1 00:00:11,440 --> 00:00:13,640 Welcome to the Clinical Center Grand Rounds, 2 00:00:13,640 --> 00:00:17,440 a weekly series of educational lectures for physicians and 3 00:00:17,440 --> 00:00:20,080 health care professionals broadcast from the Clinical 4 00:00:20,080 --> 00:00:23,040 Center at the National Institutes of Health in 5 00:00:23,040 --> 00:00:24,840 Bethesda, MD. 6 00:00:24,840 --> 00:00:28,400 The NIH Clinical Center is the world's largest hospital totally 7 00:00:28,400 --> 00:00:32,080 dedicated to investigational research and leads the global 8 00:00:32,080 --> 00:00:35,040 effort in training today's investigators and discovering 9 00:00:35,040 --> 00:00:37,200 tomorrow's cures. 10 00:00:37,200 --> 00:00:48,160 Learn more by visiting us online at http://clinicalcenter.nih.gov 11 00:00:48,160 --> 00:00:51,880 I WANT TO WELCOME EVERYONE TO 12 00:00:51,880 --> 00:00:53,520 TODAY'S SESSION OF ETHICS GRAND 13 00:00:53,520 --> 00:00:55,840 ROUNDS FROM THE NIH CLINICAL 14 00:00:55,840 --> 00:00:57,440 CENTER. 15 00:00:57,440 --> 00:01:01,480 I'M DAVE WENDLER, WE'RE THE HOST 16 00:01:01,480 --> 00:01:02,520 FOR THE ETHICS GRAND ROUNDS. 17 00:01:02,520 --> 00:01:04,280 WE DO THAT FOUR TIMES A YEAR AN 18 00:01:04,280 --> 00:01:06,680 FOR PEOPLE WHO ARE PLANNING 19 00:01:06,680 --> 00:01:09,720 AHEAD, OUR NEXT SESSI SESSIONS E 20 00:01:09,720 --> 00:01:10,800 SPRING WILL BE THE FIRST 21 00:01:10,800 --> 00:01:12,800 WEDNESDAY IN FEBRUARY. 22 00:01:12,800 --> 00:01:13,800 AND THE FIRST WEDNESDAY IN 23 00:01:13,800 --> 00:01:14,240 APRIL. 24 00:01:14,240 --> 00:01:15,680 I THINK THOSE WILL BE REALLY 25 00:01:15,680 --> 00:01:16,120 WONDERFUL SESSIONS. 26 00:01:16,120 --> 00:01:19,600 I HOPE YOU CAN JOIN US. 27 00:01:19,600 --> 00:01:20,360 THE FIRST WEDNESDAY IN FEBRUARY 28 00:01:20,360 --> 00:01:22,240 AND THE FIRST WEDNESDAY IN 29 00:01:22,240 --> 00:01:24,440 APRIL. 30 00:01:24,440 --> 00:01:26,400 SO OUR DEPARTMENT HOSTS THESE 31 00:01:26,400 --> 00:01:27,280 ETHICS GRAND ROUNDS AND THE GOAL 32 00:01:27,280 --> 00:01:31,200 IS TO PRESENT WHAT WE REGARD AS 33 00:01:31,200 --> 00:01:32,600 INTERESTING IMPORTANT ETHICAL 34 00:01:32,600 --> 00:01:36,440 QUESTIONS, TYPICALLY IN CLINICAL 35 00:01:36,440 --> 00:01:37,760 RESEARCH, CLINICAL CARE AND/OR 36 00:01:37,760 --> 00:01:38,960 HEALTH POLICY MORE GENERALLY AND 37 00:01:38,960 --> 00:01:42,480 TO PRESENT THOSE TO THE NIH AND 38 00:01:42,480 --> 00:01:43,440 BROADER COMMUNITY AND TO HAVE 39 00:01:43,440 --> 00:01:47,200 SOME DISCUSSION ON THOSE ISSUES. 40 00:01:47,200 --> 00:01:53,000 SO AS A REMIND E A REMINDER, WET 41 00:01:53,000 --> 00:01:56,480 SPOKESPEOPLE, WE'RE KNOLL POLICY 42 00:01:56,480 --> 00:01:57,800 MAKERS, WE'RE NOT REPRESENTING 43 00:01:57,800 --> 00:01:58,880 ANYBODY ELSE, WE'RE CERTAINLY 44 00:01:58,880 --> 00:01:59,960 NOT REPRESENTING THE 45 00:01:59,960 --> 00:02:01,080 INSTITUTIONS TO WHICH WE'RE 46 00:02:01,080 --> 00:02:01,400 AFFILIATED. 47 00:02:01,400 --> 00:02:02,600 WE'RE JUST GOING TO GIVE YOU OUR 48 00:02:02,600 --> 00:02:04,560 OWN VIEWS. 49 00:02:04,560 --> 00:02:06,560 THE TOPIC IS 50 00:02:06,560 --> 00:02:08,360 WHETHER OR NOT RESEARCH 51 00:02:08,360 --> 00:02:09,880 PARTICIPANTS SHOULD SHARE IN THE 52 00:02:09,880 --> 00:02:13,280 PROFITS THAT RESULT FROM 53 00:02:13,280 --> 00:02:16,240 CLINICAL TRIALS IN WHICH THEY 54 00:02:16,240 --> 00:02:16,520 PARTICIPATE. 55 00:02:16,520 --> 00:02:18,080 THIS IS AN ISSUE THAT I'VE BEEN 56 00:02:18,080 --> 00:02:19,280 WANTING TO DO ETHICS GRAND 57 00:02:19,280 --> 00:02:20,640 ROUNDS ON FOR A NUMBER OF YEARS, 58 00:02:20,640 --> 00:02:23,680 SO I'M REALLY EXCITED TO FINALLY 59 00:02:23,680 --> 00:02:28,600 GET A CHANCE TO PRESENT IT. 60 00:02:28,600 --> 00:02:29,480 SOMETIMES CLINICAL TRIALS LEAD 61 00:02:29,480 --> 00:02:30,880 TO ENORMOUS PROFITS AND THOSE 62 00:02:30,880 --> 00:02:32,320 PROFITS CAN BE SHARED BY 63 00:02:32,320 --> 00:02:33,320 RESEARCHERS, BY THE SPONSORING 64 00:02:33,320 --> 00:02:34,680 COMPANIES, BY INVESTORS, AND BY 65 00:02:34,680 --> 00:02:42,360 A LOT OF OTHER PEOPLE, BUT THEY 66 00:02:42,360 --> 00:02:43,000 TYPICALLY -- THEY'RE NOT SHARED 67 00:02:43,000 --> 00:02:43,920 WITH RESEARCH PARTICIPANTS. 68 00:02:43,920 --> 00:02:45,120 THE QUESTION FOR TODAY IS JUST 69 00:02:45,120 --> 00:02:47,320 WHETHER OR NOT THAT'S AN 70 00:02:47,320 --> 00:02:48,040 APPROPRIATE POLICY OR NOT. 71 00:02:48,040 --> 00:02:49,160 SO THAT'S THE ISSUE THAT WE'RE 72 00:02:49,160 --> 00:02:53,320 GOING TO FOCUS ON. 73 00:02:53,320 --> 00:02:55,000 TO PRESENT THE CASE WE HAVE JEFF 74 00:02:55,000 --> 00:02:56,280 CONE, CHIEF OF THE LABORATORY OF 75 00:02:56,280 --> 00:02:59,120 INFECTIOUS DISEASES AT THE 76 00:02:59,120 --> 00:02:59,880 NIAID. 77 00:02:59,880 --> 00:03:00,720 LIKE ME, JEFF HAS BEEN AROUND 78 00:03:00,720 --> 00:03:02,080 THE NIH FOR A LONG TIME. 79 00:03:02,080 --> 00:03:04,040 THIS PROBABLY ISN'T ON HIS CV 80 00:03:04,040 --> 00:03:06,680 BUT WHEN I FIRST CAME TO THE 81 00:03:06,680 --> 00:03:09,840 NIH, JEFF WAS THE CHAIR OF THE 82 00:03:09,840 --> 00:03:12,680 NIAID IRB, HE WAS WONDERFULLY 83 00:03:12,680 --> 00:03:13,680 WELCOMING TO ME AND REMAINS 84 00:03:13,680 --> 00:03:15,640 AFTER ALL OF THESE YEARS ONE OF 85 00:03:15,640 --> 00:03:17,160 THE BEST IRB CHAIRS THAT I'VE 86 00:03:17,160 --> 00:03:19,240 EVER WORKED WITH. 87 00:03:19,240 --> 00:03:21,080 SHOULD BE ON YOUR CV, JEFF. 88 00:03:21,080 --> 00:03:24,920 JEFF WAS NOT A PRINCIPAL IN THIS 89 00:03:24,920 --> 00:03:27,120 CASE. 90 00:03:27,120 --> 00:03:28,160 JEFF IS GOING TO PRESENT THE 91 00:03:28,160 --> 00:03:29,520 CASE AND THEN I'M GOING TO 92 00:03:29,520 --> 00:03:34,960 PRESENT A VIEW, THE AFFIRMATIVE 93 00:03:34,960 --> 00:03:36,960 ARGUING IN SOME PIECES RESEARCH 94 00:03:36,960 --> 00:03:38,160 PARTICIPANTS SHOULD SHARE IN THE 95 00:03:38,160 --> 00:03:40,440 PROFITS OF THE RESEARCH TO WHICH 96 00:03:40,440 --> 00:03:41,640 THEY PARTICIPATE, AND THEN GLENN 97 00:03:41,640 --> 00:03:44,400 COHEN IS GOING TO COMMENT ON MY 98 00:03:44,400 --> 00:03:47,360 VIEWS AND ALSO JUST THE GENERAL 99 00:03:47,360 --> 00:03:47,800 ISSUE. 100 00:03:47,800 --> 00:03:49,320 GLENN COHEN, IN ADDITION TO 101 00:03:49,320 --> 00:03:52,920 BEING ONE OF THE WORLD'S LEADING 102 00:03:52,920 --> 00:03:56,840 EXPERTS ON LAW AND BIOETHICS, IS 103 00:03:56,840 --> 00:03:58,360 ALSO THE JAMES A. ATTWOD AND 104 00:03:58,360 --> 00:03:59,000 LESLIE WILLIAMS PROFESSOR OF LAW 105 00:03:59,000 --> 00:04:07,120 AT HARVARD LAW SCHOOL. 106 00:04:07,120 --> 00:04:08,480 GLENN -- DOING A WONDERFUL JOB 107 00:04:08,480 --> 00:04:10,080 AND OF COURSE WE CAN'T LET 108 00:04:10,080 --> 00:04:11,120 PEOPLE GET AWAY WITH THAT 109 00:04:11,120 --> 00:04:12,840 WITHOUT SOME SORT OF 110 00:04:12,840 --> 00:04:14,720 RAMIFICATIONS AND FOR GLENN, 111 00:04:14,720 --> 00:04:18,520 WE'VE DRAGGED HIM BACK IN AND 112 00:04:18,520 --> 00:04:19,000 HE'S KINDLY AGREED TO DO ANOTHER 113 00:04:19,000 --> 00:04:20,400 ONE FOR US. 114 00:04:20,400 --> 00:04:21,400 SO TO GET US GOING, JEFF. 115 00:04:21,400 --> 00:04:22,360 >>THANK YOU. 116 00:04:22,360 --> 00:04:23,920 SO AS DAVE MENTIONED, SHOULD 117 00:04:23,920 --> 00:04:24,760 RESEARCH PARTICIPANTS SHARE IN 118 00:04:24,760 --> 00:04:26,120 THE PROFITS? 119 00:04:26,120 --> 00:04:27,760 SO I HAVE NO CONFLICTS OF 120 00:04:27,760 --> 00:04:29,080 INTEREST WITH RESPECT TO THE 121 00:04:29,080 --> 00:04:29,960 PRESENT PRESENTATION. 122 00:04:29,960 --> 00:04:31,360 I SHOULD MENTION THAT PROFESSOR 123 00:04:31,360 --> 00:04:33,480 COHEN, THE DISCUSSANT AND I, 124 00:04:33,480 --> 00:04:34,880 HAVE THE SAME LAST NAME AND WE 125 00:04:34,880 --> 00:04:36,080 PROBABLY ARE RELATED FROM 126 00:04:36,080 --> 00:04:37,640 SEVERAL THOUSAND YEARS AGO, BUT 127 00:04:37,640 --> 00:04:40,680 WE ARE NOT DIRECTLY RELATED, AND 128 00:04:40,680 --> 00:04:42,080 THIS IS THE FIRST TIME I'VE MET 129 00:04:42,080 --> 00:04:42,960 HIM. 130 00:04:42,960 --> 00:04:44,160 SO NO CONFLICT OF INTEREST 131 00:04:44,160 --> 00:04:46,600 THERE. 132 00:04:46,600 --> 00:04:47,680 LEARNING OBJECTIVES FOR TODAY 133 00:04:47,680 --> 00:04:49,960 ARE TO DESCRIBE RESEARCH ON 134 00:04:49,960 --> 00:04:52,680 MONOCLONAL ANTIBODIES AGAINST 135 00:04:52,680 --> 00:04:53,480 INFECTIOUS AGENTS, AND DISCUSS 136 00:04:53,480 --> 00:04:55,000 THE CASE OF A RESEARCHER WITH 137 00:04:55,000 --> 00:04:57,520 POTENTIALLY POTENT ANTIBODIES, 138 00:04:57,520 --> 00:04:58,520 AND TO RAISE THE QUESTION OF 139 00:04:58,520 --> 00:05:00,680 WHETHER RESEARCH PARTICIPANTS 140 00:05:00,680 --> 00:05:04,400 SHOULD SHARE IN PROFITS. 141 00:05:04,400 --> 00:05:06,040 SO MONOCLONAL ANTIBODIES ARE 142 00:05:06,040 --> 00:05:07,720 NATURALLY OCCURRING ANTIBODIES 143 00:05:07,720 --> 00:05:10,360 OR I SHOULD SAY NATURAL 144 00:05:10,360 --> 00:05:11,000 OCCURRING ANTIBODIES ARE AN 145 00:05:11,000 --> 00:05:12,400 IMPORTANT PART OF OUR IMMUNE 146 00:05:12,400 --> 00:05:14,160 SYSTEM. 147 00:05:14,160 --> 00:05:15,880 MONOCLONAL ANTIBODIES, WHICH ARE 148 00:05:15,880 --> 00:05:17,240 HUMAN-MADE, ARE DERIVED FROM THE 149 00:05:17,240 --> 00:05:18,440 SINGLE B CELL FROM A 150 00:05:18,440 --> 00:05:19,480 PARTICIPANT, AND B CELLS, OF 151 00:05:19,480 --> 00:05:20,920 COURSE, ARE A TYPE OF WHITE 152 00:05:20,920 --> 00:05:22,120 BLOOD CELL. 153 00:05:22,120 --> 00:05:23,880 AND MONOCLONAL ANTIBODIES ARE 154 00:05:23,880 --> 00:05:25,040 USED TO PREVENT AND ALSO TO 155 00:05:25,040 --> 00:05:27,720 TREAT VARIOUS INFECTIONS, AS WE 156 00:05:27,720 --> 00:05:32,640 KNOW FROM THE COVID-19 PANDEMIC. 157 00:05:32,640 --> 00:05:34,800 SO AN NIH LABORATORY HAS A STUDY 158 00:05:34,800 --> 00:05:36,560 WHICH OBTAINS BLOOD SAMPLES FROM 159 00:05:36,560 --> 00:05:37,560 PARTICIPANTS INCLUDING NIH 160 00:05:37,560 --> 00:05:39,120 EMPLOYEES. 161 00:05:39,120 --> 00:05:43,560 THE BLOOD SAMPLES ARE USED TO 162 00:05:43,560 --> 00:05:44,440 DEVELOP MONOCLONAL ANTIBODIES 163 00:05:44,440 --> 00:05:45,640 AGAINST INFECTIOUS AGENTS OF 164 00:05:45,640 --> 00:05:47,040 MEDICAL IMPORTANCE. 165 00:05:47,040 --> 00:05:50,040 A RESEARCHER IN THE LABORATORY, 166 00:05:50,040 --> 00:05:51,560 AND AS DAVE MENTIONED, I WAS NOT 167 00:05:51,560 --> 00:05:53,280 THE RESEARCHERS, FOUND THAT 168 00:05:53,280 --> 00:05:55,480 BLOOD FROM PERSONS INFECTED WITH 169 00:05:55,480 --> 00:05:58,120 COVID-19 CAN BE USED TO MAKE 170 00:05:58,120 --> 00:06:00,200 MONOCLONAL ANTIBODIES AGAINST 171 00:06:00,200 --> 00:06:02,080 DIFFERENT STRAINS OF SARS-COV-2. 172 00:06:02,080 --> 00:06:04,720 THE COLLECTION STUDY IS DESIGNED 173 00:06:04,720 --> 00:06:07,320 TO USE THE B CELLS FROM THE 174 00:06:07,320 --> 00:06:08,920 PERSONS OR PERSON WHOSE SERUM 175 00:06:08,920 --> 00:06:13,960 SAMPLE HAS THE MOST POTENT 176 00:06:13,960 --> 00:06:15,840 ANTIBODY FOR USE IN DEVELOPING 177 00:06:15,840 --> 00:06:16,480 MONOCLONAL ANTIBODIES. 178 00:06:16,480 --> 00:06:19,440 SO THE RESEARCHER SCREENS 179 00:06:19,440 --> 00:06:20,360 INDIVIDUALS, AND THOSE WHO HAVE 180 00:06:20,360 --> 00:06:22,960 THE HIGHEST ANTIBODY LEVELS ARE 181 00:06:22,960 --> 00:06:24,920 OFTEN CHOSEN IN TERMS OF 182 00:06:24,920 --> 00:06:27,480 ISOLATING B CELLS FOR DEVELOPING 183 00:06:27,480 --> 00:06:31,080 MONOCLONAL ANTIBODIES. 184 00:06:31,080 --> 00:06:33,280 THE RESEARCHER HIMSELF DEVELOPS 185 00:06:33,280 --> 00:06:34,800 COVID-19, AND AFTER HE RECOVERS, 186 00:06:34,800 --> 00:06:36,320 HE ENROLLS IN THE SAMPLE 187 00:06:36,320 --> 00:06:39,120 COLLECTION STUDY IN ORDER TO 188 00:06:39,120 --> 00:06:41,120 CONTRIBUTE HIS SERUM AND CELLS 189 00:06:41,120 --> 00:06:43,560 IN THE DEVELOPMENT OF MONOCLONAL 190 00:06:43,560 --> 00:06:49,000 ANTIBODIES AGAINST SARS-COV-2. 191 00:06:49,000 --> 00:06:51,000 SURPRISINGLY WHEN THE RESEARCHER 192 00:06:51,000 --> 00:06:52,200 EVALUATES SAMPLES FROM ALL THE 193 00:06:52,200 --> 00:06:53,720 PARTICIPANTS IN THE COLLECTION 194 00:06:53,720 --> 00:06:55,160 STUDY, HE DISCOVERS THAT HIS 195 00:06:55,160 --> 00:06:57,240 SAMPLE HAS THE MOST POTENT 196 00:06:57,240 --> 00:06:59,520 ACTIVITY AGAINST SARS-COV-2. 197 00:06:59,520 --> 00:07:01,240 AND BASED ON THE PROTOCOL, THE 198 00:07:01,240 --> 00:07:03,800 RESEARCHER PROPOSES TO USE HIS 199 00:07:03,800 --> 00:07:05,080 OWN CELLS TO DEVELOP THE NEXT 200 00:07:05,080 --> 00:07:07,400 ROUND OF MONOCLONAL ANTIBODIES 201 00:07:07,400 --> 00:07:10,560 AGAINST SARS-COV-2, BECAUSE HIS 202 00:07:10,560 --> 00:07:13,200 CELLS CORRESPOND TO SERA THAT 203 00:07:13,200 --> 00:07:15,360 HAS THE HIGHEST LEVEL OF 204 00:07:15,360 --> 00:07:19,120 ANTIBODY TO SARS-COV-2. 205 00:07:19,120 --> 00:07:21,080 NOW THE ANTIBODIES DISCOVERED 206 00:07:21,080 --> 00:07:22,520 MAY BE SOME OF THE MOST 207 00:07:22,520 --> 00:07:23,280 EFFECTIVE AGAINST SARS-COV-2, 208 00:07:23,280 --> 00:07:25,040 AND IF THEY ARE, THE ANTIBODIES 209 00:07:25,040 --> 00:07:26,200 COULD BE USED TO DEVELOP 210 00:07:26,200 --> 00:07:28,040 PRODUCTS WHICH ARE WIDELY -- 211 00:07:28,040 --> 00:07:30,040 WHICH COULD BE USED WIDELY AND 212 00:07:30,040 --> 00:07:34,520 COULD YIELD SIGNIFICANT PROFITS. 213 00:07:34,520 --> 00:07:36,200 SO IN TERMS OF THE RESEARCHER 214 00:07:36,200 --> 00:07:38,160 CONTRIBUTIONS, RESEARCHERS MAKE 215 00:07:38,160 --> 00:07:39,040 IMPORTANT CONTRIBUTIONS TO THE 216 00:07:39,040 --> 00:07:40,560 STUDY IN WHICH THEY ARE 217 00:07:40,560 --> 00:07:41,000 INVOLVED. 218 00:07:41,000 --> 00:07:43,920 AND IN THE PROCESS, RESEARCHERS 219 00:07:43,920 --> 00:07:44,600 SOMETIMES CONTRIBUTE TO THE 220 00:07:44,600 --> 00:07:46,240 DEVELOPMENT OF PRODUCTS WHICH 221 00:07:46,240 --> 00:07:50,520 LEAD TO SIGNIFICANT PROFITS. 222 00:07:50,520 --> 00:07:52,080 NOW RESEARCHERS MAY BENEFIT, AND 223 00:07:52,080 --> 00:07:55,000 WHEN THEY DO, THEY MAY BENEFIT 224 00:07:55,000 --> 00:07:55,440 FINANCIALLY. 225 00:07:55,440 --> 00:07:57,080 AND AT THE NIH, RESEARCHERS 226 00:07:57,080 --> 00:07:59,960 MIGHT BE INVENTERS ON A PATENT. 227 00:07:59,960 --> 00:08:01,360 IN ADDITION, BOTH THE 228 00:08:01,360 --> 00:08:03,640 RESEARCHERS AND THEIR 229 00:08:03,640 --> 00:08:04,480 LABORATORIES CAN RECEIVE 230 00:08:04,480 --> 00:08:06,360 ROYALTIES. 231 00:08:06,360 --> 00:08:08,440 NOW IN TERMS OF THE PARTICIPANT, 232 00:08:08,440 --> 00:08:10,280 THE ONE WHO GIVES THE BLOOD, 233 00:08:10,280 --> 00:08:11,920 RESEARCH PARTICIPANTS MAKE 234 00:08:11,920 --> 00:08:13,040 IMPORTANT CONTRIBUTIONS TO THE 235 00:08:13,040 --> 00:08:16,520 STUDIES IN WHICH THEY ARE 236 00:08:16,520 --> 00:08:16,800 INVOLVED. 237 00:08:16,800 --> 00:08:18,200 IN THE PROCESS, PARTICIPANTS 238 00:08:18,200 --> 00:08:18,760 SOMETIMES CONTRIBUTE TO THE 239 00:08:18,760 --> 00:08:20,040 DEVELOPMENT OF PRODUCTS WHICH 240 00:08:20,040 --> 00:08:25,160 LEAD TO SIGNIFICANT PROFITS. 241 00:08:25,160 --> 00:08:27,040 SOL THE RESEARCHER WONDERS 242 00:08:27,040 --> 00:08:28,480 WHETHER THE PARTICIPANTS, 243 00:08:28,480 --> 00:08:30,320 INCLUDING HIMSELF, SHOULD 244 00:08:30,320 --> 00:08:32,040 BENEFIT FINANCIALLY. 245 00:08:32,040 --> 00:08:34,040 SHOULD RESEARCH PARTICIPANTS 246 00:08:34,040 --> 00:08:35,000 BENEFIT FINANCIALLY WHEN THEY 247 00:08:35,000 --> 00:08:36,840 CONTRIBUTE TO STUDIES WHICH LEAD 248 00:08:36,840 --> 00:08:40,480 TO SIGNIFICANT PROFITS? 