2026 Bioethics & Black History: The Legacy of the Tuskegee Report

Good afternoon from uh from Boston and um welcome to those of you in other time zones and from around the world joining us this afternoon for our annual Bioeththics and Black History Month lecture. Uh my name is Rebecca Brenell. I have the privilege of leading the Harvard Medical School Center for Bioeththics. And as we get started, I wanted to say just a little bit about the hi the history of our black history month collaboration with the national center for bioeththics in research and healthc care at Tuskegee University. This lecture began um in 2020 uh when we started a relationship uh between uh under our former directors of our centers doc Trou at Harvard and Dr. Ruben Warren at Tuskegee to try to figure out how bioeththics could uh develop a dialogue and be a catalyst for centering the margins and those who had really not been voices that had not been included, especially black voices in the work of bioeththics um in academia and really to address the ongoing disparities uh as the height of COVID 19. uh and other social uh challenges. And uh really what this work became was an exercise in creating a very deep between our centers and the people in those centers. Um and now the legacy of that collaboration um creating this trust um through trustworthiness that doctors Warren and Trou started has become the legacy that uh Dr. David Hajj as the dire now the interim director of the national center at Tuskegee and I as the director at Harvard have inherited and so I'm really honored today um for this year's forum to turn our focus to black history and bioeththics and the legacy of the Tuskegee report. I'm joined today by two esteemed colleagues for this conversation, professors TS Harvey and David Austinon Hajj. Let me begin by introducing them first. Uh Dr. Hajj. Uh David Hajj senior currently serves as interim director, lead ethicist and research professor at the National Center for Bioeththics in Research and Healthcare at Tuskegee University. He previously served as associate director of education at the national center beginning in 2017 during which time he directed the cent's bioeththics honors program and bioeththics minor for undergraduates its annual public health ethics intensive course and outreach programs to engage the cent's target audiences. He teaches bioeththics and public health ethics courses at Tuskegee. In addition to his administrative and academic duties, Dr. Hajj is a researcher, author, and editor. He is the editor of the Cent's Journal of Healthcare Sciences and Humanities, a peer-reviewed publication in partnership with the Smithsonian Institutions Office of Sponsored Programs. Before his current appointment, Dr. Hajj served as an adjunct assistant at Georgia State University and as a guest lecturer in philosophy, theology, and ethics at the interdenominational Theologic Center in Atlanta, Georgia. He has also held teaching positions in religion and philosophy at Florida Memorial University, Nova Southeastern University, Broward College, Miami Day College, St. Thomas University, and Barry University, all in southern Florida. A native of St. Thomas, US Virgin Islands, Dr. Dr. Haj's academic background includes a bachelor of arts in Bible theology and English from American Baptist College of Tennessee, a master of arts degree in education from Oral Roberts University, a master of theologic studies degree from the Canandler School of Theology at Emory University, a doctor of ministry degree from Columbia Theologic Seminary in Atlanta, Georgia, and a PhD in philosophy from the University of Miami. Please al um please also welcome uh uh Professor TS Harvey uh who's an associate professor of medical and linguistic anthropology and global health at Vanderbilt University. One of the legacies of the Tuskegee Harvard Bioeththics Collaboration these last six years has been the deliberate work to expand our framing and our community in the work of bioeththics. And today in welcoming our esteemed colleague, Professor Harvey to this conversation, it serves both as an example of our growing relationships of and comm community um and community and our widening lens on the work of bioeththics itself. And we're so honored to have him join us in this community. He is, as I mentioned, associate professor of medical and linguistic anthropology and global health at Vanderbilt University. Dr. Dr. Harvey's research and interests focus on expanding scientific partnerships, developing innovative technologies, and building local capacity tackle largecale global public health and environmental challenges that emerge at the critical intersection of vulnerable populations, health disparities, disease, risk, environmental degradation, and water sanitation and infrastructure integrity. The evolution of this unique transdisciplinary approach is the product of more than a decade of funded collaborative research, capacity building work, and global engagement with a broad range of institutions and organizations including the Environmental Protection Agency, the World Health Organization, the Ford Foundation, and the Robert Wood Johnson Foundation. And this collaborative work has been on a wide range of topics but include but are not implemented to cross-cultural doctor patient communication language and culture in global public health waterbborne diseases interic illnesses disaster prevention and relief neighborhood approaches to risk reduction crisis management sustainability and resilience. uh regarding a really groundbreaking work that Dr. Harvey has done in technology. He led the team that created one of the nation's first virtual self-sreening tools which helped individuals assess their risk of being in uh infected with CO 19 and facilitated access to health care by directing users in real time to resources available in their areas. Most recently, in his role at the Vanderbilt Institute for Global Health, Dr. Harvey developed and designed a lowcost wearable medical device to increase prescription prescription drug adherence globally. Please join me in welcoming Dr. Harvey and Dr. Hajj. >> Thank you. >> Now, really delighted to have you both with us. To set the stage for our conversation, we decided in preparing for our time