILITY TO AT LEAST DO A 1291 00:42:22,275 --> 00:42:23,710 LITTLE BIT BETTER FOR THESE 1292 00:42:23,710 --> 00:42:25,245 PATIENTS AND ESTABLISH BEST 1293 00:42:25,245 --> 00:42:27,113 PRACTICES FOR POST-TRIAL CARE. 1294 00:42:27,113 --> 00:42:29,716 I LOOK FORWARD TO YOUR 1295 00:42:29,716 --> 00:42:32,185 QUESTIONS. 1296 00:42:32,185 --> 00:42:41,361 [APPLAUSE] 1297 00:42:41,361 --> 00:42:42,862 >> THANK YOU VERY MUCH, SASK 1298 00:42:42,862 --> 00:42:45,698 YARKS THAT WAS TERRIFIC, 1299 00:42:45,698 --> 00:42:47,467 AND --LY SASKIA, THAT WAS 1300 00:42:47,467 --> 00:42:48,134 TERRIFIC, THANK YOU FOR THE 1301 00:42:48,134 --> 00:42:49,435 QUICK CHANGE. 1302 00:42:49,435 --> 00:42:51,738 IT LOOKS LIKE JASMINE HAS A 1303 00:42:51,738 --> 00:42:52,171 QUESTION. 1304 00:42:52,171 --> 00:42:52,872 THERE ARE FOLKS IN THE ROOM YOU 1305 00:42:52,872 --> 00:42:54,807 CAN SEE OBVIOUSLY AND FOLKS IN 1306 00:42:54,807 --> 00:42:56,776 VIRTUAL LAND CAN SEND ME 1307 00:42:56,776 --> 00:42:57,043 QUESTIONS. 1308 00:42:57,043 --> 00:42:58,011 WE'LL START WITH JASMINE. 1309 00:42:58,011 --> 00:42:59,178 >> THANKS VERY MUCH FOR THIS. 1310 00:42:59,178 --> 00:43:00,914 I FOUND IT REALLY INTERESTING 1311 00:43:00,914 --> 00:43:06,119 AND PLAUSIBLE, BUT I WANTED TO 1312 00:43:06,119 --> 00:43:10,690 HEAR A LITTLE BIT MORE ABOUT THE 1313 00:43:10,690 --> 00:43:14,527 BENEFICENCE AND NONMALFEASANCE 1314 00:43:14,527 --> 00:43:15,728 REQUIREMENTS, BECAUSE IT SEEMS 1315 00:43:15,728 --> 00:43:19,132 LIKE, I MEAN, AS YOU SAY, THAT 1316 00:43:19,132 --> 00:43:22,535 THE NONMALFEASANCE BIT IS LIKE 1317 00:43:22,535 --> 00:43:23,937 DOING A LOT OF THE WORK, BUT I 1318 00:43:23,937 --> 00:43:25,805 GUESS IT WASN'T CLEAR TO ME WHY 1319 00:43:25,805 --> 00:43:32,679 THAT WE SHOULD THINK OF PULLING 1320 00:43:32,679 --> 00:43:35,114 LIKE SUPPORT AND NOT GIVING 1321 00:43:35,114 --> 00:43:37,684 POST-TRIAL ACCESS AS MALFEASANCE 1322 00:43:37,684 --> 00:43:39,686 IN A LOT OF CASES, BECAUSE, I 1323 00:43:39,686 --> 00:43:40,987 MEAN, IT SEEMS LIKE IF THERE'S A 1324 00:43:40,987 --> 00:43:42,422 CHANCE FOR INFECTION OR 1325 00:43:42,422 --> 00:43:45,592 COMPLICATIONS, THAT SEEMS LIKE 1326 00:43:45,592 --> 00:43:46,893 MALFEASANCE, BUT IT SEEMS LIKE 1327 00:43:46,893 --> 00:43:49,662 MOST OF WHAT'S AT ISSUE IS 1328 00:43:49,662 --> 00:43:51,064 THEY'VE LIKE REALLY GOTTEN USED 1329 00:43:51,064 --> 00:43:52,966 TO THESE BENEFITS, AND IT'S GOOD 1330 00:43:52,966 --> 00:43:54,601 FOR THEM TO HAVE THESE BENEFITS, 1331 00:43:54,601 --> 00:43:56,569 AND PULLING THEM LIKE CAUSES A 1332 00:43:56,569 --> 00:43:58,004 KIND OF EMOTIONAL HARM, BUT IT 1333 00:43:58,004 --> 00:43:59,872 SEEMS LIKE IT'S KIND OF JUST AN 1334 00:43:59,872 --> 00:44:01,074 EMOTIONAL HARM THAT'S A REACTION 1335 00:44:01,074 --> 00:44:02,809 TONTD HAVING THE BENEFIT. 1336 00:44:02,809 --> 00:44:04,677 -- TONT HAVING THE BENEFIT. 1337 00:44:04,677 --> 00:44:07,080 SO IKS -- TO NOT HAVING THE 1338 00:44:07,080 --> 00:44:07,313 BENEFIT. 1339 00:44:07,313 --> 00:44:09,182 I GUESS I WAS HOPING YOU COULD 1340 00:44:09,182 --> 00:44:10,149 SAY A LITTLE MORE ABOUT THAT. 1341 00:44:10,149 --> 00:44:12,685 >> THANK YOU FOR THE OPPORTUNITY 1342 00:44:12,685 --> 00:44:13,753 ON CLARIFY THAT. 1343 00:44:13,753 --> 00:44:15,188 I AGREE WITH YOU, BASICALLY NEW 1344 00:44:15,188 --> 00:44:16,723 YORK STOCK EXCHANGE THE BENEFITS 1345 00:44:16,723 --> 00:44:20,193 OF A DEVICE, TO ME THAT'S A BEEN 1346 00:44:20,193 --> 00:44:22,495 HE SINCE BASED, IF WE HAVE AN 1347 00:44:22,495 --> 00:44:24,364 OBLIGATION, THAT'S A BENEFICENCE 1348 00:44:24,364 --> 00:44:24,597 BASE. 1349 00:44:24,597 --> 00:44:25,832 THAT'S WHAT WE'VE SEEN IN MANY 1350 00:44:25,832 --> 00:44:26,499 OF THESE CASES. 1351 00:44:26,499 --> 00:44:27,934 THERE ARE A COUPLE OF PEOPLE WHO 1352 00:44:27,934 --> 00:44:31,170 HAVE ARC YOU HAD FOR 1353 00:44:31,170 --> 00:44:32,305 NONMALEFICENCE CLAIMS RELATED 1354 00:44:32,305 --> 00:44:34,273 TOP THE PSYCHOSOCIAL HARMS OF 1355 00:44:34,273 --> 00:44:35,808 LOSING ACCESS TO A DEVICE, SO 1356 00:44:35,808 --> 00:44:37,110 THERE IS SOME LITERATURE ABOUT 1357 00:44:37,110 --> 00:44:39,278 THAT WHICH YOU JUST BROUGHT UP, 1358 00:44:39,278 --> 00:44:43,883 BUT I THINK TO ME THE MA LEF 1359 00:44:43,883 --> 00:44:45,652 SINCE -- MALEFICENCE COMES INTO 1360 00:44:45,652 --> 00:44:47,387 PLAY NOT JUST WHEN COMPLICATIONS 1361 00:44:47,387 --> 00:44:49,122 IMURT ALSO THE ROUTINE CARE 1362 00:44:49,122 --> 00:44:50,490 THAT'S REQUIRED TO CONTINUE TO 1363 00:44:50,490 --> 00:44:51,658 REDUCE SIDE EFFECTS AND REDUCE 1364 00:44:51,658 --> 00:44:52,859 THE CHANCE OF COMPLICATIONS OF 1365 00:44:52,859 --> 00:44:55,595 HAVING A BRAIN IMPLANT. 1366 00:44:55,595 --> 00:44:59,098 IT ALSO COMES UP WHEN IN THE 1367 00:44:59,098 --> 00:45:01,534 CONTEXT OF EXPLANTATION OF THESE 1368 00:45:01,534 --> 00:45:02,335 DEVICES. 1369 00:45:02,335 --> 00:45:04,837 SO SOME TRIALS PLAN ON BASIC 1370 00:45:04,837 --> 00:45:08,141 EX-PLANTING THE DEVICE AFTER THE 1371 00:45:08,141 --> 00:45:09,676 STUDY ENDS, WHICH CAN BE 1372 00:45:09,676 --> 00:45:11,978 APPROPRIATE IN CERTAIN CONTEXTS, 1373 00:45:11,978 --> 00:45:13,079 BUT THAT INVOLVES ADDITIONAL 1374 00:45:13,079 --> 00:45:15,815 RISKS TO YOUR PARTICIPANT. 1375 00:45:15,815 --> 00:45:18,317 SO EXPLANTATION I THINK OR 1376 00:45:18,317 --> 00:45:19,952 AVOIDING EXPLANTATION ALSO CAN 1377 00:45:19,952 --> 00:45:22,689 BE SEEN AS A NONMALEFICENCE 1378 00:45:22,689 --> 00:45:23,056 BASED DUTY. 1379 00:45:23,056 --> 00:45:23,823 DOES THAT HELP? 1380 00:45:23,823 --> 00:45:25,792 >> THANKS, THAT WAS VERY 1381 00:45:25,792 --> 00:45:26,025 HELPFUL. 1382 00:45:26,025 --> 00:45:26,926 >> YEAH, GREAT QUESTION. 1383 00:45:26,926 --> 00:45:27,894 >> CAROLINE, GO AHEAD. 1384 00:45:27,894 --> 00:45:29,128 >> HI. 1385 00:45:29,128 --> 00:45:30,630 THANK YOU, SASKIA. 1386 00:45:30,630 --> 00:45:31,798 I HAVE TWO QUESTIONS. 1387 00:45:31,798 --> 00:45:37,603 ONE OF THEM IS I GUESS MORE 1388 00:45:37,603 --> 00:45:38,604 LOGISTICAL. 1389 00:45:38,604 --> 00:45:40,573 IT SEEMS LIKE A BIG PART OF THE 1390 00:45:40,573 --> 00:45:42,542 TALK WAS LIKE COST INCENTIVES 1391 00:45:42,542 --> 00:45:45,411 FOR COMPANIES WHO ARE DEVELOPING 1392 00:45:45,411 --> 00:45:47,380 THESE DRUGS AND THAT OFTENTIMES 1393 00:45:47,380 --> 00:45:49,148 THEY COME IT A POINT WHERE 1394 00:45:49,148 --> 00:45:50,783 THERE'S NOT COMMERCIAL VIABILITY 1395 00:45:50,783 --> 00:45:52,385 HAD, AND I'M WONDERING IF YOU 1396 00:45:52,385 --> 00:45:54,187 COULD TALK A LITTLE BIT MORE 1397 00:45:54,187 --> 00:45:56,255 ABOUT WHY THAT MIGHT BE THE CASE 1398 00:45:56,255 --> 00:45:58,658 FOR NEURAL DEVICES AS OPPOSED TO 1399 00:45:58,658 --> 00:46:00,626 PHARMACEUTICAL DEVICES AND WHAT 1400 00:46:00,626 --> 00:46:01,627 SPECIAL CONSIDERATIONS THERE ARE 1401 00:46:01,627 --> 00:46:04,697 IN TERMS OF ENSURING COMMERCIAL 1402 00:46:04,697 --> 00:46:05,898 VIABILITY AS WELL AS FDA 1403 00:46:05,898 --> 00:46:06,966 APPROVAL ASK HOW THAT MIGHT 1404 00:46:06,966 --> 00:46:09,469 DIFFER FROM PHARMACEUTICALS. 1405 00:46:09,469 --> 00:46:12,238 AND THEN MY SECOND QUESTION WAS 1406 00:46:12,238 --> 00:46:14,741 LAST WEEK JOE TALKED OR BROUGHT 1407 00:46:14,741 --> 00:46:20,079 UP THE POINT THAT PERHAPS THE 1408 00:46:20,079 --> 00:46:20,947 POST-TRIAL BENEFITS 1409 00:46:20,947 --> 00:46:23,583 RESPONSIBILITY STEMS FROM LIKE A 1410 00:46:23,583 --> 00:46:25,118 SPECIAL -- OR WHETHER OR NOT 1411 00:46:25,118 --> 00:46:26,319 RESEARCHERS SHOULD TAKE ON THE 1412 00:46:26,319 --> 00:46:28,287 RESPONSIBILITY OF LIKE A 1413 00:46:28,287 --> 00:46:30,256 DOCTOR-PATIENT RELATIONSHIP AND 1414 00:46:30,256 --> 00:46:31,657 LIKE WHETHER OR NOT THAT MIGHT 1415 00:46:31,657 --> 00:46:32,759 HAVE LIKE SPECIAL APPLICATIONS 1416 00:46:32,759 --> 00:46:37,597 IN THIS CASE BECAUSE THE IMPLANT 1417 00:46:37,597 --> 00:46:39,265 IS IMPLANTED IN THEM AND YOU 1418 00:46:39,265 --> 00:46:40,767 CAN'T TAKE THEM OUT, AND IT'S 1419 00:46:40,767 --> 00:46:42,201 LIKE SO INTIMATELY RELATED TO 1420 00:46:42,201 --> 00:46:44,403 THEIR CARE AND WHETHER OR NOT WE 1421 00:46:44,403 --> 00:46:46,139 SHOULD APPLY LIKE CLINICAL 1422 00:46:46,139 --> 00:46:47,673 RESPONSIBILITIES TO POST-TRIAL 1423 00:46:47,673 --> 00:46:49,742 CARE, WHICH MIGHT HAVE A HIGHER 1424 00:46:49,742 --> 00:46:51,010 STANDARD THAN RESEARCH 1425 00:46:51,010 --> 00:46:54,714 RESPONSIBILITIES TO THE PATIENT. 1426 00:46:54,714 --> 00:46:56,916 >> GREAT QUESTIONS. 1427 00:46:56,916 --> 00:46:57,517 THANK YOU. 1428 00:46:57,517 --> 00:47:00,453 LET ME START WITH THE SECOND 1429 00:47:00,453 --> 00:47:00,620 ONE. 1430 00:47:00,620 --> 00:47:03,856 SO YES, SOME ARGUE FOR POST 1431 00:47:03,856 --> 00:47:04,791 TRIAL RESPONSIBILITIES GROUNDED 1432 00:47:04,791 --> 00:47:06,359 IN THE RELATIONSHIP BETWEEN THE 1433 00:47:06,359 --> 00:47:09,462 RESEARCHER AND THE PATIENT, AND 1434 00:47:09,462 --> 00:47:11,097 MANY OF THE PEOPLE I'VE SPOKEN 1435 00:47:11,097 --> 00:47:14,500 TO WHO THINK THAT'S -- WOULD 1436 00:47:14,500 --> 00:47:16,469 ARGUE THAT THOSE 1437 00:47:16,469 --> 00:47:17,203 RELATIONSHIP-BASED 1438 00:47:17,203 --> 00:47:18,204 RESPONSIBILITIES GET STRONGER IF 1439 00:47:18,204 --> 00:47:20,072 RELATIONSHIPS ARE TIGHTER AND IF 1440 00:47:20,072 --> 00:47:21,474 PATIENTS ARE MORE DEPENDENT ON 1441 00:47:21,474 --> 00:47:24,477 THE RELATIONSHIP WITH THE 1442 00:47:24,477 --> 00:47:25,778 SPECIFIC CLINICIAN, WHICH TENDS 1443 00:47:25,778 --> 00:47:28,414 TO REALLY BE THE CASE IN THESE 1444 00:47:28,414 --> 00:47:30,616 TYPES OF TRIALS OR BASED ON A 1445 00:47:30,616 --> 00:47:33,019 LOT OF THESE TRIALS, I'M 1446 00:47:33,019 --> 00:47:33,886 GENERALIZING A LITTLE BIT, 1447 00:47:33,886 --> 00:47:35,188 BECAUSE THEY INVOLVE SUCH A 1448 00:47:35,188 --> 00:47:39,025 CLOSE COLLABORATION WITH THE 1449 00:47:39,025 --> 00:47:40,359 NEUROSURGICAL TEAM AND THE 1450 00:47:40,359 --> 00:47:42,862 PATIENT TO LEARN HOW TO WORK THE 1451 00:47:42,862 --> 00:47:44,063 MACHINE FOR THE PATIENT'S 1452 00:47:44,063 --> 00:47:46,465 BENEFIT BASICALLY AND TO CONDUCT 1453 00:47:46,465 --> 00:47:49,302 THE RESEARCH, AS WELL AS A HIGH 1454 00:47:49,302 --> 00:47:51,737 DEPENDENCY OF THE PATIENT ON 1455 00:47:51,737 --> 00:47:55,775 THIS SPECIFIC INDIVIDUAL. 1456 00:47:55,775 --> 00:48:01,247 SO I THINK, I DO THINK THAT 1457 00:48:01,247 --> 00:48:02,215 INCREASES THE RESPONSIBILITIES 1458 00:48:02,215 --> 00:48:04,851 BASED ON THE RELATIONSHIP FOR 1459 00:48:04,851 --> 00:48:06,152 THESE TYPES OF TRIEMS. 1460 00:48:06,152 --> 00:48:08,020 I'M NOT SURE -- FOR THESE TYPES 1461 00:48:08,020 --> 00:48:08,788 OF TRIALS. 1462 00:48:08,788 --> 00:48:11,290 I'M NOT SURE I WOULD -- TO ME, 1463 00:48:11,290 --> 00:48:12,592 CHARACTERIZING THESE NEEDS AS 1464 00:48:12,592 --> 00:48:13,793 RELATED TO THE RESEARCH AS 1465 00:48:13,793 --> 00:48:17,463 OPPOSED TO GENERAL CLINICAL 1466 00:48:17,463 --> 00:48:19,532 NEEDS SERVES THE PURPOSE THAT, 1467 00:48:19,532 --> 00:48:21,500 FIRST, I MEAN, THEY ARE CAUSALLY 1468 00:48:21,500 --> 00:48:22,902 CONNECTED TO RESEARCH, OF 1469 00:48:22,902 --> 00:48:27,840 COURSE, BUT ALSO THERE ARE SO 1470 00:48:27,840 --> 00:48:29,609 MANY NEEDS A -- THERE ARE SO 1471 00:48:29,609 --> 00:48:32,345 MANY CLINICAL NEEDS A PATIENT IN 1472 00:48:32,345 --> 00:48:34,780 THIS COUNTRY ARE UNMELT AND 1473 00:48:34,780 --> 00:48:36,082 DOESN'T PROVIDE CLINICIAN 1474 00:48:36,082 --> 00:48:37,416 NECESSARILY OBLIGATION TO MEET 1475 00:48:37,416 --> 00:48:38,918 THOSE NEEDS, SO I THINK WE HAVE 1476 00:48:38,918 --> 00:48:40,920 A LARGER OBLIGATION FOR 1477 00:48:40,920 --> 00:48:42,788 RESEARCH-BASED CLINICAL NEEDS 1478 00:48:42,788 --> 00:48:44,891 BECAUSE THE PATIENT TOOK THEM ON 1479 00:48:44,891 --> 00:48:46,559 ON BEHALF OF TO BENEFIT SOCIETY 1480 00:48:46,559 --> 00:48:47,960 AND WE ARE AS A SOCIETY 1481 00:48:47,960 --> 00:48:48,961 BENEFITING FROM THEIR RISKS AND 1482 00:48:48,961 --> 00:48:53,366 BURDENS THAT THEY UNDERTOOK, AND 1483 00:48:53,366 --> 00:48:54,000 WE'RE -- YEAH. 1484 00:48:54,000 --> 00:48:55,201 SO I THINK THERE'S SOMETHING 1485 00:48:55,201 --> 00:48:59,272 THAT THE RESEARCH PIECE DOES 1486 00:48:59,272 --> 00:49:00,673 THERE, WHICH MAKES ME WANT TO 1487 00:49:00,673 --> 00:49:02,241 NOT JUST REFER TO THESE AS 1488 00:49:02,241 --> 00:49:04,877 CLINICAL NEEDS NECESSARILY. 1489 00:49:04,877 --> 00:49:07,380 IN RELATION IT YOUR FIRST 1490 00:49:07,380 --> 00:49:10,750 QUESTION ABOUT VIABILITY OF 1491 00:49:10,750 --> 00:49:14,186 DRUGS VERSUS DEVICES AND THE 1492 00:49:14,186 --> 00:49:16,923 COMMERCIALIZATION THEREOF, I 1493 00:49:16,923 --> 00:49:19,458 ACTUALLY THINK THAT'S A GOOD 1494 00:49:19,458 --> 00:49:19,725 QUESTION. 1495 00:49:19,725 --> 00:49:20,893 I DON'T KNOW IF THERE'S 1496 00:49:20,893 --> 00:49:23,296 STRUCTURAL EVIDENCE ON WHETHER 1497 00:49:23,296 --> 00:49:26,532 PHARMACEUTICALS OR DRUGS ARE 1498 00:49:26,532 --> 00:49:29,302 MORE OR LESS LIKELY TO BE 1499 00:49:29,302 --> 00:49:31,270 COMMERCIALLY VIABLE THAN 1500 00:49:31,270 --> 00:49:31,604 DEVICES. 1501 00:49:31,604 --> 00:49:35,007 I'M SURE WHAT THE DATA SAYS ON 1502 00:49:35,007 --> 00:49:38,344 THAT ONE. 1503 00:49:38,344 --> 00:49:40,579 I DO THINK THIS IS A SPACE WHERE 1504 00:49:40,579 --> 00:49:42,648 THERE ARE A NUMBER OF STARTUPS. 1505 00:49:42,648 --> 00:49:44,517 COMMERCIAL VIABILITY TENDS TO BE 1506 00:49:44,517 --> 00:49:47,920 HARDER FOR A SMALLER POPULATION 1507 00:49:47,920 --> 00:49:49,355 SIZES, SO LIKE RARE DISEASES, 1508 00:49:49,355 --> 00:49:53,292 BUT THOSE ARE FOR BOTH DEVICES 1509 00:49:53,292 --> 00:49:54,627 AND DRUGS TOO, SO I THINK I'LL 1510 00:49:54,627 --> 00:49:56,028 HAVE TO GET BACK TO YOU ON THE 1511 00:49:56,028 --> 00:49:57,763 DATA ON THAT ONE. 1512 00:49:57,763 --> 00:50:01,400 >> WE DO KNOW FROM A COUPLE OF 1513 00:50:01,400 --> 00:50:02,935 LECTURES AGO HOW, YOU KNOW, THE 1514 00:50:02,935 --> 00:50:04,403 NUMBER OF PHARMACEUTICALS THAT 1515 00:50:04,403 --> 00:50:07,506 START OUT IN PHASE I THAT GO TO 1516 00:50:07,506 --> 00:50:09,709 PHASE II, THAT GO TO PHASE III, 1517 00:50:09,709 --> 00:50:12,044 THERE'S A PRETTY HUGE DROPOFF. 1518 00:50:12,044 --> 00:50:14,780 SO IF WE THINK OF MANY OF THESE 1519 00:50:14,780 --> 00:50:17,717 TRIALS AS PHASE I, PHASE II, WE 1520 00:50:17,717 --> 00:50:20,453 KNOW BASED ON WHAT WE KNOW ABOUT 1521 00:50:20,453 --> 00:50:22,855 MORE COMMON DRUG COMPOUNDS THAT 1522 00:50:22,855 --> 00:50:24,657 THERE'S A BIG FALLOFF, AND THE 1523 00:50:24,657 --> 00:50:26,525 DIFFERENCE HERE, RIGHT, IS THAT 1524 00:50:26,525 --> 00:50:27,960 IT'S IMPLANTED IN YOUR BRAIN 1525 00:50:27,960 --> 00:50:30,730 VERSUS SOMETHING THAT YOU'RE 1526 00:50:30,730 --> 00:50:37,103 TAKING IN. 1527 00:50:37,103 --> 00:50:43,476 >> (AWAY FROM MICROPHONE). 1528 00:50:43,476 --> 00:50:45,177 >> IT DOESN'T ALWAYS WORK THAT 1529 00:50:45,177 --> 00:50:47,580 WAY, AND IN SOME OF THESE CASES, 1530 00:50:47,580 --> 00:50:49,181 FOR EXAMPLE, DBS FOR DEPRESSION, 1531 00:50:49,181 --> 00:50:50,416 WE'VE TRIED THAT FOR A LONG 1532 00:50:50,416 --> 00:50:52,184 TIME, AND ESPECIALLY THE EARLY 1533 00:50:52,184 --> 00:50:55,021 WORK, IT APPEARED TO HAVE 1534 00:50:55,021 --> 00:50:56,422 BENEFITS FOR SMALL POPULATIONS 1535 00:50:56,422 --> 00:50:58,324 THAT WE COULDN'T IDENTIFY AHEAD 1536 00:50:58,324 --> 00:50:59,291 OF TIME. 1537 00:50:59,291 --> 00:51:01,861 SO NOT FOR THE ENTIRE GROUP, BUT 1538 00:51:01,861 --> 00:51:03,496 YES, FOR LIKE WHATEVER, A SMALL 1539 00:51:03,496 --> 00:51:06,732 NUMBER OF PATIENTS WITHIN THAT 1540 00:51:06,732 --> 00:51:06,999 TRIAL. 1541 00:51:06,999 --> 00:51:10,169 PART OF IT IS BECAUSE WE JUST 1542 00:51:10,169 --> 00:51:11,604 DON'T KNOW HOW WELL -- WE DON'T 1543 00:51:11,604 --> 00:51:12,905 UNDERSTAND THE BRAIN PERHAPS AS 1544 00:51:12,905 --> 00:51:15,074 WELL AS WE WOULD LIKE. 1545 00:51:15,074 --> 00:51:17,610 >> KELLY, AND THEN WE HAVE A 1546 00:51:17,610 --> 00:51:18,911 COUPLE QUESTIONS FROM OUR 1547 00:51:18,911 --> 00:51:20,813 VIRTUAL AUDIENCE. 1548 00:51:20,813 --> 00:51:22,114 >> HI, SASKIA. 1549 00:51:22,114 --> 00:51:24,483 SO I WAS WONDERING, ESPECIALLY 1550 00:51:24,483 --> 00:51:26,786 WITH THESE, THE KIND OF LIKE 1551 00:51:26,786 --> 00:51:28,320 WITH NEURAL IMPLANTS BECAUSE 1552 00:51:28,320 --> 00:51:29,855 THEY TEND TO BE SO KIND OF LIKE 1553 00:51:29,855 --> 00:51:32,591 EARLY STAGE, WHETHER THERE'S 1554 00:51:32,591 --> 00:51:33,893 MAYBE LIKE -- LIKE WHETHER YOU 1555 00:51:33,893 --> 00:51:35,094 COULD SORT OF JUSTIFY PROVIDING 1556 00:51:35,094 --> 00:51:37,663 THE SORT OF POST-TRIAL CARE AS 1557 00:51:37,663 --> 00:51:39,732 AN EXTENSION OF LIKE AN ABILITY 1558 00:51:39,732 --> 00:51:41,867 TO DO RESEARCH, JUST BECAUSE IT 1559 00:51:41,867 --> 00:51:43,135 SEEMS LIKE, YOU KNOW, IF YOU 1560 00:51:43,135 --> 00:51:44,503 HAVE A PATIENT WHO HAS THIS 1561 00:51:44,503 --> 00:51:45,838 IMPLANT AND MAYBE LIKE TEN YEARS 1562 00:51:45,838 --> 00:51:47,239 DOWN THE LINE, YOU KNOW, THE 1563 00:51:47,239 --> 00:51:48,808 DEVICE STARTS TO MALFUNCTION, 1564 00:51:48,808 --> 00:51:49,875 THAT SEEMS LIKE SOMETHING THAT 1565 00:51:49,875 --> 00:51:51,644 WOULD BE IMPORTANT SAFETY AND 1566 00:51:51,644 --> 00:51:52,645 EFFICACY DATA TO BE ABLE TO 1567 00:51:52,645 --> 00:51:54,947 COLLECT RS EVEN IF IT'S WITH A 1568 00:51:54,947 --> 00:51:56,816 VERY SMALL END, SO I WAS JUST 1569 00:51:56,816 --> 00:51:58,117 WONDERING LIKE IF YOU THINK THAT 1570 00:51:58,117 --> 00:52:00,319 BECAUSE OF THE NATURE OF NEURAL 1571 00:52:00,319 --> 00:52:01,720 IMPLANT RESEARCH, LIKE IF THAT 1572 00:52:01,720 --> 00:52:03,489 WOULD BE KIND OF A VIABLE 1573 00:52:03,489 --> 00:52:06,859 ARGUMENT TO MAKE. 1574 00:52:06,859 --> 00:52:12,798 >> TO SOME DEGREE I THINK YES. 1575 00:52:12,798 --> 00:52:15,167 I MEAN, THE FDA REQUIRES THE 1576 00:52:15,167 --> 00:52:16,735 ADMINISTRATION OF SOME ADVERSE 1577 00:52:16,735 --> 00:52:17,636 EFFECTS GENERALLY SPEAKING, SO 1578 00:52:17,636 --> 00:52:18,904 SOME OF THAT DATA IS ALREADY 1579 00:52:18,904 --> 00:52:20,873 BEING COLLECTED, EVEN IF WE 1580 00:52:20,873 --> 00:52:22,141 DON'T TAKE CARE OF PATIENTS. 1581 00:52:22,141 --> 00:52:25,478 THERE ARE SOME STUDIES OR TEAMS 1582 00:52:25,478 --> 00:52:27,113 THAT IF HOPE TO DO LONG-TERM 1583 00:52:27,113 --> 00:52:28,981 FOLLOW-UP STUDIES OR USE 1584 00:52:28,981 --> 00:52:31,050 LONG-TERM FOLLOW-UP STRATEGIES 1585 00:52:31,050 --> 00:52:32,251 STUDIES AS A STRATEGY TO 1586 00:52:32,251 --> 00:52:34,687 CONTINUE TO PROVIDE CARE FOR 1587 00:52:34,687 --> 00:52:36,889 PARTICIPANTS, WHICH I THINK IS A 1588 00:52:36,889 --> 00:52:38,424 FINE STRATEGY. 1589 00:52:38,424 --> 00:52:39,959 THE ONLY PROBLEM I SEE WITH IT 1590 00:52:39,959 --> 00:52:41,827 IS RELYING ON THAT STRATEGY IF 1591 00:52:41,827 --> 00:52:43,996 YOU HAVEN'T YET SECURED FUNDING 1592 00:52:43,996 --> 00:52:46,765 FOR FOLLOW-UP TRIALS BECAUSE YOU 1593 00:52:46,765 --> 00:52:48,400 MIGHT NOT THEN GET THAT FUNDING, 1594 00:52:48,400 --> 00:52:51,570 AND IF THAT WAS YOUR PLAN, THAT 1595 00:52:51,570 --> 00:52:53,105 MIGHT FALL TRUE. 1596 00:52:53,105 --> 00:52:55,508 BUT I DO THINK THAT FOLLOW-UP 1597 00:52:55,508 --> 00:52:56,709 STUDIES CAN PLAY AN IMPORTANT 1598 00:52:56,709 --> 00:52:59,545 ROLE IN THIS AND PERHAPS LIKE 1599 00:52:59,545 --> 00:53:01,881 ONE OF THE WAYS OF THINKING 1600 00:53:01,881 --> 00:53:02,648 ABOUT SOLUTIONS WOULD BE TO 1601 00:53:02,648 --> 00:53:04,383 THINK ABOUT HOW WE CAN SECURE 1602 00:53:04,383 --> 00:53:06,619 THE MORE LONG-TERM HORIZON. 1603 00:53:06,619 --> 00:53:07,786 ONE OF THE CHALLENGES IS THAT 1604 00:53:07,786 --> 00:53:10,322 SOME OF THESE NEEDS MIGHT BE 1605 00:53:10,322 --> 00:53:12,057 LIKE FOR A PATIENT'S LIFETIME, 1606 00:53:12,057 --> 00:53:13,692 SO THAT'S A LONG TIME FOR A 1607 00:53:13,692 --> 00:53:17,730 FOLLOW-UP STUDIES. 1608 00:53:17,730 --> 00:53:17,930 MUCH. 1609 00:53:17,930 --> 00:53:19,932 >> GREAT. WE HAVE A COUPLE MORE 1610 00:53:19,932 --> 00:53:20,166 MINUTES. 1611 00:53:20,166 --> 00:53:21,133 I HAVE A COUPLE OF QUESTIONS 1612 00:53:21,133 --> 00:53:23,769 FROM THE VIRTUAL AUDIENCE. 1613 00:53:23,769 --> 00:53:26,939 SO YOU VERY BRIEFLY TOUCHED ON 1614 00:53:26,939 --> 00:53:30,776 THIS TOPIC, BUT DALIP WONDERS 1615 00:53:30,776 --> 00:53:32,077 SHOULD WE BE WORRIED ABOUT THE 1616 00:53:32,077 --> 00:53:33,846 SORT OF CONFLICT OF AUTONOMY 1617 00:53:33,846 --> 00:53:35,247 BETWEEN AN INDIVIDUAL AND A 1618 00:53:35,247 --> 00:53:38,517 MACHINE THAT IS IMPLANTED? 1619 00:53:38,517 --> 00:53:39,752 WE MIGHT NOT BE THERE YET, BUT 1620 00:53:39,752 --> 00:53:42,288 THAT MIGHT EXAGGERATE SOME OF 1621 00:53:42,288 --> 00:53:45,090 THE WORRIES THAT NOT KNOWING HOW 1622 00:53:45,090 --> 00:53:47,193 PERSONALITY BE CHANGES MAY 1623 00:53:47,193 --> 00:53:47,393 OCCUR. 1624 00:53:47,393 --> 00:53:50,462 >> YEAH. 1625 00:53:50,462 --> 00:53:55,868 THERE IS A LITERATURE ABOUT THAT 1626 00:53:55,868 --> 00:53:58,604 QUESTION, AND IT'S GETTING MORE 1627 00:53:58,604 --> 00:54:03,542 ATTENTION NOW THAT SOME OF THESE 1628 00:54:03,542 --> 00:54:05,377 DEVICES ARE USING AI TO IMPROVE 1629 00:54:05,377 --> 00:54:07,680 THEIR OWN ALGORITHMS, SO THAT 1630 00:54:07,680 --> 00:54:10,916 MAKES IT MORE OF A BLACK BOX OF 1631 00:54:10,916 --> 00:54:13,352 WHAT'S HAPPENING IN YOUR BRAIN, 1632 00:54:13,352 --> 00:54:16,222 AND THERE ARE -- I MEAN, THERE 1633 00:54:16,222 --> 00:54:19,191 ARE DEFINITELY CONCERNS RELATED 1634 00:54:19,191 --> 00:54:21,026 TO DIMINISHING AUTONOMY BASED ON 1635 00:54:21,026 --> 00:54:24,096 THESE TYPES OF DEVICES, FOR 1636 00:54:24,096 --> 00:54:27,399 EXAMPLE, THE GROUP IN SEATTLE 1637 00:54:27,399 --> 00:54:29,134 REPORTS ON SOME OF THESE 1638 00:54:29,134 --> 00:54:30,169 EFFECTS, BUT AT THE SAME TIME, I 1639 00:54:30,169 --> 00:54:31,337 THINK IT'S IMPORTANT TO 1640 00:54:31,337 --> 00:54:33,439 APPRECIATE THAT FOR MANY 1641 00:54:33,439 --> 00:54:35,074 PATIENTS, IF THESE DEVICES WORK, 1642 00:54:35,074 --> 00:54:36,942 THEY ACTUALLY ENHANCE AUTONOMY 1643 00:54:36,942 --> 00:54:38,143 SIGNIFICANTLY BECAUSE THEY ALLOW 1644 00:54:38,143 --> 00:54:39,878 PATIENTS TO DO SO MUCH MORE OF 1645 00:54:39,878 --> 00:54:44,083 THEIR OWN ACTIVITIES. 1646 00:54:44,083 --> 00:54:45,918 SO THERE ARE -- BUT I THINK 1647 00:54:45,918 --> 00:54:46,919 THERE ARE SOME COMPLEX 1648 00:54:46,919 --> 00:54:48,554 PHILOSOPHICAL AND EMPIRICAL 1649 00:54:48,554 --> 00:54:49,788 QUESTIONS THAT WE ARE JUST 1650 00:54:49,788 --> 00:54:51,390 DELVING INTO. 1651 00:54:51,390 --> 00:54:53,726 >> GREAT. 1652 00:54:53,726 --> 00:54:58,664 SO FOLCMON SCTION, HAVE -- ASKS, 1653 00:54:58,664 --> 00:55:00,833 HAVE COMPANIES FAILED TO PROVIDE 1654 00:55:00,833 --> 00:55:02,468 POST-TRIAL CAIRKS ARE THERE SORT 1655 00:55:02,468 --> 00:55:03,802 OF FOLLOW-UP STORIES TO THE ONES 1656 00:55:03,802 --> 00:55:05,738 YOU SHARED ABOUT PEOPLE WHO 1657 00:55:05,738 --> 00:55:06,972 ENCOUNTER HARM BECAUSE THEY HAVE 1658 00:55:06,972 --> 00:55:11,777 A DEVICE THAT ISN'T EX-PLANTED, 1659 00:55:11,777 --> 00:55:12,077 FOR EXAMPLE? 1660 00:55:12,077 --> 00:55:14,446 >> YES. 1661 00:55:14,446 --> 00:55:21,253 SO THAT'S WHY THE QUICK VERSION. 1662 00:55:21,253 --> 00:55:24,290 >> THERE ARE PEOPLE -- THERE ARE 1663 00:55:24,290 --> 00:55:25,991 PEOPLE WHO HAD TO HAVE AN 1664 00:55:25,991 --> 00:55:27,126 EX-PLANT BECAUSE THE COMPANY 1665 00:55:27,126 --> 00:55:28,460 FOLDED, THERE ARE PEOPLE WHO ARE 1666 00:55:28,460 --> 00:55:29,662 NOW WALKING AROUND WITH IMPLANTS 1667 00:55:29,662 --> 00:55:31,163 WHO ARE NOT SUPPORTED, SO THEY 1668 00:55:31,163 --> 00:55:32,898 CAN'T USE THEM, THEY MIGHT 1669 00:55:32,898 --> 00:55:33,098 NOT -- 1670 00:55:33,098 --> 00:55:34,500 >> OR TURNED OFF, BASICALLY. 1671 00:55:34,500 --> 00:55:36,835 >> THEY'RE TURNED OFF, YEAH, OR 1672 00:55:36,835 --> 00:55:37,936 THEY'RE STILL TURNED ON BUT 1673 00:55:37,936 --> 00:55:39,004 THEY'RE JUST WAITING FOR THE 1674 00:55:39,004 --> 00:55:40,572 BATTERY TO DIE OUT AND THEN FOR 1675 00:55:40,572 --> 00:55:41,674 THEM TO LOSE ACCESS. 1676 00:55:41,674 --> 00:55:44,510 IN SOME CASES, THERE ARE OTHER 1677 00:55:44,510 --> 00:55:48,447 ROUTES FOUND TO HELP THESE 1678 00:55:48,447 --> 00:55:49,648 PATIENTS, LIKE SOME OF THIS 1679 00:55:49,648 --> 00:55:50,983 ACTUALLY COMES DOWN TO MONEY AND 1680 00:55:50,983 --> 00:55:52,484 IN SOME CASES YOU CAN FIND MONEY 1681 00:55:52,484 --> 00:55:57,423 IN DIFFERENT PLACES, BUT IT'S 1682 00:55:57,423 --> 00:55:58,957 THE EXPERTISE AND THE HARDWARE, 1683 00:55:58,957 --> 00:56:01,927 THE COMMERCIALLY PROPRIETARY 1684 00:56:01,927 --> 00:56:03,662 HARDWARE PIECES THAT ARE REALLY 1685 00:56:03,662 --> 00:56:06,065 HARD TO REPLACE EVEN IF YOU HAVE 1686 00:56:06,065 --> 00:56:11,670 MONEY, IF THERE IS TR A KINK IN 1687 00:56:11,670 --> 00:56:11,870 THERE. 1688 00:56:11,870 --> 00:56:13,872 >> ONE LAST QUESTION AND TWO 1689 00:56:13,872 --> 00:56:15,307 FOLKS EMPLOYED THIS, AND I DON'T 1690 00:56:15,307 --> 00:56:16,742 THINK YOU MENTIONED IT AMONG 1691 00:56:16,742 --> 00:56:19,511 YOUR RECOMMENDATIONS, BUT IS 1692 00:56:19,511 --> 00:56:22,348 THERE ANY EFFORT SORT OF BACK TO 1693 00:56:22,348 --> 00:56:24,883 KELLY'S POINT, TOO, OF THE NIH 1694 00:56:24,883 --> 00:56:27,653 AS A FUNDER, FOR EXAMPLE, YOU 1695 00:56:27,653 --> 00:56:30,055 KNOW, CREATING EITHER THE TYPE 1696 00:56:30,055 --> 00:56:37,863 OF SYSTEM THAT WOULD BE LIKE THE 1697 00:56:37,863 --> 00:56:39,264 VACCINE -- COMPENSATION SYSTEM 1698 00:56:39,264 --> 00:56:41,567 OR ALLOWING INVEST GAY 1699 00:56:41,567 --> 00:56:45,070 INVESTIGATORS TO APPLY TO SOME 1700 00:56:45,070 --> 00:56:46,605 FUND OR ACCESS OF MONEY TO 1701 00:56:46,605 --> 00:56:47,473 PROVIDE THAT CARE? 1702 00:56:47,473 --> 00:56:48,006 >> THANK YOU. 1703 00:56:48,006 --> 00:56:51,744 GOOD QUESTION. 1704 00:56:51,744 --> 00:56:53,812 FIRST I WANT TO EMPHASIZE THAT 1705 00:56:53,812 --> 00:56:54,480 THESE RESPONSIBILITIES I THINK 1706 00:56:54,480 --> 00:56:58,517 ARE SHARED, SO IT'S NOT JUST 1707 00:56:58,517 --> 00:57:00,285 THIS FUNDER, IT'S NOT JUST THE 1708 00:57:00,285 --> 00:57:04,990 COMPANY, IT'S NOT JUST THE 1709 00:57:04,990 --> 00:57:06,859 RESEARCHER, I THINK THERE ARE 1710 00:57:06,859 --> 00:57:07,960 SEVERAL EFFORTS IN THE FEEMED TO 1711 00:57:07,960 --> 00:57:09,061 TRY TO ADDRESS THIS PROBLEM, 1712 00:57:09,061 --> 00:57:11,029 THERE'S MORE AWARENESS ARISING 1713 00:57:11,029 --> 00:57:13,365 AMONG COMPANIES, AMONG FUNDERS, 1714 00:57:13,365 --> 00:57:17,669 AMONG OTHERS. 1715 00:57:17,669 --> 00:57:19,204 NIH HAS CERTAIN LEGAL LIMITS, 1716 00:57:19,204 --> 00:57:20,439 LIKE WE'RE NOT ALLOWED TO 1717 00:57:20,439 --> 00:57:22,508 TRANSFER FUNDS AFTER A TRIAL P 1718 00:57:22,508 --> 00:57:23,909 ENDS, FOR EXAMPLE, WHICH POSES 1719 00:57:23,909 --> 00:57:27,780 LIMITATIONS IN WHAT WE CAN -- 1720 00:57:27,780 --> 00:57:29,314 ARE ALLOWED BY LAW TO DO. 1721 00:57:29,314 --> 00:57:31,383 WE ARE LOOKING INTO IT IS WHAT I 1722 00:57:31,383 --> 00:57:31,784 CAN SAY. 1723 00:57:31,784 --> 00:57:32,584 >> GREAT. 1724 00:57:32,584 --> 00:57:34,319 WELL, THANK YOU SO MUCH, SASKIA, 1725 00:57:34,319 --> 00:57:37,189 FOR JOINING US. 1726 00:57:37,189 --> 00:57:39,958 [APPLAUSE] 1727 00:57:39,958 --> 00:57:42,161 AND THOSE WHO ARE HERE ON CAMPUS 1728 00:57:42,161 --> 00:57:43,629 CAN HAVE YOU AS A REFERENCE 1729 00:57:43,629 --> 00:57:44,062 MOVING FORWARD. 1730 00:57:44,062 --> 00:57:45,431 THANK YOU. 1731 00:57:45,431 --> 00:57:46,832 WE'LL MOVE ON TO OUR NEXT 1732 00:57:46,832 --> 00:57:47,399 PRESENTATION. 1733 00:57:47,399 --> 00:57:51,870 IT'S MY PLEASURE TO INTRODUCE 1734 00:57:51,870 --> 00:57:54,606 MARIELLE GROSS, WHO IS JOINING 1735 00:57:54,606 --> 00:57:55,641 US THIS MORNING. 1736 00:57:55,641 --> 00:57:58,010 SHE IS AN ASSISTANT PROFESSOR OF 1737 00:57:58,010 --> 00:58:01,613 BIOETHICS AND RURAL WOMEN'S 1738 00:58:01,613 --> 00:58:03,015 HEALTH AND A RURAL WOMEN'S 1739 00:58:03,015 --> 00:58:04,116 HEALTH PHYSICIAN AT THE 1740 00:58:04,116 --> 00:58:05,050 UNIVERSITY OF PITTSBURGH AND 1741 00:58:05,050 --> 00:58:06,652 JOHNS HOPKINS, SHE STUDIES THE 1742 00:58:06,652 --> 00:58:08,720 ETHICS OF EVIDENCE, INFORMATION 1743 00:58:08,720 --> 00:58:10,255 TECHNOLOGY AND HEALTH DATA 1744 00:58:10,255 --> 00:58:11,990 SUPPLY CHAINS THROUGH THE LENS 1745 00:58:11,990 --> 00:58:14,359 OF STRUCTURAL JUSTICE. 