249 00:08:40,480 --> 00:08:43,560 SO THE STANDARD PRACTICE IS FOR 250 00:08:43,560 --> 00:08:45,320 RESEARCHERS BUT NOT RESEARCH 251 00:08:45,320 --> 00:08:46,400 PARTICIPANTS, THAT IS, NOT THE 252 00:08:46,400 --> 00:08:48,480 PEOPLE WHO DONATE THE SAMPLES, 253 00:08:48,480 --> 00:08:50,600 TO SHARE IN THE PROFITS OF 254 00:08:50,600 --> 00:08:51,440 STUDIES TO WHICH THEY 255 00:08:51,440 --> 00:08:54,520 CONTRIBUTE. 256 00:08:54,520 --> 00:08:55,360 POTENTIAL PARTICIPANTS ARE 257 00:08:55,360 --> 00:08:56,920 USUALLY INFORMED OF AND REQUIRED 258 00:08:56,920 --> 00:08:58,400 TO AGREE TO THIS PRACTICE DURING 259 00:08:58,400 --> 00:09:00,520 THE CONSENT PROCESS. 260 00:09:00,520 --> 00:09:02,720 SO THE CONSENT THAT'S USED IN 261 00:09:02,720 --> 00:09:05,120 THIS LABORATORY IS AS FOLLOWS: 262 00:09:05,120 --> 00:09:07,280 IN SOME CASES, THE NIH AND THE 263 00:09:07,280 --> 00:09:09,600 RESEARCH TEAM FOR THIS STUDY MAY 264 00:09:09,600 --> 00:09:10,720 DEVELOP ANTIBODIES FROM YOUR 265 00:09:10,720 --> 00:09:12,000 BLOOD TO THE VIRUS BEING 266 00:09:12,000 --> 00:09:13,200 STUDIED. 267 00:09:13,200 --> 00:09:14,840 THIS MEANS IT IS POSSIBLE THAT 268 00:09:14,840 --> 00:09:16,880 THE RECIPIENTS OF THIS STUDY 269 00:09:16,880 --> 00:09:18,440 COULD LEAD TO PAYMENTS TO THE 270 00:09:18,440 --> 00:09:20,720 NIH. 271 00:09:20,720 --> 00:09:22,280 BY LAW, THE GOVERNMENT IS 272 00:09:22,280 --> 00:09:23,920 REQUIRED TO SHARE SUCH PAYMENTS 273 00:09:23,920 --> 00:09:27,840 WITH THE EMPLOYEE INVENTORS. 274 00:09:27,840 --> 00:09:29,360 YOU, THAT IS, THE PERSON WHO 275 00:09:29,360 --> 00:09:30,360 DONATED THE BLOOD, WILL NOT 276 00:09:30,360 --> 00:09:31,560 RECEIVE ANY MONEY FROM THE 277 00:09:31,560 --> 00:09:35,160 DEVELOPMENT OF THESE ANTIBODIES. 278 00:09:35,160 --> 00:09:37,600 SO THE QUESTIONS FOR TODAY ARE: 279 00:09:37,600 --> 00:09:39,320 WHO SHOULD SHARE IN PROFITS THAT 280 00:09:39,320 --> 00:09:40,320 RESULT FROM PRODUCTS DEVELOPED 281 00:09:40,320 --> 00:09:41,960 IN RESEARCH STUDIES? 282 00:09:41,960 --> 00:09:44,040 SHOULD THE RESEARCHERS SHARE IN 283 00:09:44,040 --> 00:09:45,120 PROFITS? 284 00:09:45,120 --> 00:09:46,320 SHOULD THEIR LABS SHARE IN 285 00:09:46,320 --> 00:09:46,640 PROFITS? 286 00:09:46,640 --> 00:09:48,080 AND SHOULD THE PARTICIPANTS WHO 287 00:09:48,080 --> 00:09:50,160 DONATED THE SAMPLES SHARE IN THE 288 00:09:50,160 --> 00:09:51,360 PROFITS? 289 00:09:51,360 --> 00:09:58,600 SO I'M GOING TO STOP THERE AND 290 00:09:58,600 --> 00:09:59,320 DR. WENDLER CAN CONTINUE. 291 00:09:59,320 --> 00:10:02,640 >>THANKS VERY MUCH, JEFF. 292 00:10:02,640 --> 00:10:06,000 SO AS I GET STARTED HEE I JUST 293 00:10:06,000 --> 00:10:10,680 HAD A HERE, I JUSTHAD A COUPLE R 294 00:10:10,680 --> 00:10:15,840 ANYBODY WHO HAS COME IN LATE. 295 00:10:15,840 --> 00:10:20,120 WE TAKE QUESTIONS TO ASK 296 00:10:20,120 --> 00:10:21,760 QUESTIONS, GO AND FIND THE LIVE 297 00:10:21,760 --> 00:10:23,120 FEEDBACK BUTTON ON THE WEBSITE, 298 00:10:23,120 --> 00:10:25,480 CLICK THAT, AND YOU CAN ASK YOUR 299 00:10:25,480 --> 00:10:27,760 QUESTION AND THOSE QUESTIONS 300 00:10:27,760 --> 00:10:29,080 WILL COME TO ME. 301 00:10:29,080 --> 00:10:32,120 AGAIN, WE ALSO GIVE CME CREDIT 302 00:10:32,120 --> 00:10:33,480 THROUGH HOPKINS TO CLAIM THAT 303 00:10:33,480 --> 00:10:35,120 FOR ANYBODY WHO CAME IN LATE, 304 00:10:35,120 --> 00:10:40,240 YOU TEXT 44534 TO THE PHONE 305 00:10:40,240 --> 00:10:41,200 NUMBER ON THE SLIDE. 306 00:10:41,200 --> 00:10:43,760 AND THE LAST THING IS WE HAVE 307 00:10:43,760 --> 00:10:45,160 EVALUATIONS, THERE ARE PDFs 308 00:10:45,160 --> 00:10:46,160 AVAILABLE ON THE WEBSITE FOR 309 00:10:46,160 --> 00:10:50,080 ANYBODY WHO WOULD LIKE. 310 00:10:50,080 --> 00:10:50,960 WE'RE VERY INTERESTED IN 311 00:10:50,960 --> 00:10:52,160 THOUGHTS, COMMENTS AND CERTAINLY 312 00:10:52,160 --> 00:10:54,120 SUGGESTIONS FOR FUTURE ETHICS 313 00:10:54,120 --> 00:10:56,880 GRAND ROUNDS IF YOU HAVE THOSE, 314 00:10:56,880 --> 00:10:58,280 FEEL FREE TO PUT THEM IN THE 315 00:10:58,280 --> 00:10:59,760 EVALUATION FORM OR, MAYBE EVEN 316 00:10:59,760 --> 00:11:01,320 BETTER, FEEL FREE JUST TO EMAIL 317 00:11:01,320 --> 00:11:02,000 ME DIRECTLY. 318 00:11:02,000 --> 00:11:04,400 FOR PEOPLE WHO ARE INTERNAL, MY 319 00:11:04,400 --> 00:11:09,240 EMAIL IS ON THE GLOBAL, IT'S 320 00:11:09,240 --> 00:11:09,880 DWENDLER@NIH.GOV. 321 00:11:09,880 --> 00:11:12,000 SO JEFF PRESENTED A REALLY NICE 322 00:11:12,000 --> 00:11:12,400 CASE. 323 00:11:12,400 --> 00:11:13,880 WHAT I LIKE ABOUT THIS CASE IS 324 00:11:13,880 --> 00:11:16,560 THAT IT COMPARES DIRECTLY THE 325 00:11:16,560 --> 00:11:18,760 RESEARCHER CLAIMS TO PROFITS TO 326 00:11:18,760 --> 00:11:22,680 RESEARCH PARTICIPANTS CLAIMS TO 327 00:11:22,680 --> 00:11:24,000 PROFITS UNDER CURRENT PRACTICE. 328 00:11:24,000 --> 00:11:27,720 SO IF THIS PRODUCT ENDS UP WITH 329 00:11:27,720 --> 00:11:28,920 PROFIT AND THE RESEARCHER IS 330 00:11:28,920 --> 00:11:32,480 INVOLVED IN THAT AS A 331 00:11:32,480 --> 00:11:33,320 RESEARCHER, UNDER STANDARD 332 00:11:33,320 --> 00:11:34,880 PRACTICE THEY WOULD LIKELY SHARE 333 00:11:34,880 --> 00:11:37,240 IN THE PROFITS HOWEVER, AS A 334 00:11:37,240 --> 00:11:38,000 RESEARCH PARTICIPANT THEY 335 00:11:38,000 --> 00:11:38,960 WOULDN'T AND THE QUESTION IS 336 00:11:38,960 --> 00:11:42,400 WHAT WE THINK ABOUT THAT, IS 337 00:11:42,400 --> 00:11:43,240 THAT APPROPRIATE POLICY OR NOT. 338 00:11:43,240 --> 00:11:44,560 SO I DON'T HAVE ANY CONFLICTS OF 339 00:11:44,560 --> 00:11:48,920 INTEREST WITH RESPECT TO THIS 340 00:11:48,920 --> 00:11:49,240 PRESENTATION. 341 00:11:49,240 --> 00:11:50,920 AND HERE ARE MY THREE LEARNING 342 00:11:50,920 --> 00:11:51,200 OBJECTIVES. 343 00:11:51,200 --> 00:11:53,640 SO THE QUESTION THAT I WANT TO 344 00:11:53,640 --> 00:11:55,160 CONSIDER IS THE FACT THAT 345 00:11:55,160 --> 00:11:56,680 RESEARCH PARTICIPANTS CONTRIBUTE 346 00:11:56,680 --> 00:11:58,320 TO THE DEVELOPMENT OF DRUGS 347 00:11:58,320 --> 00:12:01,280 WHICH RESULT IN BILLIONS AND 348 00:12:01,280 --> 00:12:04,720 BILLIONS FOR ANYBODY WHO 349 00:12:04,720 --> 00:12:06,080 REMEMBERS -- IN THE BACK OF YOUR 350 00:12:06,080 --> 00:12:07,320 MIND SOMEWHERE WHEN YOU HEAR 351 00:12:07,320 --> 00:12:08,920 THAT PHRASE, SO BILLIONS AND 352 00:12:08,920 --> 00:12:10,120 BILLIONS OF DOLLARS IN PROFITS. 353 00:12:10,120 --> 00:12:14,840 THIS IS A REALLY NICE SUMMARY OF 354 00:12:14,840 --> 00:12:17,120 RECENT WORK ON THE CONTRIBUTIONS 355 00:12:17,120 --> 00:12:20,880 RESEARCH PARTICIPANTS MAKE. 356 00:12:20,880 --> 00:12:23,240 SO THIS FACT HAS LED TO DEBATE 357 00:12:23,240 --> 00:12:24,400 OVER WHETHER CURRENT PRACTICE, 358 00:12:24,400 --> 00:12:26,360 AGAIN, WHICH IS THAT PROFITS ARE 359 00:12:26,360 --> 00:12:28,400 NOT SHARED WITH PARTICIPANTS, 360 00:12:28,400 --> 00:12:29,200 WHETHER OR NOT THAT SHOULD BE 361 00:12:29,200 --> 00:12:30,280 CHANGED. 362 00:12:30,280 --> 00:12:32,360 AND FOR A NUMBER OF INTERESTING 363 00:12:32,360 --> 00:12:34,000 REASONS, A LOT OF THE FOCUS OF 364 00:12:34,000 --> 00:12:35,080 THAT DEBATE, THAT'S A DEBATE 365 00:12:35,080 --> 00:12:36,560 THAT APPLIES TO RESEARCH 366 00:12:36,560 --> 00:12:38,040 PARTICIPANTS OF ANY TYPE, BUT 367 00:12:38,040 --> 00:12:40,560 FOR A NUMBER OF DIFFERENT 368 00:12:40,560 --> 00:12:41,760 REASONS, THE FOCUS HAS BEEN AS 369 00:12:41,760 --> 00:12:46,480 WE WILL FOCUS TODAY ON SAMPLE 370 00:12:46,480 --> 00:12:50,000 DONORS AND MANY ARE FAMILIAR 371 00:12:50,000 --> 00:12:56,760 WITH THE CASE OF HENRIETTA 372 00:12:56,760 --> 00:12:57,200 LACKS. 373 00:12:57,200 --> 00:12:59,480 SO WE'RE ASKING WHETHER OR NOT 374 00:12:59,480 --> 00:13:00,920 EXISTING PRACTICE IS 375 00:13:00,920 --> 00:13:01,240 APPROPRIATE. 376 00:13:01,240 --> 00:13:02,120 THE FIRST THING I THINK IS 377 00:13:02,120 --> 00:13:03,320 IMPORTANT TO NOTE IS THAT 378 00:13:03,320 --> 00:13:04,680 WHENEVER WE EVALUATE PROPOSED 379 00:13:04,680 --> 00:13:06,840 CHANGES TO ANY EXISTING 380 00:13:06,840 --> 00:13:08,640 PRACTICE, WE NEED TO BE CAREFUL 381 00:13:08,640 --> 00:13:10,520 TO AVOID A STATUS QUO BIAS. 382 00:13:10,520 --> 00:13:12,080 SO HOW DOES THAT WORK? 383 00:13:12,080 --> 00:13:15,440 WELL, BASICALLY, IF THERE'S SOME 384 00:13:15,440 --> 00:13:16,320 PRACTICE THAT'S BEEN AROUND FOR 385 00:13:16,320 --> 00:13:17,720 A WHILE, WE'VE GOTTEN USED TO 386 00:13:17,720 --> 00:13:19,920 IT, AND WE TEND TO ACCEPT THOSE 387 00:13:19,920 --> 00:13:20,920 PRACTICES AND POLICY. 388 00:13:20,920 --> 00:13:22,680 THEY JUST BECOME EMBEDDED AND 389 00:13:22,680 --> 00:13:26,120 PART OF OUR LIVES THAT WE JUST 390 00:13:26,120 --> 00:13:27,480 ACCEPT THEM TO FIGHT WHATEVER 391 00:13:27,480 --> 00:13:28,560 PROBLEMS, CONCERNS THEY MIGHT 392 00:13:28,560 --> 00:13:29,640 RAISE. 393 00:13:29,640 --> 00:13:33,880 BUT IN CONTRAST, THE SAME 394 00:13:33,880 --> 00:13:37,360 PROBLEMS, THE SAME WRIN ELS AS N 395 00:13:37,360 --> 00:13:39,200 THE SLIDE OR EVEN FEWER MIGHT 396 00:13:39,200 --> 00:13:43,640 LEAD US TO REJECT EACH WHEN IT 397 00:13:43,640 --> 00:13:45,080 MIGHT BE SIMILAR TO OR EVEN 398 00:13:45,080 --> 00:13:46,960 BETTER THAN EXISTING PRACTICES 399 00:13:46,960 --> 00:13:49,440 SO WE WANT TO AVOID STATUS QUO 400 00:13:49,440 --> 00:13:51,320 BIASES LIKE THAT, WE WANT TO 401 00:13:51,320 --> 00:13:52,400 EVALUATE THINGS FAIR, EVENLY AND 402 00:13:52,400 --> 00:13:53,360 ON THEIR OWN TERMS. 403 00:13:53,360 --> 00:13:54,520 SO HERE JUST ONE EXAMPLE. 404 00:13:54,520 --> 00:13:56,800 I THINK THE STATUS QUO BIAS IS 405 00:13:56,800 --> 00:13:57,720 INFORMING A LOT OF THE VIEWS AND 406 00:13:57,720 --> 00:13:59,360 A LOT OF THE SUPPORT FOR 407 00:13:59,360 --> 00:13:59,800 STANDARD PRACTICE. 408 00:13:59,800 --> 00:14:02,360 SO A LOT OF COMMENTATORS AGREE 409 00:14:02,360 --> 00:14:03,640 WITH STANDARD PRACTICE THAT 410 00:14:03,640 --> 00:14:06,000 RESEARCH PARTICIPANTS SHOULDN'T 411 00:14:06,000 --> 00:14:07,600 SHARE IN PROFITS, BUT I THINK A 412 00:14:07,600 --> 00:14:10,760 LOT OF TIMES THOSE ARGUMENTS ARE 413 00:14:10,760 --> 00:14:12,200 BASED ON DIFFERENT KINDS OF 414 00:14:12,200 --> 00:14:12,960 STATUS QUO BIAS. 415 00:14:12,960 --> 00:14:14,360 SO HERE'S JUST ONE EXAMPLE FROM 416 00:14:14,360 --> 00:14:15,680 A VERY PROMINENT ARTICLE IN THIS 417 00:14:15,680 --> 00:14:18,200 REGARD. 418 00:14:18,200 --> 00:14:20,080 SO VERY FEW TISSUE DONORS, THE 419 00:14:20,080 --> 00:14:21,000 AUTHORS POINT OUT, WILL 420 00:14:21,000 --> 00:14:22,560 CONTRIBUTE CELLS THAT BECOME 421 00:14:22,560 --> 00:14:23,400 FINANCIAL BLOCKBUSTERS. 422 00:14:23,400 --> 00:14:26,920 SHOULD WE REWARD PATIENTS FOR, 423 00:14:26,920 --> 00:14:29,120 IN A SENSE, WINNING THE LOTTERY? 424 00:14:29,120 --> 00:14:30,440 AND THIS IS ABSOLUTELY RIGHT, 425 00:14:30,440 --> 00:14:34,160 THAT WHEN WE ARE PARTICIPANTS IN 426 00:14:34,160 --> 00:14:36,360 A TRIAL, WE HAVE NO IDEA WHETHER 427 00:14:36,360 --> 00:14:41,800 OR NOT A TRIAL WE CONTRIBUTE TO 428 00:14:41,800 --> 00:14:44,120 MIGHT HAVE BILLIONS OF DOLLARS 429 00:14:44,120 --> 00:14:45,320 OF PROFITS, IT'S IN A CERTAIN 430 00:14:45,320 --> 00:14:46,960 SENSE LUCKY WHICH ONES DO AND 431 00:14:46,960 --> 00:14:48,400 WHICH ONES DON'T, SO IF WE SHARE 432 00:14:48,400 --> 00:14:49,840 PROFITS WITH PARTICIPANTS, WE'LL 433 00:14:49,840 --> 00:14:51,880 BE IN EFFECT REWARDING THEM FOR 434 00:14:51,880 --> 00:14:52,440 THAT LUCK. 435 00:14:52,440 --> 00:14:56,040 AND THAT MIGHT SEEM PROBLEMATIC. 436 00:14:56,040 --> 00:14:57,320 WHILE I CAN UNDERSTAND WE MIGHT 437 00:14:57,320 --> 00:14:58,600 NOT LIKE THAT, JUST WANT TO 438 00:14:58,600 --> 00:15:01,040 POINT OUT THAT THAT'S THE WAY 439 00:15:01,040 --> 00:15:02,360 CURRENT PRACTICE WORKS WITH 440 00:15:02,360 --> 00:15:04,560 RESPECT TO THE OTHERS WHO 441 00:15:04,560 --> 00:15:06,200 PROFIT, WHO SHARE IN THE 442 00:15:06,200 --> 00:15:06,440 PROFITS. 443 00:15:06,440 --> 00:15:08,520 SO TAKE RESEARCHERS IN THE 444 00:15:08,520 --> 00:15:09,360 COMPANIES WHO SUPPORT THE 445 00:15:09,360 --> 00:15:09,640 PRODUCTS. 446 00:15:09,640 --> 00:15:13,080 SOME OF THEM GET LU LUCKY AND Y 447 00:15:13,080 --> 00:15:14,760 EARN HUNDREDS OF BILLIONS OF 448 00:15:14,760 --> 00:15:16,160 DOLLARS IN PROFITS LITERALLY, 449 00:15:16,160 --> 00:15:18,120 AND SOME PEOPLE EVEN WIN NOBEL 450 00:15:18,120 --> 00:15:19,040 PRIZES. 451 00:15:19,040 --> 00:15:21,200 BUT NOTICE THERE ARE OTHER 452 00:15:21,200 --> 00:15:21,760 RESEARCHERS, OTHER COMPANIES 453 00:15:21,760 --> 00:15:25,280 THAT HAVE EQUALLY GOOD IDEAS, 454 00:15:25,280 --> 00:15:26,680 WHICH JUST OUT OF LUCK DIDN'T 455 00:15:26,680 --> 00:15:27,240 PAN OUT. 456 00:15:27,240 --> 00:15:28,960 SOME THINGS WORK, SOME THINGS 457 00:15:28,960 --> 00:15:29,160 DON'T. 458 00:15:29,160 --> 00:15:30,840 WE CAN'T TELL IN ADVANCE WHICH 459 00:15:30,840 --> 00:15:32,040 THINGS WILL AND A WHICH ONES 460 00:15:32,040 --> 00:15:32,560 DON'T. 461 00:15:32,560 --> 00:15:36,080 THAT'S WHY WE JUST HAVE TO DO 462 00:15:36,080 --> 00:15:36,600 THE RESEARCH. 463 00:15:36,600 --> 00:15:37,720 BUT THE PEOPLE WHO HAVE A 464 00:15:37,720 --> 00:15:38,800 PRODUCT OR COMPANY THAT HAS A 465 00:15:38,800 --> 00:15:39,920 PRODUCT THAT DOESN'T PAN OUT, 466 00:15:39,920 --> 00:15:42,080 THEY DON'T EARN PROFITS, ANY 467 00:15:42,080 --> 00:15:43,840 PROFITS, THEY LOSE MONEY, MUCH 468 00:15:43,840 --> 00:15:45,280 LESS EARNING BILLIONS OF DOLLARS 469 00:15:45,280 --> 00:15:46,040 OF PROFITS. 470 00:15:46,040 --> 00:15:47,880 SO THE FACT THAT THERE'S LUCK 471 00:15:47,880 --> 00:15:49,320 HERE SEEMS THAT UNDER CURRENT 472 00:15:49,320 --> 00:15:50,840 PRACTICE, IT'S NOT RELEVANT, SO 473 00:15:50,840 --> 00:15:52,600 IF IT'S NOT RELEVANT TO 474 00:15:52,600 --> 00:15:55,840 RESEARCHERS AND COMPANIES, I 475 00:15:55,840 --> 00:15:57,280 THINK IT'S NOT AND SHOULDN'T BE 476 00:15:57,280 --> 00:15:59,160 CONSIDERED RELEVANT TO WHETHER 477 00:15:59,160 --> 00:15:59,920 DONORS WHO CONTRIBUTE SHOULD 478 00:15:59,920 --> 00:16:01,000 SHARE IN THE PROFITS. 479 00:16:01,000 --> 00:16:04,200 SO HOW DO WE AVOID A STATUS QUO 480 00:16:04,200 --> 00:16:04,640 BIAS? 481 00:16:04,640 --> 00:16:06,480 SO HERE'S MY GENERAL APPROACH, 482 00:16:06,480 --> 00:16:08,760 IS TO -- LET'S THINK ABOUT WHICH 483 00:16:08,760 --> 00:16:11,160 TYPES OF CONTRIBUTIONS UNDER 484 00:16:11,160 --> 00:16:13,560 CURRENT PRACTICE DO LEAD TO A 485 00:16:13,560 --> 00:16:16,880 CLAIM OR DO LEAD TO RECOGNITION 486 00:16:16,880 --> 00:16:17,640 IN WHICH INDIVIDUALS SHOULD 487 00:16:17,640 --> 00:16:18,720 SHARE IN THE PROFITS. 488 00:16:18,720 --> 00:16:20,600 SO FOR INSTANCE, WHY DO THE 489 00:16:20,600 --> 00:16:21,480 CONTRIBUTIONS OF RESEARCHERS 490 00:16:21,480 --> 00:16:23,440 MERIT A SHARE OF THE 491 00:16:23,440 --> 00:16:25,480 CONTRIBUTION -- OF THE PROFITS? 492 00:16:25,480 --> 00:16:27,160 IF WE CAN FIGURE THAT OUT, THEN 493 00:16:27,160 --> 00:16:29,440 WE CAN APPLY THE SAME PRINCIPLE 494 00:16:29,440 --> 00:16:31,400 TO SAMPLE DONORS. 495 00:16:31,400 --> 00:16:32,720 SO WOULD DO RESEARCHERS MERIT 496 00:16:32,720 --> 00:16:34,280 CLAIM IN SOME CASES AND HOW DOES 497 00:16:34,280 --> 00:16:36,560 THAT APPLY, THE ANSWER TO THAT 498 00:16:36,560 --> 00:16:39,920 QUESTION, APPLY TO DONORS? 