together today. To structure our conversation in three parts, past, present, and future. Uh to really frame our engagement of the legacy of the Tuskegee report. Uh to understand where and to understand where we're going first to understand where we've been, where we are now, and what we see as the opportunities for the future. And as many challenges as we have ahead of us, we really want to um want to think in a forward-looking way that also brings optimism to the many challenges uh to the solutions to the many challenges that we're facing. So um by way of introduction so we can all come up to speed quickly uh I got tasked um with uh providing just a little bit of history as we get started. So, uh, when we think about, uh, the legacy of Tuskegee, what we're really talking about is that from 1932 to 1972, over 40 years, nearly 400 uh, sharecro black sharecroppers in Mon County, Alabama, were uh were denied treatment for syphilis and followed and monitored by physicians employed by the United States Public Health Service as part of this study which was not really um uh had no therapeutic benefit and no uh no no no aim of providing benefit. It was really designed to document the natural history of the disease. The men were told that they had bad blood literal quote. Um in fact uh what happened in the course of looking at the natural course of untreated syphilis, these men um uh and the government officials who participated went to what the final report of the syphilis called quote extreme lengths to ensure that they received no therapy from any source. So in 1972, the New York Times reported that the Tuskegee syphilis study was quote the longest non- therapeutic experiment on human beings in medical history. following um this um following uh the uh this publication and the public exposure of these practices. Um there was a lot of attention understandably to um lay out ethical principles for research with human subjects. And in 1978, after four years of work, a national commission for of physicians, lawyers, and scientists released what is now known as the Belmont Report, which laid out ethical principles for research with human subjects. Um, however, um, and what we're going to be talking about today is, um, how we nonetheless have failed to recognize, uh, um, and, uh, and to make progress, uh, that has had meaningful impact for black Americans. Um 18 years after the publication of the Belmont report, uh the syphilis study legacy committee in May of 1996 uh was uh completed really looking at what the enduring uh enduring legacy um has been of the US public health service study. Um and quote uh this report uh even nearly two decades later after the Belmont report quote the study continues to cast a long shadow over the relationship between African-Americans and the biomed professions. It is argued that the study is a significant low participation of African-Americans in clinical trials, organ donation efforts, and routine preventive care. In view of this, the committee came up with two specific recommendations. First, what became a recommended uh public apology by then President Bill Clinton. um and also uh the need to address a systemic way of ensuring that there was a strategies to redress the damages caused by this study. And central to the recommendations of how to do that was the establishment of what is now the National Center for Bioeththics in Research and Healthcare at Tuskegee University. So here we are now. Um it's 30 years after the final report of the syphilis study legacy commi committee and we know um uh it's also f um more than five years after 19 came upon us and we again experienced major disparities um in health care that was available um and the impact of um in that case a global pandemic disproportion on black Americans and um and other Americans um uh of color. And so now now we turn um in our bioeththics and black history um uh conversation today um to really understand the ongoing leg legacy of the Tuskegee report, what we need to do and ought to do to address that um and where we go in the future. So I'm going to start um with Dr. Haj um and um asking you that question sort of where are we and um what are the legacies that we see today of the US public health service study but even more than that um just to sort of tee you up you've advocated that we're both not where and that if we want to go where we have to be in terms of ensuring better health for um uh for every American and in particular for black Americans um that we need to actually change our ethics and we need to change our ethics to uh what you've termed a distinctly a black bioeththics um and tell us a little bit about what that looks like and what it would achieve. Thank you so much, Becca, and thanks my dear brother, um, TS Har Jav. And thank you, family, for being allowing us. I just want to take just a couple minutes and run through some slides that will show us something. In a in a really recent conversation with Dr. Harvey, we have one other colleagues. Um, he mentioned TS Elliott and this very famous statement by TS Elliott which is there's always a past in the present. There's always a past in the present. Doesn't matter how much one may try to run away from the past, we're still living in that experience. This in the DNA, right? is is part of what we call ACES, adverse childhood experiences, where in the DNA, in our structure, in our experiences, in our trauma, there exist these particulars that continues to keep black and brown people where they are. So, just for a few uh minutes, I just want to reflect on some of the present um categories that continue to resist what seems to be best efforts. Next slide, please. First, um, when we talk about excess deaths, we are talking about those deaths of black and brown people, particularly black people, over and above their white counterparts. Next slide, please. Um this one uh when we talk about um uh the estimated lives lost or years of lives lost given blacks against their white counterparts. It adds up to about 80 million li um years of life that has been lost. 1.63 63 million lives lost per their group between 1999 and 2020. These lives are these are years that will never be gotten back. And this creates a gap in the conversation. Not a abstract gap, not