1746 00:58:14,359 --> 00:58:16,028 SHE IS GOING TO TALK WITH US 1747 00:58:16,028 --> 00:58:18,430 TODAY ABOUT ETHICAL ISSUES 1748 00:58:18,430 --> 00:58:20,766 RELATED TO WEARABLES IN 1749 00:58:20,766 --> 00:58:21,033 RESEARCH. 1750 00:58:21,033 --> 00:58:31,543 I'LL HAND IT OVER TO MARIELLE. 1751 00:58:32,010 --> 00:58:34,880 >> THANK YOU, HOLLY. 1752 00:58:34,880 --> 00:58:35,080 HELLO. 1753 00:58:35,080 --> 00:58:36,949 GOOD AFTERNOON, LATE MORNING. 1754 00:58:36,949 --> 00:58:37,950 I'M HAPPY TO BE HERE. 1755 00:58:37,950 --> 00:58:39,485 DOES THAT SOUND GOOD TO 1756 00:58:39,485 --> 00:58:39,785 EVERYBODY? 1757 00:58:39,785 --> 00:58:41,553 I THINK THERE WAS A LITTLE BIT 1758 00:58:41,553 --> 00:58:41,954 OF A -- 1759 00:58:41,954 --> 00:58:43,455 >>> ITS PROBABLY ME, BECAUSE I 1760 00:58:43,455 --> 00:58:45,057 HAVE A MIC, TOO, THERE WAS A 1761 00:58:45,057 --> 00:58:46,592 LITTLE FEEDBACK WHEN I STEPPED 1762 00:58:46,592 --> 00:58:46,758 UP. 1763 00:58:46,758 --> 00:58:52,397 >> OKAY. 1764 00:58:52,397 --> 00:58:53,832 I'M HAPPY TO BE HERE. 1765 00:58:53,832 --> 00:58:55,868 SO BEFORE WE GET INTO TALKING 1766 00:58:55,868 --> 00:58:57,870 WITH ETHICS OF WEARABLES, I JUST 1767 00:58:57,870 --> 00:59:00,172 WANT TO MAKE TWO QUICK 1768 00:59:00,172 --> 00:59:02,441 DISCLOSURES, ISN'T WE WILL ALSO 1769 00:59:02,441 --> 00:59:04,409 GET INTO SOME OF THE SPECIFICS 1770 00:59:04,409 --> 00:59:05,077 OF THE TECHNOLOGIES. 1771 00:59:05,077 --> 00:59:06,979 ONE IS THAT IN ADDITION TO MY 1772 00:59:06,979 --> 00:59:08,714 ROLE AS A PROFESSOR, I ALSO HAVE 1773 00:59:08,714 --> 00:59:10,582 A STARTUP COMPANY THAT'S 1774 00:59:10,582 --> 00:59:12,551 FOCUSING NOT ON ANY OF WEARABLES 1775 00:59:12,551 --> 00:59:14,620 BUT ON SOME OF THE TECHNOLOGIES 1776 00:59:14,620 --> 00:59:16,488 AND THE BLOCKCHAIN SPACE THAT 1777 00:59:16,488 --> 00:59:17,990 HAVE POTENTIAL I THINK TO SOLVE 1778 00:59:17,990 --> 00:59:20,092 SOME OF THE CHALLENGES IN THE 1779 00:59:20,092 --> 00:59:21,727 WEARABLE SPACE, SO I WANTED TO 1780 00:59:21,727 --> 00:59:22,327 DISCLOSE THAT. 1781 00:59:22,327 --> 00:59:23,362 THE OTHER THING THAT OCCURRED TO 1782 00:59:23,362 --> 00:59:24,663 ME AS I WAS PREPARING FOR THIS 1783 00:59:24,663 --> 00:59:26,865 TALK IS THAT MY BROTHER RUNS A 1784 00:59:26,865 --> 00:59:28,834 COMPANY THAT MAKES WEARABLES, 1785 00:59:28,834 --> 00:59:30,035 CALLED INNOVATIVE EYEWEAR AND 1786 00:59:30,035 --> 00:59:31,203 IT'S A SMART GLASSES COMPANY, SO 1787 00:59:31,203 --> 00:59:32,771 I WANTED TO DISCLOSE THAT AS 1788 00:59:32,771 --> 00:59:34,640 WELL, BUT IT CAN ALSO BE A 1789 00:59:34,640 --> 00:59:37,075 SOURCE OF SOME OF THE PERSONAL 1790 00:59:37,075 --> 00:59:38,143 EXPERIENCES THAT I'VE HAD IN 1791 00:59:38,143 --> 00:59:40,445 GROWING UP AROUND THESE 1792 00:59:40,445 --> 00:59:41,213 TECHNOLOGIES AND TRYING TO 1793 00:59:41,213 --> 00:59:43,415 FIGURE OUT HOW TO DO GOOD WITH 1794 00:59:43,415 --> 00:59:44,716 THEM, AS WELL AS SOME OF THE 1795 00:59:44,716 --> 00:59:53,025 INHERENT CHALLENGES. 1796 00:59:53,025 --> 00:59:54,993 SO THE FASCINATING THING ABOUT 1797 00:59:54,993 --> 00:59:59,264 WEARABLES IS THAT THEY'RE REALLY 1798 00:59:59,264 --> 01:00:00,599 INTERTWINED WITH THE HUMAN 1799 01:00:00,599 --> 01:00:02,401 EXPERIENCE, AND THEY DATE FAR 1800 01:00:02,401 --> 01:00:04,536 BACK BEFORE THE SORT OF DIGITAL 1801 01:00:04,536 --> 01:00:06,171 WEARABLES THAT WE TEND ON THINK 1802 01:00:06,171 --> 01:00:06,905 OF. 1803 01:00:06,905 --> 01:00:07,105 RIGHT? 1804 01:00:07,105 --> 01:00:09,341 OUR SHOES, OUR GLASSES. 1805 01:00:09,341 --> 01:00:12,077 THESE ITEMS ARE WEARABLE 1806 01:00:12,077 --> 01:00:13,946 TECHNOLOGY, AND IN FACT, THEIR 1807 01:00:13,946 --> 01:00:17,916 PERMANENCE AND EMBEDDEDNESS IN 1808 01:00:17,916 --> 01:00:19,418 OUR LIVES AND OUR EXPERIENCES 1809 01:00:19,418 --> 01:00:21,086 AND SORT OF OUR RELIANCE UPON 1810 01:00:21,086 --> 01:00:25,891 THEM, RIGHT, YOU MIGHT THINK 1811 01:00:25,891 --> 01:00:26,892 ABOUT ALL THE THINGS THAT WE 1812 01:00:26,892 --> 01:00:28,794 JUST TALKED ABOUT IN LIGHT OF 1813 01:00:28,794 --> 01:00:30,696 BRAIN IMPLANTS ALSO PROBABLY 1814 01:00:30,696 --> 01:00:32,898 APPLY TO GLASSES, RIGHT, WHICH 1815 01:00:32,898 --> 01:00:36,501 IS SEEMINGLY FAR LESS INVASIVE, 1816 01:00:36,501 --> 01:00:40,339 BUT SOME OF THE MORAL ATTENTIONS 1817 01:00:40,339 --> 01:00:41,974 AND BENEFITS AND RISKS ARE 1818 01:00:41,974 --> 01:00:50,549 REALLY QUITE SIMILAR. 1819 01:00:50,549 --> 01:00:52,084 FUNDAMENTAL, BASIC PRINCIPLES, 1820 01:00:52,084 --> 01:00:52,851 THINKING ABOUT WEARABLES AND 1821 01:00:52,851 --> 01:00:54,186 WHAT WE'RE TALKING ABOUT TODAY, 1822 01:00:54,186 --> 01:00:55,153 WE'RE REALLY THINKING ABOUT 1823 01:00:55,153 --> 01:00:56,488 ADDING TO THE FACT THAT THEY'RE 1824 01:00:56,488 --> 01:00:57,889 BEING WORN, THAT THEY'RE 1825 01:00:57,889 --> 01:00:58,857 COMPUTATIONAL DEVICES, THAT THEY 1826 01:00:58,857 --> 01:01:00,826 HAVE EMBEDDED DIGITAL 1827 01:01:00,826 --> 01:01:02,361 TECHNOLOGIES, KEY FEATURES OF 1828 01:01:02,361 --> 01:01:03,562 THESE TECHNOLOGIES ARE THAT 1829 01:01:03,562 --> 01:01:06,531 THEY'RE ALWAYS THERE, THEY'RE ON 1830 01:01:06,531 --> 01:01:08,266 THE PRESENT, THEY'RE 1831 01:01:08,266 --> 01:01:09,234 CONTINUOUSLY COLLECTING DATA, 1832 01:01:09,234 --> 01:01:10,335 THEY CAN TRANSMIT THAT DATA, 1833 01:01:10,335 --> 01:01:11,770 THEY CAN USE THAT DATA FOR 1834 01:01:11,770 --> 01:01:13,205 ANALYSIS, THEY CAN HAVE OTHER 1835 01:01:13,205 --> 01:01:15,707 FEATURES THAT RELATE TO BOTH, 1836 01:01:15,707 --> 01:01:18,677 YOU KNOW, IMPUTING THAT DATA FOR 1837 01:01:18,677 --> 01:01:22,147 PREDICTION AS WELL AS FOR 1838 01:01:22,147 --> 01:01:25,450 INTERVENTIONAL PURPOSES AND 1839 01:01:25,450 --> 01:01:26,551 TYPICALLY AND CERTAINLY MOST 1840 01:01:26,551 --> 01:01:28,286 COMMONLY RESEARCH CONTEXTS THESE 1841 01:01:28,286 --> 01:01:29,721 WEARABLES ARE TYPICALLY THIRD 1842 01:01:29,721 --> 01:01:30,722 PARTY CONSUMER ELECTRONICS, 1843 01:01:30,722 --> 01:01:32,457 ALTHOUGH SOMETIMES ALSO MEDICAL 1844 01:01:32,457 --> 01:01:33,325 DEVICES, AND I THINK THAT 1845 01:01:33,325 --> 01:01:34,760 THERE'S A REALLY IMPORTANT 1846 01:01:34,760 --> 01:01:44,069 DISTINCTION THAT WE'LL GET INTO. 1847 01:01:44,069 --> 01:01:46,238 SO I THOUGHT TO THINK ABOUT 1848 01:01:46,238 --> 01:01:47,339 WEARABLES REALLY DEEPLY AND 1849 01:01:47,339 --> 01:01:48,740 ETHICALLY ABOUT HOW WE'RE DOING 1850 01:01:48,740 --> 01:01:49,875 RESEARCH ON WEARABLES, I THOUGHT 1851 01:01:49,875 --> 01:01:51,043 WE COULD STEP BACK AND THINK 1852 01:01:51,043 --> 01:01:52,577 ABOUT, WHAT DOES IT MEAN REALLY 1853 01:01:52,577 --> 01:01:57,516 TO WEAR SOMETHING AND TO HAVE IT 1854 01:01:57,516 --> 01:01:58,183 ON YOURSELF? 1855 01:01:58,183 --> 01:01:59,818 THESE ARE THE STANDARD 1856 01:01:59,818 --> 01:02:00,786 DEFINITIONS, YOU KNOW, TO CARRY 1857 01:02:00,786 --> 01:02:02,454 OR TO HAVE ON ONE'S PERSON, I 1858 01:02:02,454 --> 01:02:04,322 THINK CRITICALLY AS A COVERING 1859 01:02:04,322 --> 01:02:07,025 SHES AN ADORNMENT OR AS 1860 01:02:07,025 --> 01:02:08,560 PROTECTION -- COVERING, AS AN 1861 01:02:08,560 --> 01:02:09,895 ADORNMENT OR AS PROTECTION. 1862 01:02:09,895 --> 01:02:11,296 SOMETHING TO BE CARRIED 1863 01:02:11,296 --> 01:02:13,065 HABITUALLY ON OUR PERSON, LIKE 1864 01:02:13,065 --> 01:02:14,266 WE WEAR GLASSES, AND SOMETHING 1865 01:02:14,266 --> 01:02:17,135 TO DISPLAY ON ONE'S APPEARANCE 1866 01:02:17,135 --> 01:02:19,404 AS IN TO WEAR A SMILE. 1867 01:02:19,404 --> 01:02:20,405 INTERESTINGLY IN REALLY THINKING 1868 01:02:20,405 --> 01:02:21,740 ABOUT THIS AND SOME OF THE 1869 01:02:21,740 --> 01:02:23,141 ETHICAL CHALLENGES INJURED LYING 1870 01:02:23,141 --> 01:02:25,343 RESEARCH AND ETHICS AROUND 1871 01:02:25,343 --> 01:02:28,747 WEARABLES, THERE'S ANOTHER 1872 01:02:28,747 --> 01:02:31,149 IMPORTANT NEENG THE WORD -- 1873 01:02:31,149 --> 01:02:32,684 NEENG THE WORD TO WEAR, AND THAT 1874 01:02:32,684 --> 01:02:34,820 IS REALLY TO WEAR DOWN OR TO 1875 01:02:34,820 --> 01:02:36,621 ERODE AND I THINK THERE'S A 1876 01:02:36,621 --> 01:02:37,622 REALLY POWERFUL INTERPLAY 1877 01:02:37,622 --> 01:02:41,126 BETWEEN THESE CONCEPTS OF BOTH 1878 01:02:41,126 --> 01:02:42,527 ENHANCEMENT, PROTECTION, ALMOST 1879 01:02:42,527 --> 01:02:45,130 AS AN ARMOR, RIGHT, OUR SHOES 1880 01:02:45,130 --> 01:02:46,565 ARE A WEARABLE THAT PROTECT US 1881 01:02:46,565 --> 01:02:48,767 AS WE GO AROUND THE WORLD, AND 1882 01:02:48,767 --> 01:02:50,836 YET HOW WEARING ON SOMEBODY CAN 1883 01:02:50,836 --> 01:02:52,804 ALSO BREAK THEM DOWN AND CAN 1884 01:02:52,804 --> 01:02:55,540 TAKE AWAY AND BE A WAY OF SORT 1885 01:02:55,540 --> 01:02:57,843 OF SUBLGHTSLY AND OVER TIME -- 1886 01:02:57,843 --> 01:03:00,011 SUBTLY AND OVER TIME DIMINISHING 1887 01:03:00,011 --> 01:03:01,880 CERTAIN FEATURES LIKE AUTONOMY 1888 01:03:01,880 --> 01:03:07,185 AND POWER. 1889 01:03:07,185 --> 01:03:08,820 SO TO FRAME OUR DISCUSSION, I 1890 01:03:08,820 --> 01:03:14,726 THINK THERE'S REALLY THREE KEY 1891 01:03:14,726 --> 01:03:16,261 TAXONOMIES OF WEARABLE DEVICES 1892 01:03:16,261 --> 01:03:18,130 IN A DIGITAL CONTEXT THAT I LIKE 1893 01:03:18,130 --> 01:03:18,997 TO THINK ABOUT. 1894 01:03:18,997 --> 01:03:22,834 THE FIRST ONE RELIES ON 1895 01:03:22,834 --> 01:03:23,802 LOCATION, LIKE LOCATION, 1896 01:03:23,802 --> 01:03:25,337 LOCATION, LOCATION, THAT'S THE 1897 01:03:25,337 --> 01:03:27,305 GPS TRACKER THAT'S IN ALL OF OUR 1898 01:03:27,305 --> 01:03:28,640 PHONES, WE MIGHT SAY WE'RE 1899 01:03:28,640 --> 01:03:30,375 WEARING IT NOW IF WE HAVE OUR 1900 01:03:30,375 --> 01:03:32,344 SMARTPHONES IN OUR POCKETS. 1901 01:03:32,344 --> 01:03:33,979 THESE ARE APPS, THEY COULD BE 1902 01:03:33,979 --> 01:03:36,948 ANKLE AND WRIST BRACELETS 1903 01:03:36,948 --> 01:03:38,150 TRADITIONALLY FOR KEEPING A PET 1904 01:03:38,150 --> 01:03:40,552 OR A PRISONER IN A CERTAIN 1905 01:03:40,552 --> 01:03:43,288 LOCATION, THOSE ARE WEARABLE 1906 01:03:43,288 --> 01:03:45,490 DEVICES, THEY CAN TRANSMIT 1907 01:03:45,490 --> 01:03:46,591 GEOLOCATION, TYPICALLY TO THIRD 1908 01:03:46,591 --> 01:03:48,226 PARTIES WHO MIGHT ENFORCE SOME 1909 01:03:48,226 --> 01:03:50,328 SORT OF PARAMETERS OR MIGHT USE 1910 01:03:50,328 --> 01:03:53,732 THAT INFORMATION ON INFORM HOW 1911 01:03:53,732 --> 01:03:57,002 THEY POLICE THAT PERSON'S 1912 01:03:57,002 --> 01:03:59,070 ACTIVITY H ANOTHER MAJOR 1913 01:03:59,070 --> 01:04:01,573 CATEGORY IS IN BIOMETRIC 1914 01:04:01,573 --> 01:04:01,907 SURVEILLANCE. 1915 01:04:01,907 --> 01:04:04,976 SO THESE ARE THE TECHNOLOGIES 1916 01:04:04,976 --> 01:04:05,944 HIGHLY ADVANCED ESPECIALLY OVER 1917 01:04:05,944 --> 01:04:07,379 THE PAST FIVE YEARS AND I THINK 1918 01:04:07,379 --> 01:04:09,815 WE CAN ANTICIPATE THE NEXT FIVE 1919 01:04:09,815 --> 01:04:12,117 YEARS AS OUR SENSOR TECHNOLOGY 1920 01:04:12,117 --> 01:04:12,450 ADVANCES. 1921 01:04:12,450 --> 01:04:14,853 THESE ARE CAPTURING BIOMETRIC 1922 01:04:14,853 --> 01:04:16,822 BIOLOGICAL DATA THAT CAN BE 1923 01:04:16,822 --> 01:04:17,889 ELECTRONIC, ELECTRIC DATA, LIKE 1924 01:04:17,889 --> 01:04:19,791 A HEART RATE, IT CAN ALSO BE 1925 01:04:19,791 --> 01:04:21,626 CHEMICAL AND CHEMICALLY SENSED 1926 01:04:21,626 --> 01:04:23,161 AND WHETHER THAT'S, YOU KNOW, 1927 01:04:23,161 --> 01:04:25,797 FROM THE SWEAT ON YOUR SKIN OR 1928 01:04:25,797 --> 01:04:28,633 FROM A SMALL AMOUNT OF BLOOD 1929 01:04:28,633 --> 01:04:32,070 THAT CAN JUST PROVIDE A CHEMO 1930 01:04:32,070 --> 01:04:38,410 SENSATION TO DETECT DIFFERENT 1931 01:04:38,410 --> 01:04:39,845 ANALITE SNRKS YOUR BLOOD, THESE 1932 01:04:39,845 --> 01:04:41,046 ARE BIOLOGICAL DATA ABOUT THAT 1933 01:04:41,046 --> 01:04:42,147 YOU'RE BEING SENSED. 1934 01:04:42,147 --> 01:04:43,315 THEN THERE'S THIS THIRD 1935 01:04:43,315 --> 01:04:44,749 CATEGORY, WHICH INCLUDES VIDEOS, 1936 01:04:44,749 --> 01:04:47,919 IMAGES AND AUDIO CAP CAPTURE, 1937 01:04:47,919 --> 01:04:50,121 RANGING FROM THINGS LIKE BODY 1938 01:04:50,121 --> 01:04:51,423 CAMERAS, THE SMART GLASSES LIKE 1939 01:04:51,423 --> 01:04:53,458 I WAS DESCRIBING MY BROTHER'S 1940 01:04:53,458 --> 01:04:53,692 COMPANY. 1941 01:04:53,692 --> 01:04:55,994 THESE ARE REALLY CAPTURING, I 1942 01:04:55,994 --> 01:04:57,095 WAS THINKING ABOUT THIS, HAD 1943 01:04:57,095 --> 01:05:00,365 IT'S NOT JUST SENSING YOU, BUT 1944 01:05:00,365 --> 01:05:02,534 SENSING WHAT YOU SENSE AND 1945 01:05:02,534 --> 01:05:04,936 SENSING YOUR BOTH BEHAVIORAL AND 1946 01:05:04,936 --> 01:05:05,537 SOCIOLOGICAL CONTEXT. 1947 01:05:05,537 --> 01:05:07,138 SO THESE ARE SORT OF THREE 1948 01:05:07,138 --> 01:05:08,573 DIFFERENT DIMENSIONS, AND OF 1949 01:05:08,573 --> 01:05:09,975 COURSE MANY DEVICES WILL SEEK TO 1950 01:05:09,975 --> 01:05:12,277 AND IN SOME WAYS COMBINE 1951 01:05:12,277 --> 01:05:13,478 DIFFERENT COMPONENTS ALONG THIS 1952 01:05:13,478 --> 01:05:15,447 SORT OF TAXONOMY, BUT I THINK 1953 01:05:15,447 --> 01:05:17,749 WHEN WE'RE CONSIDERING THE 1954 01:05:17,749 --> 01:05:19,284 ETHICAL IMPLICATIONS AS WELL AS 1955 01:05:19,284 --> 01:05:20,919 THE RISKS AND POTENTIAL BENEFITS 1956 01:05:20,919 --> 01:05:22,354 OF THESE TECHNOLOGIES, REALLY 1957 01:05:22,354 --> 01:05:23,989 THINKING ABOUT THEM ALONG THESE 1958 01:05:23,989 --> 01:05:30,095 THREE LINES CAN BE HELPFUL. 1959 01:05:30,095 --> 01:05:32,063 NOW, I SHOULD SAY BEFORE WE GET 1960 01:05:32,063 --> 01:05:36,001 INTO ANY MORE ETHICAL 1961 01:05:36,001 --> 01:05:37,535 CONSIDERATIONS AND CONCERNS 1962 01:05:37,535 --> 01:05:39,738 PERHAPS THAT I'LL RAISE, I THINK 1963 01:05:39,738 --> 01:05:44,309 IT'S VERY IMPORTANT TO RECOGNIZE 1964 01:05:44,309 --> 01:05:46,411 THE SUBSTANTIAL EXPANSION OF 1965 01:05:46,411 --> 01:05:49,481 WEARABLE TECHNOLOGIES OR SORT OF 1966 01:05:49,481 --> 01:05:51,082 DIGITALLY IMBUED WEARABLE 1967 01:05:51,082 --> 01:05:52,517 TECHNOLOGIES HA WE'RE ALREADY 1968 01:05:52,517 --> 01:05:54,486 EXPERIENCING AND THAT WE CAN 1969 01:05:54,486 --> 01:05:55,921 ANTICIPATE CONTINUING TO 1970 01:05:55,921 --> 01:05:56,221 EXPERIENCE. 1971 01:05:56,221 --> 01:05:59,024 SO FOR EXAMPLE, LAST YEAR, FOR 1972 01:05:59,024 --> 01:06:00,959 THE FIRST TIME, MORE 1973 01:06:00,959 --> 01:06:03,929 SMARTWATCHES WERE SOLD THAN 1974 01:06:03,929 --> 01:06:04,296 NONSMARTWATCHES. 1975 01:06:04,296 --> 01:06:07,632 AND IN FACT, APPLE SOLD MORE 1976 01:06:07,632 --> 01:06:11,503 WATCHES THAN ALL OF SWITZERLAND. 1977 01:06:11,503 --> 01:06:13,238 THIS IS REALLY TREMENDOUSLY 1978 01:06:13,238 --> 01:06:15,440 IMPACTFUL WHEN YOU THINK ABOUT 1979 01:06:15,440 --> 01:06:19,177 HOW THESE TECHNOLOGIES, WHEN 1980 01:06:19,177 --> 01:06:21,046 THEY'RE REALLY CRITICALLY WHEN 1981 01:06:21,046 --> 01:06:22,814 THEIR FORM FACTOR IS RIGHT AND 1982 01:06:22,814 --> 01:06:24,749 WHEN THEY'RE CULTURALLY 1983 01:06:24,749 --> 01:06:25,951 APPROPRIATED BY PEOPLE, HOW 1984 01:06:25,951 --> 01:06:27,285 RAPIDLY THEY CAN REALLY BE 1985 01:06:27,285 --> 01:06:28,586 ADOPTED, RIGHT? 1986 01:06:28,586 --> 01:06:29,788 SMARTWATCHES WERE NOT A NEW 1987 01:06:29,788 --> 01:06:31,323 THING LAST YEAR. 1988 01:06:31,323 --> 01:06:33,525 IT WAS JUST THE PAST COUPLE OF 1989 01:06:33,525 --> 01:06:35,393 YEARS THERE'S BEEN A TREMENDOUS 1990 01:06:35,393 --> 01:06:38,229 UPTICK IN THEIR ADOPTION AND 1991 01:06:38,229 --> 01:06:39,197 NORMALIZATION WHEN YOU GET 1992 01:06:39,197 --> 01:06:41,199 SOMETHING LIKE A WATCH THAT'S 1993 01:06:41,199 --> 01:06:43,501 BEEN AROUND FOR MANY, MANY YEARS 1994 01:06:43,501 --> 01:06:45,036 AND YOU IMBUE IT WITH NEW 1995 01:06:45,036 --> 01:06:46,905 TECHNOLOGIES THAT CAN BE 1996 01:06:46,905 --> 01:06:48,640 EMPOWERED BY SMALLER AND LIGHTER 1997 01:06:48,640 --> 01:06:51,409 BATTERIES AND MORE SORT OF 1998 01:06:51,409 --> 01:06:53,378 COMPUTING, YOU KNOW, THE ABILITY 1999 01:06:53,378 --> 01:06:56,047 TO DO PRETTY ADVANCED COMPUTING 2000 01:06:56,047 --> 01:06:57,849 IN A SMALL DISTRIBUTED DEVICE 2001 01:06:57,849 --> 01:06:59,617 HAS DRAMATICALLY CHANGED. SO 2002 01:06:59,617 --> 01:07:01,386 FOR THAT REASON, WE THINK ABOUT 2003 01:07:01,386 --> 01:07:02,787 THE IMPACT ON THE WATCH 2004 01:07:02,787 --> 01:07:03,888 INDUSTRY, RIGHT, MANY PEOPLE 2005 01:07:03,888 --> 01:07:04,990 DON'T WEAR WATCHES ANYMORE 2006 01:07:04,990 --> 01:07:06,291 BECAUSE WE DON'T NEED THEM TO 2007 01:07:06,291 --> 01:07:08,927 TELL TIME, AND INDEED, PEOPLE 2008 01:07:08,927 --> 01:07:10,462 WHO WEAR SMARTWATCHES OFTEN 2009 01:07:10,462 --> 01:07:11,963 AREN'T USING THEM TO TELL TIME. 2010 01:07:11,963 --> 01:07:13,932 THEY'RE USING THEM FOR THEIR 2011 01:07:13,932 --> 01:07:15,100 OTHER FUNCTIONALITY, FOR THE 2012 01:07:15,100 --> 01:07:16,134 DATA THAT THEY CAN GET FROM 2013 01:07:16,134 --> 01:07:16,501 THEM. 2014 01:07:16,501 --> 01:07:18,903 SO I KIND OF GO INTO THIS WHOLE, 2015 01:07:18,903 --> 01:07:21,406 YOU KNOW, CONTEXT OF THE 2016 01:07:21,406 --> 01:07:24,909 SMARTWATCH BECAUSE THESE DEVICES 2017 01:07:24,909 --> 01:07:26,978 ARE GOING TO BE MAJOR IN TERMS 2018 01:07:26,978 --> 01:07:28,947 OF THE NEXT TEN TO TWENTY YEARS 2019 01:07:28,947 --> 01:07:30,815 IN TERMS OF LIKE IF WE THINK 2020 01:07:30,815 --> 01:07:32,884 ABOUT ALL OF OUR WEARABLES, ALL 2021 01:07:32,884 --> 01:07:35,220 OF OUR TRADITIONAL WEARABLES 2022 01:07:35,220 --> 01:07:36,955 BECOMING SMART DEVICES OR HAVING 2023 01:07:36,955 --> 01:07:39,157 THE ABILITY TO BE SMART DEVICES, 2024 01:07:39,157 --> 01:07:40,458 THE IMPLICATIONS AND THE 2025 01:07:40,458 --> 01:07:41,993 SIGNIFICANCE OF BOTH WHAT WE CAN 2026 01:07:41,993 --> 01:07:43,028 LEARN AND THE POWER OF WHAT WE 2027 01:07:43,028 --> 01:07:44,629 CAN LEARN FROM THAT INFORMATION 2028 01:07:44,629 --> 01:07:47,265 TO HELP PEOPLE TO ADVANCE 2029 01:07:47,265 --> 01:07:48,033 RESEARCH, THIS IS REALLY 2030 01:07:48,033 --> 01:07:49,768 CRITICAL TOO. 2031 01:07:49,768 --> 01:07:51,136 SO WHILE WHEN YOU'RE PRESENTING 2032 01:07:51,136 --> 01:07:52,837 ON THE ETHICS AND THE 2033 01:07:52,837 --> 01:07:53,805 CHALLENGES, I THINK THAT THAT 2034 01:07:53,805 --> 01:07:57,275 CAN GET LOST, AND I THINK IT'S 2035 01:07:57,275 --> 01:07:59,611 REALLY CRITICAL THAT THEY WI -- 2036 01:07:59,611 --> 01:08:00,845 THAT WE THINK ABOUT THE DESIGN 2037 01:08:00,845 --> 01:08:02,914 AND THE TECHNOLOGY ENABLEMENTS 2038 01:08:02,914 --> 01:08:06,184 OF WEARABLE TECHNOLOGY TO -- AS 2039 01:08:06,184 --> 01:08:07,018 A REALLY IMPORTANT OPPORTUNITY 2040 01:08:07,018 --> 01:08:09,554 AND ONE THAT'S NOT 2041 01:08:09,554 --> 01:08:10,221 UNCOMPLICATED, AND I THINK 2042 01:08:10,221 --> 01:08:11,656 CERTAINLY WHEN WE COMPARE TO 2043 01:08:11,656 --> 01:08:13,958 WHAT SOME PEOPLE WILL CALL AN 2044 01:08:13,958 --> 01:08:16,027 INSIDABLE, LIKE A BRAIN 2045 01:08:16,027 --> 01:08:18,329 IMPLANTED DEVICE, A WEARABLE, 2046 01:08:18,329 --> 01:08:20,532 WHICH HAS INHERENTLY MUCH LESS 2047 01:08:20,532 --> 01:08:24,569 FRICTION TO BE ADOPTED, HAS A 2048 01:08:24,569 --> 01:08:26,671 POTENTIAL FOR FAR GREATER AND 2049 01:08:26,671 --> 01:08:31,910 MORE SORT OF DISTRIBUTION AND 2050 01:08:31,910 --> 01:08:33,678 IMPLEMENTATION BECAUSE YOU DON'T 2051 01:08:33,678 --> 01:08:35,613 NEED A NEUROSURGERY TEAM AND A 2052 01:08:35,613 --> 01:08:40,318 NEUROLOGICAL TEAM, AND IT'S A 2053 01:08:40,318 --> 01:08:41,920 LOT EASIER TO APPLY THESE THINGS 2054 01:08:41,920 --> 01:08:43,455 AND IN FACT THAT'S PART OF THEIR 2055 01:08:43,455 --> 01:08:43,688 DESIGN. 2056 01:08:43,688 --> 01:08:47,358 SO THINKING ABOUT THE DESIGN OF 2057 01:08:47,358 --> 01:08:48,593 WEARABLES IS REALLY I THINK 2058 01:08:48,593 --> 01:08:50,128 WHERE THE ETHICS HAVE TO CENTER 2059 01:08:50,128 --> 01:08:57,068 ON THE DESIGN BECAUSE WEARABLES 2060 01:08:57,068 --> 01:08:58,536 ARE IN MANY WAYS DESIGNED TO BE 2061 01:08:58,536 --> 01:09:00,772 EASY TO APPLY WITH A FORM FACTOR 2062 01:09:00,772 --> 01:09:03,708 THAT MATCHES THE HUMAN BODY AND 2063 01:09:03,708 --> 01:09:05,009 OUR ERGONOMICS AND DYNAMICS OF 2064 01:09:05,009 --> 01:09:09,280 OUR MOVEMENTS, AND THEIR SUCCESS 2065 01:09:09,280 --> 01:09:11,483 IS REALLY PARALLELED WITH HOW 2066 01:09:11,483 --> 01:09:13,218 COMFORTABLY AND EASY WE CAN PUT 2067 01:09:13,218 --> 01:09:15,854 THEM ON, AND AT THE SAME TIME, 2068 01:09:15,854 --> 01:09:19,124 YOU KNOW, WHEN DONE WELL, THEY 2069 01:09:19,124 --> 01:09:20,225 RECEDE INTO THE BACKGROUND AND 2070 01:09:20,225 --> 01:09:21,359 YOU FORGET THAT THEY'RE THERE. 2071 01:09:21,359 --> 01:09:23,061 SO WHILE THE FRICTION TO SORT OF 2072 01:09:23,061 --> 01:09:25,797 ADOPT THEM MIGHT BE SOMEWHAT 2073 01:09:25,797 --> 01:09:26,998 LOW, WHEN THEY'RE DESIGNED 2074 01:09:26,998 --> 01:09:28,333 RIGHT, WE FORGET THAT WE'RE 2075 01:09:28,333 --> 01:09:29,968 WEARING THEM OR THEY JUST BECOME 2076 01:09:29,968 --> 01:09:31,936 IN MANY WAYS SIMILAR TO WHAT YOU 2077 01:09:31,936 --> 01:09:34,105 WOULD CONSIDER FOR AN IMPLANTED 2078 01:09:34,105 --> 01:09:36,307 DEVICE PART OF THAT PERSON AND 2079 01:09:36,307 --> 01:09:41,112 REALLY, YOU KNOW, I TAKE 2080 01:09:41,112 --> 01:09:43,548 SERIOUSLY MARSHA McCLUNE'S 2081 01:09:43,548 --> 01:09:44,749 ASSESSMENT THAT THESE 2082 01:09:44,749 --> 01:09:45,950 TECHNOLOGIES BECOME AN EXTENSION 2083 01:09:45,950 --> 01:09:46,918 OF OURSELVES, WHETHER THEY'RE 2084 01:09:46,918 --> 01:09:48,586 INSIDE OF OUR BODIES OR SIMPLY 2085 01:09:48,586 --> 01:09:49,454 APPLIED ON THE OUTSIDE OR 2086 01:09:49,454 --> 01:09:51,189 SOMEWHERE IN BETWEEN AS SOME OF 2087 01:09:51,189 --> 01:09:53,391 OUR, YOU KNOW, DEVICES IN THE 2088 01:09:53,391 --> 01:09:57,996 GYNECOLOGICAL SPACE MIGHT BE 2089 01:09:57,996 --> 01:10:00,198 CONSIDERED SO WE HAVE THESE 2090 01:10:00,198 --> 01:10:01,499 THREE TAXON MS. ON THE TYPES OF 2091 01:10:01,499 --> 01:10:02,467 DATA THAT ARE BEING COLLECTED 2092 01:10:02,467 --> 01:10:04,702 AND THERE'S THREE REALLY I THINK 2093 01:10:04,702 --> 01:10:05,904 KEY ETHICAL CONSIDERATIONS, 2094 01:10:05,904 --> 01:10:09,941 THEY'RE ALL WEAVING INTO ONE 2095 01:10:09,941 --> 01:10:11,242 ANOTHER AND THERE'S 2096 01:10:11,242 --> 01:10:12,110 CORRESPONDING DESIGN FEATURES WE 2097 01:10:12,110 --> 01:10:13,311 CAN THINK ABOUT TO FRAME THE 2098 01:10:13,311 --> 01:10:18,383 REST OF OUR CONVERSATION. 2099 01:10:18,383 --> 01:10:20,485 THE FIRST IS PRIVACY AND 2100 01:10:20,485 --> 01:10:21,986 AUTONOMY AND I THINK THIS IS 2101 01:10:21,986 --> 01:10:23,688 REALLY WHERE I WILL LEAD THE 2102 01:10:23,688 --> 01:10:24,656 CONVERSATION TOWARDS ANGD OF 2103 01:10:24,656 --> 01:10:26,191 WEARABLE DEVICES AS SORT OF 2104 01:10:26,191 --> 01:10:27,325 DECEPTIVELY INVASIVE. 2105 01:10:27,325 --> 01:10:29,694 AGAIN, BY DESIGN. 2106 01:10:29,694 --> 01:10:31,129 THEY'RE SEEMINGLY EASY TO PUT 2107 01:10:31,129 --> 01:10:35,066 ON, AND YET THEY SEEM LIKE 2108 01:10:35,066 --> 01:10:35,867 NONINVASIVE, CERTAINLY WHEN YOU 2109 01:10:35,867 --> 01:10:39,003 COMPARE THEM TO SOMETHING LIKE A 2110 01:10:39,003 --> 01:10:42,507 BRAIN SURGERY AND YET I THINK 2111 01:10:42,507 --> 01:10:43,374 THERE'S IMPORTANT WAYS IN WHICH 2112 01:10:43,374 --> 01:10:45,009 WE CAN CONSIDER THEM AS 2113 01:10:45,009 --> 01:10:46,344 POTENTIALLY MORE INVASIVE 2114 01:10:46,344 --> 01:10:47,645 DEPENDING ON WHAT KIND OF DATA 2115 01:10:47,645 --> 01:10:50,481 THEY'RE COLLECTING AND FOR HOW 2116 01:10:50,481 --> 01:10:53,017 LONG AND HOW THAT DATA MIGHT BE 2117 01:10:53,017 --> 01:10:53,218 USED. 2118 01:10:53,218 --> 01:10:55,320 SO THE WHOLE CONCEPT OF PRIVACY 2119 01:10:55,320 --> 01:10:56,821 AND AUTONOMY, ESPECIALLY WHEN 2120 01:10:56,821 --> 01:10:58,356 YOU CONSIDER HISTORICAL CONTEXT 2121 01:10:58,356 --> 01:11:00,992 OF WEARABLES BEING USED TO 2122 01:11:00,992 --> 01:11:02,961 CONTROL PEOPLE'S AUTONOMY, THIS 2123 01:11:02,961 --> 01:11:05,463 IS NOT ZUS A POLITICAL SENSE -- 2124 01:11:05,463 --> 01:11:06,664 THIS IS NOT JUST IN A POLITICAL 2125 01:11:06,664 --> 01:11:07,932 SENSE BUT ALSO IN A PANDEMIC 2126 01:11:07,932 --> 01:11:10,101 SENSE OR IN A NUMBER OF OTHER 2127 01:11:10,101 --> 01:11:11,202 CONTEXTS, THE POTENTIAL FOR 2128 01:11:11,202 --> 01:11:14,906 THESE DEVICES TO ESSENTIALLY 2129 01:11:14,906 --> 01:11:17,008 INTRUDE ON IN THE BACKGROUND OF 2130 01:11:17,008 --> 01:11:19,644 ALL ACTIVITIES IS REALLY 2131 01:11:19,644 --> 01:11:19,944 SUBSTANTIAL. 2132 01:11:19,944 --> 01:11:21,379 THIS IS BY THEIR NATURE, AND 2133 01:11:21,379 --> 01:11:22,480 AGAIN, WHEN THEY'RE DESIGNED 2134 01:11:22,480 --> 01:11:23,915 RIGHT, THEY DO THIS REALLY WELL, 2135 01:11:23,915 --> 01:11:25,550 AND WE FORGET THAT THEY'RE 2136 01:11:25,550 --> 01:11:25,750 THERE. 2137 01:11:25,750 --> 01:11:29,220 IN FACT, ONE OF THE DOWNSIDES OF 2138 01:11:29,220 --> 01:11:30,688 SOME OF THE APPLICATIONS OF 2139 01:11:30,688 --> 01:11:31,556 THESE TECHNOLOGIES HAS BEEN IN 2140 01:11:31,556 --> 01:11:33,992 PEOPLE SIMPLY REMOVING THINGS OR 2141 01:11:33,992 --> 01:11:35,727 PERHAPS FOR GETTING THAT THEY, 2142 01:11:35,727 --> 01:11:36,961 YOU KNOW, IF THEIR SMARTPHONE IS 2143 01:11:36,961 --> 01:11:38,229 THE WEARABLE, IT'S EASY TO LEAVE 2144 01:11:38,229 --> 01:11:39,397 THAT ON A COUNTER AND WALK OUT 2145 01:11:39,397 --> 01:11:40,865 OF THE ROOM, AND THAT TELLS YOU 2146 01:11:40,865 --> 01:11:42,834 SOMETHING ABOUT WHAT WE CAN 2147 01:11:42,834 --> 01:11:44,569 ANTICIPATE WITH THE FUTURE OF 2148 01:11:44,569 --> 01:11:47,105 MOBILE COMPUTING DEVICES BEING 2149 01:11:47,105 --> 01:11:48,506 MORE TOWARDS WEARABLES AND LESS 2150 01:11:48,506 --> 01:11:49,907 TOWARDS THE KINDS OF THINGS THAT 2151 01:11:49,907 --> 01:11:51,643 YOU COULD LEAVE ON A COUNTER. 2152 01:11:51,643 --> 01:11:53,778 THEY WANT IT ON OUR BODIES AS 2153 01:11:53,778 --> 01:11:55,413 MUCH AS POSSIBLE TO, AGAIN, 2154 01:11:55,413 --> 01:11:56,614 MAXIMIZE THE POE TECIALG FOR 2155 01:11:56,614 --> 01:11:58,483 BENEFIT AND TO COLLECT -- 2156 01:11:58,483 --> 01:12:00,118 POTENTIAL FOR BENEFIT AND TO 2157 01:12:00,118 --> 01:12:01,452 COLLECT DATA PASSIVELY AND AT 2158 01:12:01,452 --> 01:12:03,388 THE SAME TIME MAXIMIZING THE 2159 01:12:03,388 --> 01:12:05,290 INTRUSIVENESS AND THE SORT OF 2160 01:12:05,290 --> 01:12:07,358 POTENTIAL FOR INVASION INTO OUR 2161 01:12:07,358 --> 01:12:10,295 PRIVATE LIVES. 2162 01:12:10,295 --> 01:12:12,163 THE SECOND WHOLE CATEGORY I 2163 01:12:12,163 --> 01:12:15,099 CONSIDER EMBEDDED BIAS. 2164 01:12:15,099 --> 01:12:17,869 SO THIS IS A STRUCTURALLY BUILT 2165 01:12:17,869 --> 01:12:19,437 IN FEATURE THAT CAN BE BOTH ON 2166 01:12:19,437 --> 01:12:22,440 THE LEVEL OF A DEVICE ITSELF, AS 2167 01:12:22,440 --> 01:12:24,509 IN WHO IT WAS BUILT FOR, FOR 2168 01:12:24,509 --> 01:12:26,177 WHAT PURPOSE, AND WHO WAS PAYING 2169 01:12:26,177 --> 01:12:29,547 FOR THAT TO BE BUILT AND 2170 01:12:29,547 --> 01:12:29,881 IMPLEMENTED. 2171 01:12:29,881 --> 01:12:31,316 ALSO EMBEDDED IN THE PROCESS OF 2172 01:12:31,316 --> 01:12:33,718 HOW THESE TECHNOLOGIES ARE 2173 01:12:33,718 --> 01:12:33,985 VALIDATED. 2174 01:12:33,985 --> 01:12:35,787 SO TO THE EXTENT THAT THERE'S 2175 01:12:35,787 --> 01:12:38,089 SCIENCE BEHIND THEM, WHETHER 2176 01:12:38,089 --> 01:12:40,191 THEY ARE A MEDICAL DEVICE OR A 2177 01:12:40,191 --> 01:12:41,592 CONSUMER ELECTRONIC, THERE'S 2178 01:12:41,592 --> 01:12:43,127 SCIENCE BEHIND THESE DEVICES, 2179 01:12:43,127 --> 01:12:45,630 WHO WERE THEY TESTED ON? 2180 01:12:45,630 --> 01:12:47,432 WHOSE BENEFITS WERE THEY PROVEN 2181 01:12:47,432 --> 01:12:47,632 FOR? 2182 01:12:47,632 --> 01:12:50,668 WHOSE SAFETY WERE THEY PROVEN 2183 01:12:50,668 --> 01:12:50,835 FOR? 2184 01:12:50,835 --> 01:12:54,872 HOW EFFICACIOUS ARE THEY AND 2185 01:12:54,872 --> 01:12:56,174 CONSIDERATIONS AROUND BOTH THE 2186 01:12:56,174 --> 01:12:59,677 QUALITY OF THE EVIDENCE AND THE 2187 01:12:59,677 --> 01:13:01,312 REQUIREMENTS FOR, YOU KNOW, 2188 01:13:01,312 --> 01:13:02,814 WHAT'S EVIDENCE, TRULY 2189 01:13:02,814 --> 01:13:04,615 EVIDENCE-BASED ABOUT THESE 2190 01:13:04,615 --> 01:13:05,817 TECHNOLOGIES, AS WELL AS THEIR 2191 01:13:05,817 --> 01:13:08,019 SOCIOLOGICAL AND POTENTIALLY 2192 01:13:08,019 --> 01:13:10,088 POLITICAL CONSEQUENCES WHICH 2193 01:13:10,088 --> 01:13:13,791 ALSO MIGHT BURDEN PEOPLE IN A 2194 01:13:13,791 --> 01:13:16,327 NONEQUITABLY DISTRIBUTED MANNER. 