1 00:00:04,238 --> 00:00:04,638 I was just 2 00:00:04,638 --> 00:00:06,746 hoping you could give me some examples 3 00:00:06,746 --> 00:00:09,076 of a social value, because clinical value 4 00:00:09,076 --> 00:00:11,145 and scientific values are fairly easy 5 00:00:11,145 --> 00:00:13,046 to understand and visualize even. 6 00:00:13,046 --> 00:00:15,285 But I'm not sure exactly how to interpret 7 00:00:15,285 --> 00:00:16,049 social value. 8 00:00:17,184 --> 00:00:17,584 Okay. 9 00:00:17,584 --> 00:00:20,953 So social value is well, two ways to answer your 10 00:00:20,953 --> 00:00:21,655 question. 11 00:00:21,655 --> 00:00:23,337 One is that that's the rubric under 12 00:00:23,337 --> 00:00:24,491 which we put all of it. 13 00:00:24,491 --> 00:00:25,893 So there's some of that. 14 00:00:25,893 --> 00:00:30,078 But I did say valuable or useful clinically scientifically or 15 00:00:30,078 --> 00:00:30,764 socially. 16 00:00:31,231 --> 00:00:34,334 And so I think there, there could be 17 00:00:34,334 --> 00:00:37,544 I have to think of an experiment to study 18 00:00:37,544 --> 00:00:38,405 which had, 19 00:00:39,473 --> 00:00:42,476 I don't know, maybe, 20 00:00:43,210 --> 00:00:44,311 Cash transfers 21 00:00:44,311 --> 00:00:47,314 for certain vaccine uptake or something like that. 22 00:00:47,314 --> 00:00:50,083 That's a it's health related. 23 00:00:50,083 --> 00:00:52,186 It's got social value as well as perhaps 24 00:00:52,186 --> 00:00:53,553 individual value for the, 25 00:00:53,553 --> 00:00:56,823 the participants or the people who if we prove that it works. 26 00:00:57,391 --> 00:00:58,225 That just comes to mind. 27 00:00:58,225 --> 00:00:59,960 But there are definitely other examples. 28 00:00:59,960 --> 00:01:02,165 I'm just blanking on what that might be. 29 00:01:02,165 --> 00:01:02,496 Yeah. 30 00:01:02,496 --> 00:01:03,830 I think one important thing is 31 00:01:03,830 --> 00:01:05,658 some people think about social value 32 00:01:05,658 --> 00:01:07,434 as has to have clinical relevance. 33 00:01:07,834 --> 00:01:10,971 And I think that's my own view is that that's too narrow. 34 00:01:10,971 --> 00:01:14,041 Because if you think about, for example, 35 00:01:14,041 --> 00:01:16,224 early phase studies, early phase 36 00:01:16,224 --> 00:01:17,110 experiments, 37 00:01:18,946 --> 00:01:20,583 maybe they'll have clinical value down 38 00:01:20,583 --> 00:01:21,014 the road. 39 00:01:21,014 --> 00:01:24,181 But what they at the time have is scientific 40 00:01:24,181 --> 00:01:24,685 value. 41 00:01:24,685 --> 00:01:26,902 We're learning what this thing does 42 00:01:26,902 --> 00:01:29,056 or how this thing has safe it is. 43 00:01:29,056 --> 00:01:32,059 And then we can go on and test it for clinical value. 44 00:01:33,026 --> 00:01:33,694 Great. 45 00:01:33,694 --> 00:01:35,896 Do you want to introduce yourself? 46 00:01:35,896 --> 00:01:36,697 Yeah, sure. 47 00:01:36,697 --> 00:01:39,132 I'm Charlene I'm a pulls back IrDA. 48 00:01:39,132 --> 00:01:41,301 And I just want to say it was a great introduction. 49 00:01:41,301 --> 00:01:42,602 Doctor. Doctor. 50 00:01:42,602 --> 00:01:43,837 Thank you so much. 51 00:01:43,837 --> 00:01:46,290 And I actually had a similar question 52 00:01:46,290 --> 00:01:48,875 about the justifications for research. 