an abstract gap, but a preventable gap. Next, it's something that but that that that that that promotes or allows for funerals because black people just keep dying at a at a faster rate. Um next, black and brown black um uh the life expectancy that's okay. maternal mortality. The life expectancy um the maternal mortality rate shows that black women are 3.5 times more likely to die in childbirth than their white counterparts. Next one which is infant mal mortality in infants are twice as likely to die than their white counterparts. Next slide please. And all in all or in terms of all lives, we are black look at look at this the the levels here. Black and brown people well particularly black in this one is still leading in the kinds of deaths that are preventable. All right, let's take that down. Please take the slide all together. That's all I wanted to say. I just want to demonstrate evidence base that there is a situation that continues long after the the syphilis study that continues to to demonstrate a lack of attention to black lives and black lived experiences. So um when we when uh to the question Becker about you know how can where are we first thing we got to admit that there's something deeply and profoundly wrong. You mentioned CO 19 a moment ago and we must ask the question how did CO 19 find black people at a higher rate than they found any other people? How did how did co 19 know to go to Albany, Georgia and say, "Well, I'm going to take I'm going to I'm going to take the lives of these black and brown people at a faster rate than other people." How did it know? Well, one of the ways that it knows it to do this is because of um co-orbidities because of those excess death categories that I just mentioned, namely cardiovascular disease, hypo hypertensive, cancer, HIV, etc. um preventable deaths, right? violence and gun violence because of those excess deaths categories. It makes creates a vulnerability for black people and brown people in such a way that whenever something like a co 19 catastrophe hits that co-orbidity become like a trorbidity right you already have diabetes and hypertension and now something else on top of it take you out. So, I will just pause right there um and just that those are the kinds of things if we do not give attention to to uh black lives and brown lives and lives that are vulnerable in public health, then we will see these kind of vulnerabilities act out in very traumatic ways down the line. >> Okay. Thank you so much. That was um an incredibly important framing. I'm going to come back to uh what you um come back to Belmont and black bioeththics in a in a minute. I'm going to give um Professor Harvey an opportunity to respond to um what you've said um and just to tee it up by saying that um you've also from the perspective of uh what you of uh incidental anthropology Dr. Harvey um really talked about the same kind of intersectionality referring um this Gordian knot of racism. Little did I know when we first met and I talked about the problem as a Gordian not that I was in fact um quite superficial in my analysis of the situation and that you have g given this really substantial thought looking at the structural institutional and global factors that have really continued to um affect black lives to this to this day. So I'll give it to you Dr. Dr. Harvey for your first comment. Thank you so much uh for teeing this up and thank you uh for the opportunity um Dr. Hajj uh to be invited to the conversation. Uh so I would like to sort of echo some of the things that u Dr. Hodgej said but to frame this in terms of thinking about uh the gaps and return to a conversation about the gaps. So often times when we think about the the Belmont report which is sort of a global northern standard because as we know uh the Belmont exist in the shadow of Nuremberg. Uh when we think about that we think about a kind of strict constructionist view of that which has really been a concern with as it was written uh bioeththics as it relates to research with human subjects. But as uh Dr. Hajj points out part of the the short-sightedness of that uh is to look at the downstream implications of something like the Belmont report and its circumscribed uh limitations and preoccupations with what constitutes research with human subjects and understanding the intersection between research with human subjects for example and clinical trials. research with human subjects and for example bioreositories research with human subjects and for example um public health and so this brings us to a rather perplexing problem and you can think about it in many ways uh from the field of the arts and humanities you could frame it as the Gordian knot of course a reference to Alexander for those of you who've heard about the story of the Gordian knot the idea is that you have this tangled mess um that cannot be untangled people have written classical pieces of music about it. Henry Pcel wrote a piece on the Gordian knot. But the idea is it's a a a complex problem um that can't quite be untangled. And as the story goes, uh if you could come to this town and untangle this mythical knot, which you can think uh metaphorically relates to uh health disparities, health inequality, uh if you could manage to untangle that, right, somehow you'd be ruler. And this of course is connected to the myth of Alexander the Great. And the idea was that he came in and he didn't attempt uh to unravel it. He just cut it. But in public health terms uh they don't talk about Gordian not they talk about wicked problems. And the idea here is a similar thing in and a problem in which you know it's so very difficult to define uh various pieces reaching in and out of it. And oftentimes what you hear is that it's complicated. Uh but one of the things that we say uh in our research team is that to say that something is complicated is not an answer. It is a description. And so what we hope to do is is to build beyond, right? and to think about as we reimagine uh Belmont uh under the the framework of a Tuskegee report report reimagine the possibilities to think about the complexity of the problems as human problems that have human solutions. So I'll I'll stop there. Thank you for the thank you for the question. >> Um that that's great. So