2195 01:13:16,327 --> 01:13:18,396 SORT OF BUILDING ON THAT AND 2196 01:13:18,396 --> 01:13:20,164 EXTENDING INTO ANOTHER CATEGORY 2197 01:13:20,164 --> 01:13:23,301 OF REALLY POWER ASYMMETRY, BEING 2198 01:13:23,301 --> 01:13:24,969 AN ESSENTIAL ETHICAL CONCERN 2199 01:13:24,969 --> 01:13:26,104 THAT WE HAVE TO THINK ABOUT IN 2200 01:13:26,104 --> 01:13:27,739 THE DESIGN OF THESE DEVICES AS 2201 01:13:27,739 --> 01:13:28,673 WELL AS IN THE RESEARCH THAT WE 2202 01:13:28,673 --> 01:13:30,875 DO WITH THEM HAS TO DO WITH 2203 01:13:30,875 --> 01:13:31,676 POWER ASYMMETRY. 2204 01:13:31,676 --> 01:13:34,579 WHEN YOU'RE THE PERSON WEARING 2205 01:13:34,579 --> 01:13:36,881 THE DEVICE AND YOU'RE NOT THE 2206 01:13:36,881 --> 01:13:37,849 PERSON WHO OWNS THE DATA THAT 2207 01:13:37,849 --> 01:13:39,517 COMES FROM THAT DEVICE, THERE'S 2208 01:13:39,517 --> 01:13:40,718 A SIGNIFICANT DIFFERENCE IN 2209 01:13:40,718 --> 01:13:42,353 TERMS OF WHAT YOU'RE ABLE TO 2210 01:13:42,353 --> 01:13:44,756 GAIN AND WHAT YOU'RE ABLE TO -- 2211 01:13:44,756 --> 01:13:47,492 WHAT BENEFITS YOU PROVIDE THOSE 2212 01:13:47,492 --> 01:13:49,594 WHO ARE OBTAINING THE DATA AND 2213 01:13:49,594 --> 01:13:50,661 WHAT BENEFITS YOU'RE RECEIVING 2214 01:13:50,661 --> 01:13:52,096 AND WHO HAS CONTROL OVER THAT 2215 01:13:52,096 --> 01:13:53,865 DATA, WHO HAS ACCESS TO THAT 2216 01:13:53,865 --> 01:13:55,800 DATA, ALL OF THESE THINGS ARE 2217 01:13:55,800 --> 01:13:56,934 SIGNIFICANT TO THE PRIOR 2218 01:13:56,934 --> 01:13:58,269 QUESTIONS AROUND WHO IS PAYING 2219 01:13:58,269 --> 01:14:00,438 FOR THESE DEVICES TO BE BUILT 2220 01:14:00,438 --> 01:14:02,206 AND IMPLEMENTED AND WHO IS 2221 01:14:02,206 --> 01:14:04,509 BENEFITING FROM THEM, BUT ALSO 2222 01:14:04,509 --> 01:14:06,611 REALLY SIGNIFICANT FOR, YOU 2223 01:14:06,611 --> 01:14:08,146 KNOW, LONG-TERM I THINK SOCIAL 2224 01:14:08,146 --> 01:14:14,485 JUSTICE IN TERMS OF THE IF YOU 2225 01:14:14,485 --> 01:14:16,120 THINK FULLY CIRCLE BACK TO THE 2226 01:14:16,120 --> 01:14:17,989 IDEA OF THESE DEVICES ARE REALLY 2227 01:14:17,989 --> 01:14:19,891 SOMETHING THAT WE CONSIDER TO BE 2228 01:14:19,891 --> 01:14:21,526 INVASIVE OR THAT WE CONSIDER A 2229 01:14:21,526 --> 01:14:24,562 DEEP SURVEILLANCE TECHNIQUE, THE 2230 01:14:24,562 --> 01:14:26,097 FACT THAT ALL OF THAT DATA FROM 2231 01:14:26,097 --> 01:14:32,303 OUR BODIES COULD BE TAKEN AND 2232 01:14:32,303 --> 01:14:32,937 FNT HAVE THE ABILITY TO CONTROL 2233 01:14:32,937 --> 01:14:35,940 OR EVEN REVIEW THAT BECOMES 2234 01:14:35,940 --> 01:14:36,808 SIGNIFICANT -- AND NOT HAVE THE 2235 01:14:36,808 --> 01:14:38,042 ABILITY TO CONTROL OR EVEN 2236 01:14:38,042 --> 01:14:39,110 REVIEW THAT BECOMES SIGNIFICANT 2237 01:14:39,110 --> 01:14:40,111 FOR US TO CONSIDER. 2238 01:14:40,111 --> 01:14:41,946 SO I'LL KIND OF WEAVE THOSE 2239 01:14:41,946 --> 01:14:47,552 DIFFERENT TOPICS THROUGH A 2240 01:14:47,552 --> 01:14:48,319 DIFFERENT CONCEPTS. 2241 01:14:48,319 --> 01:14:49,854 THE FIRST ONE IS THINKING ABOUT 2242 01:14:49,854 --> 01:14:54,025 WHERE DID THIS DEVICE COME FROM 2243 01:14:54,025 --> 01:14:55,626 AND WHO HAS PROVEN THAT IT'S 2244 01:14:55,626 --> 01:14:56,394 GOOD FOR WHAT? 2245 01:14:56,394 --> 01:14:57,929 THIS IS I THINK REALLY CRITICAL 2246 01:14:57,929 --> 01:14:59,263 WHEN WE THINK ABOUT RESEARCH 2247 01:14:59,263 --> 01:15:00,498 ETHICS BECAUSE THERE'S A LOT OF 2248 01:15:00,498 --> 01:15:02,133 RESEARCH THAT'S DONE ON DEVICES 2249 01:15:02,133 --> 01:15:07,138 THAT ARE CREATED IN THE CONSUMER 2250 01:15:07,138 --> 01:15:08,673 CONTEXT AND THEN BEING APPLIED 2251 01:15:08,673 --> 01:15:10,441 FOR PERHAPS USES OUTSIDE OF THE 2252 01:15:10,441 --> 01:15:12,176 CONSUMER CONTEXT, IN A MEDICAL 2253 01:15:12,176 --> 01:15:13,511 CONTEXT. 2254 01:15:13,511 --> 01:15:14,745 SO FOR EXAMPLE, A CONSTITUTED HE 2255 01:15:14,745 --> 01:15:17,982 WILL OF APPLE SMART -- A STUDY 2256 01:15:17,982 --> 01:15:19,951 OF APPLE SMARTPHONE USERS FOR 2257 01:15:19,951 --> 01:15:22,887 THE ABILITY TO DETECT THEIR 2258 01:15:22,887 --> 01:15:24,655 ATRIAL FIBRILLATION IS AN 2259 01:15:24,655 --> 01:15:26,390 EXAMPLE OF SORT OF MEDICAL 2260 01:15:26,390 --> 01:15:27,625 SCIENTISTS SAYING WAIT A SECOND, 2261 01:15:27,625 --> 01:15:29,994 THIS CONSUMER DEVICE HAS A 2262 01:15:29,994 --> 01:15:31,429 POTENTIAL SIGNIFICANCE FOR 2263 01:15:31,429 --> 01:15:34,298 CLINICAL UTILITY, AND APPLYING 2264 01:15:34,298 --> 01:15:35,366 THAT RESEARCH -- I KEEP HITTING 2265 01:15:35,366 --> 01:15:37,502 THIS THING, MY GESTURES. 2266 01:15:37,502 --> 01:15:39,871 I HAVE TO WATCH THE GESTURES. 2267 01:15:39,871 --> 01:15:42,139 APPLYING, SO THE SIGNIFICANCE OF 2268 01:15:42,139 --> 01:15:43,708 TAKING A TECHNOLOGY THAT WAS 2269 01:15:43,708 --> 01:15:45,409 SORT OF DESIGNED AND IMPLEMENTED 2270 01:15:45,409 --> 01:15:47,211 IN A COMMERCIAL CONTEXT AND THEN 2271 01:15:47,211 --> 01:15:48,946 REALLY APPROPRIATING IT FOR 2272 01:15:48,946 --> 01:15:50,581 ANOTHER USE, WHICH MAY BE VERY 2273 01:15:50,581 --> 01:15:51,682 APPROPRIATE AND HAS THE 2274 01:15:51,682 --> 01:15:53,317 POTENTIAL TO BENEFITED A LOT OF 2275 01:15:53,317 --> 01:15:55,186 PEOPLE, ALTHOUGH NOT ALL PEOPLE 2276 01:15:55,186 --> 01:15:56,587 EQUALLY, RIGHT, NOT EVERYBODY 2277 01:15:56,587 --> 01:15:58,256 HAS AN APPLE SMARTPHONE, NOT 2278 01:15:58,256 --> 01:16:01,192 EVERYBODY HAS A SMARTPHONE, SO 2279 01:16:01,192 --> 01:16:02,393 THAT'S SIGNIFICANT. 2280 01:16:02,393 --> 01:16:04,929 THERE'S ALSO VASTLY DIFFERENT 2281 01:16:04,929 --> 01:16:06,163 LEVELS OF REQUIREMENTS FOR THE 2282 01:16:06,163 --> 01:16:07,999 SCIENCE THAT GOES INTO, YOU 2283 01:16:07,999 --> 01:16:11,536 KNOW, USING A -- SORT OF PROVING 2284 01:16:11,536 --> 01:16:12,937 THAT AN APPLE PHONE CAN BE USED 2285 01:16:12,937 --> 01:16:16,240 AS A STEP TRACKER, AS OPPOSED TO 2286 01:16:16,240 --> 01:16:19,310 A GLUCOOM TER BEING USED FOR 2287 01:16:19,310 --> 01:16:21,279 TRACKING AND SAFELY MONITORING 2288 01:16:21,279 --> 01:16:21,812 SOMEBODY'S DIABETES. 2289 01:16:21,812 --> 01:16:24,649 SO A DEVICE THAT HAS FDA EVEN 2290 01:16:24,649 --> 01:16:27,051 CLEARANCE BUT FDA REVIEW HAS FAR 2291 01:16:27,051 --> 01:16:28,586 MORE, A LOT MORE COS ASSOCIATED 2292 01:16:28,586 --> 01:16:30,755 WITH IT, BECOMING APPROVED, AND 2293 01:16:30,755 --> 01:16:32,757 I THINK IMPORTANTLY WE SHOULDN'T 2294 01:16:32,757 --> 01:16:34,525 FORGET THAT WHETHER IT'S FDA 2295 01:16:34,525 --> 01:16:36,294 APPROVED OR CONSUMER ELECTRONIC, 2296 01:16:36,294 --> 01:16:38,563 IN BOTH CASES, THERE'S COMPANIES 2297 01:16:38,563 --> 01:16:43,601 THAT ARE INVESTED IN THE SORT OF 2298 01:16:43,601 --> 01:16:44,468 PROFIT MOTIVE RELATED TO THE 2299 01:16:44,468 --> 01:16:45,570 PRODUCTION AND PA APPROVAL OF 2300 01:16:45,570 --> 01:16:47,305 THESE DEVICES, SO DOESN'T SORT 2301 01:16:47,305 --> 01:16:49,941 OF ELIMINATE THAT DISPARITY, BUT 2302 01:16:49,941 --> 01:16:53,244 IT IS SIGNIFICANT TO CONSIDER 2303 01:16:53,244 --> 01:16:54,779 WHAT'S GETTING REVIEWED AND BY 2304 01:16:54,779 --> 01:16:56,747 WHOM, AS OPPOSED TO I THINK 2305 01:16:56,747 --> 01:16:59,584 TAKING ON FACE VALUE THE IDEA 2306 01:16:59,584 --> 01:17:01,552 THAT THESE TECHNOLOGIES ARE 2307 01:17:01,552 --> 01:17:03,421 EFFECTIVE, ESPECIALLY WHEN 2308 01:17:03,421 --> 01:17:05,289 THEY'RE BEING APPLIED OUTSIDE OF 2309 01:17:05,289 --> 01:17:07,358 THEIR ORIGINAL INTENT, BUT EVEN 2310 01:17:07,358 --> 01:17:09,427 FOR THEIR ORIGINAL PURPOSE. 2311 01:17:09,427 --> 01:17:10,728 AS I WAS PREPARING FOR THIS 2312 01:17:10,728 --> 01:17:12,063 LECTURE, SO MANY PEOPLE WERE 2313 01:17:12,063 --> 01:17:13,464 GIVING ME DIFFERENT EXAMPLES, I 2314 01:17:13,464 --> 01:17:16,000 THINK THE MOST PROFOUND ONE WAS 2315 01:17:16,000 --> 01:17:20,371 SOMEBODY WHO HAD A SLEEP TRACKER 2316 01:17:20,371 --> 01:17:21,906 THAT STARTED -- WAS REPORTING 2317 01:17:21,906 --> 01:17:23,107 HIM AS SLEEPING WHILE HE WAS 2318 01:17:23,107 --> 01:17:24,742 WATCHING A MOVIE. 2319 01:17:24,742 --> 01:17:26,510 AND IT WAS LIKE, THAT'S VERY 2320 01:17:26,510 --> 01:17:27,812 INTERESTING THAT A DEVICE, YOU 2321 01:17:27,812 --> 01:17:29,113 KNOW, IT WAS LIKE WHAT DATA WAS 2322 01:17:29,113 --> 01:17:30,681 IT EVEN USING TO DETERMINE THAT 2323 01:17:30,681 --> 01:17:32,516 YOU WERE ASLEEP, THAT IT COULD 2324 01:17:32,516 --> 01:17:33,851 MAKE SUCH A MISTAKE? 2325 01:17:33,851 --> 01:17:35,553 IT SEEMS LIKE THERE'S SUCH A 2326 01:17:35,553 --> 01:17:36,754 QUALITATIVE AND QUANTITATIVE 2327 01:17:36,754 --> 01:17:38,055 DIFFERENCE THAT ANY HUMAN BEING 2328 01:17:38,055 --> 01:17:39,724 WOULD BE ABLE TO TELL, THIS 2329 01:17:39,724 --> 01:17:41,592 PERSON IS SITTING ON THE COUCH 2330 01:17:41,592 --> 01:17:43,160 WATCHING A MOVIE, NOT SLEEPING 2331 01:17:43,160 --> 01:17:45,096 ON THE COUCH, YET IT'S AMAZE 2332 01:17:45,096 --> 01:17:47,765 THAT GO A TECHNOLOGY THAT'S MIT 2333 01:17:47,765 --> 01:17:49,166 SIENGS BACKED AND BLAH BLAH BLAH 2334 01:17:49,166 --> 01:17:51,235 WOULD BE ABLE TO SAY NO, YOU'VE 2335 01:17:51,235 --> 01:17:52,436 BEEN SLEEPING FOR THE LAST TWO 2336 01:17:52,436 --> 01:17:53,571 HOURS, SO MAYBE I SHOULD BE 2337 01:17:53,571 --> 01:17:56,040 GETTING UP MORE DUFERG THE 2338 01:17:56,040 --> 01:17:57,475 MOVE -- DURING THE MOVIE BUT 2339 01:17:57,475 --> 01:17:58,676 IT'S REALLY REMARKABLE WHEN YOU 2340 01:17:58,676 --> 01:17:59,877 CONSIDER THAT THE SAME EXACT 2341 01:17:59,877 --> 01:18:01,646 THINGS ARE APPLIED TO OXYGEN 2342 01:18:01,646 --> 01:18:03,047 MONITOR, YOU KNOW, OXYGEN 2343 01:18:03,047 --> 01:18:06,784 MONITOR SAYING THAT PEOPLE DON'T 2344 01:18:06,784 --> 01:18:09,186 HAVE CERTAIN OXYGEN SATURATION, 2345 01:18:09,186 --> 01:18:10,721 WHEN REALLY THEIR VALIDATION 2346 01:18:10,721 --> 01:18:12,056 HADN'T BEEN DONE SUFFICIENTLY IN 2347 01:18:12,056 --> 01:18:14,025 PEOPLE WITH THEIR SKIN COLOR. 2348 01:18:14,025 --> 01:18:14,225 RIGHT? 2349 01:18:14,225 --> 01:18:18,529 WE SORT OF TAKE THESE DEVICES AS 2350 01:18:18,529 --> 01:18:20,398 I THINK THERE'S A WAY IN WHICH 2351 01:18:20,398 --> 01:18:22,033 THEIR ADOPTION BECOMES SO 2352 01:18:22,033 --> 01:18:24,335 NATURAL THAT WE MAKE A LOT OF 2353 01:18:24,335 --> 01:18:26,070 ASSUMPTIONS ABOUT THEIR 2354 01:18:26,070 --> 01:18:27,271 EFFICACY, ESPECIALLY WHEN 2355 01:18:27,271 --> 01:18:30,241 THERE'S HARDWARE INVOLVED, AND 2356 01:18:30,241 --> 01:18:32,109 THAT THOSE ASSUMPTIONS ARE NOT 2357 01:18:32,109 --> 01:18:33,511 NECESSARILY VALIDATED, AND 2358 01:18:33,511 --> 01:18:35,246 AGAIN, WHEN YOU START TAKING 2359 01:18:35,246 --> 01:18:36,714 DEVICES, THIS WAS A COMMON ONE, 2360 01:18:36,714 --> 01:18:38,549 WAS TO TAKE ANY DEVICE THAT WAS 2361 01:18:38,549 --> 01:18:40,184 MEASURING PEOPLE'S TEMPERATURE 2362 01:18:40,184 --> 01:18:41,485 DURING THE PANDEMIC SUDDENLY 2363 01:18:41,485 --> 01:18:44,055 BECAME A DEVICE THAT COULD BE 2364 01:18:44,055 --> 01:18:45,923 COOPTED FOR PANDEMIC, YOU KNOW, 2365 01:18:45,923 --> 01:18:48,426 EITHER SURVEILLANCE CONTROL, 2366 01:18:48,426 --> 01:18:50,528 PREDICTION, AND THE COMMON 2367 01:18:50,528 --> 01:18:59,870 EXAMPLE THE ORAL DID RING -- AWP 2368 01:18:59,870 --> 01:19:01,305 TRACKING, ANOTHER ONE FOR 2369 01:19:01,305 --> 01:19:06,010 FERTILITY TRACKING, DEVICES 2370 01:19:06,010 --> 01:19:07,645 CREATED WITHOUT FDA APPROVAL FOR 2371 01:19:07,645 --> 01:19:08,846 CERTAIN PURPOSES AND NOW YOU'RE 2372 01:19:08,846 --> 01:19:10,181 APPLYING THEM TO THE CONTEXT OF 2373 01:19:10,181 --> 01:19:11,382 COVID AND SORT OF THE VAST 2374 01:19:11,382 --> 01:19:12,817 AMOUNT OF UNKNOWN ABOUT HOW 2375 01:19:12,817 --> 01:19:14,885 THESE TECHNOLOGIES ARE REALLY 2376 01:19:14,885 --> 01:19:15,886 FUNCTIONING, AND I THINK IT'S 2377 01:19:15,886 --> 01:19:18,823 CRITICAL AS IN, YOU KNOW, ANY 2378 01:19:18,823 --> 01:19:20,357 OTHER FIELD, BUT PERHAPS WITH 2379 01:19:20,357 --> 01:19:21,759 THESE DEVICES WHEN YOU HAVE 2380 01:19:21,759 --> 01:19:25,162 SOMETHING, IT COULD SORT OF SEEM 2381 01:19:25,162 --> 01:19:26,897 LIKE IT'S SORT OF A FACT OF HOW 2382 01:19:26,897 --> 01:19:28,299 IT'S GOING TO WORK. 2383 01:19:28,299 --> 01:19:29,533 AND I REALLY ENCOURAGE PEOPLE 2384 01:19:29,533 --> 01:19:32,603 WHO ARE DOING SCIENCE AND DOING 2385 01:19:32,603 --> 01:19:34,238 RESEARCH ON WEARABLES TO FIND 2386 01:19:34,238 --> 01:19:36,674 OUT WHAT DATA WENT INTO PROVING 2387 01:19:36,674 --> 01:19:40,044 THAT THIS DEVICE WORKS AT ALL. 2388 01:19:40,044 --> 01:19:42,780 WHAT STUDIES WERE DONE TO SHOW 2389 01:19:42,780 --> 01:19:45,182 THAT IT IS ACCURATE IN ANY WAY, 2390 01:19:45,182 --> 01:19:48,385 EVEN FOR ITS ORIGINAL INTENDED 2391 01:19:48,385 --> 01:19:50,254 PURPOSE, AND WHAT IS YOUR 2392 01:19:50,254 --> 01:19:51,355 EVIDENCE THAT WHILE VERY 2393 01:19:51,355 --> 01:19:52,389 REASONABLE IT TAKE SOMETHING 2394 01:19:52,389 --> 01:19:53,524 THAT'S MONITORING TEMPERATURE 2395 01:19:53,524 --> 01:19:55,626 AND IN FACT MANY PEOPLE THINK 2396 01:19:55,626 --> 01:19:57,895 ABOUT GOOD DESIGN IS DESIGN THAT 2397 01:19:57,895 --> 01:20:01,866 IS MADE FOR EMERGENTS, SO READY 2398 01:20:01,866 --> 01:20:04,268 FOR PEOPLE APPLYING IT IN NEW 2399 01:20:04,268 --> 01:20:05,369 WAYS, THAT'S NOT NECESSARILY A 2400 01:20:05,369 --> 01:20:06,871 BAD THING, BUT I THINK IT PUTS 2401 01:20:06,871 --> 01:20:08,739 YOU AT THE ONUS ON THE RESEARCH 2402 01:20:08,739 --> 01:20:10,107 COMMUNITY TO THINK, WELL, IF I'M 2403 01:20:10,107 --> 01:20:11,675 GOING TO START USING THIS FOR, 2404 01:20:11,675 --> 01:20:14,545 YOU KNOW, THE PROPOSED SORT OF 2405 01:20:14,545 --> 01:20:16,847 ALTERNATIVE USE OF TEMPERATURE 2406 01:20:16,847 --> 01:20:20,017 MONITORING IN THE PANDEMIC AS AN 2407 01:20:20,017 --> 01:20:21,986 EXAMPLE, HOW AM I VALIDATING 2408 01:20:21,986 --> 01:20:23,154 THAT THAT'S AN APPROPRIATE USE 2409 01:20:23,154 --> 01:20:24,822 AND NOT JUST SKIPPING OVER THAT 2410 01:20:24,822 --> 01:20:26,157 AND SAYING WELL IT'S USED FOR 2411 01:20:26,157 --> 01:20:27,124 TEMPERATURE MONITORING, SO WE'RE 2412 01:20:27,124 --> 01:20:28,859 GOING TO USE IT FOR MONITORING 2413 01:20:28,859 --> 01:20:30,194 TEMPERATURE IN THIS OTHER 2414 01:20:30,194 --> 01:20:30,528 CONTEXT. 2415 01:20:30,528 --> 01:20:32,696 SO THAT'S ONE WHOLE SET OF 2416 01:20:32,696 --> 01:20:33,063 CONSIDERATIONS. 2417 01:20:33,063 --> 01:20:34,365 I THINK THE OTHER THING THAT'S 2418 01:20:34,365 --> 01:20:35,900 SUPER IMPORTANT WHEN WE THINK 2419 01:20:35,900 --> 01:20:39,370 ABOUT THESE DEVICES AND THEIR 2420 01:20:39,370 --> 01:20:41,038 APPLICATION IN RESEARCH IS THAT 2421 01:20:41,038 --> 01:20:43,407 THERE'S A SORT OF POPULAR -- 2422 01:20:43,407 --> 01:20:47,912 THERE'S A PROPENSITY FOR 2423 01:20:47,912 --> 01:20:49,446 CERTAINLY INVALIDATED IN POPULAR 2424 01:20:49,446 --> 01:20:51,215 SURVEYS THAT PEOPLE VIEW THAT 2425 01:20:51,215 --> 01:20:51,782 DATA ESPECIALLY WHEN THAT 2426 01:20:51,782 --> 01:20:53,484 RESEARCH IS BEING DONE AT A 2427 01:20:53,484 --> 01:20:55,586 RESEARCH CERTAIN, WHETHER IT'S 2428 01:20:55,586 --> 01:20:58,856 BY M DW'S OR Ph.D.'S OR 2429 01:20:58,856 --> 01:20:59,623 ANYBODY DOING RESEARCH THAT 2430 01:20:59,623 --> 01:21:01,559 THOSE DATA ARE PREKED BY SORT OF 2431 01:21:01,559 --> 01:21:02,993 SOME OF THE NORMS AND LEGAL 2432 01:21:02,993 --> 01:21:04,094 PROTECTIONS THAT WE ASSUME HA 2433 01:21:04,094 --> 01:21:06,163 PLY TO OUR HELIDATA, SORT OF AT 2434 01:21:06,163 --> 01:21:07,731 LARGE OR ELECTRONIC MEDICAL 2435 01:21:07,731 --> 01:21:09,033 RECORDS CERTAINLY. 2436 01:21:09,033 --> 01:21:11,001 AND THAT'S SIMPLY NOT TRUE IN 2437 01:21:11,001 --> 01:21:13,904 ALMOST ALL CASES, OR AT LEAST IN 2438 01:21:13,904 --> 01:21:18,442 A SUBSET OF CASES, EVEN FOR ANY 2439 01:21:18,442 --> 01:21:19,877 DEVICE, WHICH CAN BE QUITE 2440 01:21:19,877 --> 01:21:22,713 EASILY TRACKED TO GET THAT DATA 2441 01:21:22,713 --> 01:21:23,714 FROM, YOU KNOW, IF YOU RECEIVE 2442 01:21:23,714 --> 01:21:25,282 THE DEVICE FROM YOUR CLINICIAN 2443 01:21:25,282 --> 01:21:26,550 FOR EXAMPLE FOR A RESEARCH 2444 01:21:26,550 --> 01:21:28,085 STUDY, SORT OF SUBJECTS THAT 2445 01:21:28,085 --> 01:21:29,854 THAT DATA FROM THAT DEVICE WILL 2446 01:21:29,854 --> 01:21:31,288 RECEIVE THE SAME SORT OF RESPECT 2447 01:21:31,288 --> 01:21:33,557 AND LEGAL PROTECTION AS THAT 2448 01:21:33,557 --> 01:21:35,426 DATA WOULD BE IF IT WAS 2449 01:21:35,426 --> 01:21:37,928 OBTAINED, SAY, BY A BLOOD 2450 01:21:37,928 --> 01:21:39,463 PRESSURE MONITOR OR OTHER 2451 01:21:39,463 --> 01:21:41,699 SIMILAR TYPE DEVICES THAT ARE 2452 01:21:41,699 --> 01:21:43,000 APPLIED TO YOU WHEN YOU'RE IN 2453 01:21:43,000 --> 01:21:45,069 THE CLINICAL SETTING, NOW THAT 2454 01:21:45,069 --> 01:21:47,238 YOU'RE BEING MONITORED REMOTELY, 2455 01:21:47,238 --> 01:21:48,706 IS NOT NECESSARILY TRUE BECAUSE 2456 01:21:48,706 --> 01:21:50,875 OF THE THIRD PARTIES INVOLVED 2457 01:21:50,875 --> 01:21:53,077 AND BECAUSE OF OTHER SORT OF 2458 01:21:53,077 --> 01:21:56,981 GAPS IN OUR REGULATORY 2459 01:21:56,981 --> 01:22:00,150 INFRASTRUCTURE. 2460 01:22:00,150 --> 01:22:03,454 CRITICAL TO THINKING ABOUT 2461 01:22:03,454 --> 01:22:07,591 WEARABLES IS THE REALLY LIMITED 2462 01:22:07,591 --> 01:22:08,926 POTENTIALS OF INFORMED 2463 01:22:08,926 --> 01:22:09,360 CONSENTED. 2464 01:22:09,360 --> 01:22:10,694 SO THERE'S BEEN A LOT OF 2465 01:22:10,694 --> 01:22:13,631 RESEARCH THAT'S DEMONSTRATED THE 2466 01:22:13,631 --> 01:22:14,531 LIFETIMES ESSENTIALLY THAT IT 2467 01:22:14,531 --> 01:22:15,866 WOULD TAKE TO ACTUALLY READ ALL 2468 01:22:15,866 --> 01:22:18,535 OF THE PRIVACY POLICIES THAT ARE 2469 01:22:18,535 --> 01:22:21,071 GOING INTO ALL OF THESE DEVICES. 2470 01:22:21,071 --> 01:22:22,706 AS A PRACTICING CLINICIAN AND A 2471 01:22:22,706 --> 01:22:23,574 SURGEON, I COULD TELL YOU EVEN 2472 01:22:23,574 --> 01:22:25,242 IN THE CLINICAL CONTEXT, WE KNOW 2473 01:22:25,242 --> 01:22:26,644 THAT PEOPLE RNLT READING THESE 2474 01:22:26,644 --> 01:22:29,280 INFORMED CONSENT -- ARE NOT 2475 01:22:29,280 --> 01:22:30,281 READING THESE INFORMED CONSENT 2476 01:22:30,281 --> 01:22:31,582 FORMS AND ARE REALLY PUTTING A 2477 01:22:31,582 --> 01:22:32,783 LOT OF TRUST IN THE PEOPLE THAT 2478 01:22:32,783 --> 01:22:33,984 THEY'RE GETTING THESE DEVICES 2479 01:22:33,984 --> 01:22:35,219 FROM OR THE PEOPLE THAT ARE 2480 01:22:35,219 --> 01:22:36,520 DOING RESEARCH OR DOING CLINICAL 2481 01:22:36,520 --> 01:22:38,956 CARE TO HAVE THEIR BEST 2482 01:22:38,956 --> 01:22:41,258 INTERESTS AT HEART AND ARE IN 2483 01:22:41,258 --> 01:22:41,458 MIND. 2484 01:22:41,458 --> 01:22:43,894 AND I THINK THAT, YOU KNOW, SOME 2485 01:22:43,894 --> 01:22:46,230 OF THE CHALLENGES AROUND, YOU 2486 01:22:46,230 --> 01:22:48,065 KNOW, WHAT IS MEANINGFUL 2487 01:22:48,065 --> 01:22:51,235 INFORMED CONSENT FOR APPLYING A 2488 01:22:51,235 --> 01:22:53,103 DEVICE THAT YOU'RE GOING ON 2489 01:22:53,103 --> 01:22:54,838 FORGET THAT YOU'RE WEARING -- 2490 01:22:54,838 --> 01:22:56,140 GOING ON FORGET THAT YOU'RE 2491 01:22:56,140 --> 01:22:57,074 WEARING, THAT YOU DON'T KNOW HOW 2492 01:22:57,074 --> 01:22:58,442 THAT DATA IS USED AND WE DOAN 2493 01:22:58,442 --> 01:23:00,311 KNOW WHAT WE MIGHT USE AT THAT 2494 01:23:00,311 --> 01:23:01,512 DATA FOR WHEN WE'RE GOING INTO 2495 01:23:01,512 --> 01:23:03,047 THAT RESEARCH, THERE'S SORT OF 2496 01:23:03,047 --> 01:23:04,915 AN INHEROIN, YOU KNOW, BROAD 2497 01:23:04,915 --> 01:23:06,550 APPLICATION OF BROAD CONSENT 2498 01:23:06,550 --> 01:23:09,186 WHERE, YOU KNOW, WE GET A TON OF 2499 01:23:09,186 --> 01:23:10,387 REALLY INTIMATE, VERY PARTICULAR 2500 01:23:10,387 --> 01:23:12,690 DATA FROM A PERSON, WHETHER IT'S 2501 01:23:12,690 --> 01:23:15,659 THEIR LOCATION, THEIR BODY, 2502 01:23:15,659 --> 01:23:17,661 THEIR SOCIOLOGICAL CONTEXT AND 2503 01:23:17,661 --> 01:23:21,298 BEHAVIORS, AND YET, YOU KNOW, 2504 01:23:21,298 --> 01:23:23,600 TREATING IT AS WHAT I THINK 2505 01:23:23,600 --> 01:23:26,203 ABOUT INFORMED CONSENT VIS-A-VIS 2506 01:23:26,203 --> 01:23:28,939 ACCEPTING COOKIES AND YEAH, 2507 01:23:28,939 --> 01:23:30,574 YEAH, GIVE ME THE FITBIT AND 2508 01:23:30,574 --> 01:23:32,343 I'LL PUT IT ON AND WE'LL KIND OF 2509 01:23:32,343 --> 01:23:33,978 TAKE IT FROM THERE CREATES SORT 2510 01:23:33,978 --> 01:23:36,914 OF AN INHERENT I THINK ONUS UPON 2511 01:23:36,914 --> 01:23:39,350 THE RESEARCH COMMUNITY TO NOT 2512 01:23:39,350 --> 01:23:42,419 JUST THINK ABOUT INFORMED 2513 01:23:42,419 --> 01:23:45,823 CONSENT AS ACHIEVED 2514 01:23:45,823 --> 01:23:46,623 PROSPECTIVELY BUT AS SOMETHING 2515 01:23:46,623 --> 01:23:48,225 THAT REQUIRES REALLY CONSENSUS 2516 01:23:48,225 --> 01:23:50,661 AND SORT OF ONGOING 2517 01:23:50,661 --> 01:23:51,829 COMMUNICATION ABOUT HOW THOSE 2518 01:23:51,829 --> 01:23:53,330 DEVICES ARE, IN FACT, BEING 2519 01:23:53,330 --> 01:23:54,665 USED, WHAT THAT DATA IS IN FACT 2520 01:23:54,665 --> 01:23:57,735 BEING USED FOR, REALLY CRITICAL 2521 01:23:57,735 --> 01:23:59,703 FOR SOME APPLICATIONS OF 2522 01:23:59,703 --> 01:24:01,372 WEARABLES, A GOOD EXAMPLE IS 2523 01:24:01,372 --> 01:24:02,573 FACEBOOK STORIES WHICH ARE THE 2524 01:24:02,573 --> 01:24:05,309 SMART GLASSES THAT HAD THE VIDEO 2525 01:24:05,309 --> 01:24:06,577 AUDIO CAMERAS AND THE IDEA, AND 2526 01:24:06,577 --> 01:24:08,412 THIS IS TRUE FOR OTHER SENSOR 2527 01:24:08,412 --> 01:24:10,047 TECHNOLOGY, WHEN A PERSON 2528 01:24:10,047 --> 01:24:11,782 CONSENTS TO WEAR OR PURCHASES 2529 01:24:11,782 --> 01:24:13,684 AND CONSENTS SORT OF IMPLICITLY 2530 01:24:13,684 --> 01:24:15,085 CONSENTS TO WEAR A DEVICE, THAT 2531 01:24:15,085 --> 01:24:16,720 DOESN'T MEAN THAT THE PEOPLE 2532 01:24:16,720 --> 01:24:19,456 AROUND THEM DID, AND IT'S AN 2533 01:24:19,456 --> 01:24:20,457 INTERESTING PARALLEL TO WHAT WE 2534 01:24:20,457 --> 01:24:23,193 TALK ABOUT IN TERMS OF CONSENT 2535 01:24:23,193 --> 01:24:24,261 FOR GENETICS, WHERE YOU THINK 2536 01:24:24,261 --> 01:24:25,729 ABOUT THIS IS THE KIND OF THING 2537 01:24:25,729 --> 01:24:27,231 THAT YOU COULD CONSENT FOR BUT 2538 01:24:27,231 --> 01:24:28,499 YOUR WHOLE FAMILY'S GENETICS 2539 01:24:28,499 --> 01:24:29,633 COULD BE REVEALED BY THAT 2540 01:24:29,633 --> 01:24:31,168 DECISION, THIS SAME THING IS 2541 01:24:31,168 --> 01:24:33,270 TRUE IN A FAR GREATER FIELD OF 2542 01:24:33,270 --> 01:24:36,206 SORT OF, YOU KNOW, COLLATERAL 2543 01:24:36,206 --> 01:24:38,642 PARTIES OR THIRD PARTIES WHO 2544 01:24:38,642 --> 01:24:40,144 BECAUSE OF THE SENSING DEVICES 2545 01:24:40,144 --> 01:24:41,712 I'M WEARING, NOW ALL OF YOU ARE 2546 01:24:41,712 --> 01:24:43,113 ALSO BEING MONITORED. 2547 01:24:43,113 --> 01:24:44,681 SO SORT OF THE BURDENS AROUND 2548 01:24:44,681 --> 01:24:46,183 AND SOME OF OUR NORMS AROUND 2549 01:24:46,183 --> 01:24:47,484 INFORMED CONSENT REALLY DON'T 2550 01:24:47,484 --> 01:24:49,019 APPLY IN THIS CONTEXT, SO I 2551 01:24:49,019 --> 01:24:50,654 THINK SOME OF OUR DUTIES AROUND 2552 01:24:50,654 --> 01:24:52,122 ENSURING THE SAFETY, PROTECTION, 2553 01:24:52,122 --> 01:24:53,757 BOTH THE PRIVACY OF THAT DATA AS 2554 01:24:53,757 --> 01:24:55,726 WELL AS THE BENEFITS TO THOSE 2555 01:24:55,726 --> 01:24:56,794 INDIVIDUALS WHO MIGHT BE 2556 01:24:56,794 --> 01:24:58,228 AFFECTED BEYOND EVEN THE 2557 01:24:58,228 --> 01:25:00,964 INDIVIDUAL IN OUR STUDIES IS 2558 01:25:00,964 --> 01:25:02,266 REALLY CRITICAL. 2559 01:25:02,266 --> 01:25:04,468 SO I THINK THIS IS WEAR SOME OF 2560 01:25:04,468 --> 01:25:06,570 OUR OPPORTUNITIES LIE IN TERMS 2561 01:25:06,570 --> 01:25:08,739 OF WEARABLE RESEARCH AS 2562 01:25:08,739 --> 01:25:10,607 SOMETHING WHERE THE ABILITY TO 2563 01:25:10,607 --> 01:25:13,544 CONFER TO THAT INDIVIDUAL THE 2564 01:25:13,544 --> 01:25:16,280 BENEFITS OF PARTICIPATING IN 2565 01:25:16,280 --> 01:25:17,614 THAT RESEARCH BECOMES AN 2566 01:25:17,614 --> 01:25:19,349 OPPORTUNITY THAT WILL OFFSET 2567 01:25:19,349 --> 01:25:21,985 SOME OF THE RISKS THAT WE 2568 01:25:21,985 --> 01:25:24,154 ESSENTIALLY THAN THEY MAY BE 2569 01:25:24,154 --> 01:25:26,890 UN-- KNOW THAT THEY MAY BE 2570 01:25:26,890 --> 01:25:28,225 UNWILLINGLY TAKING ON ESPECIALLY 2571 01:25:28,225 --> 01:25:29,860 IF THEY DON'T FULLY APPRECIATE 2572 01:25:29,860 --> 01:25:31,295 THE SIGNIFICANCE OF WHAT THE 2573 01:25:31,295 --> 01:25:32,830 DATA COMING FROM THEM FROM THESE 2574 01:25:32,830 --> 01:25:33,931 DEVICES WILL BE ABLE TO DO AND 2575 01:25:33,931 --> 01:25:35,232 HOW IT MIGHT AFFECT THEM 2576 01:25:35,232 --> 01:25:37,301 PRESIDENT FUTURE. 2577 01:25:37,301 --> 01:25:38,936 -- AND HOW IT MIGHT AFFECT THEM 2578 01:25:38,936 --> 01:25:39,937 IN THE FUTURE. 2579 01:25:39,937 --> 01:25:41,472 SO WE KIND OF TOUCHED ON THE 2580 01:25:41,472 --> 01:25:43,340 IMPACT ON DISPARITIES AND 2581 01:25:43,340 --> 01:25:45,409 DISCRIMINATION ALREADY. 2582 01:25:45,409 --> 01:25:47,511 I THINK THE REALLY IMPORTANT 2583 01:25:47,511 --> 01:25:48,946 EXAMPLES TO KEEP IN MIND ARE 2584 01:25:48,946 --> 01:25:50,247 ONES, AGAIN, GOING BACK TO THE 2585 01:25:50,247 --> 01:25:52,749 TEMPERATURE SENSING, ESPECIALLY 2586 01:25:52,749 --> 01:25:55,052 GIVEN THE GENETIC DIFFERENCES 2587 01:25:55,052 --> 01:25:56,253 AND PHYSIOLOGIC DIFFERENCES 2588 01:25:56,253 --> 01:25:58,122 BETWEEN MEN AND WOMEN, AS AN 2589 01:25:58,122 --> 01:25:58,455 EXAMPLE. 2590 01:25:58,455 --> 01:25:59,089 RIGHT? 2591 01:25:59,089 --> 01:26:00,224 WE'RE APPLYING A DEVICE THAT'S 2592 01:26:00,224 --> 01:26:02,292 MEANT FOR SLEEP TRACKING, MAYBE 2593 01:26:02,292 --> 01:26:05,262 TESTED IN A LARGELY MALE 2594 01:26:05,262 --> 01:26:06,697 POPULATION, NOW WE'RE TESTING IT 2595 01:26:06,697 --> 01:26:07,998 FR APPLICATION FOR WHETHER 2596 01:26:07,998 --> 01:26:10,300 PEOPLE CAN GO TO WORK DURING THE 2597 01:26:10,300 --> 01:26:12,169 COVID PANDEMIC. 2598 01:26:12,169 --> 01:26:13,403 WELL, IF PEOPLE HADN'T STOPPED 2599 01:26:13,403 --> 01:26:16,006 TO CONSIDER THAT WOMEN'S 2600 01:26:16,006 --> 01:26:17,608 TEMPERATURE NATURALLY FLUCTUATES 2601 01:26:17,608 --> 01:26:19,943 OVER THE COURSE OF A MONTHLY 2602 01:26:19,943 --> 01:26:25,315 CYCLE, THEY COULD SORT OF BE 2603 01:26:25,315 --> 01:26:29,887 INADVERTENT AM SEQUESTERED -- 2604 01:26:29,887 --> 01:26:31,088 INADVERTENTLY SEQUESTERED OR 2605 01:26:31,088 --> 01:26:32,623 BASED ON THE FINDINGS, OH, YOUR 2606 01:26:32,623 --> 01:26:33,857 TEMPERATURE IS TRENDING UP, THAT 2607 01:26:33,857 --> 01:26:34,958 MEANS YOU SHOULD STAY HOME FROM 2608 01:26:34,958 --> 01:26:36,693 WORK TODAY, MAYBE THAT WAS A 2609 01:26:36,693 --> 01:26:37,794 PHYSIOLOGIC PROCESS THAT WASN'T 2610 01:26:37,794 --> 01:26:40,364 REALLY CAPTURED IN THE DESIGN OF 2611 01:26:40,364 --> 01:26:41,532 THE DWIERKS A GOOD EXAMPLE OF 2612 01:26:41,532 --> 01:26:42,466 HOW THESE COULD BE AIF HE 2613 01:26:42,466 --> 01:26:44,168 CANNING PEOPLE DIFFERENTLY. 2614 01:26:44,168 --> 01:26:46,303 IT BECOMES MORE SIGNIFICANT WHEN 2615 01:26:46,303 --> 01:26:48,505 YOU THINK ABOUT ALL OF THE 2616 01:26:48,505 --> 01:26:50,174 REPRODUCTIVE JUSTICE OR 2617 01:26:50,174 --> 01:26:51,742 REPRODUCTIVE INJUSTICE CONTEXT 2618 01:26:51,742 --> 01:26:53,577 AND HOW BOTH PRIVATE AND PUBLIC 2619 01:26:53,577 --> 01:26:55,746 ENTITIES CAN BE COOPTED FOR THE 2620 01:26:55,746 --> 01:26:57,814 PURPOSES OF IMPLEMENTING VARIOUS 2621 01:26:57,814 --> 01:26:59,283 KINDS OF STATE CONTROL OVER 2622 01:26:59,283 --> 01:27:01,552 ACCESS TO REPRODUCTIVE SERVICES 2623 01:27:01,552 --> 01:27:03,520 OR DEMONSTRATING WHO MIGHT HAVE 2624 01:27:03,520 --> 01:27:05,189 HAD A MISCARRIAGE OR WHO MIGHT 2625 01:27:05,189 --> 01:27:06,390 HAVE HAD AN ABORTION JUST BASED 2626 01:27:06,390 --> 01:27:08,458 ON THEIR TEMPERATURE ALONE, AND 2627 01:27:08,458 --> 01:27:09,526 IT'S SOMETHING THAT WE SHOULD BE 2628 01:27:09,526 --> 01:27:11,428 THINKING ABOUT, LIKE REALLY 2629 01:27:11,428 --> 01:27:12,729 NONBENIGN USES OF THESE 2630 01:27:12,729 --> 01:27:15,899 TECHNOLOGIES THAT WE'RE SEEM -- 2631 01:27:15,899 --> 01:27:17,568 THAT WERE SEEMINGLY OFF THE 2632 01:27:17,568 --> 01:27:19,670 SHELF IN BEST BUY AS SOMETHING 2633 01:27:19,670 --> 01:27:21,004 YOU CAN BUY AND SUDDENLY THERE'S 2634 01:27:21,004 --> 01:27:24,007 A COMPANY WHO COULD HAVE THAT A 2635 01:27:24,007 --> 01:27:25,209 STATE MIGHT HAVE AN INTEREST IN 2636 01:27:25,209 --> 01:27:26,877 FIENG OUT ABOUT. 