53 00:01:48,875 --> 00:01:51,744 And while I do understand the reasons 54 00:01:51,744 --> 00:01:54,381 why we want social value or value 55 00:01:54,381 --> 00:01:57,045 in some sense for any form of research, 56 00:01:57,045 --> 00:01:58,685 I guess I was wondering 57 00:01:58,685 --> 00:02:02,500 about arguments against it and what type of arguments they 58 00:02:02,500 --> 00:02:03,223 look like. 59 00:02:03,223 --> 00:02:06,217 Is it just the inability to measure value 60 00:02:06,217 --> 00:02:08,261 or is there something else? 61 00:02:08,628 --> 00:02:11,831 And is there any cases I could think of where it's 62 00:02:11,831 --> 00:02:12,599 conception? 63 00:02:12,599 --> 00:02:14,807 The research may not have any value 64 00:02:14,807 --> 00:02:16,069 or projected value, 65 00:02:16,336 --> 00:02:18,497 but then ended up being very valuable 66 00:02:18,497 --> 00:02:19,373 down the line. 67 00:02:19,373 --> 00:02:21,541 Yeah. Great question. 68 00:02:21,541 --> 00:02:25,045 So where this idea came from is a, 69 00:02:26,179 --> 00:02:27,848 scholar who wrote in the, 70 00:02:27,848 --> 00:02:31,118 in the 1980s, who named Benjamin Friedman, 71 00:02:31,985 --> 00:02:35,222 and he wrote a paper one time called Social Value 72 00:02:35,756 --> 00:02:37,989 and basically described in the paper 73 00:02:37,989 --> 00:02:40,594 that he had what he called the nightmare. 74 00:02:40,594 --> 00:02:43,463 I was walking down the hall in his nightmare, 75 00:02:43,463 --> 00:02:45,532 and his friend came up to him and said, 76 00:02:45,532 --> 00:02:48,702 I just successfully transplanted an appendix. 77 00:02:49,503 --> 00:02:53,060 And in in the article, Benjy says he scratched his head 78 00:02:53,060 --> 00:02:53,707 and said, 79 00:02:54,307 --> 00:02:55,642 is that ethical? 80 00:02:55,642 --> 00:02:58,251 And his friend said, well, I got the guy's informed 81 00:02:58,251 --> 00:02:58,712 consent. 82 00:02:59,312 --> 00:03:01,982 But the the question was, 83 00:03:01,982 --> 00:03:03,972 what's the usefulness of understanding 84 00:03:03,972 --> 00:03:05,752 a transplantation of an appendix? 85 00:03:05,752 --> 00:03:07,899 Is there anything that we can learn from 86 00:03:07,899 --> 00:03:08,221 that? 87 00:03:08,221 --> 00:03:10,358 Is there any reason that transplanting 88 00:03:10,358 --> 00:03:12,325 an appendix would be a good thing, 89 00:03:12,325 --> 00:03:13,293 or could be a good thing, 90 00:03:13,293 --> 00:03:17,130 or we would use it clinically or scientifically or socially? 91 00:03:17,764 --> 00:03:19,299 What's the point? 92 00:03:19,299 --> 00:03:21,368 So that's an example. 93 00:03:21,368 --> 00:03:23,554 I think at the same time, you might 94 00:03:23,554 --> 00:03:26,239 imagine that at a different point in time. 95 00:03:26,239 --> 00:03:27,952 And I don't know that I don't I can't 96 00:03:27,952 --> 00:03:29,943 come up with a scientific explanation, but 97 00:03:30,177 --> 00:03:32,630 maybe there is a scientific reason 98 00:03:32,630 --> 00:03:35,515 to transplant an appendix, for example. 99 00:03:35,882 --> 00:03:38,409 And so if there is and we could learn something 100 00:03:38,409 --> 00:03:38,785 really 101 00:03:38,785 --> 00:03:40,946 valuable that might help understand 102 00:03:40,946 --> 00:03:42,489 or promote human health, 103 00:03:42,856 --> 00:03:45,232 then maybe then it would become socially 104 00:03:45,232 --> 00:03:45,826 valuable. 105 00:03:45,826 --> 00:03:48,600 But the question to start with is 106 00:03:48,600 --> 00:03:50,197 what's the reason? 107 00:03:50,197 --> 00:03:53,037 What's the what's the so what of doing this 108 00:03:53,037 --> 00:03:53,500 study? 