two two two perspectives on this, right? looking at the continuing um the continuing gap and the continuing um the continuing state of where we are when we look at public health and the lives of black and brown people, but also and the global north, right? But but also um looking at this notion that we can't things complicated. Um it's it that that's not going to in and of itself help us find the answer, right? it just it ought to push us further to finding to finding answers and generating uh approaches and solutions. So um you uh Dr. Harvey, you set us up really well in talking with about some of the limitations of the Belmont report and how really um it focused us in ways um that um were strictly applied to bioeththics and research on human subjects in in particular ways. And Dr. you in uh your work have talked about that as well about how the principalist ideas in the Belmont report um aren't really what we need right now that we need a different kind of bioeththics. Do you want to tell us about why that is and about your conception of um uh of black bioeththics and what that means and how it would help us not just describe a problem but actually generate solutions. >> Thank you very much. and please call me David. Mama named me David and I like hearing David. David means beloved so I like hearing it. Um and thank you TS because that really does a great job in taking me to how to define black bioeththics. Um uh there's there's there's always a discomfort in lending and add giving these adjectives to things. Um because one would always ask like why is black but why I call it black bioeththics and how is that is that a is that a pigmentation thing and I've always not thought of it as a pigmentation thing. I've always looked at it as a protest thing. the way in which uh blackness came about in the understanding of blackness or what some understandings of blackness meant through the 60s that brought about black theology for example with James Cole and JD Otis Roberts in the 60s and the 70s as a way of thinking about how to deal with the exclusion of black people in the field of theology and thus the field the field of sociology and the social sciences. Right? How do you how do we make it known that liberation theology it should be an important factor in how black people think about things and this was done interestingly in partnership with the with the um lat the Latin American theologians Gustavo Gutierrez and a host of them Sagundo and such so now so so my taking back of the term black from black theology is how I'm using it because it encourages and it motivates and it in is in it's inclusive rather than exclusive. It says that I am just as interested in uh as a black bioethsist. I'm just as interested in the the our Native American populations. I'm just as interested in um Alaskan or AsianPacific uh populations. I'm just as interested in my in my Hispanic brothers down at the border, the um the Mexican brothers and sisters or the the the the Cuban brothers and sisters or any such thing as I'm interested in those in the Appalachian Mountains, right? Those who are poor because quite frankly when we're talking about ethics and when we talk about principles, we are talking about the least, the lost and the left are. We're talking about people who are vulnerable and they cannot fight for themselves. And that's why blackness is so important because blackness then becomes a metaphor for what it means to not be able to fight for oneself without some advocacy from others. So black bioeththics is not simply about pigmentation. That would be reductionist. It's about identification. How do you identify with people who are the least of also nerfed out? Because populations that was what public health is about populations but bioeththics is about individuals. And if those two are not conversational then we miss something extremely important. It is not sufficient to speak only in terms of public health and populations because populations are made up of individuals and individuals are made up of all kinds including least lost and left out poor people brown people um Latinos um capac cap capacinos the whole the whole gamut. So that's what black bioeththics is and and and just to touch on something that you said in your questioning uh Becca with respect to like how does this jbe with the Belmont report we are not in any way interested in the rejection of the Belmont report. The Belmont report has done and continues to do what it was designed to do. It was a research for a research formula to ensure that certain protections were in place. We ask the questions protection for whom? We ask the questions. We ask the question that mainstream bioeththics may not may not be asking. And that's why again black bias ethics. So the Tuskegee report is less interested for example on just justice is interested in social justice. Correct. See we're not when we talk about respect for person, we're talking about agency more than we're talking about autonomy. When we're talking about um um beneficence, we're um the movement from benevolence to beneficence have already been established. But we are saying unless there's another step that is the notion of empathy and care to ensure that beneficence take on real value for the least of those that are left out, then we're still rhetoric, right? We're still rapping. We're not really engaging. >> Thanks. That's um that's incredibly um clear and helpful and that what we're talking about um and one of the legacies of the Tuskegee report then is really how we continue to center the margins in very important ways both around public health but individual health um as well. Um uh Dr. Dr. Harvey, I'm you know I I um so I should say I think it's obvious to everybody the affection I've had for a long time for you. Um Dave, Dr. David Hodgej and um my my new colleague Dr. TS Harvey. Um I'm being formal only so that I don't slip um and forget that we have hundreds of people in attendance watching this and that this is going to be on the internet. um and we hope hundreds and thousands more join us in this critically important conversation. So, it's out of the utmost of um respect and and um affection that I'm I'm so formal to make sure I can put forward this work in the most important. Um