499 00:16:39,920 --> 00:16:41,720 SO I'M A PHILOSOPHER AS A NUMBER 500 00:16:41,720 --> 00:16:43,560 OF YOU KNOW BUT THE GOOD NEWS 501 00:16:43,560 --> 00:16:45,120 FOR TODAY IS I'M NOT GOING TO GO 502 00:16:45,120 --> 00:16:46,960 INTO IN DEPTH PHILOSOPHICAL 503 00:16:46,960 --> 00:16:48,560 ANALYSIS FOR A SIMPLE REASON, I 504 00:16:48,560 --> 00:16:50,440 DON'T THINK THE CURRENT 505 00:16:50,440 --> 00:16:52,080 PRACTICE, I DON'T THINK IT'S 506 00:16:52,080 --> 00:16:53,680 BASED ON MANY PHILOSOPHICAL 507 00:16:53,680 --> 00:16:54,000 PRINCIPLES. 508 00:16:54,000 --> 00:16:55,240 AND HERE'S HOW PHILOSOPHERS 509 00:16:55,240 --> 00:16:55,920 WOULD TRY TO ANSWER THIS 510 00:16:55,920 --> 00:16:56,600 QUESTION. 511 00:16:56,600 --> 00:16:58,120 WHAT THEY DO IS THEY SAY, OKAY, 512 00:16:58,120 --> 00:16:59,760 WE WANT TO FIGURE OUT HOW TO 513 00:16:59,760 --> 00:17:01,160 DISTRIBUTE THE PROFITS FROM SOME 514 00:17:01,160 --> 00:17:03,800 LINE OF RESEARCH. 515 00:17:03,800 --> 00:17:05,320 LET'S FIGURE OUT THE BEST OR 516 00:17:05,320 --> 00:17:06,960 WHAT PHILOSOPHERS CALL THE IDEAL 517 00:17:06,960 --> 00:17:07,400 APPROACH. 518 00:17:07,400 --> 00:17:09,160 THIS IS SOMETIMES CALLED IDEAL 519 00:17:09,160 --> 00:17:10,360 THEORY. 520 00:17:10,360 --> 00:17:11,760 AND WHAT A PHILOSOPHER DOES, 521 00:17:11,760 --> 00:17:13,120 THEY SAY, OKAY, LET'S IMAGINE 522 00:17:13,120 --> 00:17:15,520 WE'RE STARTING THE WORLD FROM 523 00:17:15,520 --> 00:17:16,040 SCRATCH. 524 00:17:16,040 --> 00:17:17,680 I'M BUILDING A COUNTRY FROM 525 00:17:17,680 --> 00:17:19,880 SCRATCH ON MY OWN. 526 00:17:19,880 --> 00:17:22,600 WHAT PRINCIPLES WOULD I USE, 527 00:17:22,600 --> 00:17:23,560 WHAT PRINCIPLES DO I THINK ARE 528 00:17:23,560 --> 00:17:24,600 THE RIGHT PRINCIPLES TO USE TO 529 00:17:24,600 --> 00:17:28,040 DISTRIBUTE THE BENEFITS AND THE 530 00:17:28,040 --> 00:17:29,080 BURDENS WITHIN THAT COUNTRY OR 531 00:17:29,080 --> 00:17:31,120 WITHIN THAT WORLD. 532 00:17:31,120 --> 00:17:34,440 PHILOSOPHERS GIVE A LOT OF 533 00:17:34,440 --> 00:17:35,840 INTERESTING ANSWERS AND 534 00:17:35,840 --> 00:17:37,160 PRINCIPLES. 535 00:17:37,160 --> 00:17:38,800 ALTHOUGH THERE'S NOT A LOT OF 536 00:17:38,800 --> 00:17:40,440 AGREEMENT, SOME SAY YOU SHOULD 537 00:17:40,440 --> 00:17:42,000 DISTRIBUTE PROFITS AND BENEFITS 538 00:17:42,000 --> 00:17:43,280 IN A WAY THAT HELPS THE PEOPLE 539 00:17:43,280 --> 00:17:44,120 WORST OFF. 540 00:17:44,120 --> 00:17:45,560 OTHER PEOPLE SAY YOU GIVE PEOPLE 541 00:17:45,560 --> 00:17:46,760 WHAT THEY DESERVE. 542 00:17:46,760 --> 00:17:48,080 SO FOR INSTANCE THERE ARE 543 00:17:48,080 --> 00:17:52,400 DIFFERENT VIEWS OF WHO'S WORKED 544 00:17:52,400 --> 00:17:53,880 HARD TO GET THE PROFITS OR WHO'S 545 00:17:53,880 --> 00:17:54,880 A GOOD PERSON MORALLY SHOULD GET 546 00:17:54,880 --> 00:17:55,640 THE PROFITS. 547 00:17:55,640 --> 00:17:57,200 NOW, WHATEVER YOU THINK OF THOSE 548 00:17:57,200 --> 00:17:58,600 PRINCIPLES, I THINK IT'S FAIRLY 549 00:17:58,600 --> 00:18:02,320 CLEAR THAT THEY DON'T GOVERN 550 00:18:02,320 --> 00:18:03,440 CURRENT PRACTICE. 551 00:18:03,440 --> 00:18:04,200 CURRENT PRACTICE DOESN'T FOLLOW 552 00:18:04,200 --> 00:18:05,680 ANY OF THESE PRINCIPLES. 553 00:18:05,680 --> 00:18:07,320 SO HERE'S AN EXAMPLE. 554 00:18:07,320 --> 00:18:09,520 AS WE MENTIONED, SAMPLE DONORS 555 00:18:09,520 --> 00:18:10,960 UNDER CURRENT PRACTICE AND A LOT 556 00:18:10,960 --> 00:18:12,360 OF OTHER PEOPLE INVOLVED IN 557 00:18:12,360 --> 00:18:14,120 RESEARCH, COMPUTER TECHNICIANS, 558 00:18:14,120 --> 00:18:15,880 CLINIC NURSES, AND MANY OTHERS, 559 00:18:15,880 --> 00:18:16,920 AND MAKE IMPORTANT CONTRIBUTIONS 560 00:18:16,920 --> 00:18:20,320 TO STUDIES. 561 00:18:20,320 --> 00:18:21,440 THEY ALSO WORK HARD, I'VE WORKED 562 00:18:21,440 --> 00:18:23,320 AT THE NIH FOR A LONG TIME NOW, 563 00:18:23,320 --> 00:18:24,640 I KNOW HOW HARD THESE PEOPLE 564 00:18:24,640 --> 00:18:25,960 WORK AND A LOT OF THEM, I'VE 565 00:18:25,960 --> 00:18:27,560 FOUND, ARE VERY GOOD PEOPLE, BUT 566 00:18:27,560 --> 00:18:28,400 NONETHELESS, THEY DON'T SHARE IN 567 00:18:28,400 --> 00:18:29,880 THE PROFITS OF THE STUDIES THAT 568 00:18:29,880 --> 00:18:31,400 THEY WORK ON, WHEREAS THE 569 00:18:31,400 --> 00:18:32,960 RESEARCHERS FREQUENTLY DO. 570 00:18:32,960 --> 00:18:35,800 AND WHEN WE DETERMINE WHETHER 571 00:18:35,800 --> 00:18:36,760 RESEARCHERS SHOULD SHARE IN THE 572 00:18:36,760 --> 00:18:41,480 PROFITS, WE DON'T HAVE -- DID 573 00:18:41,480 --> 00:18:42,440 THEY WORK REALLY HARD. 574 00:18:42,440 --> 00:18:43,760 SO WHY IS IT THAT THE 575 00:18:43,760 --> 00:18:44,520 RESEARCHERS SHARE BUT THESE 576 00:18:44,520 --> 00:18:45,640 OTHER PEOPLE DON'T SHARE IN THE 577 00:18:45,640 --> 00:18:47,160 PROFITS? 578 00:18:47,160 --> 00:18:52,080 I THINK THE ANSWER HAS TO DO 579 00:18:52,080 --> 00:18:52,840 WITH THE SPECIFIC TYPE OF 580 00:18:52,840 --> 00:18:53,160 CONTRIBUTION. 581 00:18:53,160 --> 00:18:55,680 SO THE THOUGHT HERE IS THAT 582 00:18:55,680 --> 00:18:56,680 CURRENT PRACTICE DETERMINES WHO 583 00:18:56,680 --> 00:18:58,840 SHOULD SHARE IN THE PROFITS NOT 584 00:18:58,840 --> 00:19:00,360 BY ASKING THIS GENERAL QUESTION, 585 00:19:00,360 --> 00:19:01,480 WHO CONTRIBUTED IN ANY WAY TO 586 00:19:01,480 --> 00:19:04,000 THE DEVELOPMENT OF THE PROFIT? 587 00:19:04,000 --> 00:19:06,960 SO THE COMPUTER TECHNICIAN 588 00:19:06,960 --> 00:19:07,920 CONTRIBUTES, THE CLINIC NURSES 589 00:19:07,920 --> 00:19:08,800 CONTRIBUTE, LOTS OF PEOPLE 590 00:19:08,800 --> 00:19:09,880 CONTRIBUTE BUT THAT'S NOT WHAT 591 00:19:09,880 --> 00:19:10,800 DETERMINES WHO SHARES IN THE 592 00:19:10,800 --> 00:19:11,320 PROFITS. 593 00:19:11,320 --> 00:19:12,960 I SHOULD TELL YOU THAT IN MY 594 00:19:12,960 --> 00:19:14,600 VIEW, I THINK THERE'S A GOOD 595 00:19:14,600 --> 00:19:15,840 ARGUMENT THAT THOSE PEOPLE 596 00:19:15,840 --> 00:19:17,080 SHOULD BUT THAT'S AN ARGUMENT 597 00:19:17,080 --> 00:19:18,960 FOR ANOTHER DAY. 598 00:19:18,960 --> 00:19:20,200 INSTEAD I THINK WHAT CURRENT 599 00:19:20,200 --> 00:19:22,400 PRACTICE IS BASED ON IS ASKING A 600 00:19:22,400 --> 00:19:22,880 MORE SPECIFIC QUESTION. 601 00:19:22,880 --> 00:19:26,320 IT ASKS WHO CONTRIBUTES TO THE 602 00:19:26,320 --> 00:19:26,960 SPECIFIC PROPERTIES WHICH MAKE 603 00:19:26,960 --> 00:19:30,240 THE RESULTING PRODUCT VALUABLE? 604 00:19:30,240 --> 00:19:31,760 SO IMPLEMENTING THIS PRINCIPLE 605 00:19:31,760 --> 00:19:33,560 REQUIRES THAT WE ANSWER TWO 606 00:19:33,560 --> 00:19:34,240 QUESTIONS. 607 00:19:34,240 --> 00:19:35,720 WHICH PROPERTIES MAKE THE 608 00:19:35,720 --> 00:19:37,000 PRODUCT PROFITABLE AND WHO 609 00:19:37,000 --> 00:19:39,760 CONTRIBUTED TO THOSE PROPERTIES. 610 00:19:39,760 --> 00:19:41,080 SO JUST TO GIVE A RELATED 611 00:19:41,080 --> 00:19:43,040 EXAMPLE, HOW DOES THIS WORK IN 612 00:19:43,040 --> 00:19:44,800 THE CASE OF AUTHORSHIP ON 613 00:19:44,800 --> 00:19:45,080 MANUSCRIPTS? 614 00:19:45,080 --> 00:19:47,080 HOW DO WE DECIDE WHO'S AN AUTHOR 615 00:19:47,080 --> 00:19:48,840 ON A MANUSCRIPT, WHICH IS THE 616 00:19:48,840 --> 00:19:50,840 BENEFIT WITHIN ACADEMIA AND 617 00:19:50,840 --> 00:19:51,280 RESEARCH? 618 00:19:51,280 --> 00:19:53,080 WELL, WHAT WE ASK IS WE ASK 619 00:19:53,080 --> 00:19:54,000 HERE'S THE STANDARD, WHO 620 00:19:54,000 --> 00:19:56,400 CONTRIBUTED TO THE IMPORTANT 621 00:19:56,400 --> 00:19:57,280 INTELLECTUAL CONTENT THAT'S 622 00:19:57,280 --> 00:19:58,360 CONTAINED IN THE MANUSCRIPT? 623 00:19:58,360 --> 00:20:01,200 SO THE IDEA IS THAT IT'S THE 624 00:20:01,200 --> 00:20:01,880 IMPORTANT INTELLECTUAL CONTENT 625 00:20:01,880 --> 00:20:03,600 THAT'S THE VALUABLE PROPERTY OF 626 00:20:03,600 --> 00:20:05,160 A MANUSCRIPT, AND WHOEVER 627 00:20:05,160 --> 00:20:07,560 CONTRIBUTED TO THAT PROPERTY 628 00:20:07,560 --> 00:20:08,640 BECOMES AN AUTHOR ON THE 629 00:20:08,640 --> 00:20:09,120 MANUSCRIPT. 630 00:20:09,120 --> 00:20:12,880 SO THAT'S JUST ONE EXAMPLE. 631 00:20:12,880 --> 00:20:15,600 SO HERE'S SOME VERY PROMINENT 632 00:20:15,600 --> 00:20:16,800 COMMENTATORS ON THIS ISSUE. 633 00:20:16,800 --> 00:20:18,240 WHAT THEY ARGUE IS THEY ARGUE 634 00:20:18,240 --> 00:20:21,960 THAT WHAT SAMPLE DONORS DO AND 635 00:20:21,960 --> 00:20:23,040 BY IMPLICATION MANY OTHER 636 00:20:23,040 --> 00:20:24,080 MEMBERS OF THE RESEARCH AND 637 00:20:24,080 --> 00:20:26,240 CLINICAL TEAMS LIKE THE COMPUTER 638 00:20:26,240 --> 00:20:27,320 TECHNICIANS AND THE CLINIC 639 00:20:27,320 --> 00:20:28,440 NURSES, THEY DON'T CONTRIBUTE TO 640 00:20:28,440 --> 00:20:31,000 THE VALUABLE PROPERTY, INSTEAD, 641 00:20:31,000 --> 00:20:32,480 IN THE WORDS OF BOB AND HIS 642 00:20:32,480 --> 00:20:33,680 COLLEAGUES, THEY CONTRIBUTE WHAT 643 00:20:33,680 --> 00:20:35,560 THEY REGARD AS THE RAW MATERIAL. 644 00:20:35,560 --> 00:20:38,160 SO THE SAMPLES THAT CONTRIBUTED, 645 00:20:38,160 --> 00:20:42,640 THE ELECTRICITY THAT GETS 646 00:20:42,640 --> 00:20:43,520 CONTRIBUTED, THE CARE OF THE 647 00:20:43,520 --> 00:20:44,720 PATIENTS, IN A WAY THOSE ARE THE 648 00:20:44,720 --> 00:20:45,720 RAW MATERIALS ON WHICH THE 649 00:20:45,720 --> 00:20:49,120 RESEARCH IS BASED. 650 00:20:49,120 --> 00:20:50,320 THE ARGUMENT HERE IS IN 651 00:20:50,320 --> 00:20:51,520 CONTRAST, WHAT RESEARCHERS DO IS 652 00:20:51,520 --> 00:20:52,000 SOMETHING DIFFERENT. 653 00:20:52,000 --> 00:20:53,160 THEY TAKE THOSE RAW MATERIALS 654 00:20:53,160 --> 00:20:56,840 AND THEY TRANSFORM THEM INTO 655 00:20:56,840 --> 00:20:58,040 SOMETHING VALUABLE, SAY A 656 00:20:58,040 --> 00:20:59,240 VACCINE, A DRUG, AN 657 00:20:59,240 --> 00:21:01,880 INTERVENTION, A NEW SURGICAL 658 00:21:01,880 --> 00:21:04,120 TECHNIQUE, AND THAT IS WHY UNDER 659 00:21:04,120 --> 00:21:05,720 CURRENT PRACTICE, RESEARCHERS 660 00:21:05,720 --> 00:21:06,680 ALSO HAVE A CLAIM TO SHARE IN 661 00:21:06,680 --> 00:21:07,440 THE PROFITS. 662 00:21:07,440 --> 00:21:08,840 THEY CONTRIBUTE TO THE VALUABLE 663 00:21:08,840 --> 00:21:10,040 PROPERTIES OF THE RESULTING 664 00:21:10,040 --> 00:21:12,160 PRODUCT OR INTERVENTION. 665 00:21:12,160 --> 00:21:13,360 SO THE ARGUMENT I WANT TO MAKE 666 00:21:13,360 --> 00:21:14,680 IS FAIRLY STRAIGHTFORWARD. 667 00:21:14,680 --> 00:21:15,560 I WANT TO ACCEPT THAT. 668 00:21:15,560 --> 00:21:17,200 I THINK THAT IS AT LEAST ONE OF 669 00:21:17,200 --> 00:21:19,720 THE IMPORTANT PRINCIPLES THAT 670 00:21:19,720 --> 00:21:21,000 CURRENT PRACTICE USES, BUT I 671 00:21:21,000 --> 00:21:22,440 WANT TO ARGUE THAT THERE ARE 672 00:21:22,440 --> 00:21:25,480 CASES IN WHICH THE DONORS OF 673 00:21:25,480 --> 00:21:28,640 SAMPLES ACTUALLY CONTRIBUTE TO 674 00:21:28,640 --> 00:21:30,200 THE VALUABLE PROPERTIES OF THE 675 00:21:30,200 --> 00:21:30,880 RESULTING PRODUCTS. 676 00:21:30,880 --> 00:21:31,960 IN PARTICULAR, THERE ARE CASES 677 00:21:31,960 --> 00:21:33,280 WHERE WHAT THE RESEARCHES DO IS 678 00:21:33,280 --> 00:21:37,120 THEY DON'T CREATE THE VALUABLE 679 00:21:37,120 --> 00:21:37,520 PROPERTIES. 680 00:21:37,520 --> 00:21:38,720 INSTEAD THE VALUABLE PROPERTIES 681 00:21:38,720 --> 00:21:39,720 ARE PRESENT IN THE DONATED 682 00:21:39,720 --> 00:21:46,240 SAMPLE AND THE RESEARCHES -- IN 683 00:21:46,240 --> 00:21:47,720 THESE CASES THE DONORS, THROUGH 684 00:21:47,720 --> 00:21:49,360 THEIR CONTRIBUTION OF THEIR 685 00:21:49,360 --> 00:21:50,560 SAMPLES, DO, I THINK, CONTRIBUTE 686 00:21:50,560 --> 00:21:54,560 TO THE VALUABLE PROPERTIES OF 687 00:21:54,560 --> 00:21:56,120 THE FINAL PRODUCTS AND THEN 688 00:21:56,120 --> 00:21:58,200 ACCORDING TO THIS PRINCIPLE, 689 00:21:58,200 --> 00:21:59,520 THESE DONORS SHOULD SHARE IN THE 690 00:21:59,520 --> 00:22:00,600 PROFITS AS WELL. 691 00:22:00,600 --> 00:22:01,840 SO THE ANSWER TO OUR QUESTION, 692 00:22:01,840 --> 00:22:03,440 THEN, AT LEAST SOME DONORS, I 693 00:22:03,440 --> 00:22:04,760 THINK, UNDER CURRENT PRACTICE, 694 00:22:04,760 --> 00:22:09,120 SHOULD SHARE IN THE PROFITS. 695 00:22:09,120 --> 00:22:10,440 SO JUST SOME EXAMPLES COMING 696 00:22:10,440 --> 00:22:13,720 BACK TO HENRIETTA LACKS THAT I 697 00:22:13,720 --> 00:22:14,600 MENTIONED IT THE BEGINNING, 698 00:22:14,600 --> 00:22:18,000 THEY'RE CALLED HELA CELLS, WHY 699 00:22:18,000 --> 00:22:19,080 THEY'VE BECOME SO INCREDIBLY 700 00:22:19,080 --> 00:22:20,160 IMPORTANT TO SCIENTISTS IS 701 00:22:20,160 --> 00:22:22,160 BECAUSE THOSE CELLS TAKEN FROM 702 00:22:22,160 --> 00:22:24,200 HENRIETTA LACKS HAVE AN 703 00:22:24,200 --> 00:22:25,920 INCREDIBLE CAPACITY TO SURVIVE, 704 00:22:25,920 --> 00:22:28,040 THAT THE RESEARCHERS NEVER 705 00:22:28,040 --> 00:22:28,960 HAVING SEEN IN THE HISTORY OF 706 00:22:28,960 --> 00:22:29,720 THEIR CAREERS BEFORE. 707 00:22:29,720 --> 00:22:32,320 THAT WAS A CAPACITY THE 708 00:22:32,320 --> 00:22:33,200 RESEARCHERS DIDN'T CREATE. 709 00:22:33,200 --> 00:22:34,200 IT WAS PRESENT IN THE CELLS THAT 710 00:22:34,200 --> 00:22:36,160 WERE TAKEN FROM HENRIETTA LACKS. 711 00:22:36,160 --> 00:22:39,440 TO GIVE YOU ANOTHER EXAMPLE, 712 00:22:39,440 --> 00:22:41,280 THERE ARE PEOPLE CALLED LONG 713 00:22:41,280 --> 00:22:43,320 TERM NON-PROGRESSORS, 714 00:22:43,320 --> 00:22:44,560 INDIVIDUALS WHO HAVE HIV FOR 715 00:22:44,560 --> 00:22:46,000 DECADES, THEY DON'T GET ANY 716 00:22:46,000 --> 00:22:47,120 TREATMENT AND NONETHELESS, THEY 717 00:22:47,120 --> 00:22:48,840 DON'T GET SICK, THEY DON'T EVEN 718 00:22:48,840 --> 00:22:50,600 GET SYMPTOMATIC, AND THE REASON 719 00:22:50,600 --> 00:22:52,680 IS THAT THEIR IMMUNE SYSTEM IS 720 00:22:52,680 --> 00:22:53,880 DOING SOMETHING THAT THE IMMUNE 721 00:22:53,880 --> 00:22:55,440 SYSTEM OF THE AVERAGE PERSON 722 00:22:55,440 --> 00:22:57,280 DOESN'T DO, MAINLY, IT FIGHTS 723 00:22:57,280 --> 00:22:58,360 OFF HIV. 724 00:22:58,360 --> 00:23:00,640 SO WHAT RESEARCHERS ARE DOING IS 725 00:23:00,640 --> 00:23:01,520 SOMETHING CLEVER. 726 00:23:01,520 --> 00:23:02,520 THEY GET CELLS FROM THOSE 727 00:23:02,520 --> 00:23:03,920 INDIVIDUALS AND THEN THEY ASK 728 00:23:03,920 --> 00:23:05,160 THEMSELVES, OKAY, WHAT'S GOING 729 00:23:05,160 --> 00:23:08,960 ON IN THE IMMUNE CELLS OF THESE 730 00:23:08,960 --> 00:23:09,840 INDIVIDUALS THAT'S FIGHTING OFF 731 00:23:09,840 --> 00:23:10,160 HIV. 732 00:23:10,160 --> 00:23:11,600 IF WE CAN IDENTIFY THAT AND TAKE 733 00:23:11,600 --> 00:23:12,880 ADVANTAGE OF IT, WE CAN THEN 734 00:23:12,880 --> 00:23:15,080 DEVELOP VACCINES AND TREATMENTS 735 00:23:15,080 --> 00:23:15,640 FOR HIV. 736 00:23:15,640 --> 00:23:18,600 SO THAT'S A REALLY WONDERFUL 737 00:23:18,600 --> 00:23:18,920 IDEA. 738 00:23:18,920 --> 00:23:20,680 IF IT SUCCEEDS, WE'RE GOING TO 739 00:23:20,680 --> 00:23:21,880 HAVE GREAT TREATMENTS THAT COULD 740 00:23:21,880 --> 00:23:23,640 BE VERY PROFITABLE, AND THOSE 741 00:23:23,640 --> 00:23:25,480 CASES, AGAIN, THOSE INDIVIDUALS 742 00:23:25,480 --> 00:23:28,960 GIVEN THE CAPACITY OF THEIR 743 00:23:28,960 --> 00:23:35,120 CELLS CONTRIBUTE TO PROFITS. 744 00:23:35,120 --> 00:23:37,640 IF THE RESEARCHERS DO -- IT 745 00:23:37,640 --> 00:23:40,480 TURNS OUT WE'LL NEVER KNOW, IF 746 00:23:40,480 --> 00:23:41,880 IT TURNS OUT THOSE PROPERTIES 747 00:23:41,880 --> 00:23:46,160 MAKE THOSE CELLS -- AND IF 748 00:23:46,160 --> 00:23:47,240 RESEARCHERS ARE ABLE TO 749 00:23:47,240 --> 00:23:49,080 TRANSFORM THOSE PROPERTIES INTO 750 00:23:49,080 --> 00:23:50,440 A VACCINE THAT'S SUCCESSFUL AND 751 00:23:50,440 --> 00:23:51,640 MAKES A LOT OF PROFITS, THEN I 752 00:23:51,640 --> 00:23:53,600 THINK THAT RESEARCHER DOES HAVE 753 00:23:53,600 --> 00:23:55,440 SOME CLAIM TO SHARE IN THE 754 00:23:55,440 --> 00:23:57,320 PROFITS THAT RESULT. 