109 00:03:53,733 --> 00:03:54,768 What are we going to. 110 00:03:54,768 --> 00:03:57,143 Why are we doing it and what are we going to learn 111 00:03:57,143 --> 00:03:57,571 from it? 112 00:03:57,571 --> 00:03:59,510 And so that's really the motivation 113 00:03:59,510 --> 00:04:00,674 behind social value. 114 00:04:01,074 --> 00:04:03,910 There are examples of studies that have been done 115 00:04:03,910 --> 00:04:07,447 that people say why did why did anyone ever do that? 116 00:04:07,447 --> 00:04:08,215 We didn't. 117 00:04:08,215 --> 00:04:10,818 You know, what's what's the usefulness of that 118 00:04:10,818 --> 00:04:11,384 question? 119 00:04:11,384 --> 00:04:13,653 And certainly there have been studies that have come out, 120 00:04:14,921 --> 00:04:16,623 more positively valuable 121 00:04:16,623 --> 00:04:19,626 than were predicted at the time. 122 00:04:19,860 --> 00:04:20,760 Does that answer your question? 123 00:04:20,760 --> 00:04:23,763 Sort of. 124 00:04:25,398 --> 00:04:27,501 Go ahead. Hi. 125 00:04:27,501 --> 00:04:30,504 I'm Jonathan. 126 00:04:31,505 --> 00:04:33,098 So I was wondering if you could talk 127 00:04:33,098 --> 00:04:33,673 a little bit 128 00:04:33,673 --> 00:04:37,210 about the methodologies that were used, 129 00:04:38,044 --> 00:04:40,247 in, like, the Belmont Report? 130 00:04:40,247 --> 00:04:41,982 Or the Helsinki. 131 00:04:41,982 --> 00:04:42,349 What was it? 132 00:04:42,349 --> 00:04:44,885 The Helsinki Declaration of Helsinki. 133 00:04:44,885 --> 00:04:47,804 So, like, I mean, was it was it sort of an interdisciplinary 134 00:04:47,804 --> 00:04:48,388 background, 135 00:04:48,388 --> 00:04:49,856 people bringing different views? 136 00:04:49,856 --> 00:04:51,523 Did they just argue about these things 137 00:04:51,523 --> 00:04:52,926 and try to solve them, or what? 138 00:04:52,926 --> 00:04:54,461 What did they do exactly? 139 00:04:54,461 --> 00:04:56,096 Yeah, that's a great question. 140 00:04:56,096 --> 00:04:58,445 Here's what I know, which is probably not 141 00:04:58,445 --> 00:04:59,132 everything. 142 00:04:59,132 --> 00:05:00,739 So the Belmont Report was written 143 00:05:00,739 --> 00:05:02,102 by the National Commission, 144 00:05:02,102 --> 00:05:03,777 and the National Commission was one of 145 00:05:03,777 --> 00:05:05,672 the first commissions in the United States 146 00:05:05,672 --> 00:05:09,242 that focused on ethics at all, but certainly was focused on 147 00:05:09,743 --> 00:05:10,977 protection of human subjects. 148 00:05:12,312 --> 00:05:14,848 The staff 149 00:05:14,848 --> 00:05:18,885 wrote the Belmont Report with documents, 150 00:05:19,386 --> 00:05:22,422 and you can find them historical versions of them. 151 00:05:22,422 --> 00:05:24,991 Bottom line was a, 152 00:05:24,991 --> 00:05:27,661 ethicist, a physician ethicist at Yale 153 00:05:27,661 --> 00:05:29,475 who did a lot of work in the establishment 154 00:05:29,475 --> 00:05:31,031 of the ethics of clinical research. 155 00:05:31,298 --> 00:05:33,166 He wrote, 156 00:05:33,166 --> 00:05:36,169 a background paper that was given to the staff, 157 00:05:36,469 --> 00:05:38,405 and the staff included people like 158 00:05:38,405 --> 00:05:40,340 Tom Beecham, who is a philosopher 159 00:05:40,340 --> 00:05:43,460 at Georgetown who was is famous for the four 160 00:05:43,460 --> 00:05:44,311 principles, 161 00:05:44,778 --> 00:05:46,938 the Georgetown mantra that in bioethics, 162 00:05:46,938 --> 00:05:48,882 I'm hopefully I'm not saying things 163 00:05:48,882 --> 00:05:50,016 that you guys don't know what I'm talking about. 