so, with that being said, um uh uh Dr. Harvey, when you think about this in a global context, um you've you've also brought other pieces, right? um not just from individual populations and individual lives but the environmental the structural the institutional uh factors that really affect uh disparities um not just in health but uh disparities in life because as Dr. Hajj has showed us uh if you one begins life with a foreshortened expectation of what that's going to be um it it very much affects um the the conditions and one's circumstances from the very beginning. So, I'll let you um uh uh tell us a little bit about how you've approached um this inheritance, this legacy um and how what directions um you see that we need to go. >> Yes, absolutely. And so my my colleague uh on our current Robert Wood Johnson Foundation grant is uh Ted Fischer who's not with us today. But part of that grant uh is under the the the unit that essentially looks at global solutions for US problems. And what we wanted to do as we thought about the challenges and opportunities in bioeththics is not to limit that discussion to examples of what we know has happened in the US historically. Uh and not also to just look abroad for other examples of atrocities, but to recognize that these challenges are shared and to look beyond our borders. um to think through the ways in which uh perhaps other populations, other universities, other researchers have grappled with similar problems. To think through the ways in which for example you can reimagine bioeththics around uh research with human subjects a way that brings vulnerable populations the populations that uh my colleague Dr. Hajj mentions the least the lost the left behind. How do you bring them uh to the discussion? But not at the end, not as an add-on or a footnote, but how do you bring them in to reimagine what bioeththics could be, right? And in order to do that, of course, you have to get out of the the sort of framework and the shadow of of Belmont and also out of the the sort of the western hubris that somehow we're the only the only ones who has who have a notion of of ethics, right? Which is why I think my my colleagues uh framing of this under the opaces of care ethics allows us to think about that in a broader context and to allow those other models indigenous models for example to inform uh the ways we think about for example consent. The ways we think about what constitutes the community, how long consent is good for, the ways in which we think about autonomy, who has autonomy, what does autonomy presuppose, uh notions of justice, uh to the degree to which uh benefits versus uh risk. All of these things can be can benefit from a framing and a thinking about this in a way that engages impacted communities to rethink uh from construction up the way we reimagined uh we reimagined what bioeththics could be under this uh Tuskegee report that we're that we're building. >> So um so many pieces um to what you've just said. Let me see if I can highlight some of the the salient features to move us ahead, but a bioeththics that moves not from the top down and from um from abstract ideas and principles, but a bioeththic that's embodied and informed by the voices and the lived experience of those um who would be affected um either by existing challenges um or by future interventions. And also this notion of uh what it means to respect dignity and be an autonomous agent is one that must be framed in the context of care and community and relationality and not in thinking about um individuals um as isolated um isolated or um um uh isolated or separated from the context, the people, the relationships and the circumstances in which um we found ourselves. Um and that if we really reimagined that what we'd be looking at or the big um the big change would be not to start with uh our own limited answer western answers right to glo to global challenges but rather to open up our minds and open up uh not just our minds though our hearts as well uh to be engaging these problems from the perspectives of those uh those whose voices have um uh been uh either not heard um or even si actively silenced. So uh critical critical um things to think about and when we think about the fact that 60% of the world's population um lives in a lower middle inome country, right? to think about a bioeththics that comes from um comes from these um highinccome centralized or abstract notions. Um we begin to see really how much of a mismatch that is. So I want to turn to um so many more questions I can ask and I'm also mindful that I have you both only for a short period of time. But I'm particularly um want to invite you Dr. Harvey to talk to us a little bit about um how that how you've um bridged um the use of technology and some of these innovations to um to begin with uh with the um in the community. uh to begin with the lives and the stories of individuals uh to address problems on uh an individual on a public health scale as opposed to from the top down. Um we I mentioned in your introduction about um the uh innovation um to locate treatment for COVID 19. Uh we talked about a wearable device. How do you what are um how do you see that intersection as bringing us forward in making um in imagining uh a new bioeththics and new commitment to the lives of persons. >> Yeah, thanks for the question and I just want to sort of um you know pivot back to Dr. Haj's comments in terms of of where we start right so how we approach these problems whether we call them wicked problems or Gordian knot right if we approach them uh from impacted communities then the way we design and imagine uh interventions and who we imagine and design those interventions with with uh gets defined by where we start right and so understanding the problem and uh Dr. Dr. Haj has done a lot of work in this at the National Institute for Bioeththics and Healthcare. Sort of understanding the problem sort of not setting out for example to answer the problem that you hope is the central issue, right? And and sort of uh engaging with interlocutors and communities to understand those perspectives. Uh specifically in the area of of research with human subjects. uh we can think about um organ transplantation, we can think about uh all sorts of spaces