 Welcome to the Tuskegee Harvard Medical School Center for Bioethics webinar, title you see there Tuskegee healing, the moral determinants of health and the ethics of research on black health. Next, I'm just gonna go over some introductory things and then we'll go from there. So we really, really want, we need this to be as participatory interactive as possible. So you can submit questions at any time using the Q and A feature. Also put things in the chat. I'm gonna be putting things in the chat, including when I stopped talking here, a link to a copy of all the slides. So you have those. We also really hope that this webinar will spark all of us to be thinking and staying in touch and continuing the conversation, asking questions and social media, whether that for you is Facebook or LinkedIn or Twitter or some other ways. But to keep the conversation united, we really want you to use the hashtags, Tuskegee healing, moral determinants and HMS bioethics or add your own if you want that to try to catch on. This will be, is being recorded and will be available on the Center for Bioethics YouTube channel sometime next week. When that happens, we'll be emailing all of you so that you have the link you can share with other people. And when we send you the email about that, there are gonna be questions that you've asked that we didn't have time to answer. And to the extent we can, we'll include something about those questions there. If you have any technical issues, use the chat feature to send a message. And then please subscribe to our bi-weekly newsletter if you're interested in this. Next slide. These are upcoming consortia, the Center for Bioethics at Harvard Medical School as regularly, almost weekly consortia. And you can also go to our, just Google HMS Center for Bioethics YouTube channel. Almost all of these are recorded and you can see the videos online. Next. All right, I'm gonna take these brief as I can, but it'll probably take me about the next 10 minutes or so just to offer you some framing kinds of themes about how to think about some of the issues we're gonna be talking about. I'm gonna go through these much faster then we'll give you time to digest them, which is why I'm gonna put the link in the slides afterwards. I'm starting with this, not just because this entire webinar is really driven by, inspired by, enhanced by the National Center for Bioethics and Research and Healthcare at Tuskegee University and particularly the descendants of the 623 men in the study, who a number of years ago, organized themselves into just an extraordinary organization, Voices for Our Fathers Legacy Foundation. You'll be hearing from two of the people deeply involved in that one on video and one here, but the symbol here, I've shown you of the National Center for Bioethics and Research and Healthcare at Tuskegee, I had never known about before, but our colleagues, friends there explained to me, at the center of that is the Sankofa bird. Now the Sankofa bird is a mythical bird from years long, long ago in Ghana. I used to think that mythical meant not real. And the Sankofa bird isn't real in the sense that you'll see one flying around, but it is has been for generations in Ghana and for the National Center Tuskegee and I would say now for me, one of the most powerfully real things in my life. But let me explain what the Sankofa bird is. The Sankofa bird, this mythical bird shown there is an African bird that regularly flies back that's why the heads looking backwards flies back into the past to our ancestors and what they lived with, what their lives were like, fly goes back into the past, sees with crystal clear vision what that past was and some of the things are painful, but some of the things are inspiring no matter where the Sankofa bird flies. The Sankofa bird sees what's in the beak there you can see a golden egg there, it's a black egg. And the Sankofa bird goes back and fetches is the word they use that egg from the past and brings it into the present. And that egg that treasure from the past helps the Sankofa bird in the present and fly and bring the best of the past into the future. So even though this is a mythical bird I think that idea and you'll hear me refer to it through the rest of my introduction is a real and very powerful metaphor including what the Sankofa bird has brought us from the past into the present is an egg which really is just a seed. It isn't something more than that until we fertilize that, we nurture it, we help it grow. It's just bringing us eggs or crystals or other things from the past and it's up to us to carry them forward. So next slide. Looking back in the recent past this webinar is really the fourth in a series just in the last few months of important conferences all of which have originated from or with Tuskegee and all of which were fully planned with descendants or centrally involved descendants. October 31st and November 3rd, several days from the National Center the moral determinants of health what do we do with what we know? That's the moral question, we know things the moral question is what do we do? That's a question that came to us from Mrs. Lillyhead and the descendants that conference focused on four concrete topics HIV, AIDS, COVID, maternal mortality, done violence so we're carrying those topics on. Just a few weeks later, Dr. Tirmika Smith who's with us and lots of colleagues at CDC coordinating with the descendants had a wonderful two and a half hour webinar conference at CDC Headquarters in Atlanta I'm gonna put the link in