755 00:23:57,320 --> 00:23:59,600 SO IN SUMMARY, UNDER CURRENT 756 00:23:59,600 --> 00:24:00,280 PRACTICE, INDIVIDUALS WHO 757 00:24:00,280 --> 00:24:02,680 CONTRIBUTE TO THE VALUABLE 758 00:24:02,680 --> 00:24:03,720 PROPERTY OF RESULTING PROFITS, 759 00:24:03,720 --> 00:24:04,640 THOSE ARE THE ONES WHO SHARE IN 760 00:24:04,640 --> 00:24:07,600 THE PROFITS AND I'M -- IN SOME 761 00:24:07,600 --> 00:24:11,000 CASES THIS PRINCIPLE SUGGESTS 762 00:24:11,000 --> 00:24:12,280 THAT SAMPLE DONORS SHOULD AS 763 00:24:12,280 --> 00:24:12,840 WELL. 764 00:24:12,840 --> 00:24:14,040 THERE ARE LOTS OF QUESTIONS HERE 765 00:24:14,040 --> 00:24:15,880 I'M NOT GOING TO BE ABLE TO GET 766 00:24:15,880 --> 00:24:17,320 TO, HOW BIG OF A SHARE, HOW DOES 767 00:24:17,320 --> 00:24:18,760 THE SIZE OF THE SHARE OF DONORS 768 00:24:18,760 --> 00:24:20,640 COMPARE TO RESEARCHERS, 769 00:24:20,640 --> 00:24:21,680 INVESTORS, THE COMPANY, LOTS OF 770 00:24:21,680 --> 00:24:22,360 OTHER PEOPLE? 771 00:24:22,360 --> 00:24:25,200 I DON'T KNOW. 772 00:24:25,200 --> 00:24:25,840 THE ANSWERS TO 773 00:24:25,840 --> 00:24:26,520 THOSE QUESTIONS. 774 00:24:26,520 --> 00:24:28,280 THOSE ARE THINGS WE'RE GOING TO 775 00:24:28,280 --> 00:24:29,800 HAVE TO FIGURE OUT IN FUTURE 776 00:24:29,800 --> 00:24:30,120 RESEARCH. 777 00:24:30,120 --> 00:24:35,240 THANK YOU. 778 00:24:35,240 --> 00:24:37,440 >>IT'S A REAL THRILL TO BE HERE 779 00:24:37,440 --> 00:24:37,880 WITH EVERYBODY. 780 00:24:37,880 --> 00:24:38,680 THANK YOU FOR HAVING ME. 781 00:24:38,680 --> 00:24:40,400 I DON'T HAVE ANY SLIDES, YOU'RE 782 00:24:40,400 --> 00:24:42,600 GOING TO HAVE TO STARE AT ME 783 00:24:42,600 --> 00:24:43,240 UNFORTUNATELY OR FORTUNATELY, 784 00:24:43,240 --> 00:24:44,240 YOU CAN DECIDE. 785 00:24:44,240 --> 00:24:45,320 START WITH DISCLOSURES. 786 00:24:45,320 --> 00:24:49,480 I'VE SERVED AS A CONSULTANT 787 00:24:49,480 --> 00:24:55,280 FOR -- FARM SE FA PHARMACEUTICAE 788 00:24:55,280 --> 00:24:56,480 ARE ALL IN THE PAST. 789 00:24:56,480 --> 00:25:00,200 I CURRENTLY SIT ON THE ADVISORY 790 00:25:00,200 --> 00:25:01,640 BOARD -- THE VIEWS EXPRESSED ARE 791 00:25:01,640 --> 00:25:02,160 MINE ALONE. 792 00:25:02,160 --> 00:25:04,040 SO I WANT TO START TO JUST 793 00:25:04,040 --> 00:25:05,560 CLEARLY STAKEOUT IN TERMS OF THE 794 00:25:05,560 --> 00:25:07,120 QUESTIONS WE'RE ASKING. 795 00:25:07,120 --> 00:25:09,120 FIRST IS A LEGAL MATTER, I DON'T 796 00:25:09,120 --> 00:25:10,160 THINK ANYBODY IS SUGGESTING THAT 797 00:25:10,160 --> 00:25:12,560 ANYTHING IN THE LAW OR THE RULE 798 00:25:12,560 --> 00:25:15,080 OUR MAIN RESEARCH REGULATION 799 00:25:15,080 --> 00:25:16,280 TOOL IN THE UNITED STATES 800 00:25:16,280 --> 00:25:17,040 REQUIRES PROFIT SHARING. 801 00:25:17,040 --> 00:25:19,560 SO WE'RE REALLY NOT IN THE LEGAL 802 00:25:19,560 --> 00:25:22,640 REGULATORY BUCKET AT THE MOMENT, 803 00:25:22,640 --> 00:25:23,600 THE ETHICAL QUESTION, WOULD IT 804 00:25:23,600 --> 00:25:25,800 BE GOOD TO REVISE THESE OR WOULD 805 00:25:25,800 --> 00:25:27,120 IT BE GOOD ETHICALLY TO HAVE 806 00:25:27,120 --> 00:25:28,960 PROFIT SHARING FOR PARTICIPANTS? 807 00:25:28,960 --> 00:25:30,800 OTHERWISE PUT, IF YOU'RE UP 808 00:25:30,800 --> 00:25:33,000 FRONT IN YOUR INFORMED CONSENT 809 00:25:33,000 --> 00:25:34,000 CURRENTLY ABOUT THAT YOU'RE NOT 810 00:25:34,000 --> 00:25:35,960 GOING TO PROFIT-SHARE, IT'S HARD 811 00:25:35,960 --> 00:25:37,280 TO SEE HOW YOU RUN INTO A 812 00:25:37,280 --> 00:25:37,520 PROBLEM. 813 00:25:37,520 --> 00:25:39,280 WE'RE REALLY TALKING ABOUT 814 00:25:39,280 --> 00:25:40,000 REVISION. 815 00:25:40,000 --> 00:25:40,560 THE SECOND POINT OF 816 00:25:40,560 --> 00:25:42,120 CLARIFICATION IS JUST TO SAY, I 817 00:25:42,120 --> 00:25:43,840 THINK WE'RE TALKING ABOUT A 818 00:25:43,840 --> 00:25:45,040 REQUIREMENT NOT A PREROGATIVE. 819 00:25:45,040 --> 00:25:47,000 SO WHAT DO I MEAN BY THAT? 820 00:25:47,000 --> 00:25:48,680 I DON'T THINK MY POSITION IS 821 00:25:48,680 --> 00:25:50,720 THAT SUCH PROFIT SHARING SHOULD 822 00:25:50,720 --> 00:25:54,240 BE IMPERMISSIBLE, THOUGH I'LL 823 00:25:54,240 --> 00:25:55,080 GESTURE SOME REASONS WHY WE 824 00:25:55,080 --> 00:25:56,080 THINK IT MIGHT BE AN AREA OF 825 00:25:56,080 --> 00:25:57,200 CONCERN IN SOME CASES. 826 00:25:57,200 --> 00:25:59,680 INSTEAD I THINK THE ISSUE THAT 827 00:25:59,680 --> 00:26:01,560 DR. WENDLER SO NICELY TEED UP IS 828 00:26:01,560 --> 00:26:02,560 WHETHER IT SHOULD BE REQUIRED 829 00:26:02,560 --> 00:26:03,400 AND UNDER WHAT CONDITION. 830 00:26:03,400 --> 00:26:05,200 SO IF I'M RIGHT, WE'RE TALKING 831 00:26:05,200 --> 00:26:06,840 ABOUT ETHICS, NOT LAW OR 832 00:26:06,840 --> 00:26:07,720 REGULATION, AND WE'RE TALKING 833 00:26:07,720 --> 00:26:09,120 ABOUT WHAT'S ETHICALLY REQUIRED 834 00:26:09,120 --> 00:26:11,640 OR NOT. 835 00:26:11,640 --> 00:26:12,960 NOW BACK TO THE STARTING CASE 836 00:26:12,960 --> 00:26:14,480 THAT DR. COHEN PRESENTED TO US. 837 00:26:14,480 --> 00:26:16,360 IT'S A WONDERFULLY UNUSUAL CASE 838 00:26:16,360 --> 00:26:18,000 AND JUST TO AGE MYSELF, I'M 839 00:26:18,000 --> 00:26:21,680 GOING TO REFERENCE A FAMOUS 840 00:26:21,680 --> 00:26:22,840 1980s COMMERCIAL FOR THE HAIR 841 00:26:22,840 --> 00:26:23,760 CLUB FOR MEN WHERE THEY'RE 842 00:26:23,760 --> 00:26:25,640 SELLING YOU ON THIS THING TO 843 00:26:25,640 --> 00:26:27,400 RE-GROW YOUR HAIR OR A WIG, I 844 00:26:27,400 --> 00:26:28,240 CAN'T QUITE REMEMBER, AND THE 845 00:26:28,240 --> 00:26:29,560 GUY SAYS AT THE END, I'M NOT 846 00:26:29,560 --> 00:26:31,640 JUST THE PRESIDENT, I'M ALSO A 847 00:26:31,640 --> 00:26:31,880 CLIENT! 848 00:26:31,880 --> 00:26:33,280 AND WHAT I LOVE ABOUT THIS CASE 849 00:26:33,280 --> 00:26:34,840 IS WE HAVE A SIMILAR KIND OF 850 00:26:34,840 --> 00:26:36,760 RELATIONSHIP HERE. 851 00:26:36,760 --> 00:26:38,440 I'M NOT JUST THE P.I., BUT I'M 852 00:26:38,440 --> 00:26:40,080 ALSO A RESEARCH PARTICIPANT. 853 00:26:40,080 --> 00:26:42,560 AND ACTUALLY, IT FLAGS SOME VERY 854 00:26:42,560 --> 00:26:44,440 INTERESTING QUESTIONS ON 855 00:26:44,440 --> 00:26:46,160 SELF-EX-PAIR MENTATION, ITS 856 00:26:46,160 --> 00:26:47,520 HISTORY THAT'S NOT OUR TOPIC 857 00:26:47,520 --> 00:26:48,840 TODAY BUT I JUST WANT TO GESTURE 858 00:26:48,840 --> 00:26:49,360 AT THAT. 859 00:26:49,360 --> 00:26:51,560 BUT WHAT'S SO NICE ABOUT IT AS A 860 00:26:51,560 --> 00:26:54,520 CASE STUDY IS IT REALLY NICELY 861 00:26:54,520 --> 00:26:56,480 ILLUSTRATES THE PUZZLE THAT 862 00:26:56,480 --> 00:26:57,440 DR. WENDLER SUGGESTED. 863 00:26:57,440 --> 00:27:00,280 THE P.I. WILL BE COMPENSATED FOR 864 00:27:00,280 --> 00:27:02,840 HIS WORK AS A SCIENTIST, AS A 865 00:27:02,840 --> 00:27:05,880 P.I., BY PROFIT SHARING. 866 00:27:05,880 --> 00:27:07,520 WHY SHOULD HE NOT ALSO BE 867 00:27:07,520 --> 00:27:09,120 COMPENSATED FOR HIS, 868 00:27:09,120 --> 00:27:10,080 QUOTE-UNQUOTE, WORK AS A 869 00:27:10,080 --> 00:27:10,720 RESEARCH PARTICIPANT. 870 00:27:10,720 --> 00:27:12,680 BUT IF HE SHOULD BE, WHY 871 00:27:12,680 --> 00:27:14,320 SHOULDN'T ALL OTHER, 872 00:27:14,320 --> 00:27:18,280 QUOTE-UNQUOTE, WOARKERS, WORKES 873 00:27:18,280 --> 00:27:20,200 EVERY RESEARCH PARTICIPANT ALSO 874 00:27:20,200 --> 00:27:20,760 BE COMPENSATED? 875 00:27:20,760 --> 00:27:22,320 BUT IN FACT, SHOULD PARTICIPANTS 876 00:27:22,320 --> 00:27:23,840 BE COMPENSATED IS NOT QUITE THE 877 00:27:23,840 --> 00:27:25,800 QUESTION RAISED BY THE CASE. 878 00:27:25,800 --> 00:27:27,360 THE QUESTION IS NOT DO RESEARCH 879 00:27:27,360 --> 00:27:28,400 PARTICIPANTS DESERVE 880 00:27:28,400 --> 00:27:28,760 COMPENSATION. 881 00:27:28,760 --> 00:27:30,200 BUT INSTEAD, TO BORROW THE 882 00:27:30,200 --> 00:27:32,600 LANGUAGE FROM DR. COHEN'S SLIDE, 883 00:27:32,600 --> 00:27:34,320 SHOULD THEY, QUOTE, SHARE IN THE 884 00:27:34,320 --> 00:27:37,040 PROFITS OF STUDIES TO WHICH THEY 885 00:27:37,040 --> 00:27:37,360 CONTRIBUTE? 886 00:27:37,360 --> 00:27:38,480 IT'S COMMONPLACE FOR 887 00:27:38,480 --> 00:27:39,680 PARTICIPANTS TO BE PAID FOR 888 00:27:39,680 --> 00:27:41,560 PARTICIPATION IN VARIOUS TRIALS. 889 00:27:41,560 --> 00:27:42,880 THERE'S LOTS OF INTERESTING 890 00:27:42,880 --> 00:27:46,360 QUESTIONS ABOUT EXACTLY WHAT 891 00:27:46,360 --> 00:27:47,560 COMPENSATION, IS THERE UNDUE 892 00:27:47,560 --> 00:27:48,240 INDUCEMENT, ET CETERA. 893 00:27:48,240 --> 00:27:49,520 BUT ORDINARILY, THAT 894 00:27:49,520 --> 00:27:50,520 COMPENSATION DOES NOT TAKE THE 895 00:27:50,520 --> 00:27:52,080 FORM OF A PIECE OF THE ACTION, 896 00:27:52,080 --> 00:27:53,800 IF YOU WILL. 897 00:27:53,800 --> 00:27:55,240 THUS THE QUESTION TEED UP IS 898 00:27:55,240 --> 00:27:57,080 REALLY NOW CLARIFIED, WHY SHOULD 899 00:27:57,080 --> 00:27:58,840 THE P.I. BE COMPENSATED THROUGH 900 00:27:58,840 --> 00:28:00,600 A SHARE IN THE PROFITS OF 901 00:28:00,600 --> 00:28:02,480 STUDIES TO WHICH HE CONTRIBUTES, 902 00:28:02,480 --> 00:28:05,320 BUT RESEARCH PARTICIPANTS ONLY 903 00:28:05,320 --> 00:28:07,280 COMPENSATED THROUGH OTHER MEANS, 904 00:28:07,280 --> 00:28:10,360 MEANS OTHER THAN PROFIT SHARING? 905 00:28:10,360 --> 00:28:13,720 SO WHEN YOU PUT IT THIS WAY, I 906 00:28:13,720 --> 00:28:15,280 THINK IT'S NOT QUITE AS PUZZLING 907 00:28:15,280 --> 00:28:16,480 AS IT STARTS OUT WHEN YOU DON'T 908 00:28:16,480 --> 00:28:17,480 PUT IT THIS WAY. 909 00:28:17,480 --> 00:28:20,120 TO SEE WHY, FIRST RECOGNIZE THE 910 00:28:20,120 --> 00:28:23,040 WORLD IS NOT BISECTED BETWEEN 911 00:28:23,040 --> 00:28:25,000 THE P.I. AND RESEARCH STAFF ON 912 00:28:25,000 --> 00:28:26,040 ONE HAND AND THE PARTICIPANTS IN 913 00:28:26,040 --> 00:28:27,120 THE OTHER. 914 00:28:27,120 --> 00:28:29,160 IN THAT MOST OF THE RESEARCH 915 00:28:29,160 --> 00:28:31,000 STAFF AS DR. WENDLER SUGGESTED 916 00:28:31,000 --> 00:28:32,560 ARE ALSO NOT GIVEN PROFIT 917 00:28:32,560 --> 00:28:33,040 SHARING. 918 00:28:33,040 --> 00:28:34,760 MOST STUDY COORDINATORS, MOST 919 00:28:34,760 --> 00:28:36,080 FOLKS WHO ARE EMPLOYED IN 920 00:28:36,080 --> 00:28:37,040 RESEARCH DON'T GET PROFIT 921 00:28:37,040 --> 00:28:38,240 SHARING. 922 00:28:38,240 --> 00:28:39,440 INSTEAD, THEY'RE COMPENSATED BY 923 00:28:39,440 --> 00:28:40,640 SALARY. 924 00:28:40,640 --> 00:28:42,200 AND INDEED, THIS IS NOT UNUSUAL 925 00:28:42,200 --> 00:28:43,240 OUTSIDE RESEARCH. 926 00:28:43,240 --> 00:28:46,320 IF WE LOOK AT LARGE 927 00:28:46,320 --> 00:28:47,520 CORPORATIONS, WHILE C-SUITE 928 00:28:47,520 --> 00:28:48,720 EXECUTIVES ARE OFTEN COMPENSATED 929 00:28:48,720 --> 00:28:51,040 WITH PROFIT SHARING, MOST OF THE 930 00:28:51,040 --> 00:28:53,520 PEOPLE WHO ARE PART OF A 931 00:28:53,520 --> 00:28:56,520 CORPORATION ARE PAID ON SALARY. 932 00:28:56,520 --> 00:28:58,040 SO WE MIGHT REFRAME THE QUESTION 933 00:28:58,040 --> 00:29:00,880 IS WHY WE HAVE PROFIT SHARING AT 934 00:29:00,880 --> 00:29:02,520 ALL? 935 00:29:02,520 --> 00:29:04,720 ONE ANSWER THE LAW AND ECONOMIC 936 00:29:04,720 --> 00:29:06,000 TYPES WOULD LIKE, I THINK, IS 937 00:29:06,000 --> 00:29:07,320 THE QUESTION OF PRINCIPAL AGE 938 00:29:07,320 --> 00:29:08,840 INTENTION AND THE ALIGNING OF 939 00:29:08,840 --> 00:29:09,840 INCENTIVES. 940 00:29:09,840 --> 00:29:11,040 WE GIVE INDIVIDUALS A SHARE OF 941 00:29:11,040 --> 00:29:14,240 THE PROFITS RATHER THAN FLAT 942 00:29:14,240 --> 00:29:15,240 COMPENSATION WHEN IT WILL CAUSE 943 00:29:15,240 --> 00:29:17,720 THEM TO PURSUE BEHAVIOR IN A WAY 944 00:29:17,720 --> 00:29:19,160 THAT IS WELL ALIGNED WITH OUR 945 00:29:19,160 --> 00:29:20,680 GOAL, EITHER OUR PRIVATE GOAL OR 946 00:29:20,680 --> 00:29:21,680 A SOCIAL GOAL. 947 00:29:21,680 --> 00:29:24,120 IN THE CASE OF THE CEO, THE 948 00:29:24,120 --> 00:29:25,720 PROFIT SHARING IS ARGUED TO 949 00:29:25,720 --> 00:29:27,800 ALIGN BETTER WITH SHAREHOLDERS 950 00:29:27,800 --> 00:29:31,840 AND THEIR INTERESTS, IN A WAY 951 00:29:31,840 --> 00:29:33,040 OF -- CEO BEHAVIOR. 952 00:29:33,040 --> 00:29:34,160 THERE'S AN IDEA OF SKIN IN THE 953 00:29:34,160 --> 00:29:35,000 GAME, IF YOU WILL. 954 00:29:35,000 --> 00:29:36,120 SIMILARLY WHEN YOU'RE A REALTOR, 955 00:29:36,120 --> 00:29:37,960 IF YOU'VE SOLD A HOUSE, IT'S A 956 00:29:37,960 --> 00:29:40,600 PERCENTAGE OF THE SALE PRICE, 957 00:29:40,600 --> 00:29:41,440 ARGUABLY THAT'S MEANT TO DO THE 958 00:29:41,440 --> 00:29:42,880 SAME THING, TO ALIGN THE 959 00:29:42,880 --> 00:29:45,520 INCENTIVE OF THE REALTOR WITH 960 00:29:45,520 --> 00:29:46,600 YOU, THE PERSON WHO'S HIRED 961 00:29:46,600 --> 00:29:47,040 THEM. 962 00:29:47,040 --> 00:29:48,440 ALL THESE, THOUGH, ASSUME THE 963 00:29:48,440 --> 00:29:50,520 FORM OF COMPENSATION WILL 964 00:29:50,520 --> 00:29:51,200 ACTUALLY ALTER BEHAVIOR. 965 00:29:51,200 --> 00:29:53,600 THAT IS, IF WE GIVE SOMEONE 966 00:29:53,600 --> 00:29:55,000 PROFIT SHARING, WE GET A 967 00:29:55,000 --> 00:29:56,240 DIFFERENT KIND OF BEHAVIOR THAN 968 00:29:56,240 --> 00:29:56,880 IF WE DON'T. 969 00:29:56,880 --> 00:29:59,320 THAT RAISES THE QUESTION ABOUT 970 00:29:59,320 --> 00:30:01,920 WHETHER BEHAVIORAL ALTERATIONS 971 00:30:01,920 --> 00:30:03,240 FORMED BY PROFIT SHARING ARE 972 00:30:03,240 --> 00:30:03,520 DESIRABLE. 973 00:30:03,520 --> 00:30:04,880 NOW WE IMMEDIATELY SEE WHEN WE 974 00:30:04,880 --> 00:30:06,600 FRAME IT THIS WAY SOME WORRIES 975 00:30:06,600 --> 00:30:08,800 ABOUT PROFIT SHARING WITH SOME 976 00:30:08,800 --> 00:30:10,120 RESEARCH STAFF MEMBERS. 977 00:30:10,120 --> 00:30:12,200 AND THERE'S SOME RESEARCH ETHICS 978 00:30:12,200 --> 00:30:13,200 LITERATURE RELATED TO ROW 979 00:30:13,200 --> 00:30:16,920 KREUTMENT BONUSES AND BALLOON 980 00:30:16,920 --> 00:30:17,880 PAYMENTS THAT I THINK KIND OF 981 00:30:17,880 --> 00:30:18,520 REFERENCE THIS. 982 00:30:18,520 --> 00:30:20,280 IF AS A RESEARCH STAFF MEMBER 983 00:30:20,280 --> 00:30:20,960 YOUR COMPENSATION DEPENDS ON 984 00:30:20,960 --> 00:30:22,920 WHETHER THE TRIAL DOES OR DOES 985 00:30:22,920 --> 00:30:26,760 NOT RECRUIT X NUMBER OF PATIENTS 986 00:30:26,760 --> 00:30:29,480 BY WIDE DATE, THAT CREATES AN 987 00:30:29,480 --> 00:30:30,480 INCENTIVE TO RECRUIT MORE 988 00:30:30,480 --> 00:30:31,440 PATIENTS. 989 00:30:31,440 --> 00:30:33,080 THAT INCENTIVE MAY OR MAY NOT 990 00:30:33,080 --> 00:30:35,280 LEAD YOU TO BEHAVIOR THAT NOW 991 00:30:35,280 --> 00:30:36,280 MISALIGNS YOU WITH THE BEST 992 00:30:36,280 --> 00:30:38,040 INTEREST OF PARTICIPANTS, EITHER 993 00:30:38,040 --> 00:30:39,320 INTENTIONALLY OR LESS SO. 994 00:30:39,320 --> 00:30:40,640 FOR EXAMPLE, MAYBE YOU HAVE AN 995 00:30:40,640 --> 00:30:43,240 INCENTIVE TO SCRIMP OUR DOWNPLAY 996 00:30:43,240 --> 00:30:44,600 ON RISK RELATED TO INFORMED 997 00:30:44,600 --> 00:30:45,640 CONSENT TO MEET YOUR TARGET. 998 00:30:45,640 --> 00:30:47,200 SO WE ACTUALLY HAVE AN INCENTIVE 999 00:30:47,200 --> 00:30:49,400 THAT'S NOT ALIGNING WELL WITH 1000 00:30:49,400 --> 00:30:50,800 WHAT WE WANT TO ACHIEVE. 1001 00:30:50,800 --> 00:30:52,880 WHAT THE ALIGNMENT INCENTIVE TO 1002 00:30:52,880 --> 00:30:54,200 ALTER THE BEHAVIOR OF RESEARCH 1003 00:30:54,200 --> 00:30:55,280 PARTICIPANTS IF THEY GET A 1004 00:30:55,280 --> 00:30:56,480 PROFIT SHARE? 