that are informed by engaging directly with those communities. And so that kind of interdisciplinary um approach uh which I think is grounded in anthropology which is an interdisciplinary uh social science sort of lends this ability to think um not just horizontally but also to think about the ways in which one needs to connect these sort of propositions and abstract ideas of principles and guidelines which exist sort of if you will metaphorically in the penthouse. house that those ideas have to travel to the basement to the ground uh and it has to be informed in in some cases right by what's happening on the ground and and otherwise again we are essentially solving problems that are not actually there and and so what I've sought to do in many aspects of the work is to build collaborations transdisciplinary collaborations uh around the problem to bring people to the table that have disperate expertise, right, to dismantle the silos that get in the way of of of working together on these sorts of problems. Uh something that my colleague has done consistently in terms of the ways in which he thinks through these problems and and frames them. Um, so, um, maybe this could be to either one of you, but, um, what, um, I of course jumped to the solutions immediately or what we need to do about it, but you're reminding me that I, um, I wanted to get out of the hot seat of thinking about the history too quickly because actually what we need to be doing even especially now in the present before looking defining not just redefining the the problems but also redefining the way um in which we uh we identify um uh identify the problems that we want to address. So that's very very helpful. I feel like my wings are a tiny little bit clipped um and in a very good way. I feel that's a very um a really transformative way of thinking about this. Um so as usual having the privilege of being here I've learn I've um clearly already learned more than I've been able to contribute. Dr. Hajj what would you say to us about that? So when we think about this through the lens of um of the least the lost and the the left behind. Um how does that change the way we frame um what we need to be focused on and uh and how we do our work? >> Thank you so much. Um, I was thinking as TS was speaking about a couple of years ago, I was invited to a to a conversation at U MIT and I learned something new. U I I just recently learned this chat GPT thing, right? That was fascinating to me. And then I learned um so there they asked question, do you know how this works? And so asked around the table and we all came up with something and we were all wrong. And he said um um AI technology especially chat PT etc works by anticipating the next word. I didn't know that. So now immediately my question is whose next word like where did you get that next word from? Because if I'm not in the conversation I'm from the Virgin Islands. My next word would be something like what wrong with ar man right that's my next word right what and yours might be what's wrong with you you know what's wrong with y'all so there is a there is a um a a misstep when if we do not understand or start to work with the power if of implicit bias and biases in innovation and in technology we will continue to go down the road of excising those communities that need to be involved. How at what point did grandma's voice become the next word? You know, when was her voice included in this technological thing? Um I I uh one of the one of the things that um that we're doing in our research with our family at Vanderbilt is we are looking at how in technology how exclusion occurs not by racism but by comfort zones. I had opportunity to work with some brilliant, brilliant folk at uh Case Western who developed some brilliant brilliant technology and in terms of prosthetics and and um the person who would who uh was the clinical trial recipient was a white guy, very nice guy. I I really enjoyed with we cried a lot. We we shed a lot of tears thinking about how he lost his arm and how that technology gave him a opportunity to feel his wife and his children's physical hand again. Very emotional. Well, see, my brother also lost his arm in a motorcycle accident. So, my question was why wasn't my brother included in the clinical trials? And so, it was not that they that black and brown people were excluded. is just that what was closer it had to do with proximity. That's why care ethics is so important because it's relational. Has to do with proximity, right? If you have a relationship with someone next door, someone down the street, you will say, "Oh, you know, um Haj, his brother, he's he lost his arm." And so therefore, when we're talking about clinical trials, we're talking about um what clin one of clinical trials and and black bioeththics and Tuskegee report. We're talking about making the invisible visible. How do we lift the veil as which is very symbolic of Tuskegee coming to Tuskegee Gate and there's a there's a book Washington lifting the veil of a former slave. How do you lift the veil? How do you make it such that people who are unseen can be seen? I'll give one way and then I move on. Um and that is one way to do it is that find ways to include family members in the conversation of clinical trials before they get to the deathbed. My predecessor and my mentor and my my brilliant colleague Dr. Ruben Warren um he was he he taught me so much along these lines. when we doing clinical trials and we wait until a person is in their deathbed and offer them a informed consent document that reads like a PhD dissertation and say sign this what are they going to do so therefore if we so therefore to get to the least of loss of e out left out and we're if we're going to deal fairly ethically and caringly with communities in engaging with communities then we need to be serious and we need to be authentic authentic and we do not wait until a person has is out of choices to say here's a choice. >> Okay. So, um so many um so so much there. Um Dr. Harvey, how do how do we do that? How do we create choices? How do we bring in lives and voices that matter? um before uh we're um uh at the time that we're thinking about our innovations, our possibilities and not when uh we're looking for last stitch