2637 01:27:26,877 --> 01:27:28,278 THIS -- FINDING OUT ABOUT. 2638 01:27:28,278 --> 01:27:29,913 THIS HAS HISTORICALLY BEEN TRUE 2639 01:27:29,913 --> 01:27:32,883 IN POLITICAL ACTIVITY, 2640 01:27:32,883 --> 01:27:34,751 GEOLOCATION, IN AREAS LIKE 2641 01:27:34,751 --> 01:27:36,386 TAIWAN SPHRAMPLE A PLACE WHERE 2642 01:27:36,386 --> 01:27:39,790 PEOPLE REALLY EXPERIENCED THE 2643 01:27:39,790 --> 01:27:41,325 HARMS OF THEIR DEVICES REGARDING 2644 01:27:41,325 --> 01:27:42,859 WHERE THEY ARE WITH REGARD TO 2645 01:27:42,859 --> 01:27:44,127 POLITICAL ACTIVITIES. 2646 01:27:44,127 --> 01:27:46,997 AND AGAIN, THE QUESTION WHEN 2647 01:27:46,997 --> 01:27:48,198 YOU'RE THINKING ABOUT DOING 2648 01:27:48,198 --> 01:27:50,300 RESEARCH ON WEARABLES, AHA, 2649 01:27:50,300 --> 01:27:51,735 THERE'S ALL OF THESE PEOPLE THAT 2650 01:27:51,735 --> 01:27:52,803 ARE ALREADY WEARING WEARABLES, 2651 01:27:52,803 --> 01:27:54,471 WHY DON'T WE STUDY THEM BECAUSE 2652 01:27:54,471 --> 01:27:56,206 IT'S AGAIN THE FRICTION TO 2653 01:27:56,206 --> 01:27:58,709 IMPLEMENT IT AND IN SOME CASES 2654 01:27:58,709 --> 01:28:00,410 THE NEED TO DO ADDITIONAL 2655 01:28:00,410 --> 01:28:02,246 INFORMED CONSENT MIGHT SIMPLY BE 2656 01:28:02,246 --> 01:28:04,514 ELIMINATED BY A MINIMAL RISK 2657 01:28:04,514 --> 01:28:05,549 RESEARCH DESIGN. 2658 01:28:05,549 --> 01:28:07,284 AT THE SAME TIME, WHO HAS THOSE 2659 01:28:07,284 --> 01:28:08,819 DEVICES ALREADY AND WHAT ARE WE 2660 01:28:08,819 --> 01:28:11,088 GOING TO LEARN, WHO ARE WE GOING 2661 01:28:11,088 --> 01:28:12,689 TO BE BENEFITING, WHO ARE WE 2662 01:28:12,689 --> 01:28:14,424 GOING TO BE AIF HE CAN BIG THAT 2663 01:28:14,424 --> 01:28:15,926 RESEARCH THAT MIGHT NOT BE 2664 01:28:15,926 --> 01:28:16,793 EQUITABLY DISTRIBUTED? 2665 01:28:16,793 --> 01:28:17,794 AGAIN, IF YOU'RE THINKING ABOUT 2666 01:28:17,794 --> 01:28:19,029 LIKE AN APPLE DEVICE OR WE'RE 2667 01:28:19,029 --> 01:28:20,430 GOING TO DO A STUDY ON PEOPLE 2668 01:28:20,430 --> 01:28:22,165 WHO ALREADY HAVE FIT BITS, AS 2669 01:28:22,165 --> 01:28:23,934 OPPOSED TO A STUDY THAT PROVIDES 2670 01:28:23,934 --> 01:28:25,569 THEM AS PART OF THE RESEARCH. 2671 01:28:25,569 --> 01:28:26,770 AGAIN, THAT DISENLTDZ MEAN THAT 2672 01:28:26,770 --> 01:28:28,538 THIS SECOND WAY -- THAT DOESN'T 2673 01:28:28,538 --> 01:28:30,140 MEAN THAT THIS SECOND WAY IS 2674 01:28:30,140 --> 01:28:31,608 NECESSARILY BETTER, IT COMES 2675 01:28:31,608 --> 01:28:32,342 WITH DIFFERENT RISKS AND 2676 01:28:32,342 --> 01:28:33,443 BENEFITS AND JUST PART OF THE 2677 01:28:33,443 --> 01:28:36,413 CONSIDERATION. 2678 01:28:36,413 --> 01:28:37,948 AND SORT OF THE LAST SORT OF 2679 01:28:37,948 --> 01:28:39,883 MAJOR THEME I'LL HIGHLIGHT IS 2680 01:28:39,883 --> 01:28:41,118 ABOUT, YOU KNOW, WHO OWNS THE 2681 01:28:41,118 --> 01:28:42,419 DATA THAT COMES FROM THESE 2682 01:28:42,419 --> 01:28:42,953 DEVICES? 2683 01:28:42,953 --> 01:28:45,389 WHO OWNS THE INFORMATION ABOUT 2684 01:28:45,389 --> 01:28:46,690 WHERE YOU WERE, WHAT YOU WERE 2685 01:28:46,690 --> 01:28:47,891 DOING, HOW YOU WERE FEELING, 2686 01:28:47,891 --> 01:28:49,293 WHAT YOU WERE SAYING, THINKING, 2687 01:28:49,293 --> 01:28:50,927 WHO YOU WERE WITH? 2688 01:28:50,927 --> 01:28:53,063 WHO OWNS THAT DATA? 2689 01:28:53,063 --> 01:28:54,364 BECAUSE IN THE CURRENT 2690 01:28:54,364 --> 01:28:55,465 REGULATORY FRAMEWORKS AND THE 2691 01:28:55,465 --> 01:28:57,000 CURRENT WAY THAT THESE DEVICES 2692 01:28:57,000 --> 01:28:58,869 ARE ADMINISTERED, IT'S LARGELY 2693 01:28:58,869 --> 01:28:59,636 NOT THE INDIVIDUAL. 2694 01:28:59,636 --> 01:29:01,505 AND IN FACT, IN MANY CASES, THE 2695 01:29:01,505 --> 01:29:03,140 INDIVIDUAL MAY NOT EVEN HAVE 2696 01:29:03,140 --> 01:29:05,208 ACCESS FULLY TO THE BREADTH OF 2697 01:29:05,208 --> 01:29:07,644 THAT DATA, IN PARTICULAR FOR 2698 01:29:07,644 --> 01:29:08,812 THEMSELVES, MUCH LESS THE 2699 01:29:08,812 --> 01:29:10,213 CONTEXT OF THE AGGREGATE DATA 2700 01:29:10,213 --> 01:29:12,549 THAT WOULD BE REQUIRED TO FULLY 2701 01:29:12,549 --> 01:29:13,850 MAKE SENSE OR MEANING OUT OF 2702 01:29:13,850 --> 01:29:15,819 THAT DATA AND TO MAKE IT AT 2703 01:29:15,819 --> 01:29:17,454 LEAST POTENTIALLY USEFUL TO THAT 2704 01:29:17,454 --> 01:29:17,988 INDIVIDUAL. 2705 01:29:17,988 --> 01:29:19,523 SO I THINK CRITICALLY THINKING 2706 01:29:19,523 --> 01:29:20,524 ABOUT IN A RESEARCH DESIGN OF 2707 01:29:20,524 --> 01:29:22,159 WHO OWNS THE DATA, WHO IS GOING 2708 01:29:22,159 --> 01:29:24,895 TO PROFIT FROM THIS, WHO IS SORT 2709 01:29:24,895 --> 01:29:26,730 OF -- WHOSE SORT OF INTENTIONS 2710 01:29:26,730 --> 01:29:28,632 ARE GOING TO BE EITHER VALIDATED 2711 01:29:28,632 --> 01:29:30,367 OR POTENTIALLY CRICTSDZ VIA THE 2712 01:29:30,367 --> 01:29:31,568 RESEARCH YOU'RE DOING -- 2713 01:29:31,568 --> 01:29:32,569 CONTRADICTED VIA THE RESEARCH 2714 01:29:32,569 --> 01:29:33,870 YOU'RE DOING WITH THESE DEVICES 2715 01:29:33,870 --> 01:29:35,605 AND WHO IS GOING TO BE INTIRVED 2716 01:29:35,605 --> 01:29:38,775 THAT, BOTH IN THE CONTEXT OF THD 2717 01:29:38,775 --> 01:29:40,110 THAT, BOTH IN THE CONTEXT OF THE 2718 01:29:40,110 --> 01:29:42,612 STUDY AND IN THE LONG TERM ARE 2719 01:29:42,612 --> 01:29:44,481 THINGS TO THINK ABOUT. 2720 01:29:44,481 --> 01:29:45,782 AS INDIVIDUAL RESEARCHERS, YOU 2721 01:29:45,782 --> 01:29:48,618 KNOW, WE TEND ON THINK ABOUT 2722 01:29:48,618 --> 01:29:50,153 IT'S VERY TRADITIONAL RESEARCH 2723 01:29:50,153 --> 01:29:51,588 ETHICS IS VERY LIKE THE 2724 01:29:51,588 --> 01:29:53,557 INDIVIDUAL RESEARCHER AND LIKE 2725 01:29:53,557 --> 01:29:54,424 YOU'RE PROVIDING A CERTAIN 2726 01:29:54,424 --> 01:29:56,159 AMOUNT OF THINGS ON THIS PERSON, 2727 01:29:56,159 --> 01:29:57,594 BUT IN ADDITION TO US AS 2728 01:29:57,594 --> 01:29:58,795 INDIVIDUALS, WE HAVE TO THINK 2729 01:29:58,795 --> 01:30:01,765 ABOUT OUR EMPLOYERS AND WHAT 2730 01:30:01,765 --> 01:30:03,633 THEY OWN AS A RESULT OR WHAT THE 2731 01:30:03,633 --> 01:30:04,701 COMPANIES WHOSE DEVICES WE'RE 2732 01:30:04,701 --> 01:30:06,002 USING OR IF THEY'RE PROVIDING 2733 01:30:06,002 --> 01:30:07,871 THEM AS A LOAN, RIGHT, AS YOU 2734 01:30:07,871 --> 01:30:09,706 MIGHT THINK ABOUT SOME OF THE 2735 01:30:09,706 --> 01:30:11,041 ELECTRONICS THAT YOU IMPLANT 2736 01:30:11,041 --> 01:30:13,243 SOMETIMES ARE PROVIDED A LOANER 2737 01:30:13,243 --> 01:30:14,544 BASIS, SOMETIMES A WEARABLE IS 2738 01:30:14,544 --> 01:30:16,313 PROVIDED ON A LOANER BASIS, WHO 2739 01:30:16,313 --> 01:30:17,948 REALLY SORT OF OWNS THAT FOR THE 2740 01:30:17,948 --> 01:30:20,884 TIME THAT THE PERSON IS WEARING 2741 01:30:20,884 --> 01:30:21,051 IT? 2742 01:30:21,051 --> 01:30:25,088 WHO OWNS THAT INFORMATION AND, 2743 01:30:25,088 --> 01:30:29,326 YOU KNOW, THE GOOD THING I GUESS 2744 01:30:29,326 --> 01:30:31,094 WE TALK ABOUT IN SOME OF THE 2745 01:30:31,094 --> 01:30:32,062 FUTURE DIRECTIONS IS THE 2746 01:30:32,062 --> 01:30:33,630 POTENTIAL FOR SORT OF NEW 2747 01:30:33,630 --> 01:30:35,031 TECHNOLOGIES AND NEW STRUCTURES 2748 01:30:35,031 --> 01:30:37,234 AND NEW THINKING AROUND HOW 2749 01:30:37,234 --> 01:30:39,403 THESE DEVICES ARE DESIGNED, HOW 2750 01:30:39,403 --> 01:30:40,537 THE RESEARCH AROUND THEM IS 2751 01:30:40,537 --> 01:30:41,938 DESIGNED THAT CAN GIVES 2752 01:30:41,938 --> 01:30:43,273 OPPORTUNITIES TO MAYBE DESIGN 2753 01:30:43,273 --> 01:30:46,643 FOR SORT OF MORE ETHICALLY 2754 01:30:46,643 --> 01:30:47,978 EMBEDDED RESEARCH. 2755 01:30:47,978 --> 01:30:50,080 THIS I THOUGHT WAS A GREAT JUST 2756 01:30:50,080 --> 01:30:53,350 IMAGE FROM AN ARTICLE ABOUT 2757 01:30:53,350 --> 01:30:54,785 CONSUMER WEARABLES IN PARTICULAR 2758 01:30:54,785 --> 01:30:56,853 BECAUSE IT SHOWS HOW SORT OF OUR 2759 01:30:56,853 --> 01:30:58,588 MENTAL MODEL IS REALLY HERE, YOU 2760 01:30:58,588 --> 01:31:00,257 KNOW, ON THE LEFT OF WHAT'S 2761 01:31:00,257 --> 01:31:03,093 INVOLVED IN THE RESEARCH AND IS 2762 01:31:03,093 --> 01:31:04,795 SWERNL A CONSUMER WEARABLE -- 2763 01:31:04,795 --> 01:31:05,929 CERTAINLY WITH A CONSUMER 2764 01:31:05,929 --> 01:31:07,063 WEARABLE, YOU HAVE THE RESEARCH 2765 01:31:07,063 --> 01:31:08,231 AND YOU HAVE THE PARTICIPANTS 2766 01:31:08,231 --> 01:31:09,533 BUT THEN YOU HAVE ALL THESE 2767 01:31:09,533 --> 01:31:11,268 OTHER THIRD PARTIES AND ALL 2768 01:31:11,268 --> 01:31:12,035 THESE THIRD PARTY ACTIVITIES 2769 01:31:12,035 --> 01:31:14,004 GOING ON OVER HERE, UPON WHICH 2770 01:31:14,004 --> 01:31:15,439 THE RESEARCHER RELIES TO GET THE 2771 01:31:15,439 --> 01:31:17,541 DATA THEY NEED FOR THEIR END BUT 2772 01:31:17,541 --> 01:31:20,577 THAT IT'S NOT SORT OF A CLOTHED 2773 01:31:20,577 --> 01:31:21,778 SYSTEM -- CLOSED SYSTEM AND SORT 2774 01:31:21,778 --> 01:31:25,515 OF THE STAKES AT HAND ARE JUST 2775 01:31:25,515 --> 01:31:27,717 FAR MORE WIDESPREAD, AND I THINK 2776 01:31:27,717 --> 01:31:31,021 AGAIN INHERENTLY HIDDEN. 2777 01:31:31,021 --> 01:31:33,757 SO SOME FUTURE DIRECTIONS, AND 2778 01:31:33,757 --> 01:31:35,725 HOW ARE WE DOING ON TIME? 2779 01:31:35,725 --> 01:31:38,895 >> SO YOU'RE DOING GREAT. 2780 01:31:38,895 --> 01:31:40,430 TENNESSEE FOR YOUR LECTURE, THEN 2781 01:31:40,430 --> 01:31:41,865 WE'LL HAVE TEN MINUTES FOR 2782 01:31:41,865 --> 01:31:42,165 DISCUSSION. 2783 01:31:42,165 --> 01:31:43,300 >> OKAY, GREAT. 2784 01:31:43,300 --> 01:31:43,767 PERFECT. 2785 01:31:43,767 --> 01:31:45,302 I'LL HIGHLIGHT SOME POTENTIAL 2786 01:31:45,302 --> 01:31:46,169 TECHNOLOGY SOLUTIONS. 2787 01:31:46,169 --> 01:31:49,573 REALLY THIS IS JUST TO KIND OF 2788 01:31:49,573 --> 01:31:50,540 INTRODUCE THESE SOLUTION AREAS 2789 01:31:50,540 --> 01:31:53,610 THAT HAVE THE POTENTIAL TO HAVE 2790 01:31:53,610 --> 01:31:54,611 SIGNIFICANCE FOR SOME OF THE 2791 01:31:54,611 --> 01:31:56,012 CHALLENGES THAT WE WERE TALKING 2792 01:31:56,012 --> 01:31:56,546 ABOUT. 2793 01:31:56,546 --> 01:31:59,182 SO THE FIRST IS BLOCKCHAIN 2794 01:31:59,182 --> 01:31:59,683 TECHNOLOGY. 2795 01:31:59,683 --> 01:32:00,484 FOR THOSE WHO MAY NOT BE 2796 01:32:00,484 --> 01:32:02,252 FAMILIAR WITH IT, THE MOST 2797 01:32:02,252 --> 01:32:04,754 FAMOUS EXAMPLE IS BITCOIN. 2798 01:32:04,754 --> 01:32:07,424 THE FUNDAMENTAL PRINCIPLE BEHIND 2799 01:32:07,424 --> 01:32:08,525 BLOCKCHAIN TECHNOLOGY IS A 2800 01:32:08,525 --> 01:32:10,494 DISTRIBUTED LEDGER, WHERE 2801 01:32:10,494 --> 01:32:12,796 EVERYBODY HAS ACCESS TO THE SAME 2802 01:32:12,796 --> 01:32:16,166 SET OF THE DATA ON THEIR OWN 2803 01:32:16,166 --> 01:32:18,101 SORT OF IN A LOCAL CONTEXT, SO 2804 01:32:18,101 --> 01:32:20,670 THE SORT OF SHARED VERSION OF 2805 01:32:20,670 --> 01:32:23,974 THE TRUTH IS SORT OF UNDERLYING 2806 01:32:23,974 --> 01:32:25,275 PRINCIPLE FOR A BLOCKCHAIN 2807 01:32:25,275 --> 01:32:25,709 TECHNOLOGY. 2808 01:32:25,709 --> 01:32:26,576 SO WHEN YOU THINK ABOUT IT IN 2809 01:32:26,576 --> 01:32:28,211 TERMS OF A WEARABLE, HOW THIS 2810 01:32:28,211 --> 01:32:29,112 MIGHT BE SIGNIFICANT, IF 2811 01:32:29,112 --> 01:32:30,547 EVERYBODY WHO IS, SAY, WEARING 2812 01:32:30,547 --> 01:32:33,183 THE WEARABLES IN YOUR STUDY HAD 2813 01:32:33,183 --> 01:32:35,018 ACCESS TO THEIR DATA AS WELL AS 2814 01:32:35,018 --> 01:32:36,686 ALL OF THE DATA THAT YOU WERE 2815 01:32:36,686 --> 01:32:37,721 COLLECTING FOR THE STUDY AND 2816 01:32:37,721 --> 01:32:39,656 WERE ABLE TO ACTUALLY BE 2817 01:32:39,656 --> 01:32:43,493 INCLUDED IN THE, AT LEAST AS 2818 01:32:43,493 --> 01:32:45,228 PEOPLE WHO HAD ACCESS TO AND THE 2819 01:32:45,228 --> 01:32:46,496 ABILITY TO ANALYZE AND INTERPRET 2820 01:32:46,496 --> 01:32:47,631 FOR THEMSELVES THAT RESEARCH 2821 01:32:47,631 --> 01:32:49,299 DATA CREATES AN OPPORTUNITY ON 2822 01:32:49,299 --> 01:32:50,734 THINK ABOUT REALLY THE STRUCTURE 2823 01:32:50,734 --> 01:32:53,236 OF YOUR DATA ARCHITECTURE AS ONE 2824 01:32:53,236 --> 01:32:56,106 THAT'S INHERENTLY INCLUSIVE AND 2825 01:32:56,106 --> 01:32:57,741 INHERENTLY, YOU KNOW, HAS BUILT 2826 01:32:57,741 --> 01:33:00,143 IN MECHANISMS FOR ENFORCING 2827 01:33:00,143 --> 01:33:01,878 TRUST FOR PROVE ABILITY, RIGHT, 2828 01:33:01,878 --> 01:33:03,847 SOIT NOT JUST THE COMPANY -- SO 2829 01:33:03,847 --> 01:33:05,048 IT'S NOT JUST THE COMPANY WHO 2830 01:33:05,048 --> 01:33:06,683 MADE THE DEVICES, THE ONE WHO 2831 01:33:06,683 --> 01:33:08,218 GETS DATASET AND GETS TO ANALYZE 2832 01:33:08,218 --> 01:33:10,654 IT AND GETS TO TELL THE WORLD 2833 01:33:10,654 --> 01:33:12,722 ABOUT WHAT THEY FOUND, IT ALSO 2834 01:33:12,722 --> 01:33:15,025 CREATES MECHANISMS TO ENFORCE 2835 01:33:15,025 --> 01:33:16,760 NOT ABILITY FOR THOSE RESEARCH 2836 01:33:16,760 --> 01:33:17,994 FINDINGS AND FOR REALLY JUST 2837 01:33:17,994 --> 01:33:19,829 SHARING THE ACCESS TO THE 2838 01:33:19,829 --> 01:33:22,899 INFORMATION IN A WAY THAT 2839 01:33:22,899 --> 01:33:27,737 DEMOCRATIZES IT FUNDAMENTALLY. 2840 01:33:27,737 --> 01:33:29,773 THERE'S A WHOLE SORT OF CULTURAL 2841 01:33:29,773 --> 01:33:31,541 MOVEMENT AROUND BLOCKCHAIN 2842 01:33:31,541 --> 01:33:33,076 TECHNOLOGY TYPICALLY CALLED WEB 2843 01:33:33,076 --> 01:33:35,178 3 MOVEMENT WHICH REALLY HAS AT 2844 01:33:35,178 --> 01:33:37,881 ITS FUNDAMENTAL CORE THE IDEA 2845 01:33:37,881 --> 01:33:39,883 THAT THE OWNERSHIP OF THE WEB OR 2846 01:33:39,883 --> 01:33:42,485 THE OWNERSHIP OF THE DIGITAL 2847 01:33:42,485 --> 01:33:44,721 SPACE NEEDS TO BE DEMOCRATIZED 2848 01:33:44,721 --> 01:33:46,456 FOR THE FUTURE OF DEMOCRACY TO 2849 01:33:46,456 --> 01:33:48,325 BE REAL AND TO BE MAINTAINED, 2850 01:33:48,325 --> 01:33:49,526 WHEREAS WE THINK ABOUT ALL OF 2851 01:33:49,526 --> 01:33:54,264 OUR SOCIAL AND POLITICAL 2852 01:33:54,264 --> 01:33:55,332 ORGANIZATIONS IN THE PHYSICAL 2853 01:33:55,332 --> 01:33:56,866 WORMED THAT HAVE CERTAIN 2854 01:33:56,866 --> 01:33:59,703 PRINCIPLES EMBEDDED IN THEM AND 2855 01:33:59,703 --> 01:34:01,137 CERTAIN DEMOCRATIZED OWNERSHIP 2856 01:34:01,137 --> 01:34:02,872 OVER LIKE OUR BODIES, AND ARE 2857 01:34:02,872 --> 01:34:04,307 YET WHEN YOU GO INTO THE DPIJ 2858 01:34:04,307 --> 01:34:06,376 TAL SPACE, MANY PEOPLE -- 2859 01:34:06,376 --> 01:34:08,712 DIGITAL SPACE, MANY PEOPLE WILL 2860 01:34:08,712 --> 01:34:11,982 THINK OF IT WHERE THERE'S THESE 2861 01:34:11,982 --> 01:34:14,517 LARGE AGGREGATORS THAT LARGE THE 2862 01:34:14,517 --> 01:34:17,787 DATA IN A WAY THAT GIVES THEM 2863 01:34:17,787 --> 01:34:18,655 INESCAPABLE ADVANTAGE OVER 2864 01:34:18,655 --> 01:34:20,190 POTENTIAL COMPETITORS TO THEM, 2865 01:34:20,190 --> 01:34:21,491 MUCH LESS TO THE INDIVIDUALS WHO 2866 01:34:21,491 --> 01:34:22,359 THEY'RE SERVING. 2867 01:34:22,359 --> 01:34:22,592 OKAY. 2868 01:34:22,592 --> 01:34:23,893 SO THOSE ARE SOME OF THE IDEAS 2869 01:34:23,893 --> 01:34:25,962 AROUND THERE. 2870 01:34:25,962 --> 01:34:26,963 ZERO KNOWLEDGE PROOFS IS AN 2871 01:34:26,963 --> 01:34:28,264 IMPORTANT AND NOW REALLY 2872 01:34:28,264 --> 01:34:30,133 STARTING TO TAKE OFF TECHNOLOGY, 2873 01:34:30,133 --> 01:34:35,472 WHERE YOU CAN PROVE 2874 01:34:35,472 --> 01:34:36,906 INFORMATION ABOUT A DATASET 2875 01:34:36,906 --> 01:34:38,441 WITHOUT GETTING ACCESS TO THAT 2876 01:34:38,441 --> 01:34:41,077 DATASET, SO THE REALLY CRITICAL 2877 01:34:41,077 --> 01:34:42,479 FEATURE UNDERLYING 2878 01:34:42,479 --> 01:34:43,113 ZERO-KNOWLEDGE PROOF TECHNOLOGY 2879 01:34:43,113 --> 01:34:44,914 IS THAT I CAN KEEP MY DATA 2880 01:34:44,914 --> 01:34:46,216 PRIVATE FROM YOU AND YOU CAN 2881 01:34:46,216 --> 01:34:48,752 STILL DO ANALYSIS THAT 2882 01:34:48,752 --> 01:34:49,519 DEMONSTRATES WHETHER OR NOT 2883 01:34:49,519 --> 01:34:51,688 CERTAIN CRITERIA LIKE IF A OR B 2884 01:34:51,688 --> 01:34:53,757 IS CORRECT, YOU CAN FIND OUT 2885 01:34:53,757 --> 01:34:56,292 THAT ANSWER IN A PROVEABLE 2886 01:34:56,292 --> 01:34:57,260 MATHEMATICALLY PROVEABLE WAY 2887 01:34:57,260 --> 01:34:58,595 WITHOUT ME EVER SHOWING YOU MY 2888 01:34:58,595 --> 01:35:00,363 DATA, SO THE FACT THAT THOSE 2889 01:35:00,363 --> 01:35:02,532 KINDS OF SORT OF ALGORITHMIC 2890 01:35:02,532 --> 01:35:05,568 PROOFS ARE POSSIBLE WITHOUT 2891 01:35:05,568 --> 01:35:06,803 SHARING DATA CREATES REALLY 2892 01:35:06,803 --> 01:35:07,771 IMPORTANT OPPORTUNITIES IN THE 2893 01:35:07,771 --> 01:35:08,938 SPACE OF WEARABLES WHERE WE 2894 01:35:08,938 --> 01:35:09,739 MIGHT HAVE REALLY IMPORTANT 2895 01:35:09,739 --> 01:35:11,041 REASONS TO KEEP OUR DATA LOCAL 2896 01:35:11,041 --> 01:35:13,910 TO THE DEVICE AND KEEP IT SORT 2897 01:35:13,910 --> 01:35:15,245 OF FUNDAMENTALLY DISTRIBUTED, 2898 01:35:15,245 --> 01:35:16,880 AGAIN, WHETHER IT'S WITH A 2899 01:35:16,880 --> 01:35:18,615 BLOCKCHAIN OR NOT, THAT DATA CAN 2900 01:35:18,615 --> 01:35:20,483 REMAIN LOCAL TO THE DEVICE, 2901 01:35:20,483 --> 01:35:21,584 DOESN'T HAVE TO BE SHARED WITH 2902 01:35:21,584 --> 01:35:23,186 THE COMPANY OR SHARED EVEN WITH 2903 01:35:23,186 --> 01:35:24,387 THE RESEARCHER FOR THEM TO BE 2904 01:35:24,387 --> 01:35:30,894 ABLE TO LEARN FROM IT. 2905 01:35:30,894 --> 01:35:34,698 ANOTHER CATEGORY OF PRIVACY 2906 01:35:34,698 --> 01:35:35,365 PRESERVING TECHNOLOGIES RELEVANT 2907 01:35:35,365 --> 01:35:37,367 HERE, TRUSTED EXECUTION 2908 01:35:37,367 --> 01:35:38,668 ENVIRONMENTS, ALREADY BEING 2909 01:35:38,668 --> 01:35:40,537 IMPLEMENTED IN SOME WEARABLE 2910 01:35:40,537 --> 01:35:42,038 CONTEXT, THOSE INTERESTED IN 2911 01:35:42,038 --> 01:35:43,039 WEARABLE RESEARCH THIS IS A 2912 01:35:43,039 --> 01:35:44,040 REALLY IMPORTANT AND GROWING 2913 01:35:44,040 --> 01:35:45,775 OPPORTUNITY, ESSENTIALLY IT'S 2914 01:35:45,775 --> 01:35:47,110 HARDWARE THAT FUNCTIONS LIKE A 2915 01:35:47,110 --> 01:35:49,646 BLACK BOX BUT ON THE LEVEL OF 2916 01:35:49,646 --> 01:35:50,280 THE INDIVIDUAL. 2917 01:35:50,280 --> 01:35:52,248 SO PEOPLE CAN PUT THEIR DATA IN. 2918 01:35:52,248 --> 01:35:53,216 OTHER PEOPLE CAN'T NECESSARILY 2919 01:35:53,216 --> 01:35:54,017 SEE IT. 2920 01:35:54,017 --> 01:35:56,853 SO IT DOES SORT OF LENDS ITSELF 2921 01:35:56,853 --> 01:35:58,822 TO MAINTAIN BEING PRIVACY OF 2922 01:35:58,822 --> 01:35:59,856 IDENTITY AS WELL AS WHILE AT THE 2923 01:35:59,856 --> 01:36:01,558 SAME TIME CREATING THAT DATA AND 2924 01:36:01,558 --> 01:36:02,992 ALLOWING THAT DATA TO BE USEFUL 2925 01:36:02,992 --> 01:36:04,661 FOR DIFFERENT LEARNING 2926 01:36:04,661 --> 01:36:05,695 FUNCTIONS. 2927 01:36:05,695 --> 01:36:08,131 AND A FOURTH CATEGORY WHICH IS 2928 01:36:08,131 --> 01:36:11,201 PROBABLY THE, YOU KNOW, AT LEAST 2929 01:36:11,201 --> 01:36:12,202 AS DEVELOPED IF NOT MORE 2930 01:36:12,202 --> 01:36:13,737 DEVELOPED I WOULD SAY THAN 2931 01:36:13,737 --> 01:36:15,105 BLOCKCHAIN TOMG AT THIS POINT IS 2932 01:36:15,105 --> 01:36:16,706 A FED -- TECHNOLOGY AT THIS 2933 01:36:16,706 --> 01:36:19,642 POINT A FEDERATED APPROACH TO 2934 01:36:19,642 --> 01:36:20,744 LEARNING, ALTERNATE IS SPLIT 2935 01:36:20,744 --> 01:36:22,078 LEARNING APPROACH, WHERE 2936 01:36:22,078 --> 01:36:23,613 ESSENTIALLY YOU CAN SEND AN 2937 01:36:23,613 --> 01:36:25,014 ALGORITHM TO SOMEBODY'S DEVICE, 2938 01:36:25,014 --> 01:36:26,349 THAT COMPUTATION CAN BE DONE 2939 01:36:26,349 --> 01:36:27,417 LOCALLY, THE MOST COMMON EXAMPLE 2940 01:36:27,417 --> 01:36:28,952 OF THIS IS HOW AUTO CORRECT 2941 01:36:28,952 --> 01:36:31,054 WORKS ON OUR TEXT MESSAGES, SO 2942 01:36:31,054 --> 01:36:33,089 IT HAPPENS SO FAST, THAT'S 2943 01:36:33,089 --> 01:36:34,424 HAPPENING FAST BECAUSE THE 2944 01:36:34,424 --> 01:36:35,759 COMPUTATION IS HAPPENING ON YOUR 2945 01:36:35,759 --> 01:36:37,327 DEVICE AND YOUR TEXT MESSAGES 2946 01:36:37,327 --> 01:36:38,328 NEVER LEAVE THE DEVICE. 2947 01:36:38,328 --> 01:36:39,696 SO THAT'S AN EXAMPLE OF HOW WE 2948 01:36:39,696 --> 01:36:46,102 CAN THINK ABOUT THE DATA AS BEIR 2949 01:36:46,102 --> 01:36:47,837 EMBEDDING A SORT OF ETHICAL 2950 01:36:47,837 --> 01:36:49,172 PRINCIPLES IN THE DESIGN OF HOW 2951 01:36:49,172 --> 01:36:52,776 WE IMPLY MEN THESE TECHNOLOGIES. 2952 01:36:52,776 --> 01:36:53,877 THE FINAL POINT IS REALLY SORT 2953 01:36:53,877 --> 01:36:55,845 OF TAKING THE TECHNOLOGICAL 2954 01:36:55,845 --> 01:36:56,846 IMPLEMENTATION, ONE CATEGORY OF 2955 01:36:56,846 --> 01:36:58,581 WAYS WE CAN COMBAT SOME OF THESE 2956 01:36:58,581 --> 01:37:00,416 CHALLENGES IS IN THE TECHNOLOGY 2957 01:37:00,416 --> 01:37:01,484 ITSELF, IN THE DESIGN ITSELF, IN 2958 01:37:01,484 --> 01:37:04,020 THE DESIGN OF OUR STUDIES IS THE 2959 01:37:04,020 --> 01:37:04,687 OTHER WAY. 2960 01:37:04,687 --> 01:37:06,322 SO IN THE DESIGN OF HOW WE 2961 01:37:06,322 --> 01:37:08,792 INCLUDE AND SHARE GOVERNANCE FOR 2962 01:37:08,792 --> 01:37:09,359 THESE TECHNOLOGIES WITH THE 2963 01:37:09,359 --> 01:37:10,960 PEOPLE WHO WE'RE STUDYING. 2964 01:37:10,960 --> 01:37:13,830 SO HOW YOU MIGHT INCLUDE PEOPLE 2965 01:37:13,830 --> 01:37:15,799 IN THE CONVERSATIONS NOT JUST 2966 01:37:15,799 --> 01:37:17,767 DURING INFORMED CONSENT, BUT 2967 01:37:17,767 --> 01:37:19,636 REGULARLY THROUGHOUT THE 2968 01:37:19,636 --> 01:37:19,869 CONTEXT. 2969 01:37:19,869 --> 01:37:21,037 ONE OF THE THINGS THAT WEARABLES 2970 01:37:21,037 --> 01:37:23,139 ALLOWS YOU TO DO IS STUDY PEOPLE 2971 01:37:23,139 --> 01:37:25,008 THAT ARE VERY, VERY FAR AWAY 2972 01:37:25,008 --> 01:37:25,975 FROM YOU, WITHOUT EVEN PERHAPS 2973 01:37:25,975 --> 01:37:27,076 OBSERVING A PERSON WEARING THE 2974 01:37:27,076 --> 01:37:28,611 DEVICE THAT YOU'RE GETTING DATA 2975 01:37:28,611 --> 01:37:28,945 FROM. 2976 01:37:28,945 --> 01:37:31,247 SO I ENCOURAGE PEOPLE WHO ARE 2977 01:37:31,247 --> 01:37:33,082 STUDYING, YOU KNOW, STUDYING 2978 01:37:33,082 --> 01:37:35,185 WEARABLE DATA TO OBSERVE PEOPLE 2979 01:37:35,185 --> 01:37:37,453 IN THEIR NATURAL HABITAT, IF YOU 2980 01:37:37,453 --> 01:37:38,888 WILL, AND SEE HOW THESE DEVICES 2981 01:37:38,888 --> 01:37:41,191 ARE REALLY AFFECTING PEOPLE, 2982 01:37:41,191 --> 01:37:43,493 GIVE PEOPLE ALSO THE SORT OF 2983 01:37:43,493 --> 01:37:45,461 POWER, PART OF THIS IS THE SCARY 2984 01:37:45,461 --> 01:37:46,663 THING FOR RESEARCHERS IS IF 2985 01:37:46,663 --> 01:37:47,864 YOU'RE GOING TO SAY WE'RE GOING 2986 01:37:47,864 --> 01:37:49,065 TO DISTRIBUTE POWER, WE'RE GOING 2987 01:37:49,065 --> 01:37:51,234 ON GIVE A SAY IN HOW NOT JUST 2988 01:37:51,234 --> 01:37:52,569 WHAT WE THOUGHT WAS GOING TO 2989 01:37:52,569 --> 01:37:53,570 HAPPEN THE IN BEGINNING OF THE 2990 01:37:53,570 --> 01:37:54,470 RESEARCH, BUT WE'RE GOING TO 2991 01:37:54,470 --> 01:37:56,306 GIVE YOU A SAY IN HOW THINGS ARE 2992 01:37:56,306 --> 01:37:58,374 GOING AND THE ABILITY CRITICALLY 2993 01:37:58,374 --> 01:38:00,610 TO OPT OUT, TO WITHDRAW, TO 2994 01:38:00,610 --> 01:38:02,478 CHANGE THINGS BASED ON WHAT ENDS 2995 01:38:02,478 --> 01:38:05,448 UP HAPPENING REQUIRES BOTH 2996 01:38:05,448 --> 01:38:06,883 DISTRIBUTION OF AND TRANSPARENCY 2997 01:38:06,883 --> 01:38:08,284 ABOUT HOW THE RESEARCH IS GOING, 2998 01:38:08,284 --> 01:38:09,285 WHAT WE'RE LEARNING, WHAT WE'RE 2999 01:38:09,285 --> 01:38:10,820 FINDING, WHAT WE'RE DOING WITH 3000 01:38:10,820 --> 01:38:14,524 IT, BUT ALSO OF THE POWER TO 3001 01:38:14,524 --> 01:38:15,859 DIRECT CHANGES AND FOR PEOPLE 3002 01:38:15,859 --> 01:38:18,494 WHO ARE WEARING THE DEVICES OR 3003 01:38:18,494 --> 01:38:21,197 PART OF THE RESEARCH TO EFFECT 3004 01:38:21,197 --> 01:38:22,398 SORT OF THE DIRECTION OF THE 3005 01:38:22,398 --> 01:38:23,733 RESEARCH, WHICH REQUIRES REALLY 3006 01:38:23,733 --> 01:38:27,670 LIKE A LOT OF TRUST BOTH IN THE 3007 01:38:27,670 --> 01:38:29,205 RESEARCH COMMUNITY AND PLANS 3008 01:38:29,205 --> 01:38:30,907 REALLY FOR HOW YOU'RE GOING TO 3009 01:38:30,907 --> 01:38:33,109 DO THINGS DIFFERENTLY IF THE 3010 01:38:33,109 --> 01:38:34,544 RESEARCH PARTICIPANTS DECIDE 3011 01:38:34,544 --> 01:38:35,979 THAT THEY DIDN'T LIKE THE WAY 3012 01:38:35,979 --> 01:38:37,513 THAT THE RESEARCH WAS GOING OR 3013 01:38:37,513 --> 01:38:40,016 THEY DIDN'T LIKE THE CONCLUSIONS 3014 01:38:40,016 --> 01:38:41,985 OR, YOU KNOW, THE CONTENT ABOUT 3015 01:38:41,985 --> 01:38:43,519 THEM THAT YOU WERE PUBLISHING. 3016 01:38:43,519 --> 01:38:44,954 SO IN ORDER FOR THEM TO EVEN BE 3017 01:38:44,954 --> 01:38:46,856 ABLE TO REVIEW THAT, THEY HAVE 3018 01:38:46,856 --> 01:38:50,093 TO BE ABLE TO SEE THAT THAT DATA 3019 01:38:50,093 --> 01:38:55,231 AND HAVE TRANSPARENCY ABOUT 3020 01:38:55,231 --> 01:38:55,431 THAT. 3021 01:38:55,431 --> 01:38:57,400 SPROIF MY LAST THREE TAKE AWAYS 3022 01:38:57,400 --> 01:38:58,968 HERE, ONE, I HOPE TO HAVE AT 3023 01:38:58,968 --> 01:39:01,037 LEAST CONVINCED YOU OR TO 3024 01:39:01,037 --> 01:39:03,539 CONSIDER WEARABLES AS REALLY A 3025 01:39:03,539 --> 01:39:05,842 TRULY INVASIVE METHODOLOGY GIVEN 3026 01:39:05,842 --> 01:39:07,810 THE AMOUNT OF DATA THAT THEY CAN 3027 01:39:07,810 --> 01:39:10,113 COLLECT AND GIVEN THE AMOUNT OF 3028 01:39:10,113 --> 01:39:11,748 ALMOST THIS PARASITIC NATURE OF 3029 01:39:11,748 --> 01:39:13,416 HOW THEY CAN ABSORB THINGS AND 3030 01:39:13,416 --> 01:39:14,717 HOW THEY CAN REALLY, HOW THEY'RE 3031 01:39:14,717 --> 01:39:17,987 TAKING FROM PEOPLE IN A WAY THAT 3032 01:39:17,987 --> 01:39:20,523 I THINK IT MAY BE VERY EASY TO 3033 01:39:20,523 --> 01:39:22,492 FORGET AND THAT THEY RELY ON 3034 01:39:22,492 --> 01:39:22,725 TRUST. 3035 01:39:22,725 --> 01:39:25,028 THE SECOND IS TO THINK ABOUT, 3036 01:39:25,028 --> 01:39:27,397 YOU KNOW, CHALLENGE YOUR 3037 01:39:27,397 --> 01:39:28,164 ASSUMPTIONS, ESPECIALLY WHEN 3038 01:39:28,164 --> 01:39:29,866 YOU'RE USING CONSUMER DEVICES, 3039 01:39:29,866 --> 01:39:32,802 BUT I'M ALMOST EQUALLY 3040 01:39:32,802 --> 01:39:35,305 SIGNIFICANT I THINK FOR MEDICAL 3041 01:39:35,305 --> 01:39:36,739 DEVICES, BUT CHALLENGE YOUR 3042 01:39:36,739 --> 01:39:37,941 ASSUMPTIONS ABOUT THE 3043 01:39:37,941 --> 01:39:38,875 APPLICABILITY AND VALIDITY OF 3044 01:39:38,875 --> 01:39:40,777 THE USE OF THOSE MATERIALS FOR 3045 01:39:40,777 --> 01:39:42,812 YOUR INTENDED PURPOSE BECAUSE IF 3046 01:39:42,812 --> 01:39:44,280 YOU DIG INTO THE DATA, YOU WANT 3047 01:39:44,280 --> 01:39:47,517 TO BE SURE THAT YOU'RE STANDING 3048 01:39:47,517 --> 01:39:49,385 ON SOLID GROUND FROM WHERE YOU 3049 01:39:49,385 --> 01:39:50,820 WORK, AND IT'S JUST CERTAINLY 3050 01:39:50,820 --> 01:39:51,721 NOT GUARANTEED. 3051 01:39:51,721 --> 01:39:53,523 AND THE LAST IS THAT, YOU KNOW, 3052 01:39:53,523 --> 01:39:56,059 THERE ARE POWER ASYMMETRIES 3053 01:39:56,059 --> 01:39:58,594 STRUCTURALLY BUILT INTO HOW 3054 01:39:58,594 --> 01:40:00,129 PEOPLE, YOU KNOW WHORKS GETS TO 3055 01:40:00,129 --> 01:40:01,531 ACCESS THAT -- WHO GETS TO 3056 01:40:01,531 --> 01:40:03,499 ACCESS THAT DATA AND WHO GETS TO 3057 01:40:03,499 --> 01:40:04,600 COMMERCIALIZE IT AND WHO GETS TO 3058 01:40:04,600 --> 01:40:06,035 HAVE CONTROL OVER IT AND WHEN 3059 01:40:06,035 --> 01:40:07,870 IT'S THAT REALLY INTIMATE DATA, 3060 01:40:07,870 --> 01:40:09,539 THERE ARE ALSO OPPORTUNITIES 3061 01:40:09,539 --> 01:40:10,974 BOTH TECHNOLOGICALLY AND IN YOUR 3062 01:40:10,974 --> 01:40:15,345 RESEARCH DESIGNS THAT INCLUDE 3063 01:40:15,345 --> 01:40:17,113 PARTICIPANTS, THAT PROTECT THEIR 3064 01:40:17,113 --> 01:40:18,982 INTERESTS FROM PRIVACY AND 3065 01:40:18,982 --> 01:40:19,749 AUTONOMY STANDPOINT. 3066 01:40:19,749 --> 01:40:21,184 SO I'LL LEAVE IT AT THAT, AND I 3067 01:40:21,184 --> 01:40:24,454 LOOK FORWARD TO YOUR QUESTIONS. 3068 01:40:24,454 --> 01:40:26,189 [APPLAUSE] 3069 01:40:26,189 --> 01:40:27,957 I'LL TRY TO STOP HITTING THESE. 3070 01:40:27,957 --> 01:40:33,029 >> THANK YOU SO MUCH. 3071 01:40:33,029 --> 01:40:35,431 SO AS YOU PROBABLY SAW WITH 3072 01:40:35,431 --> 01:40:38,501 SASKIA'S LECTURE, WE HAVE FOLK 3073 01:40:38,501 --> 01:40:40,003 IN THE ROOM WHO CAN GO TO THE 3074 01:40:40,003 --> 01:40:41,471 MIC TO ASK QUESTIONS, AND I ALSO 3075 01:40:41,471 --> 01:40:43,006 HAVE SOME QUESTIONS FROM OUR 3076 01:40:43,006 --> 01:40:43,773 VIRTUAL AUDIENCE. 