1005 00:30:56,480 --> 00:31:00,200 SO LET'S TAKE THE TISSUE SAMPLE 1006 00:31:00,200 --> 00:31:02,720 CASE, EITHER DR. COHEN'S OR THE 1007 00:31:02,720 --> 00:31:04,280 HELA CASE. 1008 00:31:04,280 --> 00:31:05,560 NOTICE ONE YOU'VE GIVEN YOUR 1009 00:31:05,560 --> 00:31:07,120 SAMPLE, THE ABILITY TO STEER THE 1010 00:31:07,120 --> 00:31:08,200 ENTERPRISE TOWARDS PROFIT OR NOT 1011 00:31:08,200 --> 00:31:10,480 IS OVER. 1012 00:31:10,480 --> 00:31:14,120 THERE'S ACTUALLY NO BEHAVIOR TO 1013 00:31:14,120 --> 00:31:14,960 INCENTIVIZE. 1014 00:31:14,960 --> 00:31:16,520 PROFIT SHARING BY DEFINITION CAN 1015 00:31:16,520 --> 00:31:17,600 ALIGN YOUR BEHAVIOR WITH THE 1016 00:31:17,600 --> 00:31:18,920 SOCIAL OR PRIVATE GOAL BECAUSE 1017 00:31:18,920 --> 00:31:20,680 THERE'S NO BEHAVIOR TO 1018 00:31:20,680 --> 00:31:21,640 INCENTIVIZE POST PROVISION OF 1019 00:31:21,640 --> 00:31:22,280 TISSUE. 1020 00:31:22,280 --> 00:31:23,840 SO IF ANYTHING, TISSUE SAMPLES 1021 00:31:23,840 --> 00:31:25,920 IS A PARTICULARLY WEAK SETTING 1022 00:31:25,920 --> 00:31:28,760 FOR AN ARGUMENT THAT PROFIT 1023 00:31:28,760 --> 00:31:30,280 SHARING ISN'T REQUIRED AS A WAY 1024 00:31:30,280 --> 00:31:31,840 TO ALIGN INCENTIVE. 1025 00:31:31,840 --> 00:31:33,800 NOW TRIALS THAT REQUIRE EFFORT 1026 00:31:33,800 --> 00:31:36,520 FROM PARTICIPANTS MIGHT BE MORE 1027 00:31:36,520 --> 00:31:38,160 APPROPRIATE SETTINGS FOR PROFIT 1028 00:31:38,160 --> 00:31:39,040 SHARING BUT AGAIN YOU MIGHT 1029 00:31:39,040 --> 00:31:41,120 WORRY THAT THE PROFIT SHARING 1030 00:31:41,120 --> 00:31:42,120 MIGHT SKEW BEHAVIOR IN A WAY 1031 00:31:42,120 --> 00:31:44,400 THAT MAKES THE TRIAL LESS GOOD. 1032 00:31:44,400 --> 00:31:46,280 OR MAKES THE EVIDENCE GENERATED 1033 00:31:46,280 --> 00:31:48,240 LESS EEK LOGICALLY VALID AS TO 1034 00:31:48,240 --> 00:31:49,960 END STATE PATIENTS IF THOSE SAME 1035 00:31:49,960 --> 00:31:52,040 INCENTIVES WON'T PERSIST FOR THE 1036 00:31:52,040 --> 00:31:53,720 POPULATION POST TRIAL. 1037 00:31:53,720 --> 00:31:55,440 AT BEST, IT SEEMS TO ME PROFIT 1038 00:31:55,440 --> 00:31:59,400 SHARING COULD BE JUSTIFIED BY -- 1039 00:31:59,400 --> 00:32:00,160 RECRUITMENT FOR THE TRIAL BUT 1040 00:32:00,160 --> 00:32:02,880 THEN THE ETHICAL OOMPH FOR DOING 1041 00:32:02,880 --> 00:32:06,160 IT WOULD BE FROM THE ETHICAL 1042 00:32:06,160 --> 00:32:07,280 IMPERATIVE TO RECRUIT TO 1043 00:32:07,280 --> 00:32:08,360 COMPLETION OR RECRUIT MORE 1044 00:32:08,360 --> 00:32:09,560 IMIKLY, NOT FROM THE PROFIT 1045 00:32:09,560 --> 00:32:10,080 SHARING AS SUCH. 1046 00:32:10,080 --> 00:32:11,520 AS COMPARED TO OTHER FORMS OF 1047 00:32:11,520 --> 00:32:13,160 INCENTIVES YOU MIGHT GIVE TO 1048 00:32:13,160 --> 00:32:14,400 ACHIEVE THE SAME THING, PROFIT 1049 00:32:14,400 --> 00:32:16,320 SHARING MIGHT BE PARTICULARLY 1050 00:32:16,320 --> 00:32:16,680 BAD. 1051 00:32:16,680 --> 00:32:18,200 WHY DO I SAY THAT? 1052 00:32:18,200 --> 00:32:19,960 WELL, I DON'T THINK SUCH PROFIT 1053 00:32:19,960 --> 00:32:21,120 SHARING FOR PATIENTS WOULD BE 1054 00:32:21,120 --> 00:32:23,000 PER SE IMPERMISSIBLE, I DO WANT 1055 00:32:23,000 --> 00:32:24,640 TO ACKNOWLEDGE THAT THERE MAY BE 1056 00:32:24,640 --> 00:32:26,320 SOME WHO PARTWAYS FROM BEYOND 1057 00:32:26,320 --> 00:32:27,960 THIS BECAUSE THEY'RE WORRIED 1058 00:32:27,960 --> 00:32:29,160 ABOUT UNDUE INDUCEMENT AND IN 1059 00:32:29,160 --> 00:32:30,680 SOME INSTANCES, PROFIT SHARING 1060 00:32:30,680 --> 00:32:31,680 MAY PRODUCE A LEVEL OF 1061 00:32:31,680 --> 00:32:33,840 COMPENSATION THAT WE COULD VIEW 1062 00:32:33,840 --> 00:32:35,080 AS UNDUE INDUCEMENT. 1063 00:32:35,080 --> 00:32:36,640 I'LL ALSO ADD AS A PRACTICAL 1064 00:32:36,640 --> 00:32:38,360 MATTER, UNLIKE REVIEWING A FLAT 1065 00:32:38,360 --> 00:32:39,560 COMPENSATION FOR A CHALLENGE 1066 00:32:39,560 --> 00:32:44,920 TRIAL OR OTHER KIND OF TRIAL, AN 1067 00:32:44,920 --> 00:32:45,560 INSTITUTIONAL REVIEW BOARD MAY 1068 00:32:45,560 --> 00:32:47,000 AT TIME OF APPROVAL MAY HAVE A 1069 00:32:47,000 --> 00:32:47,960 HARD TIME FIGURING OUT WHAT THE 1070 00:32:47,960 --> 00:32:49,560 COMPENSATION OF A PROFIT SHARING 1071 00:32:49,560 --> 00:32:50,720 RANGE MAY ACTUALLY BE BECAUSE 1072 00:32:50,720 --> 00:32:52,040 THE DRUG HASN'T GONE TO MARKET, 1073 00:32:52,040 --> 00:32:53,560 WE DON'T KNOW IF IT'S GOING TO 1074 00:32:53,560 --> 00:32:53,920 BE SUCCESSFUL. 1075 00:32:53,920 --> 00:32:55,760 SUCH THAT IF WE'RE WORRIED ABOUT 1076 00:32:55,760 --> 00:32:57,560 UNDUE INDUCEMENT, THE IRB MAY 1077 00:32:57,560 --> 00:33:00,920 NOT KNOW WHAT THE LEVEL OF 1078 00:33:00,920 --> 00:33:03,760 INDUCEMENT IS BY OFFERING PROFIT 1079 00:33:03,760 --> 00:33:05,400 SHARING UNLESS WE OFFER SOME 1080 00:33:05,400 --> 00:33:06,480 KIND OF STEALING AND THAT'S A 1081 00:33:06,480 --> 00:33:09,040 LITTLE BIT OF THE INTENTION WITH 1082 00:33:09,040 --> 00:33:10,440 PROFIT SHARING MOTIVES TO BEGIN 1083 00:33:10,440 --> 00:33:11,520 WITH. 1084 00:33:11,520 --> 00:33:12,480 THERE ARE ALSO SOME THAT MIGHT 1085 00:33:12,480 --> 00:33:14,600 WORRY THAT RESEARCH PARTICIPANTS 1086 00:33:14,600 --> 00:33:16,880 PROMISED PROFIT SHARING MAY HAVE 1087 00:33:16,880 --> 00:33:17,760 UNREALISTIC EXPECTATIONS ABOUT 1088 00:33:17,760 --> 00:33:19,640 HOW MUCH PROFIT THE PRODUCT WILL 1089 00:33:19,640 --> 00:33:20,720 MAKE AND HOW MUCH REVENUE WILL 1090 00:33:20,720 --> 00:33:21,920 ULTIMATELY FLOW TO THEM, AND 1091 00:33:21,920 --> 00:33:25,240 IT'S A PROBLEM FOR PATIENTS TO 1092 00:33:25,240 --> 00:33:27,760 AGREE TO THIS ON SUCH 1093 00:33:27,760 --> 00:33:29,640 UNREALISTIC OR DATA-WEAK FORMS 1094 00:33:29,640 --> 00:33:30,480 OF INFORMATION. 1095 00:33:30,480 --> 00:33:31,480 AGAIN I'M NOT PARTICULARLY MOVED 1096 00:33:31,480 --> 00:33:33,800 BY CONCERNS ABOUT JUSTIFIED 1097 00:33:33,800 --> 00:33:35,760 PATERNALISM HERE, EXCEPT PERHAPS 1098 00:33:35,760 --> 00:33:36,640 IN VERY HIGH RISK SETTINGS, BUT 1099 00:33:36,640 --> 00:33:38,640 OTHERS MIGHT BE. 1100 00:33:38,640 --> 00:33:39,720 FINALLY ONE MIGHT BE WORRIED 1101 00:33:39,720 --> 00:33:41,600 ABOUT TRANSACTION COSTS WITH 1102 00:33:41,600 --> 00:33:44,640 PATIENT LEVEL CONTRACTING OVER 1103 00:33:44,640 --> 00:33:46,080 PROFIT SHARE OVER HOLD CHOWTS 1104 00:33:46,080 --> 00:33:47,600 AND THICKETS THAT EVERYBODY 1105 00:33:47,600 --> 00:33:49,040 OWES -- MAKES THE VALUE OF THEIR 1106 00:33:49,040 --> 00:33:50,880 CONTRIBUTION AND THE COST OF 1107 00:33:50,880 --> 00:33:52,440 INDIVIDUALLY CONTRACTING IS 1108 00:33:52,440 --> 00:33:54,960 HUGE, AND IT ALSO MAY GENERATE 1109 00:33:54,960 --> 00:33:56,920 INEQUITABLE RESULT IF DIFFERENT 1110 00:33:56,920 --> 00:33:57,520 PARTICIPANTS GET DIFFERENT 1111 00:33:57,520 --> 00:33:59,000 AMOUNTS BASED ON THE VALUATION 1112 00:33:59,000 --> 00:34:00,320 OF THEIR OWN CELLS. 1113 00:34:00,320 --> 00:34:01,280 ALL RIGHT. 1114 00:34:01,280 --> 00:34:02,720 SO I'M ALMOST DONE ON THIS SET 1115 00:34:02,720 --> 00:34:04,560 OF POINTS BUT BEFORE PIVOTING, I 1116 00:34:04,560 --> 00:34:06,600 JUST WANT TO OBSERVE THAT IF 1117 00:34:06,600 --> 00:34:08,560 ANYBODY I HAVE SAID SO FAR HAS 1118 00:34:08,560 --> 00:34:10,400 RESONATED WITH YOU, THIS WEIRDLY 1119 00:34:10,400 --> 00:34:11,800 LEADS US TO FLIP THE PROBLEM ON 1120 00:34:11,800 --> 00:34:12,240 ITS HEAD. 1121 00:34:12,240 --> 00:34:14,800 THE DILEMMA OFFERED BY 1122 00:34:14,800 --> 00:34:16,320 DR. WENDLER HAS CORRECTLY 1123 00:34:16,320 --> 00:34:17,040 IDENTIFIED SOMETHING DIFFERENT 1124 00:34:17,040 --> 00:34:19,160 BETWEEN PARTICIPANTS AND THE 1125 00:34:19,160 --> 00:34:20,360 P.I., BUT INSTEAD OF 1126 00:34:20,360 --> 00:34:22,680 RECOMMENDING LEVELING UP 1127 00:34:22,680 --> 00:34:23,600 EVERYBODY TO PROFIT SHARING, 1128 00:34:23,600 --> 00:34:25,200 THAT IS, TO BRING PARTICIPANTS 1129 00:34:25,200 --> 00:34:27,720 TO PROFIT SHARING, IF ANYTHING 1130 00:34:27,720 --> 00:34:28,600 MAYBE MAKES YOU THINK WE SHOULD 1131 00:34:28,600 --> 00:34:30,360 BE LEVELING DOWN THE P.I.s TO 1132 00:34:30,360 --> 00:34:32,440 GIVE THEM FLAT COMPENSATION 1133 00:34:32,440 --> 00:34:34,600 RATHER THAN PROFIT SHARING, THAT 1134 00:34:34,600 --> 00:34:36,280 IS, IF WE CONCLUDE PROFIT 1135 00:34:36,280 --> 00:34:38,120 SHARING FAILS TO CORRECTLY ALIGN 1136 00:34:38,120 --> 00:34:40,200 INCENTIVES OF WHAT'S SOCIALLY 1137 00:34:40,200 --> 00:34:42,080 OPTIMAL FOR PARTICIPANTS, WHY 1138 00:34:42,080 --> 00:34:44,480 ARE WE SO SURE CORRECTLY ALIGNS 1139 00:34:44,480 --> 00:34:45,600 INCENTIVE WHEN IS IT COMES TO 1140 00:34:45,600 --> 00:34:46,080 PIs? 1141 00:34:46,080 --> 00:34:46,360 OKAY. 1142 00:34:46,360 --> 00:34:49,000 SO EVERYTHING I'VE SAID SO FAR, 1143 00:34:49,000 --> 00:34:50,080 I'VE APPROACHED THIS PROBLEM 1144 00:34:50,080 --> 00:34:51,720 THROUGH A SET OF VIEWS THAT IF 1145 00:34:51,720 --> 00:34:54,240 NOT CONTRARY TO HOW DR. WENDLER 1146 00:34:54,240 --> 00:34:57,760 HAS FRAMED IT, ARE I WOULD SAY 1147 00:34:57,760 --> 00:34:59,080 PRETTY O ORTHOGONAL TO HIS 1148 00:34:59,080 --> 00:34:59,400 FRAMING. 1149 00:34:59,400 --> 00:35:01,320 I HAVE TREATED PROFIT SHARING 1150 00:35:01,320 --> 00:35:02,840 FOR PARTICIPANTS AS A TOOL FOR 1151 00:35:02,840 --> 00:35:04,560 PRODUCING SOCIALLY BENEFICIAL 1152 00:35:04,560 --> 00:35:05,680 OUTCOMES AND QUESTION WHETHER IT 1153 00:35:05,680 --> 00:35:06,960 DOES SO, AND WHETHER IT HAS A 1154 00:35:06,960 --> 00:35:09,520 SET OF NEGATIVE CONSEQUENCES 1155 00:35:09,520 --> 00:35:11,560 THAT OTHER FORMS OF INCENTIVES 1156 00:35:11,560 --> 00:35:13,240 LIKE COMPENSATION IN A FLAT 1157 00:35:13,240 --> 00:35:14,000 STRUCTURE MIGHT NOT. 1158 00:35:14,000 --> 00:35:16,400 THAT'S KIND OF A BROADLY 1159 00:35:16,400 --> 00:35:17,280 CONSEQUENTIALIST APPROACH TO THE 1160 00:35:17,280 --> 00:35:18,640 PROBLEM. 1161 00:35:18,640 --> 00:35:19,280 DR. WENDLER, THOUGH, HAS 1162 00:35:19,280 --> 00:35:20,680 APPROACHED THE QUESTION AS ONE 1163 00:35:20,680 --> 00:35:23,320 OF DESSERT, NOT INCENTIVES. 1164 00:35:23,320 --> 00:35:25,960 AND THE ALIGNMENT PRINCIPLE -- 1165 00:35:25,960 --> 00:35:27,080 ON MY VIEW. 1166 00:35:27,080 --> 00:35:27,920 THAT IS THE FRAMING OF THE 1167 00:35:27,920 --> 00:35:29,880 PROBLEM IS THAT PARTICIPANTS 1168 00:35:29,880 --> 00:35:31,480 DESERVE A PIECE OF THE ACTION 1169 00:35:31,480 --> 00:35:33,320 AND IT'S A SORT OF MORAL WRONG 1170 00:35:33,320 --> 00:35:35,840 TO DENY THEM THAT PIECE OF THE 1171 00:35:35,840 --> 00:35:36,120 ACTION. 1172 00:35:36,120 --> 00:35:37,920 SO HE NOTES, FOR EXAMPLE, TO USE 1173 00:35:37,920 --> 00:35:40,520 A CASE I WANT TO RETURN TO THAT, 1174 00:35:40,520 --> 00:35:42,280 QUO, HELA CELLS HAVE AN 1175 00:35:42,280 --> 00:35:43,800 INCRESTIBLE CAPACITY TO SURVIVE. 1176 00:35:43,800 --> 00:35:45,360 RESEARCHERS DID NOT CREATE THIS 1177 00:35:45,360 --> 00:35:46,120 CAPACITY, THEY TOOK ADVANTAGE OF 1178 00:35:46,120 --> 00:35:46,880 IT. 1179 00:35:46,880 --> 00:35:48,440 UNQUOTE. 1180 00:35:48,440 --> 00:35:49,400 ONE WAY OUT OF THIS COMPARISON 1181 00:35:49,400 --> 00:35:51,960 IS TO SAY THAT ACTUALLY NOBODY 1182 00:35:51,960 --> 00:35:52,840 DESERVES PROFIT SHARING. 1183 00:35:52,840 --> 00:35:55,840 SO HE'S OFFERED AN ARGUMENT 1184 00:35:55,840 --> 00:35:59,040 AGAINST RESEARCHER PROFIT 1185 00:35:59,040 --> 00:36:00,720 SHARING NOT AN ARGUMENT FOR 1186 00:36:00,720 --> 00:36:01,400 PATIENT PROFIT SHARING. 1187 00:36:01,400 --> 00:36:03,360 THAT WOULD BE A WAY TO KIND OF 1188 00:36:03,360 --> 00:36:04,280 CHARACTERIZE WHAT HE'S OFFERED 1189 00:36:04,280 --> 00:36:04,520 US. 1190 00:36:04,520 --> 00:36:06,040 I WANT TO DRAW A DISTINCTION, 1191 00:36:06,040 --> 00:36:06,920 THOUGH, BETWEEN DESSERT 1192 00:36:06,920 --> 00:36:08,200 CONNECTED TO EFFORT VERSUS 1193 00:36:08,200 --> 00:36:11,720 DESSERT CONNECTED TO MORAL LUCK. 1194 00:36:11,720 --> 00:36:13,360 TO SHOW YOU WHILE I DON'T THINK 1195 00:36:13,360 --> 00:36:15,120 THE DESSERT ARGUMENT JUSTIFIES 1196 00:36:15,120 --> 00:36:16,640 TISSUE PROVIDER PROFIT SHARING, 1197 00:36:16,640 --> 00:36:18,280 CONSIDER THE FOLLOWING 1198 00:36:18,280 --> 00:36:19,480 HYPOTHETICAL BASED ON THE REAL 1199 00:36:19,480 --> 00:36:21,680 CASE OF HENRIETTA LACKS. 1200 00:36:21,680 --> 00:36:23,720 IN THE ROOM NEXT TO HENRIETTA 1201 00:36:23,720 --> 00:36:27,720 LACKS IS ANOTHER BLACK WOMAN, 1202 00:36:27,720 --> 00:36:28,400 HERMIONE UNLUCKY. 1203 00:36:28,400 --> 00:36:31,240 SHE'S EXACTLY LIKE HENRIETTA. 1204 00:36:31,240 --> 00:36:33,080 SHE TOO HAS TISSUE TAKEN FROM 1205 00:36:33,080 --> 00:36:33,560 HER TUMOR. 1206 00:36:33,560 --> 00:36:35,040 AS A BLACK WOMAN WITH CERVICAL 1207 00:36:35,040 --> 00:36:36,200 CANCER GETTING CARE AT HOPKINS 1208 00:36:36,200 --> 00:36:37,200 AT THE TIME, SHE, TOO, IS 1209 00:36:37,200 --> 00:36:38,920 TREATED IN A WAY THAT WE VIEW 1210 00:36:38,920 --> 00:36:40,360 BAD, AS BAD FROM OUR VANTAGE 1211 00:36:40,360 --> 00:36:42,000 POINT IN TERMS OF HER SUPPORT 1212 00:36:42,000 --> 00:36:44,320 FRFROM THE HEALTHCARE SYSTEM WHN 1213 00:36:44,320 --> 00:36:45,160 WE LOOK BACK NOW. 1214 00:36:45,160 --> 00:36:46,480 THE ONLY DIFFERENCE, IN FACT, 1215 00:36:46,480 --> 00:36:48,560 BETWEEN HER AND HENRIETTA IS 1216 00:36:48,560 --> 00:36:51,200 THAT HER CELLS ARE JUST 1217 00:36:51,200 --> 00:36:52,000 ORDINARY. 1218 00:36:52,000 --> 00:36:56,000 BECAUSE HER PROFIT SHARING -- 1219 00:36:56,000 --> 00:36:56,920 CONTRIBUTION, IT REQUIRES WE 1220 00:36:56,920 --> 00:36:59,560 TREAT THEIR SHARES DIFFERENTLY. 1221 00:36:59,560 --> 00:37:00,760 DR. WENDLER'S CLAIM, I THINK, 1222 00:37:00,760 --> 00:37:03,600 REQUIRES US TO SAY THAT 1223 00:37:03,600 --> 00:37:05,280 HENRIETTA DESERVES SOMETHING 1224 00:37:05,280 --> 00:37:07,080 THAT HERMIONE DOESN'T. 1225 00:37:07,080 --> 00:37:11,080 THIS IS TRUE PRESUMABLY EVEN IF 1226 00:37:11,080 --> 00:37:12,760 HERMIONE IS A NORMAL CONTROL IN 1227 00:37:12,760 --> 00:37:14,920 THE STUDY, SOMEBODY WITHOUT WHOM 1228 00:37:14,920 --> 00:37:16,440 THE STUDY ALSO COULD NOT TAKE 1229 00:37:16,440 --> 00:37:17,400 PLACE, SHE JUST DOESN'T HAVE 1230 00:37:17,400 --> 00:37:17,960 THESE SPECIAL CELLS. 1231 00:37:17,960 --> 00:37:19,840 SO THE CLAIM IS, HENRIETTA'S 1232 00:37:19,840 --> 00:37:23,000 CELLS ARE SPECIAL, SO HENRIETTA 1233 00:37:23,000 --> 00:37:25,880 DESERVES COMPENSATION FOR THAT. 1234 00:37:25,880 --> 00:37:26,760 HERMIONE'S ARE NOT SPECIAL SO 1235 00:37:26,760 --> 00:37:29,400 SHE DESERVES NO COMPENSATION OR 1236 00:37:29,400 --> 00:37:31,360 LESS COMPENSATION FOR THAT 1237 00:37:31,360 --> 00:37:31,680 REASON. 1238 00:37:31,680 --> 00:37:34,120 THE PROBLEM, THOUGH, IS IT'S A 1239 00:37:34,120 --> 00:37:36,400 MAKER IT OF PURE MORAL LUCK THAT 1240 00:37:36,400 --> 00:37:37,400 HENRIETTA'S CELLS ARE SPECIAL 1241 00:37:37,400 --> 00:37:42,440 AND HERMIONE'S AREN'T. 1242 00:37:42,440 --> 00:37:44,960 EACH HAS THE EXACT SAME 1243 00:37:44,960 --> 00:37:47,480 ENCOUNTER WITH THE MEDICAL 1244 00:37:47,480 --> 00:37:49,680 SYSTEM AND ACT IN EXACTLY THE 1245 00:37:49,680 --> 00:37:51,560 SAME WAY. 1246 00:37:51,560 --> 00:37:53,600 SHEER MORAL LUCK IN THEIR 1247 00:37:53,600 --> 00:37:53,880 GENETICS. 1248 00:37:53,880 --> 00:37:55,040 THAT DOES CHANGE HOW OUR LIVES 1249 00:37:55,040 --> 00:37:56,560 GO EVEN JUST IN THE NARROW SPACE 1250 00:37:56,560 --> 00:37:58,680 OF COMPENSATION. 