efforts as Dr. Hajj has so eloquently laid out. >> Yeah, that's a that's a good question. I think um just to go back to a a point that was made earlier, there's a recognition that technology for all of its capabilities uh whether or not we're talking about artificial intelligence, large language models, or um uh really sophisticated uh prosthetics, uh technology is not neutral. Um and and I think one of the things that needs to sort of be acknowledged is that um it's not neutral in many cases uh it replicates existing structures, existing uh notions. And so when when Dr. Hodgej talks about the veil, uh one of the things I think about is to mark the unmarked category. And so to think about uh prosthetics and to look at the for example uh who the intended recipients are, right? And so for many many years um prosthetics disproportionately went to veterans because of all of the wars. But now we realize uh you know um that many of the amputations now are associated with um diabetes. And so how do we reimagine who the recipients are? How do we reimagine deservingness? Right? And so this has to be more than uh something that we add on. Uh Dr. Haj likes to joke about someone who once said who will not be named here said put a little ethics on it, right? Put a little bioeththics on it. And so the idea here is that this is not something that we add on. This is something that we rethink. So we rethink, right? So for example, people say, "Oh, oh well why black bioeththics?" Right? as if the Belmont Report in and of itself is like a version of McDonald's. You know, McDonald's is ethnic food. The Belmont Report is marked. And so part of what you have to do is to think about how the unmarked um sort of prefigures a certain set of expectations about deserving. And so as we go uh back and as we move out, we think about health disparities and who you know who who who are the the the populations that are impacted now and then reimagine those technologies and reimagine those interventions by understanding those challenges. But to do that, we have to move beyond utilitarian ethics to what Dr. David Hodgej talks about as fundamentally relational. Right? And this has been thought about in many many different ways. Uh the philosopher Levvenos talks about an encounter with a face, right? And and and sort of what he suggests is that the first thing that one must do when one encounters a face, this is Emanuel Levenos, is that there's recognition, right? Recognition has to come first. Recognition becomes before relationality. So we can use many many different philosophical frames to think this through. But we need to again um recognize that technology is there as an aid and can be used in many many ways right but also understand the kinds of disparities that some of these technologies reproduce as Dr. Hajj mentioned I mean when you thinking about large language models uh who were these models trained on when you think about soft AI for example in something like Microsoft Word and the editing out for example of uh the ways in which people hedge right it edits that out so that the voice sounds more masculine uh which is a projection of authority now I'm a linguist as well and and what does that look like when a woman is using for example um Microsoft Word and is editing out uh the the kinds of phrases that allows one to position oneself as less than an authority and then that gets sent out and of course uh in the the context of depending on who sends it right it then gets read as someone who is for example uh overly controlling or someone who is overconfident. So technology is not neutral right and so rethinking the way in which we approach it the way in which we use it you know that the the response is not to kind of cast it aside is to to reimagine it understanding uh its complexity understanding the possibilities as well as the limitations. Can I add something that that you just you just peaked my brain because this embedded in in the in the models and embedded in what you said over Microsoft Word or soft models is then the a chance for mis misogyny to to to prevail. And if misogyny can prevail and other kinds of discriminatory practices can prevail, then you know what else is being um prevalent in conversations and and our young people then have to use this kind of technology and they they they do not they may not realize to what extent things are bought into ahead of them or what kind of ethics are embedded are being shared. One of uh TS just mentioned this uh uh reimagining how prosthetics are used and for whom and one of the things that is just so interesting to me is that the technology to to get that done TS is going to require a lot a lot of money right a lots of lots of money it's in the hands the money is in the hands of gamers the technology is in the hand of gamers so there has to now the partnership with gaming communities, right, and gaming companies to see to what extent that partnership could bring about some kind of health care for those persons who really need it. Because again when we excuse me um remember in every state in the country blacks lead in either excess deaths or um the population lead in disparities in every state in the country. So if that is the if that is in fact the case then there's one could one could could determine from that that uh that um a large portion of those who have amputations are black and brown people. Right? The same thing is true with kidneys. A large portion of who those who need kidney transplants right now are overarchingly black people. So then who gets that that that transplant and how does that work and how do you pay for it? Because a a porcene transplant or a pig kidney into a human which may have the life expectancy of about 5 years and it cost $150,000 to do then how does that work when there's a kind of financial bankrupt in the health care system. So back to the goian knot, right? So now you take something complex and you make it even more and more complex and unless and we go back to our ethics while a particular brand of ethics undergurs this and mitigates some of this other stuff because it says that relationships matters. Caring about people ma matters and is driven by empathy. Empathy is a capacity to understand what somebody else is going through. Caring