3077 01:40:43,773 --> 01:40:47,176 SO AS YOU ALL RUSH TO THE MICS, 3078 01:40:47,176 --> 01:40:50,346 HERE IS A QUESTION FROM LAURA. 3079 01:40:50,346 --> 01:40:52,648 SHE SAYS, I'M INTERESTED IN THE 3080 01:40:52,648 --> 01:40:54,050 SPEAKER'S TAKE ON THE RISKS 3081 01:40:54,050 --> 01:40:57,220 ASSOCIATED WITH POTENTIALLY 3082 01:40:57,220 --> 01:40:58,988 CONFLICTING PRIORITIES OF 3083 01:40:58,988 --> 01:41:00,123 CONSUMER DEVICES. 3084 01:41:00,123 --> 01:41:04,127 FOR EXAMPLE, HEALTH VERSUS 3085 01:41:04,127 --> 01:41:05,161 MARKETABILITY, PROFITABILITY, 3086 01:41:05,161 --> 01:41:06,963 AND WHETHER SUCH CONFLICTING 3087 01:41:06,963 --> 01:41:08,831 PRIORITIES MAY RESULT IN 3088 01:41:08,831 --> 01:41:11,801 REDUCING HEALTH. 3089 01:41:11,801 --> 01:41:14,203 SO ADS FOR FAST FOOD LOCATIONS 3090 01:41:14,203 --> 01:41:15,638 OR HELIACTIVITIES THAT AREN'T 3091 01:41:15,638 --> 01:41:17,607 EVIDENCE-BASED OR REDUCING 3092 01:41:17,607 --> 01:41:20,243 AUTONOMY VIA PSYCHOLOGICAL 3093 01:41:20,243 --> 01:41:20,610 MANIPULATION H. 3094 01:41:20,610 --> 01:41:22,512 >> YEAH, I THINK THAT'S A REALLY 3095 01:41:22,512 --> 01:41:24,313 GREAT QUESTION. 3096 01:41:24,313 --> 01:41:26,349 I THINK ONE GOOD EXAMPLE OF THIS 3097 01:41:26,349 --> 01:41:28,851 THAT I THINK ABOUT IS WITH SLEEP 3098 01:41:28,851 --> 01:41:29,485 TRACKING. 3099 01:41:29,485 --> 01:41:29,919 RIGHT? 3100 01:41:29,919 --> 01:41:30,119 OKAY. 3101 01:41:30,119 --> 01:41:33,322 ASSUME THAT THE SLEEP TRACKER IS 3102 01:41:33,322 --> 01:41:34,724 WORKING. 3103 01:41:34,724 --> 01:41:37,894 PROVE THAT YOU'VE ACTUALLY 3104 01:41:37,894 --> 01:41:38,661 IMPROVED PEOPLE'S SLEEP AS A 3105 01:41:38,661 --> 01:41:40,763 RESULT OF THEIR USE OF THOSE 3106 01:41:40,763 --> 01:41:43,066 DEVICES, BECAUSE MANY PEOPLE WHO 3107 01:41:43,066 --> 01:41:45,001 USE DEVICES FOR TRACKING 3108 01:41:45,001 --> 01:41:47,103 PURPOSES EXPERIENCE BENEFITS, 3109 01:41:47,103 --> 01:41:49,405 MANY PEOPLE EXPERIENCE HARMS, 3110 01:41:49,405 --> 01:41:51,474 AND THAT REALLY ONLY COMES OUT 3111 01:41:51,474 --> 01:41:52,708 WITH RESEARCH OVER TIME, WHICH 3112 01:41:52,708 --> 01:41:54,677 IS WHY RESEARCH ON THESE 3113 01:41:54,677 --> 01:41:56,746 DEVICES, EVEN IF THEY'RE ALREADY 3114 01:41:56,746 --> 01:41:57,947 IMPLEMENTED, IS SO CRITICAL, 3115 01:41:57,947 --> 01:42:00,016 LIKE WE NEED THAT LONG-TERM SORT 3116 01:42:00,016 --> 01:42:01,551 OF LIKE ALL THE WAYS THAT PEOPLE 3117 01:42:01,551 --> 01:42:03,086 ARE ACTUALLY USING THESE 3118 01:42:03,086 --> 01:42:04,854 DEVICES, WE NEED TO STUDY THAT. 3119 01:42:04,854 --> 01:42:06,489 IS IT ACTUALLY MAKING THEM 3120 01:42:06,489 --> 01:42:08,357 HEALTHIER OR IS IT 3121 01:42:08,357 --> 01:42:09,659 PSYCHOLOGICALLY OR PHYSICALLY 3122 01:42:09,659 --> 01:42:11,060 TOXIC IN SOME WAY AND REALLY ON 3123 01:42:11,060 --> 01:42:11,761 EVERY LEVEL? 3124 01:42:11,761 --> 01:42:13,062 SO I DON'T KNOW IF THAT AN PS 3125 01:42:13,062 --> 01:42:15,031 THE QUESTION -- IF THAT ANSWER 3126 01:42:15,031 --> 01:42:16,466 PS THE QUESTION, BUT I THINK 3127 01:42:16,466 --> 01:42:17,667 THAT IT'S AN OPEN QUESTION AND 3128 01:42:17,667 --> 01:42:19,402 IT'S GOING ON VARY CASE BY CASE 3129 01:42:19,402 --> 01:42:21,604 AS TO WHETHER A PROPOSED BENEFIT 3130 01:42:21,604 --> 01:42:24,674 IS, IN FACT, BEING ACCRUED TO 3131 01:42:24,674 --> 01:42:26,175 PEOPLE AND ESPECIALLY WHEN 3132 01:42:26,175 --> 01:42:28,044 DEVICES ARE NOT FDA, YOU KNOW, 3133 01:42:28,044 --> 01:42:29,579 THROUGH THE FDA PROCESS, THERE'S 3134 01:42:29,579 --> 01:42:31,347 NO POST-MARKET ANALYSIS. 3135 01:42:31,347 --> 01:42:33,182 BASICALLY IT SELLS OR IT 3136 01:42:33,182 --> 01:42:33,649 DOESN'T. 3137 01:42:33,649 --> 01:42:34,183 RIGHT? 3138 01:42:34,183 --> 01:42:36,319 THE MARKET DECIDES. 3139 01:42:36,319 --> 01:42:37,687 WHICH IS QUITE DIFFERENT THAN IT 3140 01:42:37,687 --> 01:42:38,688 BEING HEALTHY OR NOT. 3141 01:42:38,688 --> 01:42:41,757 >> YEAH, AND IT BRINGS UP SOME 3142 01:42:41,757 --> 01:42:43,392 OF THE ISSUES THAT SASKIA 3143 01:42:43,392 --> 01:42:46,863 BROUGHT UP INTHERMS OF THE SORT 3144 01:42:46,863 --> 01:42:50,066 OF WHAT ARE, IF ANY OF THE 3145 01:42:50,066 --> 01:42:52,435 RESEARCHERS' OBLIGATIONS TO 3146 01:42:52,435 --> 01:42:55,972 CARRY ON THAT SORT OF LONG-TERM 3147 01:42:55,972 --> 01:42:58,808 DATA COLLECTION TO SEE HOW WHAT 3148 01:42:58,808 --> 01:43:00,543 MIGHT HAVE BEEN, YOU KNOW, 3149 01:43:00,543 --> 01:43:02,845 INTERESTING IN THE CONTEXT 3150 01:43:02,845 --> 01:43:04,080 OFFING -- I'M GETTING SOME 3151 01:43:04,080 --> 01:43:05,815 FEEDBACK, I'LL MOVE BACK THIS 3152 01:43:05,815 --> 01:43:08,651 WAY -- INTERESTING FINDINGS THAT 3153 01:43:08,651 --> 01:43:10,753 YOU MIGHT COLLECT AS A RESULT OF 3154 01:43:10,753 --> 01:43:12,922 A RESEARCH PHASE THAT IF THE 3155 01:43:12,922 --> 01:43:14,891 PERSON CONTINUES TO USE THAT 3156 01:43:14,891 --> 01:43:17,059 APP, ARE THERE LONG-TERM DOWN 3157 01:43:17,059 --> 01:43:19,462 SIDES TO DOING SO, AND WE WON'T 3158 01:43:19,462 --> 01:43:21,330 KNOW IF THERE ISN'T ANY 3159 01:43:21,330 --> 01:43:25,968 LONG-TERM FOLLOW-UP OF THOSE 3160 01:43:25,968 --> 01:43:27,003 INDIVIDUALS. 3161 01:43:27,003 --> 01:43:28,938 >> THERE'S A GROWING MOVEMENT TO 3162 01:43:28,938 --> 01:43:30,439 START CONSIDERING SOME OF THESE 3163 01:43:30,439 --> 01:43:31,674 APPLICATIONS AND WEARABLES AGAIN 3164 01:43:31,674 --> 01:43:33,176 TEND TO HAVE A PHYSICAL HARDWARE 3165 01:43:33,176 --> 01:43:37,580 COMPONENT AS WELL AS A SOFTWARE 3166 01:43:37,580 --> 01:43:38,681 COMPONENT BUT THERE'S A GROWING 3167 01:43:38,681 --> 01:43:39,649 MOVEMENT TO CONSIDER THESE 3168 01:43:39,649 --> 01:43:41,184 THINGS MORE AS LIKE MEDICINES 3169 01:43:41,184 --> 01:43:42,585 AND THEREFORE SORTED OF 3170 01:43:42,585 --> 01:43:45,021 REQUIRING MORE RESEARCH TO FIND 3171 01:43:45,021 --> 01:43:47,857 OUT REALLY HOW, YOU KNOW, AGAIN, 3172 01:43:47,857 --> 01:43:49,392 IS THIS JUST THE HAWTHORNE 3173 01:43:49,392 --> 01:43:51,194 EFFECT THAT WE WERE LIKE BECAUSE 3174 01:43:51,194 --> 01:43:52,461 WE WERE WATCHING SO WE SAW AND 3175 01:43:52,461 --> 01:43:54,897 THEN WE CHANGED FOR A BIT, BUT 3176 01:43:54,897 --> 01:43:56,866 THEN OUR SORT OF WE GOT BURNED 3177 01:43:56,866 --> 01:43:59,235 OUT ON THAT STIM EXPLUS IT NO 3178 01:43:59,235 --> 01:44:00,436 LONGER WAS EFFECTIVE? 3179 01:44:00,436 --> 01:44:02,205 WE DOAN KNOW FOR A LOT OF 3180 01:44:02,205 --> 01:44:04,173 THIS -- ON THAT STIMULUS AND IT 3181 01:44:04,173 --> 01:44:05,841 NO LONGER WAS EFFECTIVE? 3182 01:44:05,841 --> 01:44:06,943 WE DON'T KNOW FOR A LOT OF THIS 3183 01:44:06,943 --> 01:44:07,143 STUFF. 3184 01:44:07,143 --> 01:44:09,245 >> THE IDEA OF REGULATING THESE 3185 01:44:09,245 --> 01:44:12,748 AS MEDICINES ALSO BRINGS UP YOUR 3186 01:44:12,748 --> 01:44:16,552 POINT ABOUT BOTH CAUTIONS TO THE 3187 01:44:16,552 --> 01:44:18,521 RESEARCHERS TO KNOW, LIKE, OH, I 3188 01:44:18,521 --> 01:44:21,457 COULD USE THIS FOR THAT, FOR 3189 01:44:21,457 --> 01:44:22,892 THEM TO UNDERSTAND THE DATA 3190 01:44:22,892 --> 01:44:25,528 THAT'S BEING USED TO SEE THAT 3191 01:44:25,528 --> 01:44:27,496 THAT STHING EFFECTIVE IN 3192 01:44:27,496 --> 01:44:28,798 MEASURING -- THAT THING IS 3193 01:44:28,798 --> 01:44:31,334 EFFECTIVE IN MEASURING THE THING 3194 01:44:31,334 --> 01:44:33,436 OF INTEREST, AND FOR US AS 3195 01:44:33,436 --> 01:44:36,272 POTENTIAL PARTICIPANTS OF MAYBE 3196 01:44:36,272 --> 01:44:38,641 ASKING THE INVESTIGATOR, YOU 3197 01:44:38,641 --> 01:44:39,742 KNOW, WHAT DO YOU KNOW ABOUT 3198 01:44:39,742 --> 01:44:40,643 THIS TECHNOLOGY? 3199 01:44:40,643 --> 01:44:42,712 WHY DID YOU DECIDE TO USE THIS 3200 01:44:42,712 --> 01:44:45,881 PARTICULAR TECHNOLOGY TO FOLLOW 3201 01:44:45,881 --> 01:44:48,384 THIS, OR JUST MY KNOW BEING 3202 01:44:48,384 --> 01:44:50,152 ENOUGH, BEING PRESENTED ENOUGH 3203 01:44:50,152 --> 01:44:51,120 INFORMATION IN THE INFORMED 3204 01:44:51,120 --> 01:44:53,356 CONSENT FORM TO APPRECIATE WHAT 3205 01:44:53,356 --> 01:44:56,626 THE LIMITATIONS OF THIS 3206 01:44:56,626 --> 01:45:01,831 TECHNOLOGY ARE. 3207 01:45:01,831 --> 01:45:03,432 >> YEAH, AND I THINK THE ABILITY 3208 01:45:03,432 --> 01:45:05,167 TO DO REALLY MEANINGFUL INFORMED 3209 01:45:05,167 --> 01:45:06,102 CONSENT, ESPECIALLY WHEN IT 3210 01:45:06,102 --> 01:45:09,205 MIGHT NOT BE REQUIRED IN THIS 3211 01:45:09,205 --> 01:45:10,206 CONTEXT, CONSIDERED MINIMAL 3212 01:45:10,206 --> 01:45:11,607 RISK, CONSIDERED THE KIND OF 3213 01:45:11,607 --> 01:45:13,643 TWHRING AT MOST YOU'RE CLICKING 3214 01:45:13,643 --> 01:45:15,111 A BOX, ACCEPTING THE COOKIES, 3215 01:45:15,111 --> 01:45:16,846 THE FRICTION TO ADOPTION 3216 01:45:16,846 --> 01:45:18,381 COMPARED TO LIKE AN IMPLANTED 3217 01:45:18,381 --> 01:45:21,117 DEVICE IS SO LOW, AND, IN FACT, 3218 01:45:21,117 --> 01:45:22,785 MANY OF THEM HAVE ALREADY BEEN 3219 01:45:22,785 --> 01:45:24,186 ADOPTED, IN FACT, THAT'S WHY WE 3220 01:45:24,186 --> 01:45:26,489 THINK THERE'S THEY'RE A GOOD 3221 01:45:26,489 --> 01:45:27,690 PLATFORM FOR OUR RESEARCH, IT 3222 01:45:27,690 --> 01:45:29,992 REALLY BEGS THE QUESTION OF WELL 3223 01:45:29,992 --> 01:45:31,093 WHAT ELSE NEEDS TO BE DONE IN 3224 01:45:31,093 --> 01:45:32,828 TERMS OF LIKE ACTUALLY SHARING 3225 01:45:32,828 --> 01:45:33,929 WHAT WE'RE FINDING, SHARING WHAT 3226 01:45:33,929 --> 01:45:35,564 WE'RE DOING WITH IT, SO THAT 3227 01:45:35,564 --> 01:45:37,867 PEOPLE CAN UNDERSTAND THE 3228 01:45:37,867 --> 01:45:39,302 CONTENT AND THE CONTEXT, RIGHT, 3229 01:45:39,302 --> 01:45:40,803 OF EVEN WHAT BHENT ON THAT FORM 3230 01:45:40,803 --> 01:45:48,978 IN THE FIRST PLACE. 3231 01:45:48,978 --> 01:45:49,945 >> L. 3232 01:45:49,945 --> 01:45:51,747 I WOULD LOVE TO, IF YOU HAVE ANY 3233 01:45:51,747 --> 01:45:52,848 QUESTIONS OR THOUGHT, I WOULD 3234 01:45:52,848 --> 01:45:55,484 LOVE TO HEAR, OR CHALLENGES, I 3235 01:45:55,484 --> 01:45:55,885 WELCOME VERY MUCH. 3236 01:45:55,885 --> 01:45:57,553 >> I HAVE ANOTHER QUESTION FROM 3237 01:45:57,553 --> 01:46:01,057 OUR VIRTUAL AUDIENCE. 3238 01:46:01,057 --> 01:46:03,592 IETA ASKS, IN WEARABLES, SUCH AS 3239 01:46:03,592 --> 01:46:05,428 SMARTWATCHES, IS THERE ANY 3240 01:46:05,428 --> 01:46:07,263 LEGISLATION FOR DATA PROTECTION 3241 01:46:07,263 --> 01:46:10,366 IN THE U.S. AS IN EUROPE THAT 3242 01:46:10,366 --> 01:46:11,767 LEGAL DATA PROTECTION COULD BE 3243 01:46:11,767 --> 01:46:14,503 RELATED TO RESEARCH ETHICS, FOR 3244 01:46:14,503 --> 01:46:14,737 EXAMPLE? 3245 01:46:14,737 --> 01:46:15,971 I DON'T KNOW HOW FLUENT YOU ARE 3246 01:46:15,971 --> 01:46:17,673 IN THE EU RULES ABOUT THIS. 3247 01:46:17,673 --> 01:46:19,975 >> YEAH, IT'S VERY INTERESTING, 3248 01:46:19,975 --> 01:46:20,309 RIGHT? 3249 01:46:20,309 --> 01:46:26,749 SO A LOT OF THE EU GOVERNANCE, 3250 01:46:26,749 --> 01:46:27,950 YOU KNOW, FROM LIKE A POLITICAL 3251 01:46:27,950 --> 01:46:30,486 SENSE OVER DATA IS FAR STRONGER 3252 01:46:30,486 --> 01:46:31,687 THAN WHAT WE HAVE IN THE UNITED 3253 01:46:31,687 --> 01:46:31,921 STATES. 3254 01:46:31,921 --> 01:46:33,222 AT THE SAME TIME, MOST OF THE 3255 01:46:33,222 --> 01:46:34,623 TECHNOLOGIES ARE COMING FROM 3256 01:46:34,623 --> 01:46:36,092 EITHER U.S. BASED COMPANIES OR, 3257 01:46:36,092 --> 01:46:38,961 YOU KNOW, ELSEWHERE OUTSIDE OF 3258 01:46:38,961 --> 01:46:39,195 EUROPE. 3259 01:46:39,195 --> 01:46:41,831 SO EUROPE KIND OF HAS THIS VERY 3260 01:46:41,831 --> 01:46:42,798 INTERESTING, VERY 3261 01:46:42,798 --> 01:46:43,666 PHILOSOPHICALLY INFORMED 3262 01:46:43,666 --> 01:46:45,000 POLITICAL PERSPECTIVE ON HOW 3263 01:46:45,000 --> 01:46:47,603 THESE DATA COULD BE USED BY THE 3264 01:46:47,603 --> 01:46:48,037 STATE. 3265 01:46:48,037 --> 01:46:49,271 THEY'RE ALSO A LITTLE BIT 3266 01:46:49,271 --> 01:46:51,006 SEPARATED FROM ALL OF THE 3267 01:46:51,006 --> 01:46:54,110 PROCESSES THAT ARE PRODUCING 3268 01:46:54,110 --> 01:46:56,312 THESE TECHNOLOGIES, AND I THINK, 3269 01:46:56,312 --> 01:47:03,419 YOU KNOW, THE BARN DOOR IS BEING 3270 01:47:03,419 --> 01:47:06,355 OPEN AND WHAT NOT BEING 3271 01:47:06,355 --> 01:47:07,323 SOMETHING THAT'S VERY HARD TO 3272 01:47:07,323 --> 01:47:09,291 WRAP BACK IN. 3273 01:47:09,291 --> 01:47:12,161 BUT, YOU KNOW, THEY ARE MAKING 3274 01:47:12,161 --> 01:47:14,230 STRIDES, AND I THINK THAT 3275 01:47:14,230 --> 01:47:16,098 THERE'S SOME DATA PROTECTIONS, 3276 01:47:16,098 --> 01:47:18,701 BUT AGAIN, NOT LIKE THERE ARE 3277 01:47:18,701 --> 01:47:21,103 OVER DATA THAT YOU MIGHT THINK 3278 01:47:21,103 --> 01:47:22,872 OF AS LIKE THE INLTD MA SI OF 3279 01:47:22,872 --> 01:47:25,040 THE DATA -- INTIMACY OF THE DATA 3280 01:47:25,040 --> 01:47:28,477 THAT'S COLLECTED FROM THESE 3281 01:47:28,477 --> 01:47:30,212 DEVICES GOES WAY BEYOND WHAT'S 3282 01:47:30,212 --> 01:47:31,280 IN YOUR ELECTRONIC MEDICAL 3283 01:47:31,280 --> 01:47:33,616 RECORD BECAUSE IT'S QUITE 3284 01:47:33,616 --> 01:47:36,118 LITERALLY SENSING WHAT'S IN YOUR 3285 01:47:36,118 --> 01:47:37,753 BODY, IT MIGHT NOT BE VALID BUT 3286 01:47:37,753 --> 01:47:39,054 PEOPLE MIGHT TREAT IT AS SUCH. 3287 01:47:39,054 --> 01:47:40,256 SO I THINK THERE'S A NEED FOR 3288 01:47:40,256 --> 01:47:41,490 CONSUMER DEMAND AND CONSUMER 3289 01:47:41,490 --> 01:47:42,792 AWARENESS AROUND THESE THING AS 3290 01:47:42,792 --> 01:47:46,195 WELL TO SORT OF DRIVE THOSE LIKE 3291 01:47:46,195 --> 01:47:47,329 VERY INCREMENTAL LEGISLATIVE 3292 01:47:47,329 --> 01:47:50,900 CHANGES THAT REALLY REQUIRE A 3293 01:47:50,900 --> 01:47:53,669 CULTURAL CHANGE MORE THAN -- AND 3294 01:47:53,669 --> 01:47:57,706 LIKE NEW EXPECTATIONS, AS 3295 01:47:57,706 --> 01:47:59,775 OPPOSED TO JUST LIKE NEW 3296 01:47:59,775 --> 01:48:01,076 REGULATIONS COMING OUT OF THIN 3297 01:48:01,076 --> 01:48:01,243 AIR. 3298 01:48:01,243 --> 01:48:03,712 YEAH, OR BOTH. 3299 01:48:03,712 --> 01:48:05,681 CAROLINE, YOU GET THE LAST WORD. 3300 01:48:05,681 --> 01:48:07,116 YEAH, THANK YOU FOR THIS 3301 01:48:07,116 --> 01:48:07,316 TALK. 3302 01:48:07,316 --> 01:48:10,286 IT WAS SUPER-INTERESTING. 3303 01:48:10,286 --> 01:48:13,289 WHAT IT'S BRINGING UP FOR ME I 3304 01:48:13,289 --> 01:48:17,293 THINK IS THIS IDEA OF LIKE 3305 01:48:17,293 --> 01:48:17,960 HYPER-INDIVIDUALIZATION OF 3306 01:48:17,960 --> 01:48:19,261 HEALTH DATA AND 3307 01:48:19,261 --> 01:48:21,030 COMMERCIALIZATION OF HELIDATA 3308 01:48:21,030 --> 01:48:23,766 AND KIND OF THE EMERGENCE OF, 3309 01:48:23,766 --> 01:48:27,036 YOU KNOW, ALL OF US PING ACCESS 3310 01:48:27,036 --> 01:48:30,439 TO VERY MINUTE DETAILS OF OUR 3311 01:48:30,439 --> 01:48:32,074 HEALTH DATA WHEN IT MIGHT NOT BE 3312 01:48:32,074 --> 01:48:33,275 HELPFUL ON AN INDIVIDUAL LEVEL 3313 01:48:33,275 --> 01:48:34,543 BUT INSTEAD ON A POPULATION 3314 01:48:34,543 --> 01:48:36,178 LEVEL, AND I'M WONDERING YOUR 3315 01:48:36,178 --> 01:48:38,781 THOUGHTS ON, YOU KNOW, HOW DO WE 3316 01:48:38,781 --> 01:48:40,449 ENSURE, LIKE OBVIOUSLY WE WANT A 3317 01:48:40,449 --> 01:48:41,951 BIG THING IS THAT WE WANT PEOPLE 3318 01:48:41,951 --> 01:48:43,152 TO HAVE ACCESS TO THEIR 3319 01:48:43,152 --> 01:48:44,119 INDIVIDUAL DATA WHEN IT'S 3320 01:48:44,119 --> 01:48:46,455 CONTRIBUTE TO GO A STUDY, BUT 3321 01:48:46,455 --> 01:48:49,058 ALSO HOW DO WE ENSURE THAT LIKE 3322 01:48:49,058 --> 01:48:50,926 IT'S FRAMED IN SUCH A WAY SO 3323 01:48:50,926 --> 01:48:52,995 THAT PEOPLE UNDERSTAND THAT -- 3324 01:48:52,995 --> 01:48:55,297 OR LIKE THAT THE INDIVIDUAL DATA 3325 01:48:55,297 --> 01:48:57,600 ISN'T ACTUALLY HARMFUL TO THE 3326 01:48:57,600 --> 01:49:00,803 PERSON WHEN IT'S MAYBE NOT -- WE 3327 01:49:00,803 --> 01:49:03,606 DON'T HAVE THE INFORMATION ABOUT 3328 01:49:03,606 --> 01:49:04,940 WHETHER OR NOT THIS PARTICULAR 3329 01:49:04,940 --> 01:49:09,011 DATA POINT IS GOING TO BE USEFUL 3330 01:49:09,011 --> 01:49:11,614 ON LIKE AN INDIVIDUAL LEVEL, IF 3331 01:49:11,614 --> 01:49:13,582 THAT MAKES SENSE. 3332 01:49:13,582 --> 01:49:16,652 DOES THAT MAKE SENSE? 3333 01:49:16,652 --> 01:49:16,852 SORRY. 3334 01:49:16,852 --> 01:49:18,621 I WOULD KIND OF GO ALMOST IN 3335 01:49:18,621 --> 01:49:19,288 REVERSE ORDER. 3336 01:49:19,288 --> 01:49:21,690 SO ONE THING THAT THERE'S A LOT 3337 01:49:21,690 --> 01:49:23,325 OF PATERNALISM IN TERM OF HOW 3338 01:49:23,325 --> 01:49:24,627 THE RESEARCH COMMUNITY VIEWS THE 3339 01:49:24,627 --> 01:49:26,195 IDEA OF GIVING PEOPLE ACCESS TO 3340 01:49:26,195 --> 01:49:27,796 THE DATA THAT WE'VE COLLECTED 3341 01:49:27,796 --> 01:49:29,431 FROM THEM IN THE COURSE OF 3342 01:49:29,431 --> 01:49:30,533 RESEARCH STUDY. 3343 01:49:30,533 --> 01:49:31,433 LARGELY I THINK THAT'S ABOUT 3344 01:49:31,433 --> 01:49:32,535 POWER AND CONTROL OVER THE DATA 3345 01:49:32,535 --> 01:49:34,069 AND JUST SIMPLY NOT WANTING TO 3346 01:49:34,069 --> 01:49:37,673 SHARE IT, AND IS KIND OF ROOTED 3347 01:49:37,673 --> 01:49:39,074 IN TRADITIONAL SORT OFLIKE THE 3348 01:49:39,074 --> 01:49:40,276 SAME REASONS WHY DOCTORS DIDN'T 3349 01:49:40,276 --> 01:49:41,377 WANT PATIENTS TO BE ABLE TO READ 3350 01:49:41,377 --> 01:49:42,912 THEIR NOTES, LIKE OH, IT COULD 3351 01:49:42,912 --> 01:49:45,848 HURT THEM. 3352 01:49:45,848 --> 01:49:47,716 LIKE MM, BUT OKAY, PEOPLE HAVE A 3353 01:49:47,716 --> 01:49:49,118 NEW NORM NOW, RIGHT? 3354 01:49:49,118 --> 01:49:50,452 PEOPLE WANT TO KNOW THE LAB 3355 01:49:50,452 --> 01:49:53,722 RESULTS, THEY WANT TO KNOW THEIR 3356 01:49:53,722 --> 01:49:55,758 DATA, AND THAT HAS THE POTENTIAL 3357 01:49:55,758 --> 01:49:58,260 TO BE HARMFUL BUT SORT OF PEOPLE 3358 01:49:58,260 --> 01:50:01,063 GENERALLY KNOW THAT AND YOU CAN 3359 01:50:01,063 --> 01:50:03,065 SAY THIS ALSO MIGHT NOT BE 3360 01:50:03,065 --> 01:50:04,233 USEFUL, IT MIGHT STRESS YOU OUT 3361 01:50:04,233 --> 01:50:06,201 TO FIND THAT OUT, BUT I THINK 3362 01:50:06,201 --> 01:50:07,369 CONCERNS ABOUT THE POTENTIAL 3363 01:50:07,369 --> 01:50:09,271 HARM OF THAT INFORMATION IS 3364 01:50:09,271 --> 01:50:10,806 NEVER GOING TO BE REALLY A 3365 01:50:10,806 --> 01:50:12,107 LEGITIMATE REASON TO WITHHOLD 3366 01:50:12,107 --> 01:50:12,341 IT. 3367 01:50:12,341 --> 01:50:13,108 THAT'S ONE. 3368 01:50:13,108 --> 01:50:15,177 THEN THE SECOND POINT I THINK 3369 01:50:15,177 --> 01:50:16,412 WHAT'S CRITICAL IS THAT IF YOU 3370 01:50:16,412 --> 01:50:17,913 TRULY PROPERLY CONSIDER 3371 01:50:17,913 --> 01:50:19,515 INCLUDING PARTICIPANTS AS 3372 01:50:19,515 --> 01:50:21,283 MEMBERS OF THE RESEARCH TEAM AND 3373 01:50:21,283 --> 01:50:22,751 THAT IT'S NOT JUST ABOUT GIVING 3374 01:50:22,751 --> 01:50:24,153 THEM THEIR OWN DATA, BUT IT'S 3375 01:50:24,153 --> 01:50:25,921 ACTUALLY SAYING LIKE HERE IS THE 3376 01:50:25,921 --> 01:50:29,959 DATASET WE'VE COLLECTED, YOU'RE 3377 01:50:29,959 --> 01:50:32,494 LINE 18 AND, YOU KNOW, HERE IS 3378 01:50:32,494 --> 01:50:33,796 THE DRAFT OUR -- LIKE WE'RE 3379 01:50:33,796 --> 01:50:35,431 DOING RIGHT NOW FOR ONE OF OUR 3380 01:50:35,431 --> 01:50:37,166 PROJECTS, I'M SENDING TO LIKE 3381 01:50:37,166 --> 01:50:38,601 1,000 RESEARCH PARTICIPANTS THE 3382 01:50:38,601 --> 01:50:39,768 DRAFT THE MANUSCRIPT THAT I'M 3383 01:50:39,768 --> 01:50:40,803 WRITING ABOUT THE STUDY THAT 3384 01:50:40,803 --> 01:50:43,305 THEY PARTICIPATED IN, AND FOR 3385 01:50:43,305 --> 01:50:45,507 THEIR COMMENTS, FEEDBACK, 3386 01:50:45,507 --> 01:50:48,077 THOUGHTS, LIKE IT'S KIND OF 3387 01:50:48,077 --> 01:50:49,778 NERVE WRACKING, AND I'M SENDING 3388 01:50:49,778 --> 01:50:51,714 THEM THE DATASETS DEIDENTIFIED, 3389 01:50:51,714 --> 01:50:53,048 OF COURSE, WITH THE ABILITY TO 3390 01:50:53,048 --> 01:50:55,250 PERSONAL AM IDENTIFY THEMSELVES 3391 01:50:55,250 --> 01:50:57,019 WITHIN THE DATA THAT ACTUALLY 3392 01:50:57,019 --> 01:51:02,157 SAYS, WELL, TREAT THEM LIKE TRUE 3393 01:51:02,157 --> 01:51:03,525 COLLABORATORS, AND THEY CAN, YOU 3394 01:51:03,525 --> 01:51:05,327 KNOW, SOME OF THEM ARE VERY 3395 01:51:05,327 --> 01:51:06,428 SOPHISTICATED, SOME OF THEM HAVE 3396 01:51:06,428 --> 01:51:08,063 AI TOOLS THAT ARE VERY 3397 01:51:08,063 --> 01:51:08,931 SOPHISTICATED THIS THEY MIGHT 3398 01:51:08,931 --> 01:51:10,032 WANT TO LOOK AT THAT DATA 3399 01:51:10,032 --> 01:51:11,367 THEMSELVES OR AT LEAST HAVE THE 3400 01:51:11,367 --> 01:51:14,737 ABILITY TO OR THE ABILITY TO 3401 01:51:14,737 --> 01:51:17,006 OBTAIN ANOTHER OPINION. 3402 01:51:17,006 --> 01:51:18,507 I THINK IT'S PARTIALLY ABOUT 3403 01:51:18,507 --> 01:51:22,978 REALLY JUST BASIC INCLUSION, AND 3404 01:51:22,978 --> 01:51:24,580 AGAIN, THE STRUCTURES THAT MIGHT 3405 01:51:24,580 --> 01:51:25,714 PREVENT THAT FROM HAPPENING I 3406 01:51:25,714 --> 01:51:27,750 THINK HAVE A LOT MORE TO DO WITH 3407 01:51:27,750 --> 01:51:29,518 THE PROPRIETARY NATURE OF THAT 3408 01:51:29,518 --> 01:51:30,753 DATA AND NOT ABOUT LIKE WHAT WE 3409 01:51:30,753 --> 01:51:32,154 THINK IS ACTUALLY GOOD FOR 3410 01:51:32,154 --> 01:51:35,324 PEOPLE, WHAT WE THINK IS 3411 01:51:35,324 --> 01:51:36,425 ACTUALLY JUST. 3412 01:51:36,425 --> 01:51:40,129 >> YEAH, THANK YOU. 3413 01:51:40,129 --> 01:51:41,130 >> I THINK WE'RE GOING TO HAVE 3414 01:51:41,130 --> 01:51:43,198 TO CUT OFF. 3415 01:51:43,198 --> 01:51:44,166 >> WE CAN TALK MORE. 3416 01:51:44,166 --> 01:51:45,668 >> BUT THIS IS A GREAT DOFERTION 3417 01:51:45,668 --> 01:51:47,269 PICK UP WHEN WE ALL MEET THE 3418 01:51:47,269 --> 01:51:48,170 FELLOWS AND YOU. 3419 01:51:48,170 --> 01:51:49,538 KEEP ALL THAT IN MIND. 3420 01:51:49,538 --> 01:51:50,372 >> THANK YOU SO MUCH. 3421 01:51:50,372 --> 01:51:52,741 THANK YOU. 3422 01:51:52,741 --> 01:51:59,214 [APPLAUSE] 3423 01:51:59,214 --> 01:52:02,818 >> THANKS, EVERYBODY, IT'S 3424 01:52:02,818 --> 01:52:03,018 10:23. 3425 01:52:03,018 --> 01:52:04,653 WE ARE GOING TO COME BACK 3426 01:52:04,653 --> 01:52:07,623 TOGETHER AT 10:35 FOR OUR THIRD 3427 01:52:07,623 --> 01:52:10,893 LECTURE TODAY, WHICH IS BE ON 3428 01:52:10,893 --> 01:52:11,427 GENERATIVE ARTIFICIAL 3429 01:52:11,427 --> 01:52:12,961 INTELLIGENCE AND LARGE LANGUAGE 3430 01:52:12,961 --> 01:52:13,195 MODELS. 3431 01:52:13,195 --> 01:52:14,695 THANK YOU. 3432 01:52:16,690 --> 01:52:19,260 WELCOME BACK EVERYONE, THIS IS A 3433 01:52:19,260 --> 01:52:20,461 BITTERSWEET LAST LECTURE IN OUR 3434 01:52:20,461 --> 01:52:23,864 CLASS THIS YEAR. 3435 01:52:23,864 --> 01:52:27,401 IT'S MY PLEASURE TO INTRODUCE 3436 01:52:27,401 --> 01:52:29,336 VASILIKI RAHIMZADEH, WE GET TO 3437 01:52:29,336 --> 01:52:31,805 CALL HER VASO, SHE IS AN 3438 01:52:31,805 --> 01:52:32,573 ASSISTANT PROFESSOR AT THE 3439 01:52:32,573 --> 01:52:34,174 CENTER FOR MEDICAL ETHICS AND 3440 01:52:34,174 --> 01:52:37,111 HEALTH POLICY AT BAYLOR MEDICAL 3441 01:52:37,111 --> 01:52:38,646 COLLEGE, AND SHE INVESTIGATES 3442 01:52:38,646 --> 01:52:40,948 THE ETHICAL, LEGAL AND SOCIAL 3443 01:52:40,948 --> 01:52:44,118 ISSUES OF HEALTH DATA SHARING 3444 01:52:44,118 --> 01:52:45,853 ACROSS EMERGING COMPUTING 3445 01:52:45,853 --> 01:52:46,186 ENVIRONMENTS. 3446 01:52:46,186 --> 01:52:48,055 THE GOALS OF HER RESEARCH ARE TO 3447 01:52:48,055 --> 01:52:49,790 INFORM DATA GOVERNANCE POLICY 3448 01:52:49,790 --> 01:52:51,892 AND PRACTICE, WHICH MAXIMIZES 3449 01:52:51,892 --> 01:52:53,661 THE SCIENTIFIC VALUE OF HEALTH 3450 01:52:53,661 --> 01:52:55,496 DATA AND RESPECTS THE RIGHTS AND 3451 01:52:55,496 --> 01:52:57,464 INTERESTS OF INDIVIDUALS AND 3452 01:52:57,464 --> 01:52:57,765 COMMUNITIES. 3453 01:52:57,765 --> 01:53:02,069 AND QUICK SIDE NOTE, VASO IS THE 3454 01:53:02,069 --> 01:53:03,837 CO-CHAIR OR CHAIRS THE ASTRO 3455 01:53:03,837 --> 01:53:05,573 ETHICS AFFINITY GROUP, WHICH 3456 01:53:05,573 --> 01:53:06,674 WE'RE GOING TO HAVE HER COME 3457 01:53:06,674 --> 01:53:08,642 BACK AND TALK ABOUT ASTRO ETHIC 3458 01:53:08,642 --> 01:53:09,643 AT A LATER TIME. 3459 01:53:09,643 --> 01:53:11,278 SO WITH THAT, I'M GOING TO HAND 3460 01:53:11,278 --> 01:53:17,785 IT OVER TO VASO. 3461 01:53:17,785 --> 01:53:19,453 >> GOOD MORNING, EVERYONE. 3462 01:53:19,453 --> 01:53:20,588 YOU CAN HEAR ME OKAY? 3463 01:53:20,588 --> 01:53:21,922 THANKS SO MUCH FOR THAT 3464 01:53:21,922 --> 01:53:23,991 SUPER-KIND INTRODUCTION AND FOR 3465 01:53:23,991 --> 01:53:25,092 HAVING ME WITH YOU TODAY. 3466 01:53:25,092 --> 01:53:30,064 I WISH I COULD BE THERE IN 3467 01:53:30,064 --> 01:53:31,799 PERSON, YET COVID STRIKES AGAIN, 3468 01:53:31,799 --> 01:53:34,301 WE ARE CONTINUING TO LIVE WITH 3469 01:53:34,301 --> 01:53:34,568 IT. 3470 01:53:34,568 --> 01:53:36,937 BUT THANKS TO TECHNOLOGY, I'M 3471 01:53:36,937 --> 01:53:38,906 ABLE TO STILL BE ABLE TO SHARE 3472 01:53:38,906 --> 01:53:40,574 HAD SOME THOUGHTS AND SOME 3473 01:53:40,574 --> 01:53:43,110 DISCUSSIONS WITH YOU TODAY ABOUT 3474 01:53:43,110 --> 01:53:46,146 THE ETHICAL CONSIDERATIONS OF 3475 01:53:46,146 --> 01:53:49,316 USING GENERATIVE AI FOR RESEARCH 3476 01:53:49,316 --> 01:53:53,587 WITH HUMAN SUBJECTS. 3477 01:53:53,587 --> 01:53:56,890 SO, YOU KNOW, I'LL START OFF BY 3478 01:53:56,890 --> 01:53:59,259 SAYING WE'RE REALLY IN QUITE AN 3479 01:53:59,259 --> 01:54:01,028 UNPRECEDENTED ERA AS FAR AS 3480 01:54:01,028 --> 01:54:02,663 ADVANCEMENTS IN AI ARE 3481 01:54:02,663 --> 01:54:03,097 CONCERNED. 3482 01:54:03,097 --> 01:54:06,500 SO THE INTEGRATION OF GENERATIVE 3483 01:54:06,500 --> 01:54:07,835 AI IN SPECIFIC AND WE'LL TALK 3484 01:54:07,835 --> 01:54:12,106 ABOUT LLM'S OR LARGE LANGUAGE 3485 01:54:12,106 --> 01:54:15,242 MODELS IN PARTICULAR HAS THIS 3486 01:54:15,242 --> 01:54:16,577 REALLY UNIQUE ABILITY TO 3487 01:54:16,577 --> 01:54:18,412 TRANSFORM QUITE LITERALLY HOW WE 3488 01:54:18,412 --> 01:54:20,848 DO CLINICAL AND SOCIAL SCIENCE, 3489 01:54:20,848 --> 01:54:22,716 ENHANCING BOTH THE PRECISION AND 3490 01:54:22,716 --> 01:54:23,917 EFFICIENCY OF SOME OF THOSE 3491 01:54:23,917 --> 01:54:25,853 CLINICAL STUDIES, WHILE ALSO 3492 01:54:25,853 --> 01:54:27,454 POTENTIALLY ENABLING BROADER 3493 01:54:27,454 --> 01:54:29,423 REACH AND REPRESENTATION OF 3494 01:54:29,423 --> 01:54:31,825 PARTICIPANT POPULATIONS THAT WE 3495 01:54:31,825 --> 01:54:34,194 KNOW HAVE BEEN UNDERREPRESENTED 3496 01:54:34,194 --> 01:54:35,996 IN RESEARCH TO DATE. 3497 01:54:35,996 --> 01:54:41,902 BUT AS WITH ANY TECHNOLOGICAL 3498 01:54:41,902 --> 01:54:43,003 ADVANCES, GENERATIVE AI IN 3499 01:54:43,003 --> 01:54:45,272 SPECIFIC HAS RAISED SOME 3500 01:54:45,272 --> 01:54:47,274 ADDITIONAL RESEARCH ETHICS, 3501 01:54:47,274 --> 01:54:49,677 TENSIONS, ALBEIT MANIFESTING IN 3502 01:54:49,677 --> 01:54:51,945 NOVEL WAYS AND HAVE ALSO RAISED 3503 01:54:51,945 --> 01:54:53,714 ENTIRELY NEW ETHICAL ISSUES 3504 01:54:53,714 --> 01:54:55,449 WHERE OUR EXISTING FRAMEWORKS 3505 01:54:55,449 --> 01:54:57,785 MAY BE INSUFFICIENT TO REALLY 3506 01:54:57,785 --> 01:55:01,255 HELP US FIND ALL THE ANSWERS. 3507 01:55:01,255 --> 01:55:02,923 SO I HOPE TO EXPLORE AND DISSECT 3508 01:55:02,923 --> 01:55:04,425 SOME OF THOSE ISSUES WITH YOU 3509 01:55:04,425 --> 01:55:07,161 TODAY IN PRAGMATIC WAYS THAT 3510 01:55:07,161 --> 01:55:09,029 REALLY TAKE INTO ACCOUNT SOME OF 3511 01:55:09,029 --> 01:55:10,864 THOSE REALISTIC AREAS THAT AI 3512 01:55:10,864 --> 01:55:13,600 CAN HELP IN MAKING HUMAN 3513 01:55:13,600 --> 01:55:15,936 SUBJECTS RESEARCH MORE RIGOROUS 3514 01:55:15,936 --> 01:55:18,672 AND TRUSTWORTHY BUT ALSO 3515 01:55:18,672 --> 01:55:19,873 ACKNOWLEDGING THEIR VERY REAL 3516 01:55:19,873 --> 01:55:20,174 LIMITATION. 3517 01:55:20,174 --> 01:55:21,842 SO I AM GOING TO ARGUE TODAY 3518 01:55:21,842 --> 01:55:24,011 REALLY AT THE VERY CORE OF THE 3519 01:55:24,011 --> 01:55:26,113 INTERSECTION OF MACHINE AND 3520 01:55:26,113 --> 01:55:27,748 INTELLIGENCE AND HUMAN HEALTH 3521 01:55:27,748 --> 01:55:29,283 RAISES QUESTIONS ABOUT CONSENT 3522 01:55:29,283 --> 01:55:32,352 AND TRANSPARENCY AND PRIVACY AND 3523 01:55:32,352 --> 01:55:34,121 EQUITY, AS WELL AS THE OVERALL 3524 01:55:34,121 --> 01:55:37,791 INTEGRITY OF THE SCIENTIFIC 3525 01:55:37,791 --> 01:55:38,058 ENDEAVOR. 