1251 00:37:58,680 --> 00:38:00,560 MICHAEL JORDAN OR MICHAEL PHELPS 1252 00:38:00,560 --> 00:38:03,640 CAN MAKE CLAIMS TO ATHLETIC 1253 00:38:03,640 --> 00:38:05,240 PERFORMANCE THAT I, GLENN COHEN, 1254 00:38:05,240 --> 00:38:06,600 CANNOT, AND ARE COMPENSATED FOR 1255 00:38:06,600 --> 00:38:07,880 IT EVEN THOUGH IT IS A RESULT AT 1256 00:38:07,880 --> 00:38:09,640 LEAST IN PART OF THEIR MORAL 1257 00:38:09,640 --> 00:38:11,400 LUCK AND THEIR GOOD GENETICS. 1258 00:38:11,400 --> 00:38:13,360 THAT IS TO SAY, IT IS A 1259 00:38:13,360 --> 00:38:14,240 NECESSARY CONDITION FOR THEIR 1260 00:38:14,240 --> 00:38:15,080 SUCCESS. 1261 00:38:15,080 --> 00:38:16,240 SO WHAT'S DIFFERENT FROM 1262 00:38:16,240 --> 00:38:17,800 HENRIETTA LACKS? 1263 00:38:17,800 --> 00:38:19,400 I WANT TO SUGGEST IT TRACES 1264 00:38:19,400 --> 00:38:22,040 BACK, BELIEVE IT OR NOT, TO JOB 1265 00:38:22,040 --> 00:38:23,560 LUCK AND ONE'S THEORY OF 1266 00:38:23,560 --> 00:38:25,960 PROPERTY AND ONE'S THEORY OF 1267 00:38:25,960 --> 00:38:26,400 COMPENSATION. 1268 00:38:26,400 --> 00:38:28,760 LUCK HAS A STARTING POINT OF 1269 00:38:28,760 --> 00:38:30,280 SELF-OWNERSHIP THAT MY BODY IS 1270 00:38:30,280 --> 00:38:30,720 MY PROPERTY. 1271 00:38:30,720 --> 00:38:32,120 THIS IS WHERE HE STARTS, THAT 1272 00:38:32,120 --> 00:38:33,880 EVERY MAN HAS A PROPERTY IN HIS 1273 00:38:33,880 --> 00:38:34,800 OWN PERSON AS HE PUTS IT. 1274 00:38:34,800 --> 00:38:36,440 FROM THIS, HE DERIVES THIS 1275 00:38:36,440 --> 00:38:37,760 THEORY THAT AN INDIVIDUAL CAN 1276 00:38:37,760 --> 00:38:39,640 ALSO CLAIM PROPERTY IN WHATEVER 1277 00:38:39,640 --> 00:38:41,000 THE INDIVIDUAL MIXES HIS OTHER 1278 00:38:41,000 --> 00:38:41,960 HER LABOR WITH. 1279 00:38:41,960 --> 00:38:43,640 THERE'S SOME NOTION OF SWEAT OF 1280 00:38:43,640 --> 00:38:45,240 THE BROW, AS HE PUTS IT. 1281 00:38:45,240 --> 00:38:48,000 WE DESERVE PROPERTY IN THAT IN 1282 00:38:48,000 --> 00:38:49,600 WHICH WE MIX OUR BODIES. 1283 00:38:49,600 --> 00:38:51,600 BUT IN DR. COHEN'S CASE, AND THE 1284 00:38:51,600 --> 00:38:53,720 HELA CASE, IT'S THE PRODUCT OF 1285 00:38:53,720 --> 00:38:55,560 OUR BODY SEPARATED FROM IT, NOT 1286 00:38:55,560 --> 00:38:58,960 THE BODY ITSELF FOR THE MIXING 1287 00:38:58,960 --> 00:38:59,960 OF OUR LABOR THAT'S DOING THE 1288 00:38:59,960 --> 00:39:00,520 WORK. 1289 00:39:00,520 --> 00:39:02,280 THE EFFORT PIECE, THE PROCESS OF 1290 00:39:02,280 --> 00:39:04,920 SEPARATING THE TISSUE FROM OUR 1291 00:39:04,920 --> 00:39:06,000 CELLS, THE REMOVAL AND THE COST 1292 00:39:06,000 --> 00:39:08,080 OF THAT REMOVAL TO US IS EXACTLY 1293 00:39:08,080 --> 00:39:11,040 THE SAME FOR HENRIETTA AND FOR 1294 00:39:11,040 --> 00:39:11,520 HERMIONE. 1295 00:39:11,520 --> 00:39:13,120 THAT IS TO SAY ONE MIGHT ARGUE 1296 00:39:13,120 --> 00:39:15,840 FOR EQUAL PAY FOR EQUAL WORK, 1297 00:39:15,840 --> 00:39:18,400 AND HENRIETTA AND HERMIONE'S 1298 00:39:18,400 --> 00:39:20,280 WORK IS EXACTLY EQUAL. 1299 00:39:20,280 --> 00:39:21,480 SO IF THE DIFFERENCE IN 1300 00:39:21,480 --> 00:39:23,120 COMPENSATION IS OWED, IT MUST 1301 00:39:23,120 --> 00:39:24,440 NOT BE RELATED TO THEIR EFFORT 1302 00:39:24,440 --> 00:39:25,480 OR WORK BUT THROUGH THE MORAL 1303 00:39:25,480 --> 00:39:27,320 LUCK OF MERE GENETIC 1304 00:39:27,320 --> 00:39:28,200 DIFFERENCES, AND THAT'S A MUCH 1305 00:39:28,200 --> 00:39:30,040 LESS ATTRACTIVE ARGUMENT FOR 1306 00:39:30,040 --> 00:39:31,480 DESSERT. 1307 00:39:31,480 --> 00:39:33,480 THE PROBLEM IS ALSO EVIDENT IF 1308 00:39:33,480 --> 00:39:35,480 YOU FRAME IT IN MORE ECONOMIC 1309 00:39:35,480 --> 00:39:36,400 RATHER THAN MORAL TERMS AS 1310 00:39:36,400 --> 00:39:37,960 PEOPLE OFTEN DO WITH 1311 00:39:37,960 --> 00:39:40,520 INTELLECTUAL PROPERTY. 1312 00:39:40,520 --> 00:39:43,440 USING THE ENTITLEMENT AS 1313 00:39:43,440 --> 00:39:44,560 ECONOMIC INCENTIVE TO GET 1314 00:39:44,560 --> 00:39:45,240 PRODUCTIVE LABOR. 1315 00:39:45,240 --> 00:39:47,040 SO UNLIKE WITH GIVING A NOVELIST 1316 00:39:47,040 --> 00:39:49,360 COPYRIGHT IN A NOVEL, FOR 1317 00:39:49,360 --> 00:39:50,360 EXAMPLE, THERE DOES NOT SEEM TO 1318 00:39:50,360 --> 00:39:53,120 BE MUCH PRODUCTIVE LABOR TO 1319 00:39:53,120 --> 00:39:54,640 INCENTIVIZE IN THE INSTANCE OF 1320 00:39:54,640 --> 00:39:55,840 GIVING THEIR TISSUE. 1321 00:39:55,840 --> 00:39:58,080 MY GENETIC CODE IS WHAT IT IS, 1322 00:39:58,080 --> 00:40:01,920 AND NO AMOUNT OF INCENTIVE YOU 1323 00:40:01,920 --> 00:40:03,320 OFFER ME WILL MAKE IT CHANGE. 1324 00:40:03,320 --> 00:40:05,200 THAT IS TO SAY, IF MY CELLS ARE 1325 00:40:05,200 --> 00:40:07,960 ORDINARY, THEY'RE ORDINARY NO 1326 00:40:07,960 --> 00:40:09,040 MATTER WHAT EFFORT I PUT IN, 1327 00:40:09,040 --> 00:40:09,800 JUST WISHING THER WERE 1328 00:40:09,800 --> 00:40:10,160 OTHERWISE. 1329 00:40:10,160 --> 00:40:11,960 WHAT IS NEEDED IS AN INCENTIVE 1330 00:40:11,960 --> 00:40:13,200 TO SHARE IT WITH YOU, THE 1331 00:40:13,200 --> 00:40:16,400 SEPARATION, BUT HERE AGAIN, 1332 00:40:16,400 --> 00:40:17,800 HERMIONE AND HENRIETTA ARE 1333 00:40:17,800 --> 00:40:18,280 EXACTLY PARALLEL. 1334 00:40:18,280 --> 00:40:19,480 THE WORK IS THE SAME. 1335 00:40:19,480 --> 00:40:21,880 THUS THE STRONGEST ARGUMENT FOR 1336 00:40:21,880 --> 00:40:23,840 PAYING HENRIETTA MORE IS SHE 1337 00:40:23,840 --> 00:40:25,480 KNOWS IT'S MORE VALUABLE, AND WE 1338 00:40:25,480 --> 00:40:26,960 NEED TO PAY HER MORE TO PART 1339 00:40:26,960 --> 00:40:27,920 WITH IT. 1340 00:40:27,920 --> 00:40:29,560 BUT THAT'S NOT REALLY AN 1341 00:40:29,560 --> 00:40:30,800 ARGUMENT ABOUT DESSERT. 1342 00:40:30,800 --> 00:40:32,000 INSTEAD, THAT'S JUST BRINGING US 1343 00:40:32,000 --> 00:40:33,720 BACK TO INCENTIVES AND BACK TO 1344 00:40:33,720 --> 00:40:34,880 ALIGNMENT, WHICH IS WHERE I 1345 00:40:34,880 --> 00:40:35,880 STARTED. 1346 00:40:35,880 --> 00:40:37,320 MOREOVER, THE FACTS MAY VARY BUT 1347 00:40:37,320 --> 00:40:38,960 MOST PEOPLE DON'T KNOW WHAT IS 1348 00:40:38,960 --> 00:40:40,960 OR IS NOT VALUABLE ABOUT THEIR 1349 00:40:40,960 --> 00:40:42,760 CELLS, AND THE MORE WE TELL THEM 1350 00:40:42,760 --> 00:40:44,280 TO HELP THEM FIGURE IT OUT, THE 1351 00:40:44,280 --> 00:40:46,200 MORE WE'RE GOING TO GET 1352 00:40:46,200 --> 00:40:48,400 NEGOTIATION AND HOLDOUT PROBLEMS 1353 00:40:48,400 --> 00:40:52,240 AND ARGUABLY WE'RE GOING TO 1354 00:40:52,240 --> 00:40:54,080 STYMIE HEALTH PRODUCTIVE 1355 00:40:54,080 --> 00:40:54,360 RESEARCH. 1356 00:40:54,360 --> 00:40:57,160 SO I WANT TO ONCE AGAIN SUGGEST 1357 00:40:57,160 --> 00:40:58,360 DR. WENDLER'S CLAIMS ARE MUCH 1358 00:40:58,360 --> 00:41:00,240 MORE ON ATTACK ON WHETHER PIs 1359 00:41:00,240 --> 00:41:01,800 SHOULD HAVE A RIGHT TO PROFIT 1360 00:41:01,800 --> 00:41:02,680 THAN WHETHER PATIENTS SHOULD. 1361 00:41:02,680 --> 00:41:05,320 AND HERE I THINK THE ANSWER IS 1362 00:41:05,320 --> 00:41:09,560 THAT THE MIXING OF LABOR, THE 1363 00:41:09,560 --> 00:41:10,560 INCENTIVE STORY EXPLAINS WHY 1364 00:41:10,560 --> 00:41:11,920 PIs ARE OFFERED A CLAIM TO 1365 00:41:11,920 --> 00:41:13,000 SHARE IN PROFITS. 1366 00:41:13,000 --> 00:41:14,960 THE ARGUMENT IS, WITHOUT PROFIT 1367 00:41:14,960 --> 00:41:16,160 SHARING, THEY'RE NOT COMPENSATED 1368 00:41:16,160 --> 00:41:18,160 ENOUGH FOR THEIR LABOR, AND THE 1369 00:41:18,160 --> 00:41:19,040 RESULT IS THEY'RE NOT GOING TO 1370 00:41:19,040 --> 00:41:21,880 SPEND ENOUGH TIME, VOLITION AND 1371 00:41:21,880 --> 00:41:22,560 INTELLECTUAL CAPITAL AND WE 1372 00:41:22,560 --> 00:41:23,800 DON'T GET TO PRODUCE THE 1373 00:41:23,800 --> 00:41:26,200 SOCIALLY VALUABLE STUFF WE WANT. 1374 00:41:26,200 --> 00:41:29,040 NOW THAT IS AN EMPIRICALLY 1375 00:41:29,040 --> 00:41:29,560 CONTESTABLE PROPOSITION. 1376 00:41:29,560 --> 00:41:31,160 IT'S KIND OF A JUST-SO STORY, 1377 00:41:31,160 --> 00:41:32,680 AND PERHAPS OUR INNOVATION 1378 00:41:32,680 --> 00:41:34,400 ECOSYSTEM WOULD BE BETTER 1379 00:41:34,400 --> 00:41:35,280 WITHOUT PROFIT SHARING 1380 00:41:35,280 --> 00:41:36,640 INCENTIVES FOR PI. 1381 00:41:36,640 --> 00:41:38,720 BUT THEY MAKE THE PI AT LEAST ON 1382 00:41:38,720 --> 00:41:40,680 PAR WITH THE NOVELIST, THE 1383 00:41:40,680 --> 00:41:42,440 INVENTOR OF A BICYCLE, AND MANY 1384 00:41:42,440 --> 00:41:45,600 OTHERS FOR WHOM OUR INTELLECTUAL 1385 00:41:45,600 --> 00:41:49,040 PROPERTY SYSTEM HAS DECIDED TO 1386 00:41:49,040 --> 00:41:50,240 REWARD THEM RECOMPENSE IN 1387 00:41:50,240 --> 00:41:53,400 RELATION TO HOW MUCH PROFIT IS 1388 00:41:53,400 --> 00:41:54,200 MADE. 1389 00:41:54,200 --> 00:41:56,080 HOPEFULLY I'VE AT LEAST PROVOKED 1390 00:41:56,080 --> 00:41:57,800 YOU AND I'M VERY CURIOUS TO HEAR 1391 00:41:57,800 --> 00:41:58,680 WHAT MY COLLEAGUES AND ALL OF 1392 00:41:58,680 --> 00:41:59,240 YOU HAVE TO SAY. 1393 00:41:59,240 --> 00:42:04,120 THANK YOU VERY MUCH. 1394 00:42:04,120 --> 00:42:05,080 >>THANKS, GLENN. 1395 00:42:05,080 --> 00:42:07,160 WE REALLY APPRECIATE IT AND WE 1396 00:42:07,160 --> 00:42:08,360 ALREADY HAVE SOME GREAT 1397 00:42:08,360 --> 00:42:09,040 QUESTIONS. 1398 00:42:09,040 --> 00:42:10,360 I SUSPECT THAT WE COULD SPEND 1399 00:42:10,360 --> 00:42:12,320 THE REST OF OUR CAREERS ON THIS, 1400 00:42:12,320 --> 00:42:13,960 MUCH LESS THE NEXT 15 MINUTES OR 1401 00:42:13,960 --> 00:42:15,400 SO. 1402 00:42:15,400 --> 00:42:17,840 SO THE FIRST ONE, I THINK FOR 1403 00:42:17,840 --> 00:42:20,680 BOTH OF US, BUT MAYBE I'LL ASK 1404 00:42:20,680 --> 00:42:22,320 YOU BECAUSE YOU'VE TALKED MORE 1405 00:42:22,320 --> 00:42:23,320 ABOUT THE INCENTIVE STRUCTURES 1406 00:42:23,320 --> 00:42:28,160 THAN I DID, WHICH IS THAT SOME 1407 00:42:28,160 --> 00:42:29,000 PEOPLE POINT OUT THAT SHARING 1408 00:42:29,000 --> 00:42:32,440 PROFITS WITH CERTAIN PEOPLE, THE 1409 00:42:32,440 --> 00:42:34,640 COMPANY, THE RESEARCHERS, THAT 1410 00:42:34,640 --> 00:42:35,840 CAN INCENTIVIZE THEM TO DOING 1411 00:42:35,840 --> 00:42:37,400 THINGS WE WANT, LIKE CREATING 1412 00:42:37,400 --> 00:42:41,080 NEW TREATMENTS, CURES, 1413 00:42:41,080 --> 00:42:42,440 SUCCESSFUL VACCINES, BUT IT CAN 1414 00:42:42,440 --> 00:42:43,480 ALSO INCENTIVIZE THEM TO DO 1415 00:42:43,480 --> 00:42:44,640 THINGS WE EMPHATICALLY DON'T 1416 00:42:44,640 --> 00:42:47,880 WANT THEM TO DO, LIKE HIDE THE 1417 00:42:47,880 --> 00:42:49,680 FACT THAT SOMEBODY GOT REALLY 1418 00:42:49,680 --> 00:42:51,560 SICK ON A DRUG OR SOMEBODY DIED 1419 00:42:51,560 --> 00:42:52,880 ON A DRUG OR PEOPLE'S BLOOD 1420 00:42:52,880 --> 00:42:53,960 PRESSURE WENT WAY UP IN A WAY 1421 00:42:53,960 --> 00:42:55,960 THAT WAS DANGEROUS, AND IF WE 1422 00:42:55,960 --> 00:42:58,400 GIVE THEM HUGE INCENTIVES, THEY 1423 00:42:58,400 --> 00:43:00,400 HAVE AN INCENTIVE TO HIDE THAT 1424 00:43:00,400 --> 00:43:01,000 INFORMATION. 1425 00:43:01,000 --> 00:43:05,040 SO ANY THOUGHTS ON HOW THAT 1426 00:43:05,040 --> 00:43:06,120 COULD POSSIBLY WASH OUT IN THE 1427 00:43:06,120 --> 00:43:07,440 END TO WHETHER OR NOT -- SO I 1428 00:43:07,440 --> 00:43:08,840 THINK THE SUGGESTION, AT LEAST 1429 00:43:08,840 --> 00:43:11,320 THE QUESTION I HAD WAS -- ALL 1430 00:43:11,320 --> 00:43:13,680 THE WAY DOWN ON EVERYBODY -- 1431 00:43:13,680 --> 00:43:14,640 WHAT YOUR THOUGHTS ARE ON THAT 1432 00:43:14,640 --> 00:43:16,280 POSSIBILITY. 1433 00:43:16,280 --> 00:43:17,680 >>SO HERE'S A COUPLE OF 1434 00:43:17,680 --> 00:43:18,080 REACTIONS. 1435 00:43:18,080 --> 00:43:18,920 THE FIRST ONE IS JUST TO SAY 1436 00:43:18,920 --> 00:43:20,040 THAT YOU MIGHT THINK THAT 1437 00:43:20,040 --> 00:43:21,240 ACTUALLY THIS IS AN ARGUMENT IF 1438 00:43:21,240 --> 00:43:23,760 YOU'RE GOING TO PROFIT SHARING 1439 00:43:23,760 --> 00:43:24,760 FOR ANYBODY THAT MAYBE THE 1440 00:43:24,760 --> 00:43:25,880 PATIENTS OR PARTICIPANTS ARE 1441 00:43:25,880 --> 00:43:27,600 BETTER THAN THE INVESTIGATORS 1442 00:43:27,600 --> 00:43:29,560 BECAUSE THE PARTICIPANTS CAN DO 1443 00:43:29,560 --> 00:43:31,480 LESS MONKEYING AROUND AND LESS 1444 00:43:31,480 --> 00:43:32,440 KIND OF NEGATIVE THINGS. 1445 00:43:32,440 --> 00:43:33,680 AND THAT'S NOT ALWAYS TRUE, 1446 00:43:33,680 --> 00:43:35,000 THERE ARE TRIALS, FOR EXAMPLE, 1447 00:43:35,000 --> 00:43:37,760 THAT HAVE A LOT OF SELF-REPORT, 1448 00:43:37,760 --> 00:43:39,240 FOR EXAMPLE, INCLUDING ADHERENCE 1449 00:43:39,240 --> 00:43:40,240 TRIALS AND THE LIKE WHERE YOU 1450 00:43:40,240 --> 00:43:41,840 MIGHT WORRY THAT ACTUALLY THE 1451 00:43:41,840 --> 00:43:43,440 INCENTIVE STRUCTURE IS GOING TO 1452 00:43:43,440 --> 00:43:44,120 PRODUCE BAD BEHAVIOR. 1453 00:43:44,120 --> 00:43:45,840 WHAT I WANT TO SUGGEST IS THAT 1454 00:43:45,840 --> 00:43:48,520 THIS FRAMING, WHICH IS TO SAY 1455 00:43:48,520 --> 00:43:49,960 HERE WE HAVE A SOCIAL GOAL OR 1456 00:43:49,960 --> 00:43:51,280 PRIVATE OR PUBLIC GOAL AND WE 1457 00:43:51,280 --> 00:43:52,760 WANT TO KNOW WHAT FORM OF 1458 00:43:52,760 --> 00:43:53,520 COMPENSATION IS GOING TO BEST 1459 00:43:53,520 --> 00:43:54,400 GET US THERE. 1460 00:43:54,400 --> 00:43:56,920 IT'S JUST VERY DIFFERENT FROM 1461 00:43:56,920 --> 00:43:59,160 THE FRAMING, WHAT DO PEOPLE 1462 00:43:59,160 --> 00:44:00,640 DESERVE? 1463 00:44:00,640 --> 00:44:01,560 SO YOU COULD BELIEVE THAT 1464 00:44:01,560 --> 00:44:02,960 ACTUALLY THE PIs POORTS PANTS 1465 00:44:02,960 --> 00:44:03,960 DON'T DESERVE THE COMPENSATION 1466 00:44:03,960 --> 00:44:05,800 BUT WE'RE GOING TO GIVE TO THEM 1467 00:44:05,800 --> 00:44:07,320 ANYWAYS BECAUSE WEAR GOING TO 1468 00:44:07,320 --> 00:44:08,960 GIVE PEOPLE THINGS THEY DON'T 1469 00:44:08,960 --> 00:44:10,040 DESERVE IN ORDER TO SERVE A 1470 00:44:10,040 --> 00:44:10,600 GREATER GOAL. 1471 00:44:10,600 --> 00:44:11,720 THAT'S QUITE DIFFERENT FROM A 1472 00:44:11,720 --> 00:44:13,240 VIEW THAT SAYS, WHEN WE THINK 1473 00:44:13,240 --> 00:44:14,360 ABOUT THIS PROBLEM, WE SHOULD 1474 00:44:14,360 --> 00:44:15,640 START WITH DESSERT, AND GIVE 1475 00:44:15,640 --> 00:44:17,520 PEOPLE WHAT THEY DESERVE, AND 1476 00:44:17,520 --> 00:44:18,960 MAYBE THEN ON THE BACK END, 1477 00:44:18,960 --> 00:44:20,400 MONKEY A LITTLE AROUND WITH THE 1478 00:44:20,400 --> 00:44:20,680 INCENTIVES. 1479 00:44:20,680 --> 00:44:23,040 SO I THINK THIS IS WHY I LOVED 1480 00:44:23,040 --> 00:44:24,600 YOUR PRESENTATION, DR. WENDLER, 1481 00:44:24,600 --> 00:44:25,600 IS THAT I THINK THERE'S REALLY A 1482 00:44:25,600 --> 00:44:26,600 DOUBLE VISION HERE ABOUT WHAT IT 1483 00:44:26,600 --> 00:44:29,200 IS WE'RE TRYING TO DO WITH 1484 00:44:29,200 --> 00:44:30,320 COMPENSATION AND DIFFERENT KINDS 1485 00:44:30,320 --> 00:44:31,760 OF COMPENSATION. 1486 00:44:31,760 --> 00:44:32,840 >>RIGHT. 1487 00:44:32,840 --> 00:44:37,200 NEXT QUESTION IS, RELATED TO 1488 00:44:37,200 --> 00:44:39,520 THIS ONE, SOMEONE POINTS OUT 1489 00:44:39,520 --> 00:44:41,280 THAT INCENTIVE STRUCTURES FOR 1490 00:44:41,280 --> 00:44:43,040 RESEARCHERS, SO PEOPLE LIKE THE 1491 00:44:43,040 --> 00:44:46,640 RESEARCHER IN THIS CASE, PEOPLE 1492 00:44:46,640 --> 00:44:51,400 AT THE NIH, PEOPLE AT HARVARD, 1493 00:44:51,400 --> 00:44:52,720 INCENTIVES AREN'T COMING IN JUST 1494 00:44:52,720 --> 00:44:53,480 THROUGH POTENTIAL SHARING AND 1495 00:44:53,480 --> 00:44:54,040 PROFITS. 