is how you respond to that. Compassion is how you respond to that, you see. Okay, that's >> all right. So, I'm going to bring this sort of back to um uh to a few responses to that one. Um uh Professor Harvey when you said that, you know, technology is not neutral. It replicates existing structures. I would take that even a little bit further to say that that um that not only does it replicate existing structures that it can actually um magnify and amplify the disparities that occur as a result of the existing structures. And that really if we if we take this notion seriously of centering the margins um we would get out of the um get out of thinking about health as the kind just the kind of health care that we deliver um and really embrace what Dr. Haj is talking about here. Um, and think about some of the models of health community health interventions um that have been very effective um in communities in particular in um the global south at beginning not with the high level professionals but even showing um incredibly powerful results around health and mental health, right? With community health workers, right? or um um and not overly um beginning with our connectedness and our relationships with each other rather than with um the biggest science or the highest training or technical knowledge that we have. Right? So really embracing this notion of care, relationality um rec um and empathy um as first as a precursor to anything that we would do whether it be our technology. As we seek to use this technology towards a positive future that would close these health gaps and and um beyond closing the gaps, advance the health of those who have been left behind. in particular. So, we're down to our last few minutes already. Um, I've asked about um one of a hundred questions that uh that we could talk about that I had hoped we'd engaged today. So, I hope we can do this again. Um, we've had a lot of questions both before from um from attendees and coming in throughout the um our time together and one really sticks with me. And so the question um uh question comes from um a young person thinking about a future career, one that embraces bioeththics and committed uh to advancing health um in um clinical trials and other interventions. What do we tell our young people? What would success look like? And uh how do we tell our young people or help um help inspire them about starting in a place so that in another generation and a half after this conversation, we're not still in the place that we are now um 30 years after uh the commission report. Anyone can go first or second. Um lightning round answer to another um if not a wicked problem, a wicked a wicked Gordian question. Okay, I'll go I'll go first and make I'll make it quick. There's something Becky, you've heard me say time and time again, and my dear brother Lan Forro, who I'm sure is listening in, that there's right now a 13-year-old girl in Kenya or in Ukraine or in Guatemala or in Tuskegee or a 30-y old girl anywhere whom I do not know, but she's my sister. And I have to keep keep this girl or this boy, it's a metaphor, right? I have to keep this person at my right at the beginning of my head each and every day that I cannot take time off um beyond what's reasonable, right? But I can't just stop thinking about them because the time is going to come when something I do here would affect where they are there and I must continue to push and so therefore young people are thinking about this kind of work that is public health ethics and public health and bioeththics neuroeththics etc. It is important to engage and is it's not is sometimes you're working in the dock by yourself but other times we're working in a community like we are right now. >> Well, I think we we certainly do our best work in community, right? And so that that's one thing that I think can can inspire uh inspire young people to begin to um to talk about relationships but to build them. And I think that that's what been one of the legacies of our work together over the last six years um is making sure that we don't do this work in isolation and as silos, but that we build and change the nature and the scope and the possibilities of our relationships um for which I will um forever be indebted to to you and Dr. Rubin as our um as our partners in. Um Professor Harvey, we give you the final words of encouragement and wisdom. >> Yeah. So I guess I I would just echo what's been said, but I'm thinking about Antonio Grochi's um uh pessimism of the intellect, right? And how the optimis the optimism of the will is stronger than the pessimism of the intellect. And I would say, you know, as we are teaching students about these problems, the thing that we don't want to do, right, is to presuppose that just because previous generations didn't solve something that there isn't a solution. We have to set aside our own hubris and our own understanding of the problems and open up the possibility that that anyone sitting in the audience, any student that they are just as likely to have a solution to something that is or would be intractable problem as the next person and to engage that seriously, right? And to not sort of strap people with the burdens of the past. understand those be but be willing to and able to and encourage them to and to create an environment in which people can imagine alternative futures. >> Um thank you so much. I think that that really captures um optimism of the will um and really inspires um our younger generation not to be limited by um by not to be limited by the past but rather informed by the past to imagine and create a better future. I thank both of you for joining me um this evening um for continuing to celebrate our rel uh and the things that bind us rather than divide us. Um, and I'll look forward to our continued conversation and the next iteration of this partnership um, next February for our Black History Month celebration uh, between uh, the Center for Bioeththics at Harvard Medical School and our dear partners and family at the National Center for Bioeththics and Research and Healthcare at Tuskegee University. Thanks so much, Professor Harvey, Professor Hajj, um, and to all of you for joining in this critically important conversation. Take care. Bye-bye.