3526 01:55:38,058 --> 01:55:40,094 AND I'M GOING TO START OFF WITH 3527 01:55:40,094 --> 01:55:42,496 A VERY SIMPLE TEMPERATURE CHECK 3528 01:55:42,496 --> 01:55:46,233 OF YOU ALL IN THE ROOM AND 3529 01:55:46,233 --> 01:55:48,736 ONLINE, AND I'M GOING TO SWITCH 3530 01:55:48,736 --> 01:55:58,746 SCREENS FOR THIS. 3531 01:55:58,746 --> 01:56:00,347 I'M GOING TO ASK YOU VERY 3532 01:56:00,347 --> 01:56:01,415 SIMPLY, YOU KNOW, WHAT WORDS 3533 01:56:01,415 --> 01:56:03,984 COME TO MIND WHEN YOU THINK OF 3534 01:56:03,984 --> 01:56:05,219 ARTIFICIAL INTELLIGENCE? 3535 01:56:05,219 --> 01:56:07,321 THEY CAN BE IN THE HEALTH SPACE, 3536 01:56:07,321 --> 01:56:11,992 THEY CAN BE IN THE RESEARCH 3537 01:56:11,992 --> 01:56:13,327 SPACE, AND THE WAY THAT YOU 3538 01:56:13,327 --> 01:56:15,496 ANSWER THIS POLL IS BY GOING ON 3539 01:56:15,496 --> 01:56:18,766 YOUR SMART DEVICE OR ON YOUR 3540 01:56:18,766 --> 01:56:25,239 LAPTOP TO 3541 01:56:25,239 --> 01:56:25,873 POLLEV.COM/NIHBIOETHICS, YOU CAN 3542 01:56:25,873 --> 01:56:27,541 SUBMIT YOUR ANSWERS VIA E IT OR 3543 01:56:27,541 --> 01:56:36,617 YOU CAN SIMPLY SCAN THE QR CODE. 3544 01:56:36,617 --> 01:56:38,252 I'LL GIVE PEOPLE A FEW MINIMUM 3545 01:56:38,252 --> 01:56:40,754 TTS TO DO THAT, OR 30 SECONDS, 3546 01:56:40,754 --> 01:56:43,290 WE'LL SAY -- A FEW MINUTES TO DO 3547 01:56:43,290 --> 01:56:44,925 THAT OR 30 SECONDS, WE'LL SAY, 3548 01:56:44,925 --> 01:56:55,135 TO DO THAT. 3549 01:57:04,244 --> 01:57:14,321 [PAUSE] 3550 01:57:16,223 --> 01:57:17,958 ALL RIGHT. 3551 01:57:17,958 --> 01:57:21,195 WE'LL SEE HOW WE'RE GOING. 3552 01:57:21,195 --> 01:57:22,062 NICE. 3553 01:57:22,062 --> 01:57:25,465 SO CHATGPT REALLY REIGNING 3554 01:57:25,465 --> 01:57:27,434 SUPREME HERE. 3555 01:57:27,434 --> 01:57:29,303 ROBOTS, WE'VE GOT REPLACEMENT, I 3556 01:57:29,303 --> 01:57:34,575 THINK THAT'S REALLY INTERESTING. 3557 01:57:34,575 --> 01:57:38,445 COMPUTERIZED, WE'LL KEEP GOING. 3558 01:57:38,445 --> 01:57:46,286 I LOVE IT. 3559 01:57:46,286 --> 01:57:54,394 FIVE MORE SECONDS. 3560 01:57:54,394 --> 01:57:54,962 OKAY. 3561 01:57:54,962 --> 01:57:56,396 SUPER. 3562 01:57:56,396 --> 01:57:58,465 ROBOTS, CHATGPT, MACHINES REALLY 3563 01:57:58,465 --> 01:58:01,802 KIND OF COMING TO THE FORE HERE 3564 01:58:01,802 --> 01:58:04,605 WITH SOME GREAT ONES I HAVEN'T 3565 01:58:04,605 --> 01:58:08,175 HEARD WHEN I HAVE DONE THIS 3566 01:58:08,175 --> 01:58:10,177 ACTIVITY BEFORE, SO THINGS LIKE 3567 01:58:10,177 --> 01:58:15,883 I THINK I SEE CYBORGS AND 3568 01:58:15,883 --> 01:58:16,850 INVASIVENESS, REALLY 3569 01:58:16,850 --> 01:58:20,354 INTERESTING, UNPREDICTABLE, 3570 01:58:20,354 --> 01:58:23,357 UNBELIEVABLE, I SEE 3571 01:58:23,357 --> 01:58:25,092 DISCRIMINATORY, ALEXA KIND OF 3572 01:58:25,092 --> 01:58:27,294 PEEPING IN THERE, THAT'S REALLY 3573 01:58:27,294 --> 01:58:27,527 AWESOME. 3574 01:58:27,527 --> 01:58:29,563 SO YEAH, YOU KNOW, I THINK IT'S 3575 01:58:29,563 --> 01:58:32,199 REALLY INTERESTING TO HIGHLIGHT, 3576 01:58:32,199 --> 01:58:34,501 YOU KNOW, HOW MANY ASSOCIATIONS 3577 01:58:34,501 --> 01:58:35,802 ARTIFICIAL INTELLIGENCE HAS IN 3578 01:58:35,802 --> 01:58:38,238 THE PUBLIC CONSCIOUSNESS TO 3579 01:58:38,238 --> 01:58:39,907 DATE, YOU KNOW, THE WAY WE'RE 3580 01:58:39,907 --> 01:58:41,008 EXPOSED TO THESE TECHNOLOGIES 3581 01:58:41,008 --> 01:58:43,610 ARE REALLY A FEATURE OF THE 3582 01:58:43,610 --> 01:58:45,913 MEDIA WE CONSUME, THE 3583 01:58:45,913 --> 01:58:48,548 TECHNOLOGIES AND THE AREAS OF 3584 01:58:48,548 --> 01:58:51,084 RESEARCH WE HAVE MOST PROXIMITY 3585 01:58:51,084 --> 01:58:55,455 TO, AND I THINK THIS WORD CLOUD 3586 01:58:55,455 --> 01:58:57,291 EXERCISE REALLY HELPS KIND OF 3587 01:58:57,291 --> 01:58:59,159 UNVEIL SOME OF THOSE EXPOSURES 3588 01:58:59,159 --> 01:59:00,928 WITHIN THE BROADER PUBLIC. 3589 01:59:00,928 --> 01:59:02,462 SO THANKS FOR THAT. 3590 01:59:02,462 --> 01:59:05,399 WE'RE GOING TO DO ONE MORE, AND 3591 01:59:05,399 --> 01:59:08,468 THIS NEXT QUESTION I HAVEN'T 3592 01:59:08,468 --> 01:59:10,337 POSED BEFORE, BUT I THINK IS 3593 01:59:10,337 --> 01:59:12,706 REALLY ONE THAT'S TOP OF MIND 3594 01:59:12,706 --> 01:59:14,708 FOR US AS EARLY CAREER 3595 01:59:14,708 --> 01:59:17,544 RESEARCHERS AND THOSE WHO WILL 3596 01:59:17,544 --> 01:59:19,846 REALLY ENTER INTO THE RESEARCH 3597 01:59:19,846 --> 01:59:22,683 ENDEAVOR WITH SOME OF THESE 3598 01:59:22,683 --> 01:59:23,784 TECHNOLOGIES BEING VERY 3599 01:59:23,784 --> 01:59:25,419 INTEGRATED, AND THAT'S, WOULD 3600 01:59:25,419 --> 01:59:29,456 YOU EVER CONSIDER USING CHATGPT 3601 01:59:29,456 --> 01:59:31,525 TO DRAFT A SPECIFIC AIMS PAGE 3602 01:59:31,525 --> 01:59:35,896 FOR AN NIH GRANT YOU MIGHT BE 3603 01:59:35,896 --> 01:59:36,330 SUBMITTING? 3604 01:59:36,330 --> 01:59:38,098 AND THIS IS COMPLETELY 3605 01:59:38,098 --> 01:59:39,700 ANONYMOUS, SO NOBODY, NONE OF 3606 01:59:39,700 --> 01:59:41,702 THE PROGRAM OFFICERS ACROSS THE 3607 01:59:41,702 --> 01:59:46,473 WAY ON CAMPUS WILL KNOW WHAT YOU 3608 01:59:46,473 --> 01:59:50,711 WROTE HERE, BUT I AM 3609 01:59:50,711 --> 01:59:54,014 SUPER-CURIOUS TO HEAR WHETHER 3610 01:59:54,014 --> 02:00:00,354 YOU WOULD CONSIDER DOING THIS. 3611 02:00:00,354 --> 02:00:10,764 [PAUSE] HAD WE'LL GIVE. 3612 02:00:13,667 --> 02:00:16,536 WE'LL GIVE IT JUST A FEW MORE 3613 02:00:16,536 --> 02:00:16,770 SECONDS. 3614 02:00:16,770 --> 02:00:17,871 ALL RIGHT. 3615 02:00:17,871 --> 02:00:18,872 REALLY INTERESTING. 3616 02:00:18,872 --> 02:00:19,406 ALL RIGHT. 3617 02:00:19,406 --> 02:00:24,644 SO WE'VE GOT 71% WOULD CONSIDER 3618 02:00:24,644 --> 02:00:27,614 USING IT, AND AROUND 20%, ABOUT 3619 02:00:27,614 --> 02:00:29,916 20% SAYING NO, AND THAT A 3620 02:00:29,916 --> 02:00:31,585 HEALTHY 10% I'M NOT SURE. 3621 02:00:31,585 --> 02:00:35,288 SO THANKS ARE FOR ENGAGING IN 3622 02:00:35,288 --> 02:00:38,125 THAT EXERCISING I THINK WE'LL 3623 02:00:38,125 --> 02:00:39,226 TALK A LITTLE BIT ABOUT WHAT 3624 02:00:39,226 --> 02:00:40,994 MIGHT BE SOME OF THE ETHICAL 3625 02:00:40,994 --> 02:00:44,931 RATIONALES FOR WHY IT MIGHT BE 3626 02:00:44,931 --> 02:00:48,001 APPROPRIATE OR ACCEPTABLE TO USE 3627 02:00:48,001 --> 02:00:50,070 CHATGPT IN WRITING GRANT 3628 02:00:50,070 --> 02:00:51,705 PROPOSALS OR IN THE GRANT 3629 02:00:51,705 --> 02:00:53,573 WRITING PROCESS AND WHAT 3630 02:00:53,573 --> 02:00:56,209 CHALLENGES THAT MIGHT POSE. 3631 02:00:56,209 --> 02:00:58,812 SO THANKS FOR THAT. 3632 02:00:58,812 --> 02:01:05,218 I'M GOING TO GO BACK TO MY 3633 02:01:05,218 --> 02:01:06,820 PRESENTATION. 3634 02:01:06,820 --> 02:01:10,490 ALL RIGHT. 3635 02:01:10,490 --> 02:01:12,025 SO, YOU KNOW, TODAY I'M REALLY 3636 02:01:12,025 --> 02:01:15,629 GOING TO START BY RIGHT OUT THE 3637 02:01:15,629 --> 02:01:16,930 GIT-GO SHARING TWO UNDERLYING 3638 02:01:16,930 --> 02:01:19,766 POSITIONS I HOLD WITH RESPECT TO 3639 02:01:19,766 --> 02:01:21,401 GENERATIVE AI AND ENABLING 3640 02:01:21,401 --> 02:01:22,769 RESPONSIBLE CONDUCT OF RESEARCH. 3641 02:01:22,769 --> 02:01:24,771 THE FIRST IS THAT GENERATIVE AI 3642 02:01:24,771 --> 02:01:26,273 CAN ADVANCE ETHICAL HUMAN 3643 02:01:26,273 --> 02:01:28,442 SUBJECTS RESEARCH WHEN APPLIED 3644 02:01:28,442 --> 02:01:31,411 IN WAYS THAT COMPLEMENT HUMAN EN 3645 02:01:31,411 --> 02:01:34,581 DEFERS TO ENSURE -- ENDEAVORS TO 3646 02:01:34,581 --> 02:01:36,883 ENSURE RIGOR AND TRUSTWORTHINESS 3647 02:01:36,883 --> 02:01:38,552 WITHIN THE RESEARCH ECOSYSTEM 3648 02:01:38,552 --> 02:01:39,953 AND ACROSS RESEARCH PROCESSES, 3649 02:01:39,953 --> 02:01:42,389 AND I REALLY BELIEVE IT'S OUR 3650 02:01:42,389 --> 02:01:44,991 JOB AS BIOETHICIST, AS PEOPLE, 3651 02:01:44,991 --> 02:01:48,395 AS RESEARCHERS WHO INVOLVE 3652 02:01:48,395 --> 02:01:50,263 HUMANS IN THE RESEARCH WE DO TO 3653 02:01:50,263 --> 02:01:52,332 IDENTIFY, YOU KNOW, REALLY WHEN 3654 02:01:52,332 --> 02:01:54,401 AND WHERE RIGOR AND 3655 02:01:54,401 --> 02:01:56,169 TRUSTWORTHINESS ARE MOST 3656 02:01:56,169 --> 02:01:58,572 THREATENED BY GENERATIVE AI AND 3657 02:01:58,572 --> 02:02:01,241 LLM'S IN PARTICULAR, AND HOW TO 3658 02:02:01,241 --> 02:02:05,378 MITIGATE THOSE THREATS. 3659 02:02:05,378 --> 02:02:07,581 AND THE SECOND IS THAT, YOU 3660 02:02:07,581 --> 02:02:09,916 KNOW, REGARDLESS ABOUT OUR OWN 3661 02:02:09,916 --> 02:02:11,651 BELIEFS OF THE TECHNOLOGY, WE DO 3662 02:02:11,651 --> 02:02:14,421 HAVE THIS RESPONSIBILITY TO 3663 02:02:14,421 --> 02:02:17,157 UNDERSTAND ITS IMPACT ON 3664 02:02:17,157 --> 02:02:17,524 RESEARCH. 3665 02:02:17,524 --> 02:02:19,392 SO MY SECOND POSITION, MY SECOND 3666 02:02:19,392 --> 02:02:21,461 POINT IS THAT THE RESEARCH 3667 02:02:21,461 --> 02:02:22,996 ETHICS COMMUNITY HAS AN 3668 02:02:22,996 --> 02:02:24,097 ESPECIALLY IMPORTANT ROLE TO 3669 02:02:24,097 --> 02:02:28,802 PLAY IN HOW GENERATIVE AI IS NOT 3670 02:02:28,802 --> 02:02:30,770 ONLY DEVELOPED AND INNOVATED BUT 3671 02:02:30,770 --> 02:02:32,973 ALSO THAT WE NEED ETHICISTS TO 3672 02:02:32,973 --> 02:02:34,941 BE PRESENT ON THE GROUND FLOOR 3673 02:02:34,941 --> 02:02:37,878 OF THIS DEVELOPMENT TO ALSO 3674 02:02:37,878 --> 02:02:40,413 RESPONSIBLY SHAPE ITS 3675 02:02:40,413 --> 02:02:40,780 IMPLEMENTATION. 3676 02:02:40,780 --> 02:02:43,717 SO IN THE COURSE OF THE NECK -- 3677 02:02:43,717 --> 02:02:45,452 IN THE COURSE OF NEXT 30 MINIMUM 3678 02:02:45,452 --> 02:02:47,521 TTS OR 60 MINUTES WE HAVE 3679 02:02:47,521 --> 02:02:49,256 TOGETHER, I HOPE WHAT WE DISCUSS 3680 02:02:49,256 --> 02:02:51,358 WILL INSPIRE SOME PERSONAL 3681 02:02:51,358 --> 02:02:52,759 REFLECTION ON SEVERAL KEY 3682 02:02:52,759 --> 02:02:54,728 QUESTIONS THAT I'VE BEEN ASKING 3683 02:02:54,728 --> 02:02:56,363 MYSELF, WHICH PRIMARILY IS, YOU 3684 02:02:56,363 --> 02:02:58,665 KNOW, IS IT EVER ETHICAL TO USE 3685 02:02:58,665 --> 02:03:01,968 GENERATIVE AI IN LLM'S IN 3686 02:03:01,968 --> 02:03:04,271 PARTICULAR TO DESIGN AND/OR 3687 02:03:04,271 --> 02:03:06,439 CONDUCT AND/OR DISSEMINATE OR 3688 02:03:06,439 --> 02:03:08,408 PEER REVIEW RESEARCH? 3689 02:03:08,408 --> 02:03:11,945 AND IF SO, WHEN AND HOW? 3690 02:03:11,945 --> 02:03:13,246 SO I HOPE TO BE ABLE TO 3691 02:03:13,246 --> 02:03:15,649 DEMONSTRATE THAT IT CAN BE, WHEN 3692 02:03:15,649 --> 02:03:18,485 IT DOESN'T VIOLATE REALLY 3693 02:03:18,485 --> 02:03:20,020 CROSS-CUTTING ETHICAL PRINCIPLES 3694 02:03:20,020 --> 02:03:22,989 AND PRIORITIES THAT UNDERGIRD 3695 02:03:22,989 --> 02:03:28,562 RESEARCH RIGOR AND SOCIALLY JUST 3696 02:03:28,562 --> 02:03:30,764 SCIENCE. 3697 02:03:30,764 --> 02:03:32,499 I'VE MOSTLY BEEN THINKING ABOUT 3698 02:03:32,499 --> 02:03:34,701 LLM'S IN THE CONTEXT OF 3699 02:03:34,701 --> 02:03:35,936 BIOETHICS AND LEARNING, I 3700 02:03:35,936 --> 02:03:38,338 RECENTLY PUBLISHED A PAPER WITH 3701 02:03:38,338 --> 02:03:39,206 COLLEAGUES ON THE CENTER FOR 3702 02:03:39,206 --> 02:03:41,908 MEDICAL ETHICS AND HEALTH POLICY 3703 02:03:41,908 --> 02:03:43,543 AT BAYLOR THINKING ABOUT WHAT 3704 02:03:43,543 --> 02:03:45,779 SOME APPLICABLE USES OF CHATGPT 3705 02:03:45,779 --> 02:03:47,280 TO BIOETHICS TEACHING AND 3706 02:03:47,280 --> 02:03:48,181 LEARNING MIGHT BE, BUT PREPARING 3707 02:03:48,181 --> 02:03:49,916 FOR THIS TALK REALLY RAISED 3708 02:03:49,916 --> 02:03:50,884 ACTUALLY SOME NEW QUESTIONS 3709 02:03:50,884 --> 02:03:53,753 ABOUT HOW WE AS THE RESEARCH 3710 02:03:53,753 --> 02:03:55,155 COMMUNITY CONCEPTUALIZE THINGS 3711 02:03:55,155 --> 02:04:00,660 LIKE NOVELTY AND ATTRIBUTION IN 3712 02:04:00,660 --> 02:04:02,195 RESEARCH AND HOW THAT'S POSING 3713 02:04:02,195 --> 02:04:05,232 NEW CHALLENGES AND ISSUES WHEN 3714 02:04:05,232 --> 02:04:09,302 USING THINGS LIKE DHAT GPT TO -- 3715 02:04:09,302 --> 02:04:10,570 CHATGPT TO HELP US POSE NEW 3716 02:04:10,570 --> 02:04:12,239 RESEARCH QUESTIONS, MAYBE 3717 02:04:12,239 --> 02:04:13,273 EXPRESS IDEAS THROUGH RESEARCH 3718 02:04:13,273 --> 02:04:15,208 ARTICLES AND OTHER TEXTS AND HOW 3719 02:04:15,208 --> 02:04:16,876 IT HELPS SUPPORT US DOING THAT 3720 02:04:16,876 --> 02:04:18,178 AND WHETHER THIS QUESTION ABOUT 3721 02:04:18,178 --> 02:04:19,312 WHETHER HUMANS ARE REALLY THE 3722 02:04:19,312 --> 02:04:21,448 ONLY ONES THAT ARE CAPABLE OF 3723 02:04:21,448 --> 02:04:27,387 THIS NOVELTY. 3724 02:04:27,387 --> 02:04:29,656 I'VE ORK NILESED MY REFLECTIONS 3725 02:04:29,656 --> 02:04:33,827 ON LLM'S ON FOUR LIFETIMES, 3726 02:04:33,827 --> 02:04:34,728 STARTING WITH RESEARCH DESIGN 3727 02:04:34,728 --> 02:04:36,663 THROUGH TO A SCIENTIFIC AND 3728 02:04:36,663 --> 02:04:40,834 ETHICS PEER REVIEW AND ONTO THE 3729 02:04:40,834 --> 02:04:42,669 ACTUAL CONDUCT OF RESEARCH AND 3730 02:04:42,669 --> 02:04:44,237 FINALLY DISSEMINATION OF 3731 02:04:44,237 --> 02:04:45,005 RESEARCH PRODUCTS. 3732 02:04:45,005 --> 02:04:47,440 SO FOLLOWING EACH SECTION, I'LL 3733 02:04:47,440 --> 02:04:49,609 PROVIDE WHAT I'M CALLING AN 3734 02:04:49,609 --> 02:04:51,278 EMERGENT APPLICATION OR AN 3735 02:04:51,278 --> 02:04:53,246 EVOLVING USE CASE OF AN LLM THAT 3736 02:04:53,246 --> 02:04:54,781 REALLY PUTS SOME OF THOSE ISSUES 3737 02:04:54,781 --> 02:05:00,687 WE DISCUSS INTO RELIEF. 3738 02:05:00,687 --> 02:05:01,988 I PROPOSE AT LEAST WE SHOULD 3739 02:05:01,988 --> 02:05:04,024 CONSIDER FIVE ETHICAL PRIORITIES 3740 02:05:04,024 --> 02:05:06,159 THAT CAN HELP US GUIDE WHETHER, 3741 02:05:06,159 --> 02:05:08,762 HOW AND WHY WE USE LLM'S FOR 3742 02:05:08,762 --> 02:05:12,165 RESEARCH AT ANY STAGE IN THE 3743 02:05:12,165 --> 02:05:13,366 RESEARCH PROCESS. 3744 02:05:13,366 --> 02:05:15,135 SO I'VE ORGANIZED THEM IN TERMS 3745 02:05:15,135 --> 02:05:18,972 OF RIGOR AND CREDIBILITY, DATA 3746 02:05:18,972 --> 02:05:20,940 FELT, WHICH IS A COMBINATION OF 3747 02:05:20,940 --> 02:05:23,009 BOTH THE QUALITY AND THE 3748 02:05:23,009 --> 02:05:24,978 SUFFICIENCY OF THAT DATA TO 3749 02:05:24,978 --> 02:05:27,814 ANSWER SCIENTIFIC QUESTIONS, 3750 02:05:27,814 --> 02:05:28,815 NATURALLY QUESTIONS ABOUT 3751 02:05:28,815 --> 02:05:31,418 PRIVACY AND CONFIDENTIALITY COME 3752 02:05:31,418 --> 02:05:33,620 UP, AS WELL AS THINGS LIKE 3753 02:05:33,620 --> 02:05:35,822 JUSTICE AND TRANSPARENCY. 3754 02:05:35,822 --> 02:05:38,958 SO AS WE ADVANCE IN OUR 3755 02:05:38,958 --> 02:05:39,959 DISCUSSIONS, MY OVERALL GOALS 3756 02:05:39,959 --> 02:05:42,295 FOR TODAY REALLY ARE TO HELP YOU 3757 02:05:42,295 --> 02:05:45,231 GAIN PERHAPS A BETTER CONCEPTUAL 3758 02:05:45,231 --> 02:05:47,400 UNDERSTANDING OF THE TECHNICAL 3759 02:05:47,400 --> 02:05:49,069 CAPABILITIES AS WELL AS 3760 02:05:49,069 --> 02:05:50,804 LIMITATIONS OF LARGE LANGUAGE 3761 02:05:50,804 --> 02:05:52,472 MODELS AND HOW THEY'RE 3762 02:05:52,472 --> 02:05:54,240 DISTINGUISHED FROM OTHER 3763 02:05:54,240 --> 02:05:55,642 ARTIFICIAL INTELLIGENCE 3764 02:05:55,642 --> 02:05:57,510 TECHNOLOGIES, AND SECOND TO 3765 02:05:57,510 --> 02:05:58,812 REALLY CONSIDER AND WORK THROUGH 3766 02:05:58,812 --> 02:06:00,780 SOME OF THOSE ETHICAL, LEGAL AND 3767 02:06:00,780 --> 02:06:02,716 SOCIAL IMPLICATIONS OF LLM'S AT 3768 02:06:02,716 --> 02:06:06,786 EACH THOSE PHASES IN THE 3769 02:06:06,786 --> 02:06:08,388 RESEARCH PROCESS. 3770 02:06:08,388 --> 02:06:09,956 SO FOR SOME OF YOU THIS MAY BE 3771 02:06:09,956 --> 02:06:12,125 THE FIRST EXPOSURE TO THE 3772 02:06:12,125 --> 02:06:13,993 TECHNICAL SIDE OF AI, SO THE 3773 02:06:13,993 --> 02:06:15,995 NEXT FEW SLIDES ARE REALLY MEANT 3774 02:06:15,995 --> 02:06:17,397 TO COMPLEMENT SOME OF THE 3775 02:06:17,397 --> 02:06:18,732 SUGGESTED READINGS I HAD FOR 3776 02:06:18,732 --> 02:06:22,469 TODAY AND PROVIDE A BRIEF PRIMER 3777 02:06:22,469 --> 02:06:26,206 AND EXPAND YOUR AI VOCABULARY A 3778 02:06:26,206 --> 02:06:26,406 BIT. 3779 02:06:26,406 --> 02:06:30,310 SO AI DESCRIBES A TECHNIQUE 3780 02:06:30,310 --> 02:06:32,078 WHERE COMPUTERS ARE QUITE SIMPLY 3781 02:06:32,078 --> 02:06:34,614 PROGRAMMED TO MIMIC HUMAN 3782 02:06:34,614 --> 02:06:36,316 INTELLIGENCE AND ANALYTIC 3783 02:06:36,316 --> 02:06:36,583 BEHAVIORS. 3784 02:06:36,583 --> 02:06:38,218 AND ONE METHOD BY WHICH 3785 02:06:38,218 --> 02:06:40,920 COMPUTERS ARE ABLE TO ENABLE AI 3786 02:06:40,920 --> 02:06:42,689 IS THROUGH MACHINE LEARNING. 3787 02:06:42,689 --> 02:06:44,524 SO MACHINE LEARNING USES THESE 3788 02:06:44,524 --> 02:06:46,960 LARGE DATASETS THAT HUMANS 3789 02:06:46,960 --> 02:06:49,896 ESSENTIAL GIVE IT TO IDENTIFY 3790 02:06:49,896 --> 02:06:51,331 PATTERNS IN DATA THAT CAN BE 3791 02:06:51,331 --> 02:06:53,633 USEFUL FOR THINGS LIKE 3792 02:06:53,633 --> 02:06:55,602 PREDICTION, CALCULATING RELATIVE 3793 02:06:55,602 --> 02:06:58,204 RISK AND ISOLATING CAUSAL 3794 02:06:58,204 --> 02:06:58,538 INFERENCE. 3795 02:06:58,538 --> 02:07:01,074 AND THESE PATTERNS CAN BE USED 3796 02:07:01,074 --> 02:07:03,143 TO CREATE MODELS THAT THE 3797 02:07:03,143 --> 02:07:05,345 MACHINE EVOLVES OVER TIME IN 3798 02:07:05,345 --> 02:07:07,547 RESPONSE TO NEW DATA IT'S FED 3799 02:07:07,547 --> 02:07:09,749 AND NEW INPUTS THAT IT'S 3800 02:07:09,749 --> 02:07:10,083 PROVIDED. 3801 02:07:10,083 --> 02:07:12,051 AND THIS IS THE LEARNING PART OF 3802 02:07:12,051 --> 02:07:14,687 MACHINE LEARNING, WHICH CAN 3803 02:07:14,687 --> 02:07:17,957 OCCUR IN A SUPERVISED, THAT IS 3804 02:07:17,957 --> 02:07:20,260 WITH HUMAN INTERVENTION OR 3805 02:07:20,260 --> 02:07:23,530 WITHOUT IN AN UNSUPERVISED 3806 02:07:23,530 --> 02:07:23,763 FASHION. 3807 02:07:23,763 --> 02:07:26,399 SO UNDER THE UMBRELLA OF MACHINE 3808 02:07:26,399 --> 02:07:27,467 LEARNING ARE SYSTEMS CAPABLE OF 3809 02:07:27,467 --> 02:07:29,002 DIFFERENT TYPES OF ANALYTICS. 3810 02:07:29,002 --> 02:07:31,638 SO THERE'S THIS SUBSET OF AI 3811 02:07:31,638 --> 02:07:33,506 CALLED DEEP LEARNING WHICH 3812 02:07:33,506 --> 02:07:34,808 TEACHES COMPUTERS TO PROCESS 3813 02:07:34,808 --> 02:07:37,444 DATA IN A WAY THAT IS ACTUALLY 3814 02:07:37,444 --> 02:07:39,179 INSPIRED BY WHAT WE KNOW OF THE 3815 02:07:39,179 --> 02:07:41,514 HUMAN BRAIN ITSELF. 3816 02:07:41,514 --> 02:07:43,149 SO IN THIS SPACE BETWEEN DEEP 3817 02:07:43,149 --> 02:07:46,019 LEARNING AND MACHINE LEARNING, 3818 02:07:46,019 --> 02:07:48,221 WE HAVE GENERATIVE AI. 3819 02:07:48,221 --> 02:07:51,024 HAD GENERATIVE AI IS THIS 3820 02:07:51,024 --> 02:07:53,092 SUBCLASS OF DEEP LEARNING MODELS 3821 02:07:53,092 --> 02:07:56,629 THAT TAKE SOME RAW DATA, SAY 3822 02:07:56,629 --> 02:07:59,132 IT'S ALL OF THE DATA FROM NIH 3823 02:07:59,132 --> 02:08:00,667 REPORTER OR EVERY ARTICLE 3824 02:08:00,667 --> 02:08:02,869 WRITTEN IN THE WASHINGTON POST 3825 02:08:02,869 --> 02:08:06,906 AND LEARNS TO PREDICT THE MOST 3826 02:08:06,906 --> 02:08:07,774 STATISTICALLY PROBABLE NEXT 3827 02:08:07,774 --> 02:08:10,210 STRING OF TEXT IN RESPONSE TO A 3828 02:08:10,210 --> 02:08:11,611 USER'S PROMPT. 3829 02:08:11,611 --> 02:08:15,114 AND IT CAN BE TEXT, IT CAN BE 3D 3830 02:08:15,114 --> 02:08:19,953 IMAGES, IT CAN BE OTHER CONTENT 3831 02:08:19,953 --> 02:08:21,588 THAT'S BASED ON THIS RAW DATA 3832 02:08:21,588 --> 02:08:23,690 THAT MODELS ARE TRAINED ON. 3833 02:08:23,690 --> 02:08:25,859 SO COMMON TYPES OF DATA INCLUDE 3834 02:08:25,859 --> 02:08:27,827 CODE, THEY CAN INCLUDE TEXT, 3835 02:08:27,827 --> 02:08:29,562 WHICH IS WHAT I THINK PEOPLE ARE 3836 02:08:29,562 --> 02:08:32,765 FAMILIAR WITH WITH CHATGPT, 3837 02:08:32,765 --> 02:08:39,138 EMERGING TECHNOLOGIES LIKE AM 3838 02:08:39,138 --> 02:08:40,773 DOLL-E RESPONDS IT TEXT 3839 02:08:40,773 --> 02:08:43,276 RESPONSES IT GENERATES IMAGES 3840 02:08:43,276 --> 02:08:44,711 THAT ARE ASSOCIATED OR ARE 3841 02:08:44,711 --> 02:08:46,713 PREDICTED TO BE SOASHED WITH 3842 02:08:46,713 --> 02:08:47,914 THOSE -- ASSOCIATED WITH THOSE 3843 02:08:47,914 --> 02:08:48,581 TEXT INPUTS. 3844 02:08:48,581 --> 02:08:51,518 SO IN ESSENCE, THE RESPONSE YOU 3845 02:08:51,518 --> 02:08:54,387 GET FROM AN LLM AND BY PROMPTING 3846 02:08:54,387 --> 02:08:55,889 GENERATIVE AI STOOLS A SUMMARY 3847 02:08:55,889 --> 02:08:58,625 OF ALL THAT DATA IT'S TRAINED 3848 02:08:58,625 --> 02:09:01,361 ON, AND IT'S BEEN SYNTHESIZED 3849 02:09:01,361 --> 02:09:03,563 AND CREATED BY THE TOOL. 3850 02:09:03,563 --> 02:09:05,832 SO THAT SUMMARY IS SIMILAR TO 3851 02:09:05,832 --> 02:09:07,901 BUT NOT ESSENTIALLY IDENTICAL TO 3852 02:09:07,901 --> 02:09:10,003 THE RAW DATA THAT IT'S TRIEND, 3853 02:09:10,003 --> 02:09:11,304 AND THIS IS PROBABLY THE -- 3854 02:09:11,304 --> 02:09:12,839 TRAINED ON, AND THIS IS PROBABLY 3855 02:09:12,839 --> 02:09:14,173 THE MOST IMPORTANT FEATURE OF 3856 02:09:14,173 --> 02:09:15,708 GENERATIVE AI BECAUSE IT DOES 3857 02:09:15,708 --> 02:09:17,343 RAISE QUESTIONS ABOUT THE LIMITS 3858 02:09:17,343 --> 02:09:18,545 OF INTELLECTUAL PROPERTY, 3859 02:09:18,545 --> 02:09:19,946 PLAGIARISM, WHICH ACTUALLY WE 3860 02:09:19,946 --> 02:09:22,615 SAW AS PART OF THE WORD CLOUD, 3861 02:09:22,615 --> 02:09:24,350 AND AGAIN THE NOVELTY OF 3862 02:09:24,350 --> 02:09:27,720 RESEARCH IDEAS. 3863 02:09:27,720 --> 02:09:29,689 SO LLM'S ARE INTERNAL VERY GOOD 3864 02:09:29,689 --> 02:09:32,325 AT SUMMATION, VERY GOOD AT 3865 02:09:32,325 --> 02:09:34,193 CLASSIFICATION AND PREDICTION OF 3866 02:09:34,193 --> 02:09:36,696 VARIOUS TYPES OF INPUTS AND 3867 02:09:36,696 --> 02:09:38,031 RESEARCH CAN REALLY -- 3868 02:09:38,031 --> 02:09:39,666 RESEARCHERS CAN REALLY LEVERAGE 3869 02:09:39,666 --> 02:09:42,168 THOSE STRENGTHS AND PUT THEM TO 3870 02:09:42,168 --> 02:09:43,636 EFFECTIVE USE IN THEIR RESEARCH. 3871 02:09:43,636 --> 02:09:45,838 SO LLM'S HAVE RISEN IN 3872 02:09:45,838 --> 02:09:47,040 POPULARITY LARGELY THANKS ON 3873 02:09:47,040 --> 02:09:51,411 OPEN AI'S CHATGPT BUT THE LLM 3874 02:09:51,411 --> 02:09:52,612 MARKET ITSELF IS ACTUALLY 3875 02:09:52,612 --> 02:09:55,682 SATURATED AND EXPANDING QUITE 3876 02:09:55,682 --> 02:09:55,915 RAPIDLY. 3877 02:09:55,915 --> 02:09:59,986 SO WE ALSO HAVELY POM2, THIS IS 3878 02:09:59,986 --> 02:10:03,056 GOOLGS COMPETITIVE LLM TO 3879 02:10:03,056 --> 02:10:05,992 CHATGPT, NOT TO BE OUTDONE BY 3880 02:10:05,992 --> 02:10:07,660 CLOD HE A NEW PRODUCT RELEASED 3881 02:10:07,660 --> 02:10:11,664 BY A COMPANY CALLED ANTHROPIC. 3882 02:10:11,664 --> 02:10:13,299 I SHARE THESE JUST TO GIVE A 3883 02:10:13,299 --> 02:10:15,068 SENSE OF HOW MANY DIFFERENT 3884 02:10:15,068 --> 02:10:17,103 PRODUCTS ARE BEING RELEASED ON 3885 02:10:17,103 --> 02:10:19,639 THE MARKET BECAUSE THERE'S AN 3886 02:10:19,639 --> 02:10:21,708 EVOLVING DEMAND FOR THEM ACROSS 3887 02:10:21,708 --> 02:10:23,943 VARIOUS SECTORS. 3888 02:10:23,943 --> 02:10:27,246 SO GIVEN ITS UNIQUE STRENGTH AND 3889 02:10:27,246 --> 02:10:28,514 IS CAPABILITIES IT'S IMPORTANT 3890 02:10:28,514 --> 02:10:31,117 TO DISTINGUISH WHAT AN LLM IS 3891 02:10:31,117 --> 02:10:31,351 NOT. 3892 02:10:31,351 --> 02:10:33,086 GENERATIVE AI CAN COMMONLY BE 3893 02:10:33,086 --> 02:10:35,488 MISTAKEN AS AN INFORMATION 3894 02:10:35,488 --> 02:10:37,590 REPORTING TOOL OR A SEARCH 3895 02:10:37,590 --> 02:10:39,325 ENGINE, WHEN IN FACT IT'S 3896 02:10:39,325 --> 02:10:41,294 NOTHING MORE THAN AN INFORMATION 3897 02:10:41,294 --> 02:10:43,596 PARROT OR A SYNTHESIZING TOOL. 3898 02:10:43,596 --> 02:10:46,232 SO AS IN THE CASE OF CHATGPT, 3899 02:10:46,232 --> 02:10:48,167 IT'S ALSO PERPETUALLY STUCK IN 3900 02:10:48,167 --> 02:10:52,238 THE YEAR 2021, SO IT WOULDN'T BE 3901 02:10:52,238 --> 02:10:54,307 ABLE TO PROVIDE ANY TIMELY 3902 02:10:54,307 --> 02:10:55,942 UPDATES ON, FOR EXAMPLE, 3903 02:10:55,942 --> 02:10:58,411 RECENTLY PASSED LAWS, ANY 3904 02:10:58,411 --> 02:11:00,380 CURRENT EVENTS OR SOCIAL CHANGES 3905 02:11:00,380 --> 02:11:03,983 THAT ARE HAPPENING IN REALTIME 3906 02:11:03,983 --> 02:11:06,052 BUT WOULD INEVITABLY AFFECT THE 3907 02:11:06,052 --> 02:11:10,790 RESPONSES YOU GET. 3908 02:11:10,790 --> 02:11:13,092 ANOTHER THING LLM'S ARE NOT ARE 3909 02:11:13,092 --> 02:11:14,727 STORAGE CENTERS OR REPOSITORIES, 3910 02:11:14,727 --> 02:11:16,029 SO DHOANLT STORE DATA IN THE 3911 02:11:16,029 --> 02:11:17,664 SAME WAY -- THEY DON'T STAR DATA 3912 02:11:17,664 --> 02:11:19,866 IN THE SAME WAY THAT A DATABASE 3913 02:11:19,866 --> 02:11:23,936 OR A LITERATURE SEARCH ENGINE 3914 02:11:23,936 --> 02:11:27,440 MIGHT DO AND IMPORTANTLY THEY'RE 3915 02:11:27,440 --> 02:11:28,875 AT ANY TIME A VERIFIABLE SOURCE, 3916 02:11:28,875 --> 02:11:31,944 SO LLM'S CAN'T TESTIFY TO THE 3917 02:11:31,944 --> 02:11:33,246 TRUTHFULNESS OR INTEGRITY OR 3918 02:11:33,246 --> 02:11:35,181 VERACITY OF THE DATA THAT IT'S 3919 02:11:35,181 --> 02:11:36,082 GENERATING AND SPITTING BACK TO 3920 02:11:36,082 --> 02:11:37,617 YOU, AND THIS IS REALLY 3921 02:11:37,617 --> 02:11:39,152 CONSEQUENTIAL FOR RESEARCH RIGOR 3922 02:11:39,152 --> 02:11:45,391 AND DATA INTEGRITY. 3923 02:11:45,391 --> 02:11:47,560 SO DETION SPITE THE REALLY 3924 02:11:47,560 --> 02:11:48,494 EXPLOSIVE POPULARITY RECENTLY 3925 02:11:48,494 --> 02:11:50,630 AND PUBLIC INTEREST ACROSS MEDIA 3926 02:11:50,630 --> 02:11:52,198 COVERAGE IN THE LAST YEAR, 3927 02:11:52,198 --> 02:11:54,167 GENERATIVE AI ITSELF IS NOT ONLY 3928 02:11:54,167 --> 02:11:56,769 LIMITED TO LLM'S LIKE CHATGPT 3929 02:11:56,769 --> 02:11:58,504 BUT IT'S ALSO NOT NEW. 3930 02:11:58,504 --> 02:12:01,274 SO GENERATIVE AI HAS THIS REALLY 3931 02:12:01,274 --> 02:12:03,242 RICH THEORETICAL AND APPLIED 3932 02:12:03,242 --> 02:12:04,110 MATHEMATICAL HISTORY THAT DATES 3933 02:12:04,110 --> 02:12:07,346 BACK AT LEAST TO THE 1930S, AND 3934 02:12:07,346 --> 02:12:10,683 HAS BEEN HEAVILY INFLUENCED IN 3935 02:12:10,683 --> 02:12:17,256 THE EARLY YEARS BY WORK FROM 3936 02:12:17,256 --> 02:12:21,394 LINGUIST CHOMSKY AND FIRST CHAT 3937 02:12:21,394 --> 02:12:24,697 BOT CALLED WHY ELIZA IN THE LATE 3938 02:12:24,697 --> 02:12:25,798 19LY 0S. 3939 02:12:25,798 --> 02:12:27,667 IN DECADES THAT FOLLOWED WE SEE 3940 02:12:27,667 --> 02:12:30,036 REFINE REFINEMENT OF GENERATIVE 3941 02:12:30,036 --> 02:12:31,637 AI TECHNOLOGIES THAT CONVERGE 3942 02:12:31,637 --> 02:12:33,339 WITH THE BOOM OF COMPUTERRING 3943 02:12:33,339 --> 02:12:35,408 POWER AND BIG DATA ANALYTICS, IN 3944 02:12:35,408 --> 02:12:38,277 THE EARLY 2000S THE ERCHTS IS 3945 02:12:38,277 --> 02:12:39,579 INNOVATION FOR -- THE CENTERS 3946 02:12:39,579 --> 02:12:43,316 FOR INNOVATION FOR ARTIFICIAL 3947 02:12:43,316 --> 02:12:44,817 INTELLIGENCE SLOWLY MOVED OUT OF 3948 02:12:44,817 --> 02:12:46,252 ACADEMIA AND DEFENSE LABS TO 3949 02:12:46,252 --> 02:12:47,987 LARGE TECH COMPANIES LIKE GOOGLE 3950 02:12:47,987 --> 02:12:49,522 AND MICROSOFT JUST REALLY 3951 02:12:49,522 --> 02:12:51,057 DOMINATE THAT INNOVATION SPACE 3952 02:12:51,057 --> 02:12:52,592 AT PRESENT. 3953 02:12:52,592 --> 02:12:54,560 SO, YOU KNOW, EQUIPPED WITH KIND 3954 02:12:54,560 --> 02:12:56,529 OF THIS BASIC ALBEIT 3955 02:12:56,529 --> 02:12:57,230 FOUNDATIONAL UNDERSTANDING OF 3956 02:12:57,230 --> 02:13:00,733 WHAT LLM'S DO AND GENERATIVE AI 3957 02:13:00,733 --> 02:13:01,934 GENERALLY, WE'LL START TO EMBARK 3958 02:13:01,934 --> 02:13:04,570 ON THIS TOUR OF HOW LLM'S ARE 3959 02:13:04,570 --> 02:13:05,772 TRANSFORMING THE RESEARCH 3960 02:13:05,772 --> 02:13:08,608 ECOSYSTEM AND THE ETHICAL ISSUES 3961 02:13:08,608 --> 02:13:09,709 THAT REQUIRE CONSIDERATION ALONG 3962 02:13:09,709 --> 02:13:10,243 THE WAY. 3963 02:13:10,243 --> 02:13:12,979 AND WE'LL START WITH RESEARCH 3964 02:13:12,979 --> 02:13:15,515 DESIGN AND CONDUCT. 3965 02:13:15,515 --> 02:13:17,150 SO ONE OF THE MAIN MOTIVATIONS 3966 02:13:17,150 --> 02:13:19,752 FOR ADOPTING LLM'S IS THAT THEY 3967 02:13:19,752 --> 02:13:22,321 CAN HELP RESEARCHERS ACCELERATE 3968 02:13:22,321 --> 02:13:24,190 SPEED, EFFICIENCY OF DESIGNING 3969 02:13:24,190 --> 02:13:26,492 STUDIES, REALLY TRYING TO HELP 3970 02:13:26,492 --> 02:13:28,461 SPARK CREATIVE THINKING AND 3971 02:13:28,461 --> 02:13:31,631 IDEATION AND OVERCOME SOME 3972 02:13:31,631 --> 02:13:32,498 RATE-LIMITING STEPS IN THE 3973 02:13:32,498 --> 02:13:34,033 DESIGN PROCESS. 