1496 00:44:54,040 --> 00:44:55,800 THERE'S LOTS OF OTHER WAYS WE 1497 00:44:55,800 --> 00:44:56,320 INCENTIVIZE THEM. 1498 00:44:56,320 --> 00:44:57,680 THEY GET TENURE, YOU GET 1499 00:44:57,680 --> 00:45:00,120 PROMOTION, YOU GET RAISES, YOU 1500 00:45:00,120 --> 00:45:02,160 GET FIRST AUTHOR PUBLICATIONS IN 1501 00:45:02,160 --> 00:45:03,720 THE NEW ENGLAND JOURNAL OF 1502 00:45:03,720 --> 00:45:05,680 MEDICINE, YOU GET FANCY AWARDS, 1503 00:45:05,680 --> 00:45:08,560 REALIF YOU'RE REALLY GOOD AND RY 1504 00:45:08,560 --> 00:45:09,400 LUCKY. 1505 00:45:09,400 --> 00:45:11,000 SO THE QUESTION WAS, SHOULD WE 1506 00:45:11,000 --> 00:45:11,640 BE LEVELING DOWN WITH THOSE OR 1507 00:45:11,640 --> 00:45:13,040 BE WORRIED ABOUT THOSE IN THE 1508 00:45:13,040 --> 00:45:13,320 SAME WAY? 1509 00:45:13,320 --> 00:45:15,400 IS THERE A SIMILAR WORRY RAISED 1510 00:45:15,400 --> 00:45:20,040 BY THOSE OR ARE THEY SOMEHOW 1511 00:45:20,040 --> 00:45:20,280 DIFFERENT? 1512 00:45:20,280 --> 00:45:21,440 >>IT'S A GREAT QUESTION. 1513 00:45:21,440 --> 00:45:24,640 IN SOME WAYS I'LL SAY DEPENDING 1514 00:45:24,640 --> 00:45:26,200 ON HOW VALUABLE IT IS, TENURE 1515 00:45:26,200 --> 00:45:27,920 MIGHT BE WORTH A LOT MORE TO 1516 00:45:27,920 --> 00:45:29,280 YOUR LIFE AND HOW YOUR LIFE GOES 1517 00:45:29,280 --> 00:45:30,000 THAN THIS OTHER THING. 1518 00:45:30,000 --> 00:45:31,720 IT'S SORT OF INTERESTING WHAT WE 1519 00:45:31,720 --> 00:45:35,960 CAN QUANTIFY OR NOT. 1520 00:45:35,960 --> 00:45:38,120 SO HERE ON THE FLIP SIDE, ONE 1521 00:45:38,120 --> 00:45:38,960 THING WE'RE SEEING MORE IN THE 1522 00:45:38,960 --> 00:45:40,720 RESEARCH ETHICS COMMUNITY IS 1523 00:45:40,720 --> 00:45:43,000 INCLUDING PARTICIPANTS IN 1524 00:45:43,000 --> 00:45:45,080 AUTHORSHIP TITLES OR AS PART OF 1525 00:45:45,080 --> 00:45:49,520 AUTHORSHIPS GROUP OR 1526 00:45:49,520 --> 00:45:49,960 ACKNOWLEDGMENT. 1527 00:45:49,960 --> 00:45:51,600 THERE IT'S NOT SO MUCH AS AN 1528 00:45:51,600 --> 00:45:53,640 INCENTIVE AS IT'S MORE 1529 00:45:53,640 --> 00:45:54,800 DIGNITARIAN IN MY OPINION AS TO 1530 00:45:54,800 --> 00:45:56,240 SAY HERE'S A WAY I CAN 1531 00:45:56,240 --> 00:45:57,320 ACKNOWLEDGE WHAT YOU'VE 1532 00:45:57,320 --> 00:45:58,200 CONTRIBUTED AND BASICALLY, YOU 1533 00:45:58,200 --> 00:46:00,000 KNOW, OFFER YOU A KIND OF 1534 00:46:00,000 --> 00:46:01,080 DIGNITY OF THE WORK THAT YOU'RE 1535 00:46:01,080 --> 00:46:01,720 DOING. 1536 00:46:01,720 --> 00:46:03,920 I'LL JUST SAY ONE MORE THING 1537 00:46:03,920 --> 00:46:06,400 THEN I'LL BE CURIOUS WHAT MY 1538 00:46:06,400 --> 00:46:07,000 COLLEAGUES THINK, IS THAT ONE 1539 00:46:07,000 --> 00:46:07,800 THING IN THE BACKGROUND OF ALL 1540 00:46:07,800 --> 00:46:08,760 OF THIS IS A QUESTION ABOUT 1541 00:46:08,760 --> 00:46:09,800 WHETHER WE SHOULD THINK OF 1542 00:46:09,800 --> 00:46:11,640 RESEARCH ETHICS AS WORK OR 1543 00:46:11,640 --> 00:46:13,760 RESEARCH PARTICIPATION, I SHOULD 1544 00:46:13,760 --> 00:46:14,760 SAY, AS WORK OR NOT. 1545 00:46:14,760 --> 00:46:16,400 THERE ARE SOME PEOPLE WHO THINK 1546 00:46:16,400 --> 00:46:17,760 THAT ACTUALLY WE SHOULD VIEW 1547 00:46:17,760 --> 00:46:19,160 RESEARCH PARTICIPANTS AS 1548 00:46:19,160 --> 00:46:20,800 WORKERS, WHICH MIGHT LEAD YOU TO 1549 00:46:20,800 --> 00:46:22,000 THINK THE THINGS LIKE EMPLOYMENT 1550 00:46:22,000 --> 00:46:24,240 LAW OR EVEN UNIONS, LIKE SHOULD 1551 00:46:24,240 --> 00:46:26,360 THERE BE A UNION OF RESEARCH 1552 00:46:26,360 --> 00:46:26,680 PARTICIPANTS? 1553 00:46:26,680 --> 00:46:28,360 CERTAINLY THERE ARE PROFESSIONAL 1554 00:46:28,360 --> 00:46:31,280 RESEARCH PARTICIPANTS CALLED 1555 00:46:31,280 --> 00:46:32,440 PROFESSIONAL GUINEA PIGS IN SOME 1556 00:46:32,440 --> 00:46:35,600 WAYS, AND THAT'S THE PLACE OF 1557 00:46:35,600 --> 00:46:36,160 THE EXTREME CASE. 1558 00:46:36,160 --> 00:46:37,680 BUT THE MORE YOU VIEW RESEARCH 1559 00:46:37,680 --> 00:46:39,360 WORK AS JUST ANOTHER KIND OF 1560 00:46:39,360 --> 00:46:41,120 WORK, THE MORE THAT YOU TAKE THE 1561 00:46:41,120 --> 00:46:42,520 LOGIC OF THE MARKET IS THE RIGHT 1562 00:46:42,520 --> 00:46:42,880 ONE FOR IT. 1563 00:46:42,880 --> 00:46:46,120 THE MORE YOU THINK THAT IT'S A 1564 00:46:46,120 --> 00:46:50,680 KIND OF FIDUCIARY, DUTY-BOUND OR 1565 00:46:50,680 --> 00:46:51,800 RESPECTFUL KIND OF THING, THE 1566 00:46:51,800 --> 00:46:52,600 LESS YOU MIGHT BE ATTRACTED TO 1567 00:46:52,600 --> 00:46:54,120 THE DISCUSSION OF THIS IN 1568 00:46:54,120 --> 00:46:55,360 MARKETTIZED TERMS. 1569 00:46:55,360 --> 00:46:59,040 >>GREAT. 1570 00:46:59,040 --> 00:46:59,560 OKAY. 1571 00:46:59,560 --> 00:47:01,480 THESE ARE GREAT QUESTIONS. 1572 00:47:01,480 --> 00:47:03,160 A COUPLE ARE COMING FROM YOU SO 1573 00:47:03,160 --> 00:47:06,360 I WANTED TO GIVE YOU A 10-SECOND 1574 00:47:06,360 --> 00:47:07,480 BREAK THERE BEFORE I ASK YOU THE 1575 00:47:07,480 --> 00:47:08,000 NEXT ONE. 1576 00:47:08,000 --> 00:47:10,720 THIS IS GOING TO BE LIKE FIRING 1577 00:47:10,720 --> 00:47:13,320 SQUAD WITH HARD QUESTIONS. 1578 00:47:13,320 --> 00:47:14,600 THERE'S GOING TO BE BLOOD ALL 1579 00:47:14,600 --> 00:47:15,720 OVER THE BACK OF THE CHAIRS BY 1580 00:47:15,720 --> 00:47:17,240 THE TIME YOU'RE FINISHED. 1581 00:47:17,240 --> 00:47:18,960 SO SOMEBODY HAS ASKED -- SO THIS 1582 00:47:18,960 --> 00:47:20,240 IS RELATED TO -- THIS ONE IS 1583 00:47:20,240 --> 00:47:21,880 RELATED TO THE POINT ABOUT 1584 00:47:21,880 --> 00:47:23,160 WHETHER OR NOT WE CAN TAKE A 1585 00:47:23,160 --> 00:47:25,080 MORE MARKET APPROACH TO THE WAY 1586 00:47:25,080 --> 00:47:27,960 WE THINK ABOUT RESEARCH SUBJECTS 1587 00:47:27,960 --> 00:47:31,200 AND THEIR ROLES AND THEIR 1588 00:47:31,200 --> 00:47:32,560 CONTRIBUTIONS, AND POINTING OUT, 1589 00:47:32,560 --> 00:47:37,400 WHAT IF WE IMAGINE THAT RESEARCH 1590 00:47:37,400 --> 00:47:40,040 PARTICIPANTS OR SAMPLE DONORS 1591 00:47:40,040 --> 00:47:42,760 ALL BAND TOGETHER AND THEY GIVE 1592 00:47:42,760 --> 00:47:43,880 THIS OFFER TO -- I DON'T KNOW 1593 00:47:43,880 --> 00:47:45,080 WHO THEY WOULD GIVE THE OFFER 1594 00:47:45,080 --> 00:47:46,880 TO -- COMPANIES OR BIOETHICS OF 1595 00:47:46,880 --> 00:47:48,800 THE NIH, AND ALL THE POTENTIAL 1596 00:47:48,800 --> 00:47:52,680 SAMPLE DONORS OR RESEARCH 1597 00:47:52,680 --> 00:47:53,920 PARTICIPANTS SAY WE'RE WILLING 1598 00:47:53,920 --> 00:47:56,440 TO BE -- OF THIS BUT WE'RE ONLY 1599 00:47:56,440 --> 00:47:57,440 GOING TO BE PART OF THIS IF WE 1600 00:47:57,440 --> 00:47:58,560 GET SOME SHARE IN THE PROFITS, 1601 00:47:58,560 --> 00:47:59,960 OR AT LEAST THE PEOPLE WHO 1602 00:47:59,960 --> 00:48:01,200 PARTICIPATE IN THE STUDY SHOULD 1603 00:48:01,200 --> 00:48:05,280 GET A SHARE IN THE PROFITS. 1604 00:48:05,280 --> 00:48:06,600 SO THE QUESTIONS ARE, ONE, IF 1605 00:48:06,600 --> 00:48:08,960 THEY DID THAT, IT MIGHT BE A 1606 00:48:08,960 --> 00:48:10,440 GOOD OR A BAD THING, AND THEN 1607 00:48:10,440 --> 00:48:14,480 THE SECOND QUESTION IS, IS THE 1608 00:48:14,480 --> 00:48:15,720 FACT THAT THEY HAVEN'T DONE 1609 00:48:15,720 --> 00:48:17,080 THAT, PRESUMABLY IT'S SOME SORT 1610 00:48:17,080 --> 00:48:18,600 OF HAPPENSTANCE, THEY JUST 1611 00:48:18,600 --> 00:48:19,800 HAVEN'T ORGANIZED IN A 1612 00:48:19,800 --> 00:48:21,280 SUFFICIENTLY PROPER WAY, AND IF 1613 00:48:21,280 --> 00:48:22,720 THEY DID, THEY WOULD GET THESE 1614 00:48:22,720 --> 00:48:22,920 PROFITS. 1615 00:48:22,920 --> 00:48:24,760 SO IS THE CURRENT STRUCTURE IN A 1616 00:48:24,760 --> 00:48:26,680 WAY JUST EXPLOITING THE FACT 1617 00:48:26,680 --> 00:48:27,760 THAT THESE PEOPLE HAVEN'T BEEN 1618 00:48:27,760 --> 00:48:29,320 ABLE TO BAND TOGETHER IN THE 1619 00:48:29,320 --> 00:48:34,840 RIGHT SORT OF WAY? 1620 00:48:34,840 --> 00:48:36,200 >>IT'S A GREAT QUESTION. 1621 00:48:36,200 --> 00:48:37,960 I'LL SAY IT'S NOT COMPLETELY 1622 00:48:37,960 --> 00:48:38,320 HYPOTHETICAL. 1623 00:48:38,320 --> 00:48:40,400 IN SOME RARE DISEASE GROUPS, FOR 1624 00:48:40,400 --> 00:48:41,720 EXAMPLE, THERE HAVE BEEN A KIND 1625 00:48:41,720 --> 00:48:43,200 OF SIDE BARGAINING WITH 1626 00:48:43,200 --> 00:48:44,240 COMPANIES DEVELOPING PRODUCTS 1627 00:48:44,240 --> 00:48:46,360 AND ACTUALLY ONE OF THESE WENT 1628 00:48:46,360 --> 00:48:47,480 IN A BAD DIRECTION. 1629 00:48:47,480 --> 00:48:49,160 A CASE AGAINST THE -- THE 1630 00:48:49,160 --> 00:48:50,120 GREENBERG CASE OUT OF MIAMI, 1631 00:48:50,120 --> 00:48:53,520 WHICH IS ABOUT, IF I REMEMBER 1632 00:48:53,520 --> 00:48:56,120 CORRECTLY, CATAVANSX, PARENTS 1633 00:48:56,120 --> 00:48:57,520 WHO HAD THE SAMPLES TRIED TO 1634 00:48:57,520 --> 00:48:59,280 ORGANIZE IN THIS WAY, NOT FOR 1635 00:48:59,280 --> 00:49:01,040 ACTUALLY THEY WANTED TO MAKE 1636 00:49:01,040 --> 00:49:02,000 MONEY BUT ACTUALLY FOR 1637 00:49:02,000 --> 00:49:03,800 AGREEMENTS WITH THE COMPANY, IF 1638 00:49:03,800 --> 00:49:06,040 I RECALL IT CORRECTLY, ON HOW 1639 00:49:06,040 --> 00:49:06,800 THE ULTIMATE DRUG WOULD BE 1640 00:49:06,800 --> 00:49:07,920 PRICED AND SORT OF PROFIT 1641 00:49:07,920 --> 00:49:09,400 SHARING DOWN THE ROAD OR 1642 00:49:09,400 --> 00:49:11,720 PAYBACK, RIGHT? 1643 00:49:11,720 --> 00:49:14,720 SO THIS IS NOT A FACETIOUS OR 1644 00:49:14,720 --> 00:49:15,360 HYPOTHETICAL EXAMPLE. 1645 00:49:15,360 --> 00:49:17,800 FOR ME, THE QUESTION -- SO IT 1646 00:49:17,800 --> 00:49:19,600 TAKES US BACK TO THE QUESTION OF 1647 00:49:19,600 --> 00:49:20,120 DESSERT. 1648 00:49:20,120 --> 00:49:22,920 THE MORE WE'RE ASKING A LOT OF 1649 00:49:22,920 --> 00:49:24,120 THE INDIVIDUAL PEOPLE, SO WE'RE 1650 00:49:24,120 --> 00:49:25,520 ASKING TO YOU DO SOMETHING 1651 00:49:25,520 --> 00:49:26,960 THAT'S UNIQUE TO YOU AND TO MAKE 1652 00:49:26,960 --> 00:49:28,320 A SACRIFICE THAT'S UNIQUE TO 1653 00:49:28,320 --> 00:49:29,720 YOU, THE MORE IT LOOKS TO ME 1654 00:49:29,720 --> 00:49:33,440 LIKE IT'S WORK. 1655 00:49:33,440 --> 00:49:34,360 THE MORE WE'RE ASKING TO YOU 1656 00:49:34,360 --> 00:49:35,440 SHARE SOMETHING IN A RELATIVELY 1657 00:49:35,440 --> 00:49:36,960 KIND OF LOW DEMAND SORT OF WAY 1658 00:49:36,960 --> 00:49:38,640 THAT IS NOT IMPOSING A LOT ON 1659 00:49:38,640 --> 00:49:41,480 YOU AND FOR ACTUALLY -- IT'S NOT 1660 00:49:41,480 --> 00:49:42,160 SOMETHING SPECIFIC ABOUT YOU. 1661 00:49:42,160 --> 00:49:43,520 SO ANOTHER WAY OF PUTTING THIS, 1662 00:49:43,520 --> 00:49:44,920 I'M SORRY TO BE SLIGHTLY -- IT'S 1663 00:49:44,920 --> 00:49:46,640 A GREAT QUESTION SO MAYBE I'M -- 1664 00:49:46,640 --> 00:49:47,760 A LITTLE BIT BUT HERE'S WHAT 1665 00:49:47,760 --> 00:49:49,440 I'LL SAY, IS ONE OF THE REASONS 1666 00:49:49,440 --> 00:49:51,040 WHY WE HAVEN'T SEEN THIS VERY 1667 00:49:51,040 --> 00:49:54,560 MUCH IS IN A POST THEOLOGICAL 1668 00:49:54,560 --> 00:49:55,440 MANNER, IT REQUIRES A GROUP OF 1669 00:49:55,440 --> 00:49:56,840 PEOPLE WHO ARE PRETTY CLOSELY 1670 00:49:56,840 --> 00:49:58,280 BOUND TOGETHER TO UNDERSTAND 1671 00:49:58,280 --> 00:50:01,040 THEMSELVES TO BE PART OF 1672 00:50:01,040 --> 00:50:01,320 COMMUNITY. 1673 00:50:01,320 --> 00:50:02,360 TO BARGAIN IN THIS WAY. 1674 00:50:02,360 --> 00:50:03,920 WHEN YOU'RE TALKING ABOUT TAKING 1675 00:50:03,920 --> 00:50:05,160 ANTIBODIES FROM PEOPLE WHO HAVE 1676 00:50:05,160 --> 00:50:06,280 HAD COVID, THERE'S A LOT OF 1677 00:50:06,280 --> 00:50:07,680 PEOPLE IN THE WORLD WHO HAVE HAD 1678 00:50:07,680 --> 00:50:07,920 COVID. 1679 00:50:07,920 --> 00:50:09,440 WE DON'T KNOW VERY MUCH ABOUT 1680 00:50:09,440 --> 00:50:11,360 OUR ANTIBODY, WE DON'T IDENTIFY 1681 00:50:11,360 --> 00:50:12,880 OURSELVES AS PEOPLE WHO HAD 1682 00:50:12,880 --> 00:50:15,720 COVID AND THINK THAT WE'D GET 1683 00:50:15,720 --> 00:50:16,000 TOGETHER. 1684 00:50:16,000 --> 00:50:17,760 WHEN YOU TALK ABOUT A SMALL RARE 1685 00:50:17,760 --> 00:50:18,760 DISEASE GROUP BY CONTRAST, THEY 1686 00:50:18,760 --> 00:50:19,840 ARE PEOPLE WHO HAVE A THICK 1687 00:50:19,840 --> 00:50:21,200 CONNECTION WITH ONE ANOTHER AND 1688 00:50:21,200 --> 00:50:24,040 WHO HAVE GOALS THAT ARE VERY 1689 00:50:24,040 --> 00:50:24,480 WELL ALIGNED. 1690 00:50:24,480 --> 00:50:27,680 TO ME, THE EXPLANATION WHERE 1691 00:50:27,680 --> 00:50:28,640 WE'VE SEEN AND WHERE WE HAVEN'T 1692 00:50:28,640 --> 00:50:31,760 IS DIRECTLY RELATED TO THINGS AS 1693 00:50:31,760 --> 00:50:33,320 A SOCIOLOGICAL MANNER. 1694 00:50:33,320 --> 00:50:34,000 >>RIGHT. 1695 00:50:34,000 --> 00:50:34,880 A COUPLE PEOPLE ARE JUST 1696 00:50:34,880 --> 00:50:39,040 POINTING OUT THAT -- AND GLENN, 1697 00:50:39,040 --> 00:50:40,040 YOU BRIEFLY MENTIONED THIS AT 1698 00:50:40,040 --> 00:50:41,880 THE BEGINNING WHEN WE START 1699 00:50:41,880 --> 00:50:43,480 THINKING ABOUT SELF-EX-PAIR 1700 00:50:43,480 --> 00:50:45,360 MENTATION IN A WAY YOU COULD 1701 00:50:45,360 --> 00:50:47,400 SORT OF ROUGHLY THINK ABOUT THIS 1702 00:50:47,400 --> 00:50:49,040 IN THAT LIGHT, THAT THERE'S AN 1703 00:50:49,040 --> 00:50:50,400 INTERESTING OR NOVEL KIND OF 1704 00:50:50,400 --> 00:50:51,960 CONFLICT OF INTEREST THAT GETS 1705 00:50:51,960 --> 00:50:55,120 INTRODUCED WHERE YOU HAVE THE 1706 00:50:55,120 --> 00:50:58,120 RESEARCHER WH'S ALSO THE 1707 00:50:58,120 --> 00:51:00,000 PARTICIPANT AND IN THIS CASE YOU 1708 00:51:00,000 --> 00:51:01,080 MIGHT WORRY PARTICULARLY IF WE 1709 00:51:01,080 --> 00:51:02,480 WENT WITH THE SCHEME WHERE THE 1710 00:51:02,480 --> 00:51:05,080 SAMPLE DONORS GET TO SHARE 1711 00:51:05,080 --> 00:51:06,400 IN THE PROFITS, WHERE YOU MIGHT 1712 00:51:06,400 --> 00:51:08,960 IMAGINE THAT THEN RESEARCHERS 1713 00:51:08,960 --> 00:51:10,640 JUST MIRACULOUSLY KEEP FINDING 1714 00:51:10,640 --> 00:51:12,160 THAT THEIR CELLS ARE THE MOST 1715 00:51:12,160 --> 00:51:13,240 POTENT ONES AND THOSE ARE THE 1716 00:51:13,240 --> 00:51:14,760 ONES WHO GET DEVELOPED FOR 1717 00:51:14,760 --> 00:51:16,560 VACCINES, RIGHT? 1718 00:51:16,560 --> 00:51:17,800 NOW, JEFF CAN COMMENT ON THIS IF 1719 00:51:17,800 --> 00:51:20,360 HE WANTS, BUT MY UNDERSTANDING 1720 00:51:20,360 --> 00:51:22,880 IS THAT THAT WASN'T THE WORRY IN 1721 00:51:22,880 --> 00:51:24,520 THIS CASE, THERE REALLY WAS 1722 00:51:24,520 --> 00:51:26,040 EVIDENCE IN THIS CASE THAT THE 1723 00:51:26,040 --> 00:51:26,880 INVESTIGATOR'S WAS THE MOST 1724 00:51:26,880 --> 00:51:28,200 POTENT, BUT I THINK AS A GENERAL 1725 00:51:28,200 --> 00:51:29,400 POINT, IT'S RIGHT, AND I THINK 1726 00:51:29,400 --> 00:51:32,080 IT COMES BACK TO THE QUESTION 1727 00:51:32,080 --> 00:51:33,920 I'D ASKED GLENN A COUPLE AGO, 1728 00:51:33,920 --> 00:51:36,480 WHICH IS THAT BY INCENTIVIZING 1729 00:51:36,480 --> 00:51:38,040 RESEARCHERS, COMPANIES AND 1730 00:51:38,040 --> 00:51:40,040 OTHERS, WE BOTH INCENTIVIZE GOOD 1731 00:51:40,040 --> 00:51:41,200 BEHAVIOR AND SOMETIMES BAD 1732 00:51:41,200 --> 00:51:42,680 BEHAVIOR, AND WE NEED TO FIGURE 1733 00:51:42,680 --> 00:51:45,120 OUT HOW THOSE THINGS WASH OUT. 1734 00:51:45,120 --> 00:51:47,560 BUT MY UNDERSTANDING IN THIS 1735 00:51:47,560 --> 00:51:49,160 CASE, IT GENERALLY IS AN ISSUE 1736 00:51:49,160 --> 00:51:50,000 BUT NOT NECESSARILY IN THIS 1737 00:51:50,000 --> 00:51:50,200 CASE. 1738 00:51:50,200 --> 00:51:51,360 I DON'T KNOW IF YOU HAVE ANY 1739 00:51:51,360 --> 00:51:56,040 THOUGHTS ON THAT, JEFF, OR 1740 00:51:56,040 --> 00:51:56,320 COMMENTS? 