164 00:05:50,016 --> 00:05:52,692 But anyway, I think it was the combination 165 00:05:52,692 --> 00:05:54,221 of background materials 166 00:05:54,221 --> 00:05:57,224 from people that were asked to supply them, 167 00:05:57,224 --> 00:06:01,094 plus the expertise of the people in the room, 168 00:06:01,094 --> 00:06:03,123 the staff, and then it had to be approved 169 00:06:03,123 --> 00:06:04,064 by the commission. 170 00:06:04,064 --> 00:06:07,165 So there's that, that sort of multidisciplinary effort 171 00:06:07,165 --> 00:06:07,567 there. 172 00:06:08,501 --> 00:06:11,338 And Helsinki is different in in each 173 00:06:11,338 --> 00:06:14,941 of the domestic medical association. 174 00:06:14,941 --> 00:06:16,743 So we have the American Medical Association. 175 00:06:16,743 --> 00:06:19,428 They're associations like that in many countries around the 176 00:06:19,428 --> 00:06:19,746 world. 177 00:06:20,080 --> 00:06:21,930 And so the World Medical Association 178 00:06:21,930 --> 00:06:23,883 is the collaboration of all of those. 179 00:06:24,217 --> 00:06:27,314 And so most of the people who would be around the table 180 00:06:27,314 --> 00:06:27,821 deciding 181 00:06:28,121 --> 00:06:30,269 are physicians who run their medical 182 00:06:30,269 --> 00:06:32,058 association in their country. 183 00:06:32,525 --> 00:06:36,863 But at least in the last several iterations of the Declaration of 184 00:06:36,863 --> 00:06:37,530 Helsinki, 185 00:06:37,530 --> 00:06:40,068 they had these consultancies, like I was mentioning, they're 186 00:06:40,068 --> 00:06:40,533 having now 187 00:06:40,800 --> 00:06:42,235 where they bring in people. 188 00:06:42,235 --> 00:06:43,903 They invite people to come and give them, 189 00:06:44,971 --> 00:06:47,907 you know, talks and information and background materials 190 00:06:47,907 --> 00:06:49,542 about specific issues. 191 00:06:49,542 --> 00:06:52,479 And then they deliberate about those. 192 00:06:52,479 --> 00:06:55,181 And a quick sidebar, 193 00:06:55,181 --> 00:06:58,451 the transcripts of everything the National Commission 194 00:06:58,451 --> 00:07:01,454 did are in a room at Georgetown. 195 00:07:01,855 --> 00:07:04,457 I visited it many years ago. 196 00:07:04,457 --> 00:07:07,060 And you have to be monitored. 197 00:07:07,060 --> 00:07:10,330 And the faculty, a member of the library staff, 198 00:07:10,330 --> 00:07:12,565 had to sit there with me to make sure 199 00:07:12,565 --> 00:07:14,801 that I didn't run off with anything. 200 00:07:14,801 --> 00:07:17,407 So if you're interested, Jonathan, 201 00:07:17,407 --> 00:07:20,473 there is a plethora of paper to review. 202 00:07:20,473 --> 00:07:23,003 There's also a whole set if, for those of 203 00:07:23,003 --> 00:07:24,978 you interested, for each report 204 00:07:24,978 --> 00:07:27,753 that the commission wrote, including the Belmont Report, 205 00:07:27,753 --> 00:07:28,348 there's one 206 00:07:28,348 --> 00:07:31,584 on IRBs, there's one on, psycho surgery. 207 00:07:33,086 --> 00:07:34,654 There are bound copies 208 00:07:34,654 --> 00:07:37,691 of the reports that then, 209 00:07:37,691 --> 00:07:39,859 so the Belmont Report and then these that 210 00:07:39,859 --> 00:07:42,929 sort of led to additional, 211 00:07:42,929 --> 00:07:45,665 there's one on kids additional regulations. 212 00:07:45,665 --> 00:07:46,700 They're on our shelf. 213 00:07:46,700 --> 00:07:48,883 You have a lot of them in the department? 214 00:07:48,883 --> 00:07:49,202 Yeah. 215 00:07:49,202 --> 00:07:51,805 And if they're not there, they're in the library. 216 00:07:51,805 --> 00:07:53,907 So thank you again, Christy.