3974 02:13:34,033 --> 02:13:36,536 SO AT THE DESIGN STAGE, LLM'S 3975 02:13:36,536 --> 02:13:38,838 CAN REALLY CONFER SEVERAL 3976 02:13:38,838 --> 02:13:39,839 ADVANTAGES HAD. 3977 02:13:39,839 --> 02:13:41,808 BECAUSE THEY'RE TRAINED ON 3978 02:13:41,808 --> 02:13:44,110 ESSENTIALLY ALL THE INFORMATION 3979 02:13:44,110 --> 02:13:46,078 PUSHILY AVAILABLE ON THE 3980 02:13:46,078 --> 02:13:48,181 INTERNLTD, THEY CAN -- INTERNET 3981 02:13:48,181 --> 02:13:50,583 THEY CAN BE REALLY EFFECTIVE AT 3982 02:13:50,583 --> 02:13:51,651 ANALYZING KEY CONCEPTS AND 3983 02:13:51,651 --> 02:13:53,386 ENTIRE FIELDS OF LITERATURE, 3984 02:13:53,386 --> 02:13:55,288 HELPING RESEARCHERS ARRIVE AT 3985 02:13:55,288 --> 02:13:55,955 UNANSWERED QUESTIONS SOONER OR 3986 02:13:55,955 --> 02:13:58,457 HELPING TO EXPOSE KNOWLEDGE GAPS 3987 02:13:58,457 --> 02:14:01,594 THAT MIGHT REQUIRE YEARS -- 3988 02:14:01,594 --> 02:14:04,730 MONTHS IF NOT YEARS TO DO 3989 02:14:04,730 --> 02:14:05,932 COMPREHENSIVE LITERATURE 3990 02:14:05,932 --> 02:14:07,366 SEARCHES, AS MANY OF YOU MIGHT 3991 02:14:07,366 --> 02:14:10,336 BE FAMILIAR WITH DOING. 3992 02:14:10,336 --> 02:14:12,638 LLM'S CAN ALSO BE HELPFUL IN HIM 3993 02:14:12,638 --> 02:14:14,373 INNING REAL PATTERNS IN HUMAN 3994 02:14:14,373 --> 02:14:15,675 LANGUAGE, SO CREATING 3995 02:14:15,675 --> 02:14:17,777 OPPORTUNITIES TO STUDY HUMAN 3996 02:14:17,777 --> 02:14:19,879 BEHAVIORS AND INTERACTIONS THAT 3997 02:14:19,879 --> 02:14:22,849 ARE EITHER INCREDIBLY DIFFICULT 3998 02:14:22,849 --> 02:14:24,150 OR PERHAPS DANGEROUS TO CAPTURE 3999 02:14:24,150 --> 02:14:26,886 IN THE NATURAL WORLD, SO IT 4000 02:14:26,886 --> 02:14:28,621 REALLY SUPPORTS DATA COLLECTION 4001 02:14:28,621 --> 02:14:31,490 AND ANALYSIS, AND IN THIS WAY, 4002 02:14:31,490 --> 02:14:33,593 LLM'S CAN ACTUALLY HELP CORRECT 4003 02:14:33,593 --> 02:14:35,561 PERHAPS ISSUES OF 4004 02:14:35,561 --> 02:14:36,963 UNDERREPRESENTATION AMONG 4005 02:14:36,963 --> 02:14:38,197 PARTICIPANT GROUPS AND ENABLE 4006 02:14:38,197 --> 02:14:41,567 STUDIES THAT MIGHT OTHERWISE BE 4007 02:14:41,567 --> 02:14:43,536 INFEASIBLE OR IMPRACTICABLE TO 4008 02:14:43,536 --> 02:14:45,304 CARRY OUT, AND WE'LL TALK A 4009 02:14:45,304 --> 02:14:46,172 LITTLE BIT MORE ABOUT HOW THEY 4010 02:14:46,172 --> 02:14:47,907 DO THIS LATER ON. 4011 02:14:47,907 --> 02:14:50,243 LLM'S CAN ALSO SUPPORT MAKING 4012 02:14:50,243 --> 02:14:53,412 KEY DECISIONS ABOUT DESIGN BY 4013 02:14:53,412 --> 02:14:56,549 PROPOSING VARIABLES TO STUDY, TO 4014 02:14:56,549 --> 02:14:58,117 HELP DEVISE CONTROL GROUPS FOR 4015 02:14:58,117 --> 02:15:01,954 TRIALS OR TO ASSIST IN 4016 02:15:01,954 --> 02:15:02,922 RANDOMIZING CONTROL GROUPS 4017 02:15:02,922 --> 02:15:04,657 WITHIN STUDIES. 4018 02:15:04,657 --> 02:15:06,092 AND THERE'S BEEN CONSIDERABLE 4019 02:15:06,092 --> 02:15:07,393 DEBATES OF LATE REGARDING THE 4020 02:15:07,393 --> 02:15:11,564 USE OF LLM'S TO SUPPORT GRANT 4021 02:15:11,564 --> 02:15:13,733 WRITING AND AS IT WAS I THINK 4022 02:15:13,733 --> 02:15:15,368 DEMONSTRATED IN THE SURVEY THAT 4023 02:15:15,368 --> 02:15:17,803 WE TOOK, YOU KNOW, THERE'S LOTS 4024 02:15:17,803 --> 02:15:20,306 TO TALK ABOUT, WHETHER CHATGPT 4025 02:15:20,306 --> 02:15:23,142 CAN ACTUALLY HELP IMPROVE GRANT 4026 02:15:23,142 --> 02:15:25,444 OUTCOMES BY MODELING SUCCESSFUL 4027 02:15:25,444 --> 02:15:27,880 GRANTEE WRITING STYLES AND 4028 02:15:27,880 --> 02:15:28,180 STRUCTURES. 4029 02:15:28,180 --> 02:15:29,849 SO ANYONE WHO HAS TAKEN, YOU 4030 02:15:29,849 --> 02:15:33,219 KNOW, AN NIH WRITING CLASS KNOWS 4031 02:15:33,219 --> 02:15:37,790 THAT NIH REALLY LIKES TO, YOU 4032 02:15:37,790 --> 02:15:39,825 KNOW, STANDARDIZE THE WAY THAT 4033 02:15:39,825 --> 02:15:42,128 GRANT APPLICATIONS ARE 4034 02:15:42,128 --> 02:15:43,462 FORMATTED, AND THIS KIND OF 4035 02:15:43,462 --> 02:15:45,097 TRANSLATES TO SPECIFIC TYPES OF 4036 02:15:45,097 --> 02:15:47,266 LANGUAGE. SO CHATGPT YOU CAN 4037 02:15:47,266 --> 02:15:49,902 ENVISION CAN HELP PAVE THE WAY 4038 02:15:49,902 --> 02:15:52,204 FOR MAYBE IMPROVED EQUITY GAINS 4039 02:15:52,204 --> 02:15:53,506 IN THE GRANT SUBMISSION PROCESS 4040 02:15:53,506 --> 02:15:55,374 FOR PEOPLE LIKE FIRST-TIME 4041 02:15:55,374 --> 02:15:56,709 APPLICANTS WHO HAVE NEVER 4042 02:15:56,709 --> 02:15:59,412 SUBMITTED A GRANT BEFORE, OR 4043 02:15:59,412 --> 02:16:01,614 PRIMARILY FOR PEOPLE FOR WHOM 4044 02:16:01,614 --> 02:16:05,117 ENGLISH MAY NOT BE THEIR FIRST 4045 02:16:05,117 --> 02:16:05,451 LANGUAGE. 4046 02:16:05,451 --> 02:16:08,054 SO THESE BENEFITS SHOULD NOT 4047 02:16:08,054 --> 02:16:09,922 THEMSELVES DRIVE LLM USE. 4048 02:16:09,922 --> 02:16:11,357 RATHER, YOU KNOW, REFLECTIONS 4049 02:16:11,357 --> 02:16:13,626 ABOUT WHETHER LLM'S ARE INDEED 4050 02:16:13,626 --> 02:16:15,094 CONDUCIVE TO THE SPECIFIC 4051 02:16:15,094 --> 02:16:17,530 RESEARCH TASK OR QUESTION OF 4052 02:16:17,530 --> 02:16:19,799 INTEREST SHOULD REALLY DRIVE 4053 02:16:19,799 --> 02:16:20,166 THOSE DECISIONS. 4054 02:16:20,166 --> 02:16:22,335 SO NOT ALL RESEARCH TASKS ARE 4055 02:16:22,335 --> 02:16:25,171 DESIGNED ALIKE, SO THERE SHOULD 4056 02:16:25,171 --> 02:16:27,039 BE THIS CONSIDERATION ABOUT 4057 02:16:27,039 --> 02:16:29,642 WHETHER LLM'S ARE APPROPRIATE TO 4058 02:16:29,642 --> 02:16:33,612 THE RESEARCH TASK OR QUESTION OF 4059 02:16:33,612 --> 02:16:33,980 INTEREST. 4060 02:16:33,980 --> 02:16:35,047 THERE'S ALSO A QUESTION ABOUT 4061 02:16:35,047 --> 02:16:36,682 WHETHER IT'S THE MOST RIGOROUS 4062 02:16:36,682 --> 02:16:40,152 WAY TO ACHIEVE THAT TASK, AND 4063 02:16:40,152 --> 02:16:41,587 RELATELY WHETHER IT'S THE MOST 4064 02:16:41,587 --> 02:16:45,091 FEASIBLE WAY TO DO THAT AS WELL. 4065 02:16:45,091 --> 02:16:49,895 AND I REALLY APPRECIATE HOW ALEX 4066 02:16:49,895 --> 02:16:51,530 LONDON ACTUALLY HELPS US THINK 4067 02:16:51,530 --> 02:16:55,134 THROUGH THE STRUCTURAL TYPES OF 4068 02:16:55,134 --> 02:16:57,436 PROBLEMS THAT AI HELPS US 4069 02:16:57,436 --> 02:16:58,337 OVERCOME IN THE RESEARCH 4070 02:16:58,337 --> 02:17:00,606 PROCESS, SO HE HAS THIS REALLY 4071 02:17:00,606 --> 02:17:04,243 HELPFUL DIAGRAM ABOUT, YOU KNOW, 4072 02:17:04,243 --> 02:17:10,916 HOW AI IN GENERAL IS, CAN BE 4073 02:17:10,916 --> 02:17:11,650 INTEGRATED WITHIN HEALTHCARE 4074 02:17:11,650 --> 02:17:13,419 SYSTEMS AND TO SUPPORT PATIENT 4075 02:17:13,419 --> 02:17:15,921 CARE, BUT I THINK MANY OF HIS 4076 02:17:15,921 --> 02:17:17,790 OBSERVATIONS LIKEWISE ARE REALLY 4077 02:17:17,790 --> 02:17:19,091 APPLICABLE TO RESEARCH, HE IS 4078 02:17:19,091 --> 02:17:21,961 SPESHLY REGARDING THE IMPACTS 4079 02:17:21,961 --> 02:17:24,363 THAT DATA FROM WHICH AI MODELS 4080 02:17:24,363 --> 02:17:27,833 ARE BUILT WILL HAVE ON THE 4081 02:17:27,833 --> 02:17:29,268 RESEARCH ENVIRONMENTS THAT AI 4082 02:17:29,268 --> 02:17:30,903 SYSTEMS ARE EVENTUALLY 4083 02:17:30,903 --> 02:17:31,370 IMPLEMENTED IN. 4084 02:17:31,370 --> 02:17:32,772 SO I HIGHLY RECOMMEND THIS PAPER 4085 02:17:32,772 --> 02:17:36,809 THAT CAME OUT IN CELL REPORTS, I 4086 02:17:36,809 --> 02:17:39,578 BELIEVE, IN 2022-H AND I THINK 4087 02:17:39,578 --> 02:17:41,547 WITH SO MUCH TALK OF MEDICAL AI, 4088 02:17:41,547 --> 02:17:42,848 THERE'S ALSO THIS TENDENCY TO 4089 02:17:42,848 --> 02:17:45,151 THINK LLM'S MAY JUST BE RELEVANT 4090 02:17:45,151 --> 02:17:46,685 FOR CLINICAL OR BIOMEDICAL 4091 02:17:46,685 --> 02:17:48,320 RESEARCH, BUT THERE'S THIS 4092 02:17:48,320 --> 02:17:49,622 GROWING ENTHUSIASM FOR 4093 02:17:49,622 --> 02:17:51,824 APPLICATIONS OF LLM'S TO SOCIAL 4094 02:17:51,824 --> 02:17:54,326 SCIENCE RESEARCH AS WELL. 4095 02:17:54,326 --> 02:17:56,662 SO HERE I'M EXCERPTING A PAPER 4096 02:17:56,662 --> 02:17:58,164 FROM GROSSMAN AND COLLEAGUES 4097 02:17:58,164 --> 02:18:00,366 THAT WROTE IN A RECENT PIECE, 4098 02:18:00,366 --> 02:18:02,001 EXCELLENT PIECE IN SCIENCE THAT 4099 02:18:02,001 --> 02:18:04,637 REALLY THESE ADVANCES IN LLM'S 4100 02:18:04,637 --> 02:18:05,738 ARE OFFERING OPPORTUNITIES TO 4101 02:18:05,738 --> 02:18:07,807 TEST THEORIES AND HYPOTHESES 4102 02:18:07,807 --> 02:18:10,543 ABOUT HUMAN BEHAVIOR AT GREAT 4103 02:18:10,543 --> 02:18:13,179 SCALE AND SPEED, THEY WRITE, 4104 02:18:13,179 --> 02:18:14,380 BECAUSE, QUOTE, THEY CAN 4105 02:18:14,380 --> 02:18:15,915 REPRESENT MYRIAD HUMAN 4106 02:18:15,915 --> 02:18:17,917 EXPERIENCES AND PERSPECTIVES, 4107 02:18:17,917 --> 02:18:19,685 POSSIBLY GIVING THEM A HIGHER 4108 02:18:19,685 --> 02:18:21,620 DEGREE OF FREEDOM TO GENERATE 4109 02:18:21,620 --> 02:18:23,956 DIVERSE RESPONSES AND WITH 4110 02:18:23,956 --> 02:18:25,524 HIGHER FIDELITY THAN HAS BEEN 4111 02:18:25,524 --> 02:18:26,692 PREVIOUSLY POSSIBLE WITH 4112 02:18:26,692 --> 02:18:28,527 CONVENTIONAL HUMAN PARTICIPANT 4113 02:18:28,527 --> 02:18:32,698 MODELS. 4114 02:18:32,698 --> 02:18:35,000 SO WITH THAT WE'VE COME TO OUR 4115 02:18:35,000 --> 02:18:36,202 FIRST EMERGENT APPLICATION AND 4116 02:18:36,202 --> 02:18:38,037 YOU'LL KNOW IT'S AN EMERGENT 4117 02:18:38,037 --> 02:18:39,805 APPLICATION WITH THAT LITTLE 4118 02:18:39,805 --> 02:18:41,307 SUNRISE ICON IN THE UPPER 4119 02:18:41,307 --> 02:18:42,875 LEFT-HAND CORNER AND THIS IS 4120 02:18:42,875 --> 02:18:45,077 LLM'S GENERATION OF SYNTHETIC 4121 02:18:45,077 --> 02:18:45,511 DATA. 4122 02:18:45,511 --> 02:18:47,480 SYNTHETIC DATA ARE ARTIFICIAL 4123 02:18:47,480 --> 02:18:49,348 DATA THAT'S CREATED BY 4124 02:18:49,348 --> 02:18:50,449 ALGORITHMS BUT CAN BE USED TO 4125 02:18:50,449 --> 02:18:53,619 TRAIN LLM'S, AND THEY CAN BE 4126 02:18:53,619 --> 02:18:55,488 USED, SYNTHETIC DATA CAN BE USED 4127 02:18:55,488 --> 02:18:56,822 TO SUPPLEMENT REAL WORLD DATA, 4128 02:18:56,822 --> 02:18:58,124 CAN BE INSPIRED BY REAL WORLD 4129 02:18:58,124 --> 02:19:00,759 DATA OR TO CREATE NEW DATA SETS 4130 02:19:00,759 --> 02:19:02,728 ALTOGETHER USING REAL WORLD DATA 4131 02:19:02,728 --> 02:19:05,264 AS A BASIS. 4132 02:19:05,264 --> 02:19:06,665 BUT SYNTHETIC DATA IS 4133 02:19:06,665 --> 02:19:08,100 ADVANTAGEOUS BECAUSE THEY ARE 4134 02:19:08,100 --> 02:19:10,302 GENERALLY NOT PERSONALLY 4135 02:19:10,302 --> 02:19:10,636 IDENTIFIABLE. 4136 02:19:10,636 --> 02:19:12,571 SO STUDIES WHICH USE OR 4137 02:19:12,571 --> 02:19:14,340 GENERATE, YOU KNOW, SYNTHETIC 4138 02:19:14,340 --> 02:19:16,108 DATA ARE THEREFORE NOT 4139 02:19:16,108 --> 02:19:17,209 CONSIDERED HUMAN SUBJECTS 4140 02:19:17,209 --> 02:19:18,844 RESEARCH AND WOULD LIKELY NOT 4141 02:19:18,844 --> 02:19:21,814 FALL UNDER THE AMBIT OF THE 4142 02:19:21,814 --> 02:19:24,416 COMMON RULE OR UNDER IRB REVIEW. 4143 02:19:24,416 --> 02:19:26,218 SO THE ADVANTAGE OF USING 4144 02:19:26,218 --> 02:19:28,387 SYNTHETIC DATASETS FOR RESEARCH 4145 02:19:28,387 --> 02:19:31,056 MIGHT THEREFORE BE TWOFOLD. 4146 02:19:31,056 --> 02:19:33,092 THEY COULD BETTER PROTECT 4147 02:19:33,092 --> 02:19:34,293 PARTICIPANT PRIVACY BECAUSE THEY 4148 02:19:34,293 --> 02:19:38,330 DON'T CONTAIN THIS PERSONALLY 4149 02:19:38,330 --> 02:19:39,098 IDENTIFIABLE INFORMATION, AND 4150 02:19:39,098 --> 02:19:41,167 THAT'S DIFFERENT THAN 4151 02:19:41,167 --> 02:19:41,867 DEIDENTIFIED INFORMATION WHICH, 4152 02:19:41,867 --> 02:19:44,136 YOU KNOW, CAME FROM SOMETHING 4153 02:19:44,136 --> 02:19:44,770 THAT'S PERSONALLY IDENTIFIABLE 4154 02:19:44,770 --> 02:19:47,640 AND THEN HAD SEVERAL IDENTIFIERS 4155 02:19:47,640 --> 02:19:49,842 REMOVED IN ORDER TO MAKE IT 4156 02:19:49,842 --> 02:19:50,409 DEIDENTIFIED. 4157 02:19:50,409 --> 02:19:53,245 SO SYNTHETIC DATA AT THE GIT-GO 4158 02:19:53,245 --> 02:19:55,114 DOESN'T CONTAIN ANY OF THOSE 4159 02:19:55,114 --> 02:19:56,849 IDENTIFIERS NOR HAD IT REMOVED 4160 02:19:56,849 --> 02:19:58,484 AT ANY POINT. 4161 02:19:58,484 --> 02:20:01,053 AND IT CAN BE USED, IT CAN BE 4162 02:20:01,053 --> 02:20:04,657 CREATED TO CONTROL FOR BIASES AS 4163 02:20:04,657 --> 02:20:05,090 WELL. 4164 02:20:05,090 --> 02:20:07,159 SO SYNTHETIC DATA CAN HELP 4165 02:20:07,159 --> 02:20:08,827 RESEARCHERS FILL IN GAPS WHERE 4166 02:20:08,827 --> 02:20:10,930 MAYBE THERE'S MISSING DATA, AND 4167 02:20:10,930 --> 02:20:13,666 THIS MISSING DATA LIMITS 4168 02:20:13,666 --> 02:20:14,867 POTENTIALLY THE INTERNAL OR 4169 02:20:14,867 --> 02:20:16,936 EXTERNAL VALIDITY OF FINDINGS, 4170 02:20:16,936 --> 02:20:19,038 AND IN THE PROCESS OF THAT 4171 02:20:19,038 --> 02:20:20,873 REALLY REDUCE THE RESOURCES 4172 02:20:20,873 --> 02:20:22,508 NEEDED TO COLLECT ADDITIONAL 4173 02:20:22,508 --> 02:20:25,244 DATA TO TRAIN THEIR ALGORITHMS. 4174 02:20:25,244 --> 02:20:27,313 AND THERE'S THIS REALLY 4175 02:20:27,313 --> 02:20:29,848 EXCELLENT REPORT FROM THE ROYAL 4176 02:20:29,848 --> 02:20:32,818 SOCIETY ON KIND OF THE WHO, 4177 02:20:32,818 --> 02:20:34,553 WHAT, WHEN, WHERE AND WHY OF 4178 02:20:34,553 --> 02:20:37,189 SYNTHETIC DATA ASK AND SOME NEW 4179 02:20:37,189 --> 02:20:38,958 SCHOLARSHIP COMING OUT ABOUT HOW 4180 02:20:38,958 --> 02:20:40,159 WE SHOULD TREAT SYNTHETIC DATA 4181 02:20:40,159 --> 02:20:43,762 IN COMPARISON TO DEIDENTIFIED OR 4182 02:20:43,762 --> 02:20:46,065 PROTECTED HEALTH INFORMATION. 4183 02:20:46,065 --> 02:20:48,801 SO ALL THESE BENEFITS ARE 4184 02:20:48,801 --> 02:20:50,536 POSSIBLE IF WE ASSUME SOME 4185 02:20:50,536 --> 02:20:52,071 PRETTY FOUNDATIONAL REALITIES 4186 02:20:52,071 --> 02:20:54,673 ABOUT THE ACTUAL DATA UPON WHICH 4187 02:20:54,673 --> 02:20:56,308 LLM'S ARE TRAINED ON, THAT CAN 4188 02:20:56,308 --> 02:21:01,380 BE SYNTHETIC OR REAL WORLD DATA, 4189 02:21:01,380 --> 02:21:02,815 AND I REALLY THINK ABOUT THEM IN 4190 02:21:02,815 --> 02:21:05,117 TERMS OF THREE PRIMARY SOURCES 4191 02:21:05,117 --> 02:21:06,752 OF BIAS OF THAT DATA. 4192 02:21:06,752 --> 02:21:09,054 SO THEY REALLY STEM FROM THE 4193 02:21:09,054 --> 02:21:10,889 QUALITY AND REPRESENTATIVENESS 4194 02:21:10,889 --> 02:21:16,395 OF THE TRAINING DATA AND THEY 4195 02:21:16,395 --> 02:21:18,664 ALSO CAN EMBED IN THE METHODS 4196 02:21:18,664 --> 02:21:19,765 AND CHOICES AROUND VALIDATION 4197 02:21:19,765 --> 02:21:23,168 AND FINALLY IN REAL WORLD 4198 02:21:23,168 --> 02:21:23,535 IMPLEMENTATION. 4199 02:21:23,535 --> 02:21:26,105 SO I THINK IT COMES AS NO 4200 02:21:26,105 --> 02:21:27,873 SURPRISE THAT, YOU KNOW, 4201 02:21:27,873 --> 02:21:29,074 LEARNERS IN THE ROOM THAT IF 4202 02:21:29,074 --> 02:21:33,012 DATA IS UNREMITTIVE -- 4203 02:21:33,012 --> 02:21:33,879 UNREPRESENTATIVE OR QUALITY OF A 4204 02:21:33,879 --> 02:21:36,115 PHENOMENON OF INTEREST, MAYBE 4205 02:21:36,115 --> 02:21:37,316 THE MODEL WILL NOT LEARN THE 4206 02:21:37,316 --> 02:21:38,884 RELEVANT INFORMATION AS 4207 02:21:38,884 --> 02:21:40,519 EFFECTIVELY, AND AS A RESULT, 4208 02:21:40,519 --> 02:21:42,054 THIS HAS MAJOR SIGNIFICANCE ON 4209 02:21:42,054 --> 02:21:44,456 AN AI MODEL'S PERFORMANCE, IT'S 4210 02:21:44,456 --> 02:21:47,393 LIKELY TO SUFFER WITHOUT 4211 02:21:47,393 --> 02:21:50,262 APPROPRIATE REPRESENTATION FROM 4212 02:21:50,262 --> 02:21:51,697 POPULATIONS OF INTEREST, LEADING 4213 02:21:51,697 --> 02:21:53,198 TO THINGS LIKE INACCURATE 4214 02:21:53,198 --> 02:21:55,100 PREDICTIONS OR IN THE CASE OF 4215 02:21:55,100 --> 02:21:57,803 HEALTH RESEARCH, PERHAPS REDUCED 4216 02:21:57,803 --> 02:22:00,105 DIAGNOSTIC YIELD OR CAPABILITY. 4217 02:22:00,105 --> 02:22:03,842 WE REALLY WORRY ABOUT THINGS 4218 02:22:03,842 --> 02:22:07,112 LIKE GENERALIZEABILITY, SO IF WE 4219 02:22:07,112 --> 02:22:09,281 DON'T PUT IN QUALITY DATA, WE 4220 02:22:09,281 --> 02:22:12,017 WON'T BE ABLE TO ACTUALLY 4221 02:22:12,017 --> 02:22:13,786 GENERALIZE THOSE PATTERNS AND 4222 02:22:13,786 --> 02:22:16,088 FINDINGS ACROSS BROADER 4223 02:22:16,088 --> 02:22:16,622 PARTICIPANT POPULATIONS. 4224 02:22:16,622 --> 02:22:19,692 AND THAT MAY GUIDE SCIENTIFIC -- 4225 02:22:19,692 --> 02:22:22,094 MAY MISGUIDE SCIENTIFIC 4226 02:22:22,094 --> 02:22:25,030 PRIORITIES AND ULTIMATELY LEAD 4227 02:22:25,030 --> 02:22:27,333 TO ASYMMETRICAL BENEFIT SHARING 4228 02:22:27,333 --> 02:22:29,601 AND BURDEN AND DISCRIMINATION, 4229 02:22:29,601 --> 02:22:32,371 AS AGAIN WE SAW IN THE WORD 4230 02:22:32,371 --> 02:22:32,738 CLOUD. 4231 02:22:32,738 --> 02:22:35,674 SO THE KEY TAKE AWAYS IS THAT 4232 02:22:35,674 --> 02:22:37,643 LLM'S, ESPECIALLY COMMERCIAL 4233 02:22:37,643 --> 02:22:41,280 LLM'S, ARE NOT REALLY DESIGNED 4234 02:22:41,280 --> 02:22:43,482 WITH RESEARCH OR CLINICAL DATA 4235 02:22:43,482 --> 02:22:45,751 PRIVACY COMPLIANCE IN MIND. 4236 02:22:45,751 --> 02:22:48,287 SO INPUT DATA THAT'S NEEDED TO 4237 02:22:48,287 --> 02:22:50,689 TRAIN, OPERATE OR REFINE LLM'S 4238 02:22:50,689 --> 02:22:52,358 MAY NOT NECESSARILY REQUIRE 4239 02:22:52,358 --> 02:22:54,193 EXPLICIT CONSENT FROM 4240 02:22:54,193 --> 02:22:55,728 INDIVIDUALS OR COMMUNITIES ABOUT 4241 02:22:55,728 --> 02:22:58,030 WHOM THAT DATA RELATE, 4242 02:22:58,030 --> 02:23:00,232 ESPECIALLY IN THE CASE OF THINGS 4243 02:23:00,232 --> 02:23:02,201 LIKE SYNTHETIC DATA, AND STUDIES 4244 02:23:02,201 --> 02:23:04,603 THAT USE LLM'S TRAINED ON 4245 02:23:04,603 --> 02:23:05,904 SYNTHETIC DATASETS ARE REALLY 4246 02:23:05,904 --> 02:23:07,439 UNLIKELY TO EVER RECEIVE FORMAL 4247 02:23:07,439 --> 02:23:09,041 ETHICS REVIEW OR APPROVAL, SO 4248 02:23:09,041 --> 02:23:10,709 WE'RE ESSENTIALLY TAKING OUT, 4249 02:23:10,709 --> 02:23:13,812 YOU KNOW, A HUGE SECTION OF 4250 02:23:13,812 --> 02:23:15,981 RESEARCH THAT WOULD OTHERWISE 4251 02:23:15,981 --> 02:23:19,485 UNDERGO SOME SORT OF ETHICS 4252 02:23:19,485 --> 02:23:21,353 OVERSIGHT FROM THE PIPELINE. 4253 02:23:21,353 --> 02:23:23,856 SO THE ASSOCIATIONS BETWEEN DATA 4254 02:23:23,856 --> 02:23:28,227 INPUTS AND OUTPUTS MAKE 4255 02:23:28,227 --> 02:23:28,994 POTENTIALLY SENSITIVE HEALTH 4256 02:23:28,994 --> 02:23:31,964 DATA INVOLVING PARTICIPANTS 4257 02:23:31,964 --> 02:23:33,999 RATHER RISKY WHEN WE USE THEM IN 4258 02:23:33,999 --> 02:23:36,335 THE CONDUCT OF RESEARCH. 4259 02:23:36,335 --> 02:23:38,203 SO IN LIGHT OF THOSE RISKS, THIS 4260 02:23:38,203 --> 02:23:40,506 IS A PAPER BY WATKINS THAT 4261 02:23:40,506 --> 02:23:42,374 REALLY PROVIDES WHAT SYNC A 4262 02:23:42,374 --> 02:23:43,675 HELPFUL GUIDE FOR RESEARCHERS 4263 02:23:43,675 --> 02:23:46,111 AND POTENTIALLY ALSO IRBS, LIKE 4264 02:23:46,111 --> 02:23:48,747 ABOUT THE ETHICAL ISSUES TO 4265 02:23:48,747 --> 02:23:51,383 CONSIDER WHEN USING LLM'S INTO 4266 02:23:51,383 --> 02:23:54,686 ACTUAL RESEARCH WORKFLOWS. 4267 02:23:54,686 --> 02:23:57,222 SO THEY WRITE ABOUT OR PROPOSE 4268 02:23:57,222 --> 02:23:59,625 THAT RESEARCHERS SHOULD ASK 4269 02:23:59,625 --> 02:24:01,460 QUESTIONS LIKE HOW TRAINING DATA 4270 02:24:01,460 --> 02:24:03,662 ARE MADE MORE TRANSPARENT TO 4271 02:24:03,662 --> 02:24:05,764 DATA CONTRIBUTORS AND USERS F 4272 02:24:05,764 --> 02:24:09,368 HOW LLM OUTPUTS WILL ENABLE 4273 02:24:09,368 --> 02:24:11,670 REPRODUCIBILITY STUDIES, AND 4274 02:24:11,670 --> 02:24:14,840 ASKING WHETHER THOSE OUTPUTS ARE 4275 02:24:14,840 --> 02:24:18,043 BEING TREATED IN A 4276 02:24:18,043 --> 02:24:19,244 NONANTHROPOMORPHIC MANNER, SO WE 4277 02:24:19,244 --> 02:24:22,414 HAVE A TENDENCY TO ASCRIBE A 4278 02:24:22,414 --> 02:24:25,250 SENSE OF AUTHORITY AND 4279 02:24:25,250 --> 02:24:28,754 LEGITIMACY TO NUMBERS AND 4280 02:24:28,754 --> 02:24:30,956 MACHINE-GENERATED OUTPUTS THAT 4281 02:24:30,956 --> 02:24:33,992 WE DON'T ALWAYS CONSIDER WHEN 4282 02:24:33,992 --> 02:24:35,527 THOSE OUTPUTS ARE BEING 4283 02:24:35,527 --> 02:24:36,829 GENERATED BY A HUMAN. 4284 02:24:36,829 --> 02:24:39,698 SO THERE'S A LOT OF REALLY 4285 02:24:39,698 --> 02:24:43,202 INTERESTING STS RESEARCH, SOCIAL 4286 02:24:43,202 --> 02:24:44,203 STUDIES SCIENCE RESEARCH LOOKING 4287 02:24:44,203 --> 02:24:45,938 AT THE AUTHORITY THAT'S GIVEN TO 4288 02:24:45,938 --> 02:24:48,340 OUTPUTS OF ALGORITHMS IN 4289 02:24:48,340 --> 02:24:49,441 COMPARISON TO HUMANS, AND I 4290 02:24:49,441 --> 02:24:51,376 WOULD BE REALLY HAPPY TO -- 4291 02:24:51,376 --> 02:24:53,278 THAT'S A WHOLE ANOTHER TOPIC OF 4292 02:24:53,278 --> 02:24:54,246 CONVERSATION AND LOTS OF 4293 02:24:54,246 --> 02:24:56,215 SCHOLARS TO LOOK AT WHO ARE 4294 02:24:56,215 --> 02:24:57,416 DOING REALLY INTERESTING WORK IN 4295 02:24:57,416 --> 02:24:59,184 THAT REALM. 4296 02:24:59,184 --> 02:25:03,121 SO IT'S WORTH NOTING IN THIS 4297 02:25:03,121 --> 02:25:05,324 NEXT PHASE OF THE RESEARCH 4298 02:25:05,324 --> 02:25:08,494 PROCESS IN RESEARCH PEER REVIEW 4299 02:25:08,494 --> 02:25:10,762 THAT THE NIH RECENTLY RELEASED 4300 02:25:10,762 --> 02:25:12,097 AN OFFICIAL POSITION ON THE USE 4301 02:25:12,097 --> 02:25:16,368 OF LLM'S AND CHATGPT I THINK 4302 02:25:16,368 --> 02:25:17,903 REALLY THEIR COMMENTARY IS 4303 02:25:17,903 --> 02:25:19,872 DIRECTED AT CHATGPT, BAN BEING 4304 02:25:19,872 --> 02:25:22,274 THE USE OF THEM SPECIFICALLY IN 4305 02:25:22,274 --> 02:25:25,110 NIH PEER REVIEW. 4306 02:25:25,110 --> 02:25:30,716 SO THIS I THINK WAS REALLY AN 4307 02:25:30,716 --> 02:25:33,352 IMPORTANT POSITION TAKEN BY A 4308 02:25:33,352 --> 02:25:35,521 FEDERAL GRANTING AGENCY BECAUSE 4309 02:25:35,521 --> 02:25:38,824 GRANT APPLICATIONS AND CONTRACT 4310 02:25:38,824 --> 02:25:39,925 PROPOSAL MATERIALS ARE REALLY 4311 02:25:39,925 --> 02:25:41,627 PRIVILEGED INFORMATION THAT NIH 4312 02:25:41,627 --> 02:25:43,395 PROHIBITS FROM BEING SHARED OR 4313 02:25:43,395 --> 02:25:45,464 DISSEMINATED IN ANY MEANS 4314 02:25:45,464 --> 02:25:45,797 WHATSOEVER. 4315 02:25:45,797 --> 02:25:52,704 SO THE USE OF CHATGPT, THEY PUT 4316 02:25:52,704 --> 02:25:54,673 OUT IN THIS RELEASE, REALLY 4317 02:25:54,673 --> 02:25:56,408 VIOLATES THIS SHARING 4318 02:25:56,408 --> 02:25:57,175 PROHIBITION THAT THEY HAVE 4319 02:25:57,175 --> 02:25:59,144 BECAUSE IT REQUIRES SUBSTANTIAL 4320 02:25:59,144 --> 02:26:02,080 AND DETAILED INFORMATIONAL 4321 02:26:02,080 --> 02:26:02,414 INPUT. 4322 02:26:02,414 --> 02:26:04,082 SO THERE'S NO GUARANTEE OF WHERE 4323 02:26:04,082 --> 02:26:08,754 DATA ARE BEING SENT, SAVED, USED 4324 02:26:08,754 --> 02:26:10,389 OR HOW THAT DATA MIGHT BE USED 4325 02:26:10,389 --> 02:26:12,491 IN THE FUTURE BECAUSE ONCE WE 4326 02:26:12,491 --> 02:26:16,228 PROMPT CHATGPT WITH MAYBE SOME 4327 02:26:16,228 --> 02:26:17,963 SUPPORT WITH HOW AN APPLICATION 4328 02:26:17,963 --> 02:26:21,133 SHOULD BE REVIEWED OR EVALUATED, 4329 02:26:21,133 --> 02:26:23,235 WE HAVE NO IDEA KIND OF WHERE 4330 02:26:23,235 --> 02:26:24,436 THAT DATA END UP. 4331 02:26:24,436 --> 02:26:26,438 SO I THINK THAT NIH WAS VERY 4332 02:26:26,438 --> 02:26:28,140 WELL PLACED TO MAKE KIND OF THIS 4333 02:26:28,140 --> 02:26:31,877 BLANK EPT PROHIBITION ON CHAT GP 4334 02:26:31,877 --> 02:26:33,845 CHATGPT AND LLM'S IN THE PEER 4335 02:26:33,845 --> 02:26:36,481 REVIEW PROCESS. 4336 02:26:36,481 --> 02:26:38,016 SO I THINK WE'LL TALK BRIEFLY 4337 02:26:38,016 --> 02:26:40,953 ABOUT THE LIMITS OF IRB REVIEW 4338 02:26:40,953 --> 02:26:42,287 IN OVERSIGHTS. 4339 02:26:42,287 --> 02:26:43,355 WE TALKED A LITTLE BIT ABOUT IT 4340 02:26:43,355 --> 02:26:45,557 IN TERMS OF SYNTHETIC DATA, BUT 4341 02:26:45,557 --> 02:26:47,759 IT'S ALSO WORTH MENTIONING HOW 4342 02:26:47,759 --> 02:26:49,494 IRB'S ARE LIMITED IN THE SCOPE 4343 02:26:49,494 --> 02:26:52,030 OF THE REVIEWS FROM MANY 4344 02:26:52,030 --> 02:26:54,232 AI-BASED STUDIES, DUE IN PART TO 4345 02:26:54,232 --> 02:26:57,636 HOW ONE PART OF THE 4R5 CFR 46 4346 02:26:57,636 --> 02:26:59,771 IS INTERPRETED, REGARDING THE 4347 02:26:59,771 --> 02:27:02,374 LONG RANGE EFFECTS OF RESEARCH. 4348 02:27:02,374 --> 02:27:04,476 SO SOME OF MY COLLEAGUES 4349 02:27:04,476 --> 02:27:07,079 ALTHOUGH DAVID MAGNIS THE 4350 02:27:07,079 --> 02:27:08,046 ASTANFORD WRITE ABOUT THIS 4351 02:27:08,046 --> 02:27:09,615 SPECIFIC IRB LIMITATION IN THE 4352 02:27:09,615 --> 02:27:12,017 CON TESKS AI RESEARCH 4353 02:27:12,017 --> 02:27:13,652 GENERALLY -- CONTEXT OF AI 4354 02:27:13,652 --> 02:27:14,753 RESEARCH GENERALLY. 4355 02:27:14,753 --> 02:27:16,054 ONE INTERPRETATION IS QUESTIONS 4356 02:27:16,054 --> 02:27:17,689 WHETHER IRB'S CAN CONSIDER 4357 02:27:17,689 --> 02:27:20,759 THINGS LIKE GROUP HARMS OR LONG 4358 02:27:20,759 --> 02:27:22,894 RANGE EFFECTS OF AI RESEARCH AND 4359 02:27:22,894 --> 02:27:24,496 THE OUTPUTS THAT ARE GENERATED 4360 02:27:24,496 --> 02:27:27,566 BY AI RESEARCH UNDER THIS 4361 02:27:27,566 --> 02:27:30,035 PARTICULAR CLAWS. 4362 02:27:30,035 --> 02:27:33,639 SO I WOULD -- CLAWS, SO I WOULD 4363 02:27:33,639 --> 02:27:35,841 ALSO -- CLAUSE, SOILED ALSO 4364 02:27:35,841 --> 02:27:37,476 REFER PEOPLE TO HIS WORK IN 4365 02:27:37,476 --> 02:27:38,477 ESTABLISHING NEW ROLES OR TRYING 4366 02:27:38,477 --> 02:27:40,212 TO CHANGE ROLES FOR IRB'S IN THE 4367 02:27:40,212 --> 02:27:45,851 WAKE OF NEW HARMS AND BENEFITS 4368 02:27:45,851 --> 02:27:47,619 THAT AI REALLY POSES. 4369 02:27:47,619 --> 02:27:50,489 SO IN SOME IRB'S MAY BE LIMITED 4370 02:27:50,489 --> 02:27:51,757 IN THE DEGREE OF ETHICS 4371 02:27:51,757 --> 02:27:54,626 OVERSIGHT AND INTERVENTION THEY 4372 02:27:54,626 --> 02:27:55,827 CAN HAVE BECAUSE MANY STUDIES 4373 02:27:55,827 --> 02:27:58,797 THAT USE LLM TOOLS FALL OUTSIDE 4374 02:27:58,797 --> 02:28:00,532 THE DEFINITION OF HUMAN SUBJECTS 4375 02:28:00,532 --> 02:28:02,434 RESEARCH, MAYBE TO THE EXTENT 4376 02:28:02,434 --> 02:28:03,635 THEY'RE CONSIDERED HUMAN 4377 02:28:03,635 --> 02:28:05,270 SUBJECTS IRB'S ARE ALSO 4378 02:28:05,270 --> 02:28:06,371 INFREGHTLY STAFFED WITH 4379 02:28:06,371 --> 02:28:09,074 REQUISITE AI AND ML EXPERTISE 4380 02:28:09,074 --> 02:28:13,845 AND DATA PRIVACY EXPERTS TO 4381 02:28:13,845 --> 02:28:15,914 ASSESS AND ATEST THE BALANCING 4382 02:28:15,914 --> 02:28:18,517 OF THOSE REALISTIC HARMS AND 4383 02:28:18,517 --> 02:28:21,887 BENEFIT, AND I'M PART OF A GROUP 4384 02:28:21,887 --> 02:28:26,825 THAT HOLLY TAYLOR LEADS CALLED 4385 02:28:26,825 --> 02:28:28,894 THE AREA CONSORTIUM AND OUR 4386 02:28:28,894 --> 02:28:30,529 SMALL WORKING GROUP HAS STUDIED 4387 02:28:30,529 --> 02:28:33,965 THIS ISSUE OF IRB EXPERTISE AND 4388 02:28:33,965 --> 02:28:35,901 WHETHER AND WHEN THEY USE 4389 02:28:35,901 --> 02:28:43,542 EXTERNAL CONSULTANTS TO FILL IN 4390 02:28:43,542 --> 02:28:44,743 EXPERT GAPS IN THE REVIEW OF 4391 02:28:44,743 --> 02:28:47,813 CERTAIN PROTOCOLS AND DATA 4392 02:28:47,813 --> 02:28:49,448 PRIVACY AND AI WERE SPECIFICALLY 4393 02:28:49,448 --> 02:28:51,416 NOTED IN SOME OF THE INTERVIEWS 4394 02:28:51,416 --> 02:28:53,485 WE CONDUCTED WITH IRB MEMBERS 4395 02:28:53,485 --> 02:28:54,686 ACROSS THE COUNTRY ON THIS ISSUE 4396 02:28:54,686 --> 02:29:02,461 OF EXPERTISE AND MEMBERSHIP SHIP 4397 02:29:02,461 --> 02:29:04,763 EVE DISCUSSED THE TIME IR B'S 4398 02:29:04,763 --> 02:29:07,165 FACE WHEN REVIEWING RESEARCH BUT 4399 02:29:07,165 --> 02:29:10,368 WHAT ABOUT IRB'S OWN USE OF LLM? 4400 02:29:10,368 --> 02:29:11,570 I'VE BEEN REALLY INTERESTED IN 4401 02:29:11,570 --> 02:29:13,872 GROWING MOVEMENTS TOWARDS AND 4402 02:29:13,872 --> 02:29:15,407 TECHNOLOGICAL DEVELOPMENTS OF 4403 02:29:15,407 --> 02:29:16,608 AUTOMATED DECISION SUPPORT 4404 02:29:16,608 --> 02:29:18,376 SYSTEMS FOR ETHICS GOVERNANCE 4405 02:29:18,376 --> 02:29:20,445 AND I HAVE NAMELY LOOKED AND 4406 02:29:20,445 --> 02:29:21,646 RESEARCHED THIS IN THE CONTEXT 4407 02:29:21,646 --> 02:29:24,816 OF DATA ACCESS MANAGEMENT, BUT 4408 02:29:24,816 --> 02:29:26,685 THERE MIGHT BE CONCEIVABLE 4409 02:29:26,685 --> 02:29:32,724 APPLICATIONS OF LLM'S TO IRB 4410 02:29:32,724 --> 02:29:32,958 REVIEW. 4411 02:29:32,958 --> 02:29:36,762 SO COULD LLM'S BE USED TO MAYBE 4412 02:29:36,762 --> 02:29:41,900 SYN THINK SYNTHESIZE -- WITH 4413 02:29:41,900 --> 02:29:44,202 PRIOR PROTOCOLS TO ENSURE IRB 4414 02:29:44,202 --> 02:29:47,272 PRECEDENT AND COULD WE THEN 4415 02:29:47,272 --> 02:29:48,807 AUDIT IRB DECISIONS AND 4416 02:29:48,807 --> 02:29:50,108 HIGHLIGHT, YOU KNOW, ELEMENTS 4417 02:29:50,108 --> 02:29:51,877 THAT RATE WITHIN PROTOCOLS THAT 4418 02:29:51,877 --> 02:29:53,278 RAISE ETHICAL ISSUES TO ENSURE 4419 02:29:53,278 --> 02:29:55,881 THAT THOSE ARE BEING DECIDED ON 4420 02:29:55,881 --> 02:29:59,785 IN A CONSISTENT MANNER? 