1741 00:51:56,320 --> 00:52:00,640 YOU'RE MUTED, JEFF. 1742 00:52:00,640 --> 00:52:02,080 >>IN THIS CASE, THE RESEARCHER 1743 00:52:02,080 --> 00:52:03,880 WAS ACTUALLY UNCOMFORTABLE WHEN 1744 00:52:03,880 --> 00:52:05,080 THEY FOUND OUT THAT THEY HAD THE 1745 00:52:05,080 --> 00:52:07,760 HIGHEST LEVEL OF ANTIBODY. 1746 00:52:07,760 --> 00:52:09,840 AND ALTHOUGH THEIR ANTIBODY WAS 1747 00:52:09,840 --> 00:52:10,920 HIGHER THAN THE OTHER ONES, IT 1748 00:52:10,920 --> 00:52:13,080 WAS NOT HUGELY HIGHER, AND THE 1749 00:52:13,080 --> 00:52:17,760 RESEARCHER ACTUALLY DECIDED TO 1750 00:52:17,760 --> 00:52:19,720 USE OTHER PARTICIPANTS' CELLS 1751 00:52:19,720 --> 00:52:22,360 FOR THIS. 1752 00:52:22,360 --> 00:52:23,920 THERE WAS JUST SOME ETHICAL, YOU 1753 00:52:23,920 --> 00:52:25,480 KNOW, DILEMMA THAT THE 1754 00:52:25,480 --> 00:52:28,800 RESEARCHER FELT LIKE, AND AGAIN, 1755 00:52:28,800 --> 00:52:30,600 I THINK IT COULD GO BOTH WAY, IF 1756 00:52:30,600 --> 00:52:33,240 THE RESEARCHER'S SAMPLES WERE 1757 00:52:33,240 --> 00:52:34,840 REALLY BETTER, YOU KNOW, MAYBE 1758 00:52:34,840 --> 00:52:36,320 THEY SHOULD HAVE BEEN USED. 1759 00:52:36,320 --> 00:52:37,520 BUT THERE WERE CONCERNS THAT 1760 00:52:37,520 --> 00:52:38,840 DOWN THE ROAD, YOU KNOW, THAT 1761 00:52:38,840 --> 00:52:40,320 THIS COULD CAUSE PROBLEMS AND 1762 00:52:40,320 --> 00:52:42,160 THEY JUST DIDN'T WANT TO HAVE IT 1763 00:52:42,160 --> 00:52:43,280 REALLY TRULY INTERFERE WITH 1764 00:52:43,280 --> 00:52:49,320 THEIR RESEARCH, PER SE. 1765 00:52:49,320 --> 00:52:51,320 >>SO ANOTHER QUESTION FOR YOU, 1766 00:52:51,320 --> 00:52:52,400 JEFF, IF YOU HAVE ANY THOUGHTS 1767 00:52:52,400 --> 00:52:54,960 ON THIS GLENN WAS SUGGESTING, AS 1768 00:52:54,960 --> 00:52:56,200 HE POINTED OUT, THAT CURRENT 1769 00:52:56,200 --> 00:53:00,120 PRACTICE IS DIFFERENT BETWEEN 1770 00:53:00,120 --> 00:53:01,680 RESEARCHERS AND SAMPLE DONORS 1771 00:53:01,680 --> 00:53:03,440 AND I WAS IN EFFECT ARGUING THAT 1772 00:53:03,440 --> 00:53:05,880 AT LEAST IN SOME CASES, WE 1773 00:53:05,880 --> 00:53:08,280 SHOULD AS PHILOSOPHERS LEVEL UP 1774 00:53:08,280 --> 00:53:09,640 AND WE SHOULD SHARE PROFITS WITH 1775 00:53:09,640 --> 00:53:12,040 BOTH RESEARCH PARTICIPANTS AND 1776 00:53:12,040 --> 00:53:12,360 RESEARCHERS. 1777 00:53:12,360 --> 00:53:13,680 GLENN SUGGESTED, WELL, MAYBE IT 1778 00:53:13,680 --> 00:53:15,640 SHOULD GO THE OTHER WAY FOR A 1779 00:53:15,640 --> 00:53:17,080 NUMBER OF INTERESTING REASONS, 1780 00:53:17,080 --> 00:53:19,680 AND WE SHOULD INCENTIVIZE 1781 00:53:19,680 --> 00:53:21,280 RESEARCHERS, JUST LIKE WE DON'T 1782 00:53:21,280 --> 00:53:22,560 INCENTIVIZE RESEARCH 1783 00:53:22,560 --> 00:53:22,920 PARTICIPANTS. 1784 00:53:22,920 --> 00:53:25,040 ANY THOUGHTS ON THAT, JEFF, FROM 1785 00:53:25,040 --> 00:53:26,360 A RESEARCHER PERSPECTIVE ABOUT 1786 00:53:26,360 --> 00:53:27,360 SAYING, ALL RIGHT, MAYBE WE 1787 00:53:27,360 --> 00:53:28,640 SHOULDN'T HAVE THESE KINDS OF 1788 00:53:28,640 --> 00:53:31,720 FINANCIAL INCENTIVES FOR 1789 00:53:31,720 --> 00:53:32,000 RESEARCHERS? 1790 00:53:32,000 --> 00:53:33,200 >>YEAH, I'M A LITTLE BIT 1791 00:53:33,200 --> 00:53:36,040 WORRIED THAT IF ONE INSTITUTION, 1792 00:53:36,040 --> 00:53:37,920 LET'S SAY THE NIH, HAS A POLICY 1793 00:53:37,920 --> 00:53:38,640 AND THE UNIVERSITIES MAY NOT 1794 00:53:38,640 --> 00:53:40,040 HAVE A POLICY OR HAVE A 1795 00:53:40,040 --> 00:53:42,920 DIFFERENT POLICY, IT COULD 1796 00:53:42,920 --> 00:53:45,640 INCENTIVIZE PEOPLE TO LEAVE 1797 00:53:45,640 --> 00:53:48,440 WHERE THEY ARE AND MOVE TO A 1798 00:53:48,440 --> 00:53:52,080 PLACE WHERE THEY HAVE A BETTER 1799 00:53:52,080 --> 00:53:54,960 CHANCE OF PROFITING FROM THEIR 1800 00:53:54,960 --> 00:53:55,640 INVENTIONS, PARTICULARLY IF 1801 00:53:55,640 --> 00:53:56,600 THEY'RE A RESEARCHER THAT REALLY 1802 00:53:56,600 --> 00:54:00,600 IS GETTING CLOSE TO DEVELOPING 1803 00:54:00,600 --> 00:54:00,880 THINGS. 1804 00:54:00,880 --> 00:54:04,080 SO THINK WE HAVE TO BE VERY 1805 00:54:04,080 --> 00:54:07,720 CAREFUL NOT TO -- TO HAVE A 1806 00:54:07,720 --> 00:54:11,080 POLICY THAT'S CONSISTENT. 1807 00:54:11,080 --> 00:54:13,240 ' WE SEE THIS, OF COURSE, WITH 1808 00:54:13,240 --> 00:54:15,240 SOMETIMES RESEARCHERS STARTING 1809 00:54:15,240 --> 00:54:16,520 COMPANIES AND THINGS, BUT I JUST 1810 00:54:16,520 --> 00:54:18,320 THINK WE WANT TO BE CAREFUL THAT 1811 00:54:18,320 --> 00:54:21,640 SOTHERE'S SORT OF A LEVEL PLAYIG 1812 00:54:21,640 --> 00:54:22,080 FIELD. 1813 00:54:22,080 --> 00:54:23,040 INTERESTING TO HEAR WHAT GLENN 1814 00:54:23,040 --> 00:54:23,480 HAS TO SAY. 1815 00:54:23,480 --> 00:54:25,280 >>GLENN, ANY ADDITIONAL 1816 00:54:25,280 --> 00:54:26,920 THOUGHTS ON THAT? 1817 00:54:26,920 --> 00:54:29,240 >>NO, I THINK THAT'S EXACTLY 1818 00:54:29,240 --> 00:54:30,360 RIGHT, THAT THERE'S THIS 1819 00:54:30,360 --> 00:54:33,760 QUESTION OF -- THERE ARE 1820 00:54:33,760 --> 00:54:36,600 DIFFERENT EQUALLY BREE UM -- YOU 1821 00:54:36,600 --> 00:54:37,800 DON'T WANT TO BE IN THE CASE 1822 00:54:37,800 --> 00:54:39,000 THAT YOU'RE NOT DOING WHAT 1823 00:54:39,000 --> 00:54:40,200 EVERYBODY ELSE IS. 1824 00:54:40,200 --> 00:54:42,040 NIH HAS AMAZING WONDERFUL 1825 00:54:42,040 --> 00:54:43,240 SCIENTIST, ALREADY HAS TRIED 1826 00:54:43,240 --> 00:54:44,560 VERY HARD TO RETAIN THEM AS 1827 00:54:44,560 --> 00:54:45,680 AGAINST THE PRIVATE SEC, TO AND 1828 00:54:45,680 --> 00:54:47,640 IT WOULD BE A SHAME IF THIS WAS 1829 00:54:47,640 --> 00:54:48,560 ONE ADDITIONAL REASON WHY THE 1830 00:54:48,560 --> 00:54:55,960 PRIVATE SECTOR WAS ABLE TO -- 1831 00:54:55,960 --> 00:54:57,160 >>SO THE QUESTION THAT SOMEBODY 1832 00:54:57,160 --> 00:54:58,640 POINTED OUT, I'VE BEEN THINKING 1833 00:54:58,640 --> 00:55:00,560 ABOUT IN THE PAST AND ALSO IN 1834 00:55:00,560 --> 00:55:01,920 PREPARING FOR THIS, 1835 00:55:01,920 --> 00:55:02,920 APPARENTLY -- I DIDN'T KNOW 1836 00:55:02,920 --> 00:55:04,320 THIS, BUT AT LEAST THE 1837 00:55:04,320 --> 00:55:08,480 QUESTIONER SAYS THAT ACCORDING 1838 00:55:08,480 --> 00:55:10,960 TO WTO, THE WORLD TRADE 1839 00:55:10,960 --> 00:55:13,600 ORGANIZATION, PATENTS ARE -- AND 1840 00:55:13,600 --> 00:55:14,600 THERE'S A QUOTE HERE, I DON'T 1841 00:55:14,600 --> 00:55:17,240 KNOW IF THIS IS RIGHT, BUT THEIR 1842 00:55:17,240 --> 00:55:18,040 INTELLECTUAL PROPERTY THAT 1843 00:55:18,040 --> 00:55:19,400 INDIVIDUALS GET RIGHTS OVER 1844 00:55:19,400 --> 00:55:22,560 CREATIONS OF THEIR MINDS. 1845 00:55:22,560 --> 00:55:23,520 AND THIS IS SOMETHING THAT I 1846 00:55:23,520 --> 00:55:26,320 THOUGHT WAS INTERESTING IN 1847 00:55:26,320 --> 00:55:27,880 THINKING ABOUT CURRENT PRACTICE. 1848 00:55:27,880 --> 00:55:32,000 AND IT SEEMS TO ME, MAYBE 1849 00:55:32,000 --> 00:55:33,520 THERE'S SOME MORE RADICAL PERSON 1850 00:55:33,520 --> 00:55:35,560 WHO'S WRITTEN ON THIS, IT WOULD 1851 00:55:35,560 --> 00:55:37,080 BE INTERESTING, BUT IT SEEMS TO 1852 00:55:37,080 --> 00:55:38,120 ME THAT -- I DON'T KNOW WHAT YOU 1853 00:55:38,120 --> 00:55:41,560 THINK ABOUT THIS, GLENN, BUT 1854 00:55:41,560 --> 00:55:43,160 THERE'S ARGUABLY A WAY IN WHICH 1855 00:55:43,160 --> 00:55:44,720 CURRENT PRACTICE SEEMS TO 1856 00:55:44,720 --> 00:55:47,000 PRIVILEGE OR PRIORITIZE 1857 00:55:47,000 --> 00:55:49,480 CONTRIBUTIONS THAT COME FROM 1858 00:55:49,480 --> 00:55:52,200 PEOPLE'S MINDS OR PEOPLE'S 1859 00:55:52,200 --> 00:55:53,000 BRAINS OVER CONTRIBUTIONS THAT 1860 00:55:53,000 --> 00:55:57,600 COME FROM PEOPLE'S BODIES. 1861 00:55:57,600 --> 00:55:59,280 SO SOME PEOPLE, WHEN I TALK 1862 00:55:59,280 --> 00:56:03,120 ABOUT THIS ISSUE, THEY'LL SAY, 1863 00:56:03,120 --> 00:56:04,480 LOOK, DAVE, THERE'S A HUGE 1864 00:56:04,480 --> 00:56:06,400 DIFFERENCE BETWEEN THE KINDS OF 1865 00:56:06,400 --> 00:56:07,520 CONTRIBUTIONS THAT RESEARCHERS 1866 00:56:07,520 --> 00:56:08,760 MAKE AND THE KINDS OF 1867 00:56:08,760 --> 00:56:11,080 CONTRIBUTIONS THAT PEOPLE LIKE 1868 00:56:11,080 --> 00:56:13,280 HENRIETTA LACKS MAKE THE LONG 1869 00:56:13,280 --> 00:56:15,640 TERM NON-PROGRESSORS, MAYBE 1870 00:56:15,640 --> 00:56:17,360 RESEARCHERS LIKE THE PRESENT 1871 00:56:17,360 --> 00:56:17,560 ONE. 1872 00:56:17,560 --> 00:56:19,040 IN THE CASE OF THE RESEARCHERS, 1873 00:56:19,040 --> 00:56:21,600 IT'S THEIR MINDS, THEIR 1874 00:56:21,600 --> 00:56:24,160 THINKING, THEY'RE COGITATING, 1875 00:56:24,160 --> 00:56:25,800 THEY GOT AN EDUCATION, IT COMES 1876 00:56:25,800 --> 00:56:26,600 FROM THEIR MINDS. 1877 00:56:26,600 --> 00:56:28,360 IN THE CASE OF THE PARTICIPANT, 1878 00:56:28,360 --> 00:56:32,040 IT'S COMING FROM THEIR BODIES. 1879 00:56:32,040 --> 00:56:35,360 AND I THINK IT DOES SEEM TO ME 1880 00:56:35,360 --> 00:56:36,720 THAT THERE'S AT LEAST ARGUABLY A 1881 00:56:36,720 --> 00:56:40,240 DIFFERENCE IN THE WAY WE TREAT 1882 00:56:40,240 --> 00:56:42,840 THOSE NOW, AND I THINK THE 1883 00:56:42,840 --> 00:56:44,760 QUESTION -- IT WOULD BE VERY 1884 00:56:44,760 --> 00:56:46,040 INTERESTING -- FROM AN INCENTIVE 1885 00:56:46,040 --> 00:56:47,160 POINT OF VIEW IF THAT DIFFERENCE 1886 00:56:47,160 --> 00:56:48,400 MAKES SENSE, MAYBE IT DOESN'T 1887 00:56:48,400 --> 00:56:51,560 MAKE SENSE FROM A INCENTIVE 1888 00:56:51,560 --> 00:56:53,480 STRUCTURE APPROACH BUT MAYBE AT 1889 00:56:53,480 --> 00:56:54,920 LEAST SOME PEOPLE THINK -- I 1890 00:56:54,920 --> 00:56:56,360 DON'T KNOW IF IT'S A BIAS OR 1891 00:56:56,360 --> 00:56:58,040 NOT, MY WORRY IS TO THINK THAT 1892 00:56:58,040 --> 00:57:00,920 IT A KIND OF PRIVILEGING OF THE 1893 00:57:00,920 --> 00:57:02,320 PEOPLE WHO PROBABLY WROTE THE 1894 00:57:02,320 --> 00:57:03,480 RULES IN THE FIRST PLACE. 1895 00:57:03,480 --> 00:57:05,240 THEY WERE PROBABLY THE SMARTER, 1896 00:57:05,240 --> 00:57:07,440 MORE EDUCATED PEOPLE, AND THEY 1897 00:57:07,440 --> 00:57:09,040 THOUGHT, YOU KNOW, WHAT WE 1898 00:57:09,040 --> 00:57:11,520 REALLY PRIORITIZE, SO THEY WERE 1899 00:57:11,520 --> 00:57:13,920 THE PEOPLE WHO WORK AT THE NIH 1900 00:57:13,920 --> 00:57:18,120 AND WORKED AT HARVARD, THEY 1901 00:57:18,120 --> 00:57:19,160 WEREN'T MICHAEL PHELPS AND 1902 00:57:19,160 --> 00:57:20,320 PEOPLE WHO CAN DUNK FROM THE 1903 00:57:20,320 --> 00:57:20,800 FOUL LINE. 1904 00:57:20,800 --> 00:57:22,480 SO THEY WERE PRIORITIZING THE 1905 00:57:22,480 --> 00:57:23,760 MENTAL OVER THE PHYSICAL. 1906 00:57:23,760 --> 00:57:26,200 BUT IT DOES SEEM TO ME THAT 1907 00:57:26,200 --> 00:57:27,480 THERE IS THAT DIFFERENCE, AND 1908 00:57:27,480 --> 00:57:29,080 I'M AT LEAST A LITTLE SKEPTICAL 1909 00:57:29,080 --> 00:57:30,520 OF IT, SO WE ONLY HAVE 2 MINUTES 1910 00:57:30,520 --> 00:57:32,800 AND THIS IS OBVIOUSLY JUST AN 1911 00:57:32,800 --> 00:57:35,720 ENORMOUS QUESTION, AND LET ME 1912 00:57:35,720 --> 00:57:36,680 APOLOGIZE AGAIN, THERE ARE SOME 1913 00:57:36,680 --> 00:57:38,040 QUESTIONS WHICH I JUST HAVEN'T 1914 00:57:38,040 --> 00:57:39,240 GOTTEN TO WHICH ARE WONDERFUL 1915 00:57:39,240 --> 00:57:39,760 QUESTIONS. 1916 00:57:39,760 --> 00:57:43,120 THIS DID TURN OUT -- I WILL SAY 1917 00:57:43,120 --> 00:57:44,200 I WAS DEFINITELY RIGHT IN THIS 1918 00:57:44,200 --> 00:57:45,520 REGARD, THIS WAS A GREAT TOPIC 1919 00:57:45,520 --> 00:57:47,560 AND I'M REALLY GLAD WE DID IT, 1920 00:57:47,560 --> 00:57:48,520 AND THANK YOU VERY MUCH TO GLENN 1921 00:57:48,520 --> 00:57:50,160 AND JEFF FOR BEING WONDERFUL 1922 00:57:50,160 --> 00:57:52,000 PARTICIPANTS IN IT. 1923 00:57:52,000 --> 00:57:53,760 BUT WE JUST HAVE ABOUT A MINUTE 1924 00:57:53,760 --> 00:57:55,080 AND A HALF LEFT, GLENN. 1925 00:57:55,080 --> 00:57:56,560 I DON'T KNOW IF YOU WANT TO 1926 00:57:56,560 --> 00:57:57,480 COMMENT ON THAT OR ANYTHING ELSE 1927 00:57:57,480 --> 00:57:58,640 THAT REALLY STRIKES YOUR -- 1928 00:57:58,640 --> 00:58:00,400 >>YEAH. 1929 00:58:00,400 --> 00:58:04,800 SO I WOULD SAY THE -- IS BODIES 1930 00:58:04,800 --> 00:58:07,440 VERSUS MINDS, ELSEWHERE IN THE 1931 00:58:07,440 --> 00:58:09,240 WORLD, THERE'S A LOT OF EFFORT 1932 00:58:09,240 --> 00:58:10,440 INVOLVED IN BEING A MODEL AS 1933 00:58:10,440 --> 00:58:12,040 WELL, BUT WE'RE NOT LIKE AGAINST 1934 00:58:12,040 --> 00:58:13,680 REIMBURSING PEOPLE ON A 1935 00:58:13,680 --> 00:58:14,760 DIFFERENT RATE BASED ON 1936 00:58:14,760 --> 00:58:15,880 DIFFERENCES IN THEIR BODY. 1937 00:58:15,880 --> 00:58:17,880 I THINK TO ME, IT'S WHETHER 1938 00:58:17,880 --> 00:58:18,960 THERE ARE THINGS YOU CULTIVATED 1939 00:58:18,960 --> 00:58:20,520 AND YOU HAD EFFORT INVOLVED IN 1940 00:58:20,520 --> 00:58:21,560 VERSUS NOT. 1941 00:58:21,560 --> 00:58:21,920 RIGHT? 1942 00:58:21,920 --> 00:58:24,120 SO THE QUESTION FOR ME IS -- SO 1943 00:58:24,120 --> 00:58:29,640 I THINK ABOUT SOMEONE LIKE 1944 00:58:29,640 --> 00:58:30,400 AI-GENERATED ART AS AN 1945 00:58:30,400 --> 00:58:31,360 INTERESTING EXAMPLE, RIGHT? 1946 00:58:31,360 --> 00:58:33,360 YOU PUT IT IN, IT HAS AN OUTPUT. 1947 00:58:33,360 --> 00:58:37,240 THE PERSON WHO CREATES THE AI, 1948 00:58:37,240 --> 00:58:39,480 THEY DESERVE COMPENSATION. 1949 00:58:39,480 --> 00:58:42,320 BUT IF I SAY HERE'S SIX RANDOM 1950 00:58:42,320 --> 00:58:44,240 NUMBERS AND IT'S GOING TO 1951 00:58:44,240 --> 00:58:46,000 GENERATE A PAINTING, IS THE 1952 00:58:46,000 --> 00:58:47,840 PERSON WHO GENERATES THE NUMBERS 1953 00:58:47,840 --> 00:58:48,920 DESERVE COMPENSATION? 1954 00:58:48,920 --> 00:58:50,240 TO ME THESE ARE ALL CONNECTED 1955 00:58:50,240 --> 00:58:51,680 BUT THERE'S AN OVERARCHING 1956 00:58:51,680 --> 00:58:52,720 QUESTION WHICH IS WHAT KIND OF 1957 00:58:52,720 --> 00:58:53,800 SOCIAL PRACTICE IS RESEARCH? 1958 00:58:53,800 --> 00:58:55,560 IS IT LIKE THE SOCIAL PRACTICE 1959 00:58:55,560 --> 00:58:57,280 OF SPORT, IS IT LIKE THE SOCIAL 1960 00:58:57,280 --> 00:58:59,120 PRACTICE OF ART, IS IT LIKE THE 1961 00:58:59,120 --> 00:59:00,760 SOCIAL PRACTICE OF MODELING, OR 1962 00:59:00,760 --> 00:59:06,960 IS ITITY OWN T IT ITS OWN THINGN 1963 00:59:06,960 --> 00:59:09,200 ORGANIZING PRINCIPLES? 1964 00:59:09,200 --> 00:59:10,240 >>WOW. 1965 00:59:10,240 --> 00:59:11,000 WE'RE JUST AT TIME. 1966 00:59:11,000 --> 00:59:13,920 SO I WANT TO THANK JEFF AND 1967 00:59:13,920 --> 00:59:15,440 GLENN AGAIN FOR A REALLY 1968 00:59:15,440 --> 00:59:16,120 WONDERFUL SESSION AND FOR ALL OF 1969 00:59:16,120 --> 00:59:16,920 THE QUESTIONS. 1970 00:59:16,920 --> 00:59:18,840 I'LL TRY TO GET TO THE ONES I 1971 00:59:18,840 --> 00:59:21,480 DIDN'T GET TO, AND FOR EVERYBODY 1972 00:59:21,480 --> 00:59:23,560 ELSE, THANKS FOR TUNING IN, AND 1973 00:59:23,560 --> 00:59:26,480 WE HOPE TO SEE YOU THE FIRST 1974 00:59:26,480 --> 00:59:28,360 WEDNESDAY IN FEBRUARY, WHEN 1975 00:59:28,360 --> 00:59:31,520 WE'LL HAVE A GREAT SESSION 1976 00:59:31,520 --> 00:59:33,760 ACTUALLY ON VACCINES FOR COVID, 1977 00:59:33,760 --> 00:59:36,400 AND WE'RE TRAGOONING AND 1978 00:59:36,400 --> 00:59:38,440 DRAGGING BACK IN A SENSE THE 1979 00:59:38,440 --> 00:59:40,200 FOUNDER OF THESE ETHICS GRAND 1980 00:59:40,200 --> 00:59:41,960 ROUNDS WHO WAS THE HEAD OF 1981 00:59:41,960 --> 00:59:45,000 BIOETHICS AND IS NOW AT PENN TO 1982 00:59:45,000 --> 00:59:46,080 BE THE DISCUSSANT. 1983 00:59:46,080 --> 00:59:47,400 SO UNTIL THE FIRST WEDNESDAY IN 1984 00:59:47,400 --> 00:59:48,000 FEBRUARY, I HOPE EVERYBODY HAS A 1985 00:59:48,000 --> 00:59:48,400 GOOD REST OF THE YEAR. 1986 00:59:48,400 --> 00:59:55,560 THANKS, YOU GUYS.