4421 02:29:59,785 --> 02:30:01,853 AS WE MENTIONED, LLM'S ARE 4422 02:30:01,853 --> 02:30:03,588 REALLY GREAT AT SCREENING AND 4423 02:30:03,588 --> 02:30:04,923 SYNTHESIZING, COULD THEY SCREEN 4424 02:30:04,923 --> 02:30:06,658 DOCUMENTS FOR READABILITY AND 4425 02:30:06,658 --> 02:30:08,093 COMPREHENSION AND POTENTIALLY 4426 02:30:08,093 --> 02:30:09,728 SIMULATE PARTICIPANT PERCEPTIONS 4427 02:30:09,728 --> 02:30:14,833 OF A STUDY AS A POINT OF 4428 02:30:14,833 --> 02:30:18,036 COMMUNITY MEMBERSHIP OR 4429 02:30:18,036 --> 02:30:19,538 COMMUNITY REVIEW, SO SOMETHING 4430 02:30:19,538 --> 02:30:21,106 TO CONSIDER IN TERMS OF AN 4431 02:30:21,106 --> 02:30:25,343 EMERGENT APPLICATION THERE MUCH 4432 02:30:25,343 --> 02:30:26,878 THE LAST PIECE WE'LL TALK ABOUT 4433 02:30:26,878 --> 02:30:28,313 IS DISSEMINATION AND DATA 4434 02:30:28,313 --> 02:30:29,948 SHARING, SO REALLY DATA SHARING 4435 02:30:29,948 --> 02:30:34,052 I SPEND A LOT OF MY ACADEMIC 4436 02:30:34,052 --> 02:30:36,788 RESEARCH TIME ON HOW WE MORE 4437 02:30:36,788 --> 02:30:39,090 WIDELY AND SECURELY SHARE DATA 4438 02:30:39,090 --> 02:30:41,159 AND IT'S NO SURPRISE THAT IT'S A 4439 02:30:41,159 --> 02:30:42,694 CORNERSTONE OF REALLY PROMOTING 4440 02:30:42,694 --> 02:30:44,229 RIGOROUS BIOMEDICAL RESEARCH AND 4441 02:30:44,229 --> 02:30:46,965 IT ENABLES BROADER POPULATION 4442 02:30:46,965 --> 02:30:50,068 INCLUSIVITY, REDUCES WASTE, CAN 4443 02:30:50,068 --> 02:30:52,237 AVOID DUPLICATION AND HELPS 4444 02:30:52,237 --> 02:30:54,105 FOSTER RICH SCIENTIFIC EXCHANGE. 4445 02:30:54,105 --> 02:30:55,740 SO FOR ALL THESE REASONS AND 4446 02:30:55,740 --> 02:30:58,210 MORE, THE NIH AND OTHER RESEARCH 4447 02:30:58,210 --> 02:31:00,011 AGENCIES LIKE IT MAKE DATA 4448 02:31:00,011 --> 02:31:03,849 SHARING A CONDITION OF RESEARCH 4449 02:31:03,849 --> 02:31:04,082 FUNDING. 4450 02:31:04,082 --> 02:31:06,484 SO THESE ARE JUST SOME EXAMPLES 4451 02:31:06,484 --> 02:31:08,153 OF RESEARCH FUNDERS, LARGE 4452 02:31:08,153 --> 02:31:09,354 RESEARCH FUNDERS AROUND THE 4453 02:31:09,354 --> 02:31:12,424 WORLD THAT HAVE, YOU KNOW, 4454 02:31:12,424 --> 02:31:14,492 EXPLICIT RULES AND POLICIES 4455 02:31:14,492 --> 02:31:16,895 AROUND SHARING DATA THAT STEM 4456 02:31:16,895 --> 02:31:21,833 FROM PROJECTS WITH FUNDING. 4457 02:31:21,833 --> 02:31:25,871 S ENTS RECENTLY THE WHITEHOUSE 4458 02:31:25,871 --> 02:31:26,538 OFFICE OF SCIENCE AND TECHNOLOGY 4459 02:31:26,538 --> 02:31:27,839 POLICY ANNOUNCED IT WOULD 4460 02:31:27,839 --> 02:31:30,041 MANDATE SHARING OF SCIENTIFIC 4461 02:31:30,041 --> 02:31:34,012 DATA STEMMING FROM FEDERALLY 4462 02:31:34,012 --> 02:31:35,547 FUNDED RESEARCH THAT IS OF 4463 02:31:35,547 --> 02:31:36,514 SUFFICIENT QUALITY TO VALIDATE 4464 02:31:36,514 --> 02:31:37,849 AND REPLICATE THE FINDINGS AND 4465 02:31:37,849 --> 02:31:39,284 TO MAKE THEM AVAILABLE TO THE 4466 02:31:39,284 --> 02:31:41,586 PUBLIC BY DEFAULT AT LEAST UPON 4467 02:31:41,586 --> 02:31:43,054 PUBLICATION. 4468 02:31:43,054 --> 02:31:47,559 SO MY COLLEAGUE KATE SPECTOR AT 4469 02:31:47,559 --> 02:31:48,560 THE UNIVERSITY OF MICHIGAN WROTE 4470 02:31:48,560 --> 02:31:50,996 IN A PIECE ELOQUENTLY ABOUT THE 4471 02:31:50,996 --> 02:31:52,530 IMPLICATIONS OF GENERATIVE AI 4472 02:31:52,530 --> 02:31:54,165 FOR THINGS LIKE DATA INTEGRITY, 4473 02:31:54,165 --> 02:31:55,700 THAT DATA SHARING AND THE 4474 02:31:55,700 --> 02:31:57,435 INTEGRITY OF THAT DATA AGAIN IS 4475 02:31:57,435 --> 02:31:59,905 REALLY THE BACKBONE OF THE 4476 02:31:59,905 --> 02:32:02,374 MEDICAL AND SCIENTIFIC RESEARCH 4477 02:32:02,374 --> 02:32:04,309 ENTERPRISE BUT WE'VE STRUGGLED 4478 02:32:04,309 --> 02:32:06,077 TO ENFORCE AND ENSURE STANDARDS 4479 02:32:06,077 --> 02:32:09,381 FOR THINGS LIKE VALIDITY, 4480 02:32:09,381 --> 02:32:12,217 REPRODUCIBILITY, TRANSPARENCY 4481 02:32:12,217 --> 02:32:15,820 AND REPLICABILITY AS IT IS. 4482 02:32:15,820 --> 02:32:18,323 SO I THINK THIS REALLY, YOU 4483 02:32:18,323 --> 02:32:20,892 KNOW, RAZORS AGAIN HOW SYNTHETIC 4484 02:32:20,892 --> 02:32:22,894 DATASETS GENERATED BY LLM'S CAN 4485 02:32:22,894 --> 02:32:25,864 BE SHARED AND COULD THEY EVER BE 4486 02:32:25,864 --> 02:32:28,934 SUFFICIENT QUALITY TO ENABLE 4487 02:32:28,934 --> 02:32:30,435 REPLICABILITY AS REQUIRED UNDER 4488 02:32:30,435 --> 02:32:32,904 THE NEW REGS. 4489 02:32:32,904 --> 02:32:34,539 AND I THINK I WOULD BE REMISS IF 4490 02:32:34,539 --> 02:32:36,608 I DIDN'T ALSO DRAW ATTENTION TO 4491 02:32:36,608 --> 02:32:40,078 A REALLY RECENT EXECUTIVE ORDER 4492 02:32:40,078 --> 02:32:42,514 THAT WAS RECENTLY RELEASED BY 4493 02:32:42,514 --> 02:32:44,049 PRESIDENT BIDEN ON SAFE, SECURE 4494 02:32:44,049 --> 02:32:45,583 AND TRUSTWORTHY AI. 4495 02:32:45,583 --> 02:32:47,018 SO WHILE NOT SPECIFIC TO DATA 4496 02:32:47,018 --> 02:32:48,420 SHARING PER SE, I WANTED TO TAKE 4497 02:32:48,420 --> 02:32:52,357 A MOMENT TO REVIEW THIS REALLY 4498 02:32:52,357 --> 02:32:53,692 SIGNIFICANT EVENT THAT HAPPENED 4499 02:32:53,692 --> 02:32:57,762 JUST TWO DAYS AGO AND HIGHLIGHT 4500 02:32:57,762 --> 02:33:01,566 SOME OF THE NEW STANDARDS THAT 4501 02:33:01,566 --> 02:33:03,535 WILL BE COMING DOWN THE 4502 02:33:03,535 --> 02:33:04,402 PIPELINE. 4503 02:33:04,402 --> 02:33:07,372 PRESIDENT BIDEN IS INVOKING THE 4504 02:33:07,372 --> 02:33:08,773 DEFENSE PRODUCTION ACT TO DO 4505 02:33:08,773 --> 02:33:09,808 KIND OF ALL OF THE FOLLOWING 4506 02:33:09,808 --> 02:33:11,409 THAT'S LISTED ON THIS SLIDE, AND 4507 02:33:11,409 --> 02:33:14,245 I'LL HIGHLIGHT JUST ONE BEFORE 4508 02:33:14,245 --> 02:33:16,348 WE GO TO QUESTIONS AND 4509 02:33:16,348 --> 02:33:17,649 DISCUSSION THAT I THINK WILL BE 4510 02:33:17,649 --> 02:33:18,616 OF PARTICULAR RELEVANCE TO 4511 02:33:18,616 --> 02:33:19,651 RESEARCHERS AND USERS OF 4512 02:33:19,651 --> 02:33:21,486 COMMERCIAL LLM'S, AND THAT'S 4513 02:33:21,486 --> 02:33:24,089 UNDER THE SUPPORT FOR CONSUMERS, 4514 02:33:24,089 --> 02:33:24,856 PATIENTS AND STUDENTS. 4515 02:33:24,856 --> 02:33:27,292 SO THE ORDER WILL COMPEL 4516 02:33:27,292 --> 02:33:30,228 COMPANIES AND DEVELOPERS TO TAG 4517 02:33:30,228 --> 02:33:31,529 AI-SUPPORTED OR GENERATED 4518 02:33:31,529 --> 02:33:33,832 CONTENT AND TO MAKE THAT CONTENT 4519 02:33:33,832 --> 02:33:36,234 TRANSPARENT TO USERS. 4520 02:33:36,234 --> 02:33:38,103 SO I THINK THAT'S OF PARTICULAR 4521 02:33:38,103 --> 02:33:40,739 RELEVANCE WHEN RESEARCHERS ARE 4522 02:33:40,739 --> 02:33:43,375 USING DIFFERENT TYPES OF LLM'S 4523 02:33:43,375 --> 02:33:46,978 ACROSS THE RESEARCH PROCESS. 4524 02:33:46,978 --> 02:33:48,279 SO I'M GOING TO LEAVE IT THERE 4525 02:33:48,279 --> 02:33:49,581 AND PERHAPS IN THE TIME WE HAVE 4526 02:33:49,581 --> 02:33:53,551 FOR DISCUSSIONS, WE'LL SHOW A 4527 02:33:53,551 --> 02:33:56,955 LIVE DEMONSTRATION OF -- THAT 4528 02:33:56,955 --> 02:33:58,056 HIGHLIGHTS HOW SOME OF THESE 4529 02:33:58,056 --> 02:34:01,092 TOPICS WE'VE TALKED ABOUT MIGHT 4530 02:34:01,092 --> 02:34:03,294 BE USED BY USING CHATGPT. 4531 02:34:03,294 --> 02:34:10,268 SO I'LL STOP SHARING NOW. 4532 02:34:10,268 --> 02:34:11,469 AND OPEN IT UP FOR QUESTIONS. 4533 02:34:11,469 --> 02:34:14,973 >> THANKS, VASO, BIG ROUND OF 4534 02:34:14,973 --> 02:34:15,974 APPLAUSE FROM YOUR EIGHT OR NINE 4535 02:34:15,974 --> 02:34:19,811 OF US WHO ARE IN PERSON. 4536 02:34:19,811 --> 02:34:25,383 WE HAVE THOSE IN PERSON WHO HAVE 4537 02:34:25,383 --> 02:34:26,418 MICS THAT THEY CAN ASK QUESTIONS 4538 02:34:26,418 --> 02:34:27,685 AND THEN I ALSO HAVE SOME 4539 02:34:27,685 --> 02:34:29,521 QUESTIONS FROM OUR VIRTUAL 4540 02:34:29,521 --> 02:34:31,189 AUDIENCE, BUT JASMINE IS AT THE 4541 02:34:31,189 --> 02:34:33,024 MIC AND SHE'S GOING TO ASK HER 4542 02:34:33,024 --> 02:34:33,525 FIRST QUESTION. 4543 02:34:33,525 --> 02:34:34,192 >> HI. 4544 02:34:34,192 --> 02:34:36,327 >> HI, JAZZ ZION THANKS FOR 4545 02:34:36,327 --> 02:34:36,761 THIS. 4546 02:34:36,761 --> 02:34:40,899 SO I THOUGHT THIS SYNTHETIC DATA 4547 02:34:40,899 --> 02:34:42,434 BIT THAT YOU WERE TALKING ABOUT 4548 02:34:42,434 --> 02:34:44,636 WAS REALLY FASCINATING. 4549 02:34:44,636 --> 02:34:47,572 AND I WAS HOPING YOU COULD TALK 4550 02:34:47,572 --> 02:34:51,743 A LITTLE BIT MORE ABOUT THAT. 4551 02:34:51,743 --> 02:34:53,478 SPECIFICALLY, I'M INTERESTED IN 4552 02:34:53,478 --> 02:34:55,113 LIKE SYNTHETIC DATA WAS KIND OF 4553 02:34:55,113 --> 02:34:58,116 A STRIKING NAME, AND FROM A LOT 4554 02:34:58,116 --> 02:34:59,517 OF YOUR DISCUSSION OF IT, IT 4555 02:34:59,517 --> 02:35:00,952 REALLY SOUNDS MORE LIKE IT'S 4556 02:35:00,952 --> 02:35:03,588 LIKE MODELING OR SOMETHING. 4557 02:35:03,588 --> 02:35:05,690 SO I GUESS IN WHAT SENSE DO YOU 4558 02:35:05,690 --> 02:35:10,929 THINK IT REALLY IS DATA, AND DO 4559 02:35:10,929 --> 02:35:13,865 YOU THINK THAT'S LIKE A 4560 02:35:13,865 --> 02:35:15,133 DELIBERATE MISNOMER, OR DO YOU 4561 02:35:15,133 --> 02:35:16,401 THINK IT'S LIKE ACCURATE AND 4562 02:35:16,401 --> 02:35:18,470 FAIR IN SOME WAYS? 4563 02:35:18,470 --> 02:35:19,704 I WOULD LOVE TO HEAR A LITTLE 4564 02:35:19,704 --> 02:35:22,474 BIT MORE ABOUT THAT. 4565 02:35:22,474 --> 02:35:24,175 >> ALL REALLY PRESS AND GO 4566 02:35:24,175 --> 02:35:26,778 RECURRING QUESTIONS THAT I ASK 4567 02:35:26,778 --> 02:35:29,013 MYSELF THE SAME THING, JASMINE. 4568 02:35:29,013 --> 02:35:30,949 I THINK THE SYNTHETIC PART IS A 4569 02:35:30,949 --> 02:35:34,219 BIT OF A MISNOMER BECAUSE IT 4570 02:35:34,219 --> 02:35:35,487 ASSUMES THAT, YOU KNOW, THIS 4571 02:35:35,487 --> 02:35:38,423 DATA HAS NO RELEVANCE TO 4572 02:35:38,423 --> 02:35:40,091 INDIVIDUAL PEOPLE OR COMMUNITIES 4573 02:35:40,091 --> 02:35:42,260 OR PHENOMENON, AND SO I THINK 4574 02:35:42,260 --> 02:35:43,795 FROM THAT RESPECT, YOU KNOW, 4575 02:35:43,795 --> 02:35:47,532 PEOPLE HAVE THIS I THINK 4576 02:35:47,532 --> 02:35:50,602 INCORRECT OR FALSE SENSE OF 4577 02:35:50,602 --> 02:35:55,306 SECURITY THAT IT WILL BE ABLE TO 4578 02:35:55,306 --> 02:35:58,810 CIRCUMVENT ALL OUR PRIVACY AND 4579 02:35:58,810 --> 02:36:02,981 CONFIDENTIALITY ISSUES, WHEN 4580 02:36:02,981 --> 02:36:04,482 THAT'S NOT NECESSARILY THE CASE. 4581 02:36:04,482 --> 02:36:05,850 I DO THINK IT IS DATA AND I 4582 02:36:05,850 --> 02:36:07,819 THINK THIS IS SORT OF A LARGER 4583 02:36:07,819 --> 02:36:08,887 ALMOST PHILOSOPHY OF SCIENCE 4584 02:36:08,887 --> 02:36:10,722 QUESTION ABOUT WHAT IS DATA, BUT 4585 02:36:10,722 --> 02:36:14,492 I THINK, YOU KNOW, DATA THAT ARE 4586 02:36:14,492 --> 02:36:16,361 REPRESENTATIVE OF PHENOMENON, 4587 02:36:16,361 --> 02:36:18,663 THAT'S HOW I BROADLY CONSTRUE 4588 02:36:18,663 --> 02:36:21,266 WHAT DATA ARE, THAT I THINK IT 4589 02:36:21,266 --> 02:36:24,869 IS STILL CONSIDERED DATA, BUT I 4590 02:36:24,869 --> 02:36:31,009 WORRY ABOUT HOW IT -- IT DOES 4591 02:36:31,009 --> 02:36:32,110 INNATELY FALL UNDER THE 4592 02:36:32,110 --> 02:36:33,311 REGULATORY REQUIREMENTS FOR DATA 4593 02:36:33,311 --> 02:36:35,613 AS THEY CURRENTLY EXIST, AND I 4594 02:36:35,613 --> 02:36:39,117 THINK WILL BE USED TO, YOU KNOW, 4595 02:36:39,117 --> 02:36:40,652 CIRCUMVENT ETHICAL OVERSIGHT 4596 02:36:40,652 --> 02:36:43,488 PROCESSES LIKE IRB REVIEW, LIKE 4597 02:36:43,488 --> 02:36:45,890 HIPAA WHEN, YOU KNOW, THERE MAY 4598 02:36:45,890 --> 02:36:48,426 STILL BE THREATS THAT BOTH OF 4599 02:36:48,426 --> 02:36:52,030 THOSE SAFEGUARDS ARE IMPLEMENTED 4600 02:36:52,030 --> 02:36:53,698 TO HELP PROTECT. 4601 02:36:53,698 --> 02:36:57,569 SO THIS IS A REALLY EVOLVING 4602 02:36:57,569 --> 02:36:59,103 QUESTION AND ISSUE AND CERTAINLY 4603 02:36:59,103 --> 02:37:02,807 NOT ONE THAT I THINK IRB'S AND 4604 02:37:02,807 --> 02:37:04,209 TRADITIONAL INSTITUTIONAL ETHICS 4605 02:37:04,209 --> 02:37:05,777 OVERSIGHT BODIES HAVE 4606 02:37:05,777 --> 02:37:07,745 ENCOUNTERED BEFORE. 4607 02:37:07,745 --> 02:37:09,247 >> THANK YOU. 4608 02:37:09,247 --> 02:37:11,482 >> THANKS. 4609 02:37:11,482 --> 02:37:13,851 WE HAVE CHLOE ALSO HERE IN THE 4610 02:37:13,851 --> 02:37:14,152 AUDITORIUM. 4611 02:37:14,152 --> 02:37:15,486 >> I ALSO HAVE A CLARIFYING 4612 02:37:15,486 --> 02:37:17,255 QUESTION ON THE SYNTHETIC DATA. 4613 02:37:17,255 --> 02:37:18,489 I THOUGHT IT WAS REALLY 4614 02:37:18,489 --> 02:37:20,992 INTERESTING HEARING YOUR 4615 02:37:20,992 --> 02:37:21,292 PERSPECTIVE. 4616 02:37:21,292 --> 02:37:23,628 BUT I DON'T REALLY SEE HOW IT'S 4617 02:37:23,628 --> 02:37:24,829 THAT NOVEL BECAUSE TO ME, IT 4618 02:37:24,829 --> 02:37:27,599 SEEMS LIKE THE SAME THING IS 4619 02:37:27,599 --> 02:37:29,901 BOOTSTRAPPING AND LIKE IS 4620 02:37:29,901 --> 02:37:31,669 THERE -- ARE THERE MORE AVENUES 4621 02:37:31,669 --> 02:37:33,171 FOR SYSTEMATIC BIAS TO CREEP IN 4622 02:37:33,171 --> 02:37:34,806 THAT WE CAN'T DETECT RS OR IS IT 4623 02:37:34,806 --> 02:37:36,908 KIND OF THE SAME AS 4624 02:37:36,908 --> 02:37:38,009 BOOTSTRAPPING WHERE AS LONG AS 4625 02:37:38,009 --> 02:37:39,110 THE INITIAL SAMPLE IS ALL RIGHT, 4626 02:37:39,110 --> 02:37:40,278 THERE'S NOT REALLY THAT MANY 4627 02:37:40,278 --> 02:37:43,915 AVENUES FOR MORE BIAS? 4628 02:37:43,915 --> 02:37:47,185 >> I THINK IT'S I'VE GREAT 4629 02:37:47,185 --> 02:37:47,952 OBSERVATION, AND THE ONE WAY 4630 02:37:47,952 --> 02:37:51,356 THAT I THINK IT COULD BE 4631 02:37:51,356 --> 02:37:53,758 DIFFERENT IS THERE'S SOME 4632 02:37:53,758 --> 02:37:56,394 SCHOLARS WHO ARE TALKING ABOUT 4633 02:37:56,394 --> 02:37:59,130 THE POSSIBILITY OF THERE BEING A 4634 02:37:59,130 --> 02:38:01,299 SYNTHETIC DATA COLLAPSE, SO AT 4635 02:38:01,299 --> 02:38:03,801 SOME POINT IN THE LEARNING 4636 02:38:03,801 --> 02:38:05,303 PROCESS, YOU ARE FEEDING, YOU 4637 02:38:05,303 --> 02:38:07,305 KNOW, NEW INPUTS, YOU'RE 4638 02:38:07,305 --> 02:38:09,173 GENERATING BETTER REFINED 4639 02:38:09,173 --> 02:38:11,909 OUTPUTS, BUT IF THOSE INPUTS ARE 4640 02:38:11,909 --> 02:38:14,646 FROM AI-GENERATED CONTENT 4641 02:38:14,646 --> 02:38:15,847 ITSELF, YOU CAN IMAGINE THIS 4642 02:38:15,847 --> 02:38:19,917 KIND OF CIRCUITOUS LOOP OF 4643 02:38:19,917 --> 02:38:20,918 AI-GENERATED CONTENT BEING FED 4644 02:38:20,918 --> 02:38:23,621 IN AND AI-GENERATED CONTENT 4645 02:38:23,621 --> 02:38:26,257 BEING FED OUT AND ALTHOUGH SOME 4646 02:38:26,257 --> 02:38:29,527 POINT IT WILL CREATE A 4647 02:38:29,527 --> 02:38:30,728 COLLAPSE -- AND AT SOME POINT IT 4648 02:38:30,728 --> 02:38:32,497 WILL CREATE A COLLAPSE OF THE 4649 02:38:32,497 --> 02:38:33,464 WHOLE MODEL AND THE WHOLE 4650 02:38:33,464 --> 02:38:35,366 SYSTEM, SO I THINK IN THIS THAT 4651 02:38:35,366 --> 02:38:36,668 WAY THIS PHENOMENON OF COLLAPSE 4652 02:38:36,668 --> 02:38:38,636 IS DIFFERENT THAN BOOTSTRAPPING 4653 02:38:38,636 --> 02:38:40,605 AND I THINK POSES A GREATER 4654 02:38:40,605 --> 02:38:43,875 THREAT TO, YOU KNOW, RIGOR AND 4655 02:38:43,875 --> 02:38:44,976 REPRODUCIBILITY THAT 4656 02:38:44,976 --> 02:38:46,844 BOOTSTRAPPING CAN ACTUALLY, 4657 02:38:46,844 --> 02:38:48,913 BECAUSE IT'S HUMAN SUPERVISED 4658 02:38:48,913 --> 02:38:52,083 AND OVERSEEN, THAT IT CAN 4659 02:38:52,083 --> 02:38:53,951 OVERCOME BETTER THAN SYNTHETIC 4660 02:38:53,951 --> 02:38:54,285 DATA. 4661 02:38:54,285 --> 02:38:57,221 SO I THINK IN ONE WAY, THAT'S 4662 02:38:57,221 --> 02:39:00,224 ONE ASPECT, I THINK IT'S A 4663 02:39:00,224 --> 02:39:00,825 LITTLE BIT DIFFERENT. 4664 02:39:00,825 --> 02:39:03,661 BUT YOU'RE RIGHT TO SAY THAT 4665 02:39:03,661 --> 02:39:05,630 COMPUTATIONALLY THIS IS A 4666 02:39:05,630 --> 02:39:09,267 SIMILAR IDEA, BUT THAT BECAUSE 4667 02:39:09,267 --> 02:39:13,538 THERE'S LESS HUMAN INTERVENTION, 4668 02:39:13,538 --> 02:39:16,174 THIS COLLAPSE SPROB A REAL 4669 02:39:16,174 --> 02:39:16,941 ISSUE. 4670 02:39:16,941 --> 02:39:18,376 -- COLLAPSE PROBLEM IS A REAL 4671 02:39:18,376 --> 02:39:18,576 ISSUE. 4672 02:39:18,576 --> 02:39:19,677 >> THANK YOU. 4673 02:39:19,677 --> 02:39:20,978 SYNTHETIC TOUCHED A LOT OF 4674 02:39:20,978 --> 02:39:22,080 NERVES, I GUESS, SO WE HAVE A 4675 02:39:22,080 --> 02:39:23,715 QUESTION FROM LAURA HERE. 4676 02:39:23,715 --> 02:39:25,683 YOU MENTIONED SYNTHETIC DATA CAN 4677 02:39:25,683 --> 02:39:28,419 BE USED TO CONTROL FOR BIASES. 4678 02:39:28,419 --> 02:39:29,620 CONSIDERING, HOWEVER, THAT A LOT 4679 02:39:29,620 --> 02:39:32,156 OF REAL WORLD DATA CAN BE SKEWED 4680 02:39:32,156 --> 02:39:33,891 TOWARDS WHITE SUBJECTS, FOR 4681 02:39:33,891 --> 02:39:37,395 EXAMPLE, STLINLT A RISK OF EX-S 4682 02:39:37,395 --> 02:39:39,497 A -- STLINT A RISK OF EX--- 4683 02:39:39,497 --> 02:39:44,435 ISN'T THERE A RISK OF EXACERBATE 4684 02:39:44,435 --> 02:39:44,635 ING -- 4685 02:39:44,635 --> 02:39:46,270 >> I THINK EXACERBATION COMES 4686 02:39:46,270 --> 02:39:48,072 FROM RESEARCHERS AND THOSE 4687 02:39:48,072 --> 02:39:49,674 CONDUCTING THE RESEARCH TO NOT 4688 02:39:49,674 --> 02:39:53,978 THINK THAT REPRESENTATION IS A 4689 02:39:53,978 --> 02:39:56,681 HALLMARK OF RIGOROUS RESEARCH. 4690 02:39:56,681 --> 02:39:58,783 SO I THINK, YOU KNOW, WHAT 4691 02:39:58,783 --> 02:40:01,753 SYNTHETIC DATA TRIES TO DO IS IT 4692 02:40:01,753 --> 02:40:03,721 ACKNOWLEDGES THOSE MISSING DATA 4693 02:40:03,721 --> 02:40:06,791 OR UNDERREPRESENTATIONS AT THE 4694 02:40:06,791 --> 02:40:09,861 FIRST INSTANCE AND TRIES TO 4695 02:40:09,861 --> 02:40:12,230 MITIGATE BY OVERSAMPLING OR BY, 4696 02:40:12,230 --> 02:40:16,567 YOU KNOW, FITTING THE DATA WITH 4697 02:40:16,567 --> 02:40:19,504 MORE DIVERSE DATA POINTS. 4698 02:40:19,504 --> 02:40:22,573 SO I THINK THERE'S CERTAINLY AN 4699 02:40:22,573 --> 02:40:24,876 OPPORTUNITY FOR BIAS TO BE 4700 02:40:24,876 --> 02:40:26,878 EXACERBATED WHEN DIVERSITY ISN'T 4701 02:40:26,878 --> 02:40:29,580 A PRIORITY AMONG RESEARCHERS AND 4702 02:40:29,580 --> 02:40:33,317 THOSE WHO, YOU KNOW, ARE 4703 02:40:33,317 --> 02:40:36,154 COMMITTED TO CONVENIENCE 4704 02:40:36,154 --> 02:40:39,524 SAMPLING AND FITTING DATA THAT 4705 02:40:39,524 --> 02:40:41,826 WILL EVENTUALLY COME TO THE 4706 02:40:41,826 --> 02:40:44,228 ANSWER THAT RESEARCHERS WANT. 4707 02:40:44,228 --> 02:40:47,298 SO I THINK THE SAME ISSUE OF 4708 02:40:47,298 --> 02:40:49,367 OVERFITTING AND NOT RECOGNIZING 4709 02:40:49,367 --> 02:40:51,836 THE IMPORTANCE OF DIVERSITY IN 4710 02:40:51,836 --> 02:40:53,438 THE DATASET STILL REMAINS, 4711 02:40:53,438 --> 02:40:55,306 WHETHER YOU USE SYNTHETIC DATA 4712 02:40:55,306 --> 02:40:56,941 OR REAL WORLD DATA. 4713 02:40:56,941 --> 02:41:02,180 SO IT'S ABSOLUTELY AN IMPORTANT 4714 02:41:02,180 --> 02:41:02,380 POINT. 4715 02:41:02,380 --> 02:41:02,980 >> GREAT. 4716 02:41:02,980 --> 02:41:04,949 A COUPLE OTHER QUESTIONS FROM 4717 02:41:04,949 --> 02:41:06,350 OUR VIRTUAL AUDIENCE. 4718 02:41:06,350 --> 02:41:08,085 SO ONE, THEY'RE BOTH A LITTLE 4719 02:41:08,085 --> 02:41:11,155 MORE, I'LL CALL THEM A LITTLE 4720 02:41:11,155 --> 02:41:13,691 MORE PHILOSOPHICAL, AND I KNOW 4721 02:41:13,691 --> 02:41:14,759 YOU'RE UP FOR THAT. 4722 02:41:14,759 --> 02:41:17,495 THE FIRST ONE IS, IN TERMS OF 4723 02:41:17,495 --> 02:41:19,864 ORIGINALITY AND GENERATIVE AI, 4724 02:41:19,864 --> 02:41:22,767 MOST OF THE TIMES I FIND AI 4725 02:41:22,767 --> 02:41:24,602 IDEAS, QUOTE, UNQUOTE, TO BE 4726 02:41:24,602 --> 02:41:25,837 PREDICTABLE AND SOMETIMES 4727 02:41:25,837 --> 02:41:28,439 INFERIOR TO HUMAN-GENERATED 4728 02:41:28,439 --> 02:41:30,007 IDEAS, UNLESS THE HUMAN IS 4729 02:41:30,007 --> 02:41:31,542 OVERWORKED AND OVERSTRESSED. 4730 02:41:31,542 --> 02:41:33,578 IN A WORLD WHERE AI IS USED 4731 02:41:33,578 --> 02:41:36,647 OFTEN TO ACCELERATE OUTPUT, 4732 02:41:36,647 --> 02:41:37,949 BURNOUT MIGHT BE MORE LIKELY TO 4733 02:41:37,949 --> 02:41:40,585 OCCUR, THUS POTENTIALLY INCREASE 4734 02:41:40,585 --> 02:41:42,920 BEING OUR DEPENDENCY ON AI. 4735 02:41:42,920 --> 02:41:46,724 ARE WE POTENTIALLY CREATING A 4736 02:41:46,724 --> 02:41:47,825 POSITIVE FEEDBACK LOOP THAT 4737 02:41:47,825 --> 02:41:49,260 MAKES US MORE DEPENDENT? 4738 02:41:49,260 --> 02:41:51,329 >> IT'S ALMOST LUNCHTIME. 4739 02:41:51,329 --> 02:41:53,097 >> YES, I KNOW, EXACTLY RIGHT. 4740 02:41:53,097 --> 02:41:54,732 A FEEDBACK LOOP THAT MAKES US 4741 02:41:54,732 --> 02:41:58,970 MORE DEPENDENT ON AI. 4742 02:41:58,970 --> 02:42:03,841 >> IT IS A PHILOSOPHICAL 4743 02:42:03,841 --> 02:42:06,878 QUESTION ABOUT THE NATURE OF 4744 02:42:06,878 --> 02:42:09,313 LABOR, I THINK VERCH A TYPE OF 4745 02:42:09,313 --> 02:42:10,948 LABOR -- VERCH A TYPE OF 4746 02:42:10,948 --> 02:42:12,717 LABOR -- RESEARCH IS A TYPE OF 4747 02:42:12,717 --> 02:42:13,885 LABOR, INTELLECTUAL LABOR, AND 4748 02:42:13,885 --> 02:42:17,522 OUR DEMAND FOR AI IS EXACTLY 4749 02:42:17,522 --> 02:42:18,923 REPRESENTATIVE OF THE NEEDS WE 4750 02:42:18,923 --> 02:42:22,927 SEE IN OUR EVERYDAY LIFEMENT SO, 4751 02:42:22,927 --> 02:42:25,062 YOU KNOW, THE THREAT OF BURNOUT, 4752 02:42:25,062 --> 02:42:27,798 THE THREAT OF INCENTIVES THAT 4753 02:42:27,798 --> 02:42:29,300 INSTITUTIONS AND RESEARCH 4754 02:42:29,300 --> 02:42:30,635 STRUCTURES, YOU KNOW, IMPOSE ON 4755 02:42:30,635 --> 02:42:34,338 THOSE OF US TO CONTINUOUSLY 4756 02:42:34,338 --> 02:42:36,874 INNOVATE, TO COME UP WITH NOVEL 4757 02:42:36,874 --> 02:42:39,944 RESEARCH IDEAS, THAT'S I THINK 4758 02:42:39,944 --> 02:42:42,246 WHAT DRIVES PEOPLE OR 4759 02:42:42,246 --> 02:42:44,348 INCENTIVIZES PEOPLE TO LOOK FOR 4760 02:42:44,348 --> 02:42:47,285 WAYS TO IMPROVE EFFICIENCY AND 4761 02:42:47,285 --> 02:42:50,121 TO GENERATE THESE PRODUCTS THAT 4762 02:42:50,121 --> 02:42:51,656 WE'RE OBVIOUSLY REWARDED BY, 4763 02:42:51,656 --> 02:42:52,957 THING LIKE PUBLICATION, 4764 02:42:52,957 --> 02:42:54,225 PROMOTION, ET CETERA. 4765 02:42:54,225 --> 02:42:57,094 SO I ABSOLUTELY THINK THAT 4766 02:42:57,094 --> 02:42:58,396 CONSIDERING RESEARCH AS A TYPE 4767 02:42:58,396 --> 02:43:03,868 OF HUMAN LABOR, WHICH AI CAN 4768 02:43:03,868 --> 02:43:06,070 HELP OVERCOME, YOU KNOW, 4769 02:43:06,070 --> 02:43:07,371 RATE-LIMITING STEPS AND THE 4770 02:43:07,371 --> 02:43:10,841 REASONS FOR WHY WE INTEGRATE AI 4771 02:43:10,841 --> 02:43:13,177 INTO DIFFERENT WORKFLOWS IS A 4772 02:43:13,177 --> 02:43:16,180 DIRECT COMMENTARY ON AREAS OF, 4773 02:43:16,180 --> 02:43:18,516 YOU KNOW, OUR CURRENT LABOR THAT 4774 02:43:18,516 --> 02:43:22,153 WE WEREN'T ABLE TO MEET OR WE 4775 02:43:22,153 --> 02:43:23,688 STRUGGLE TO MEET. 4776 02:43:23,688 --> 02:43:26,958 AND THOSE ARE ENVIRONMENTAL AND 4777 02:43:26,958 --> 02:43:28,926 SOCIAL CONDITIONS, IN MY 4778 02:43:28,926 --> 02:43:29,360 PERSPECTIVE. 4779 02:43:29,360 --> 02:43:31,128 BUT IT'S FOR SURE I THINK 4780 02:43:31,128 --> 02:43:32,763 REMINISCENT OF THIS LARGER 4781 02:43:32,763 --> 02:43:33,631 PHILOSOPHICAL QUESTION ABOUT 4782 02:43:33,631 --> 02:43:37,034 WHAT IS LABOR, HUMAN LABOR, AND 4783 02:43:37,034 --> 02:43:42,940 HOW CAN AI SUPPORT SOME OF THE 4784 02:43:42,940 --> 02:43:44,675 REDUNDANCIES IN HUMAN LABOR 4785 02:43:44,675 --> 02:43:46,143 WHILE FREEING UP THE MIND TO 4786 02:43:46,143 --> 02:43:47,411 DO -- THE HUMAN MIND WHAT IT 4787 02:43:47,411 --> 02:43:49,180 DOES BEST, WHICH I THINK IS 4788 02:43:49,180 --> 02:43:53,517 INNOVATE AND CREATE AND BE NOSM. 4789 02:43:53,517 --> 02:43:55,519 BUT I LOVE THE QUESTION -- AND 4790 02:43:55,519 --> 02:43:56,387 BE NOVEL. 4791 02:43:56,387 --> 02:43:58,255 BUT I LOVE THE QUESTION, AND I 4792 02:43:58,255 --> 02:44:00,424 WOULD WELCOME ANY TYPE OF 4793 02:44:00,424 --> 02:44:02,526 COLLABORATION THAT HELPS TO 4794 02:44:02,526 --> 02:44:04,528 EXPLORE IT A LITTLE BIT FURTHER. 4795 02:44:04,528 --> 02:44:06,330 >> MORE FOOD FOR THOUGHT IN THAT 4796 02:44:06,330 --> 02:44:06,764 CASE. 4797 02:44:06,764 --> 02:44:08,466 >> MORE FOOD FOR THOUGHT. 4798 02:44:08,466 --> 02:44:09,266 >> OKAY. 4799 02:44:09,266 --> 02:44:11,802 SO WE'LL TAKE THIS ONE LAST 4800 02:44:11,802 --> 02:44:12,069 QUESTION. 4801 02:44:12,069 --> 02:44:13,537 COULD YOU TALK -- THIS IS FROM 4802 02:44:13,537 --> 02:44:13,771 MICHAEL. 4803 02:44:13,771 --> 02:44:15,539 COULD YOU TALK A BIT MORE ABOUT 4804 02:44:15,539 --> 02:44:17,274 THE SUBJECT OF ORIGINALITY IN 4805 02:44:17,274 --> 02:44:20,778 REGARDS TO AI AND HUMAN RESEARCH 4806 02:44:20,778 --> 02:44:22,213 PROCESS GENERATION -- RESEARCH 4807 02:44:22,213 --> 02:44:23,147 PROCESS GENERATION? 4808 02:44:23,147 --> 02:44:26,250 IF THE LLM'S ARE AT THE MOMENT 4809 02:44:26,250 --> 02:44:27,885 PARROTING, QUOTE, UNQUOTE, 4810 02:44:27,885 --> 02:44:29,220 EXISTING INFORMATION, HOW COULD 4811 02:44:29,220 --> 02:44:33,591 IT GENERATE NEW RESEARCH 4812 02:44:33,591 --> 02:44:33,858 QUESTIONS? 4813 02:44:33,858 --> 02:44:37,795 YEAH, THIS IS THE EXACT 4814 02:44:37,795 --> 02:44:40,097 QUESTION I ASK MYSELF, AND EVEN 4815 02:44:40,097 --> 02:44:44,335 STEPPING BACK, IS ORIGINALITY A 4816 02:44:44,335 --> 02:44:45,670 NOVELTY NECESSARY IN THE 4817 02:44:45,670 --> 02:44:47,304 RESEARCH PROCESS? 4818 02:44:47,304 --> 02:44:49,607 AND SO I THINK TO THE EXTENT 4819 02:44:49,607 --> 02:44:54,178 THAT YOU PROMPT LLM'S TO, YOU 4820 02:44:54,178 --> 02:44:56,714 KNOW, SUMMATE INFORMATION OR 4821 02:44:56,714 --> 02:44:57,782 SYNTHESIZE INFORMATION, YOU 4822 02:44:57,782 --> 02:44:59,016 KNOW, THERE ARE DIFFERENT TASKS 4823 02:44:59,016 --> 02:45:02,620 YOU CAN POSE LLM'S TO DO. 4824 02:45:02,620 --> 02:45:05,022 SO I THINK IN A CERTAIN CONTEXT, 4825 02:45:05,022 --> 02:45:09,727 YOU COULD HAVE AN LLM, YOU KNOW, 4826 02:45:09,727 --> 02:45:13,230 SUMMARIZE AN ENTIRE FIELD OF 4827 02:45:13,230 --> 02:45:16,634 RESEARCH, AND THAT SUMMARY HELPS 4828 02:45:16,634 --> 02:45:18,803 YOU, AS I SAID, IDENTIFY CERTAIN 4829 02:45:18,803 --> 02:45:21,338 GAPS THAT ARE RELEVANT OR WITHIN 4830 02:45:21,338 --> 02:45:22,740 YOUR OWN RESEARCH CONTEXT BE 4831 02:45:22,740 --> 02:45:26,911 ABLE TO APPLY THAT SYNTHESIS AS 4832 02:45:26,911 --> 02:45:28,779 SORT OF A LAUNCH POINT FOR 4833 02:45:28,779 --> 02:45:31,749 SOMETHING ELSE. 4834 02:45:31,749 --> 02:45:33,484 SO I THINK IT IS NOVEL IN THE 4835 02:45:33,484 --> 02:45:36,654 SENSE THAT IT HELPS PUT PEN TO 4836 02:45:36,654 --> 02:45:38,856 PAPER, WHICH IS SOMETIMES A 4837 02:45:38,856 --> 02:45:39,757 RATE-LIMITING STEP IN THE 4838 02:45:39,757 --> 02:45:42,927 RESEARCH PROCESS, WHETHER IT CAN 4839 02:45:42,927 --> 02:45:45,529 GENERATE ENTIRELY NEW IDEAS 4840 02:45:45,529 --> 02:45:47,298 THEMSELVES, NO, FOR THE EXACT 4841 02:45:47,298 --> 02:45:49,700 REASONS YOU'RE SAYING, BUT I 4842 02:45:49,700 --> 02:45:52,002 THINK WHEN PAIRED WITH THE HUMAN 4843 02:45:52,002 --> 02:45:54,205 MIND, THAT'S WHEN THE NOVELTY 4844 02:45:54,205 --> 02:45:55,840 AND ORIGINALITY OCCURS. 4845 02:45:55,840 --> 02:45:57,708 BUT THIS FUNDAMENTAL QUESTION 4846 02:45:57,708 --> 02:46:02,513 ABOUT WHETHER ORIGINALITY IS 4847 02:46:02,513 --> 02:46:04,081 NECESSARY TO BE GOOD RESEARCH I 4848 02:46:04,081 --> 02:46:06,350 THINK IS ALSO A PHILOSOPHICAL 4849 02:46:06,350 --> 02:46:08,753 QUESTION THAT WARRANTS 4850 02:46:08,753 --> 02:46:09,053 REFLECTION. 4851 02:46:09,053 --> 02:46:09,754 >> GREAT. 4852 02:46:09,754 --> 02:46:11,055 WELL, WE'LL LEAVE IT AT THAT. 4853 02:46:11,055 --> 02:46:12,156 THANK YOU SO MUCH FOR JOINING 4854 02:46:12,156 --> 02:46:12,389 US. 4855 02:46:12,389 --> 02:46:14,258 SORRY IT COULDN'T BE IN PERSON. 4856 02:46:14,258 --> 02:46:14,525 [APPLAUSE] 4857 02:46:14,525 --> 02:46:16,293 >> ME TOO. 4858 02:46:16,293 --> 02:46:17,862 >> NEXT TIME. 4859 02:46:17,862 --> 02:46:19,497 WHEN WE HAVE YOU BACK TO TALK 4860 02:46:19,497 --> 02:46:20,831 ABOUT SPACE SCIENCE. 4861 02:46:20,831 --> 02:46:22,333 >> YES. 4862 02:46:22,333 --> 02:46:23,868 AND SYNTHETIC DATA IN SPACE, HOW 4863 02:46:23,868 --> 02:46:24,535 ABOUT THAT? 4864 02:46:24,535 --> 02:46:27,605 >> OH, THAT SOUNDS AWESOME. 4865 02:46:27,605 --> 02:46:29,673 SO THANK YOU AGAIN, AND WE'LL BE 4866 02:46:29,673 --> 02:46:31,809 IN TOUCH ABOUT THIS AFTERNOON. 4867 02:46:31,809 --> 02:46:32,276 VERY GOOD. 4868 02:46:32,276 --> 02:46:34,512 GOOD. 4869 02:46:34,512 --> 02:46:36,680 AND THANKS TO ALL OF YOU WHO ARE 4870 02:46:36,680 --> 02:46:38,315 HERE AND YOU AOF THOSE IN THE 4871 02:46:38,315 --> 02:46:40,718 VIRTUAL AUDIENCE FOR 4872 02:46:40,718 --> 02:46:42,353 PARTICIPATING THIS YEAR. 4873 02:46:42,353 --> 02:46:44,221 IT'S BEEN A GREAT OPPORTUNITY 4874 02:46:44,221 --> 02:46:44,989 FOR ME. 4875 02:46:44,989 --> 02:46:47,424 I LEASHED A TON -- I LEARNED A 4876 02:46:47,424 --> 02:46:48,259 TON. 4877 02:46:48,259 --> 02:46:50,261 AND FIP INITIAL UP THOSE QUIZZES 4878 02:46:50,261 --> 02:46:52,269 BY THE FIFTEENTH OF NOVEMBER -- BE SENDING OUT YOUR CERTIFICATES