the chat to that and we're gonna show a couple of brief excerpts. Just last week in Making County in Tuskegee the descendants, the people of Making County and leading researchers got together for another conference so this is the fourth in a series we're carrying that forward next slide. So I'm gonna step way, way back since we're doing this from the National Center for Bioethics at Tuskegee and the Center for Bioethics at Harvard and ask as fundamental radical radical literally means at the roots questions like what even is bioethics? And the words just mean bio means life ethics is about values. So what might ethics actually apply to and what I really believe is that everything is or should be an ethics issue. For anything we do, I was taught this by Dr. Mitchell Ravkin, long time head of my hospital. He'd say for everything we're doing from time to time we should ask, why are we doing that? Why is it important? Why does it matter? And then you'll come up with an answer oh, we need to balance the budget or we need to do X or Y and then he says, that's not the answer why is that important? And then you have enough, why is that important? And you don't get to the real reason for anything we are doing or think about doing until you arrive at a value because our patients lives matter. Because, and so everything needs to be anchored in values or I'd say it's not really a human moral endeavor. And then I think everything is a bioethics issue because anything any of us value matters to us because it matters to our life, someone else's life. So I think everything is a bioethics issue. Next slide. In all of this, all I'm gonna say is words, the words we use, that's how we communicate at least in written form, we communicate in lots of other ways including through images and music and physical ways, but words really, really matter. So we're gonna spend a little bit of time talking about the word Tuskegee and these other words. So just one example I had, we've been talking for years about the social determinants of health. The editor of health affairs, one of the most important health journals in the country had an editorial last year that said, we should be talking about the social determinants of death. Words can really matter. Next slide. So the word Tuskegee, when I was growing up, I didn't know a lot about Tuskegee. I'm like this white kid growing up in the Northeast, but I knew some about Tuskegee, I heard about Tuskegee. I knew what that was. Booker T. Washington, George Washington Carver, this great scientist. I didn't at the time know about the Tuskegee Airmen, but up until the summer of 1972, everyone in this country who knew the word Tuskegee knew that it meant black excellence. And then in the summer of 1972, front page story all over about the United States Public Health Service study of untreated syphilis in the Negro male. And for the 50 years since then, most people, when they hear the word Tuskegee, if they don't really understand the history or what's on that campus today, the first word that comes to mind is a disease. That needs to change. And what we're hoping to do, the descendants are really urging us to do is do work so that we have re-earned all of us the right to just think of Tuskegee as excellence and healing. And we're gonna work on that today. Next, moral determinants of health. All I'm gonna say here is we hear a lot about most health resulting from the social determinants of health. Daniel Dawes has written a book and taught us a lot that those social determinants, housing, transportation, education, poverty, all of those things really are the results they're determined by the political determinants of health. And what we started with the National Center in November with that conference on the moral determinants of health is to say, well, actually, if you get down to the deepest level, it's all about the moral determinants of health. But as Kamara Phyllis Jones, my most important teacher about racism says, the single most important first step about racism is name it. Otherwise you can't talk about it. But then you need to actually understand what exactly is, how does it work, how does it operate? So we're just naming right now moral determinants of health, but these conversations we're having today and afterwards are like, what do we mean by those? How do they determine things? And then the moral question is, and what should we do about them? Next slide. Research, research has come to mean certain things with people in white coats and other things, but all research is, is an effort by human beings to increase our understanding through science. And science is about what is, we need to understand what is currently. How did it come to be that way? That the history of what is. Ethics is about what ought to be. And then once we, when we thought about, oh, what ought to be, including what ought to be true in our world? What ought to be true in my life in the future? And then from that, and then what do I need to do if there's a gap between what ought to be and what currently is? Before we go to the next slide, let me just say one of the many things that I learned in Africa has me now thinking there actually is only one practical ethics question for any of us. The field of bioethics, including me, has often about figuring out what the right thing is and telling other people to do it, right? A proverb people at the hospital know that I've learned in Africa is be very careful when you're pointing your finger at someone because your hand is much smarter than you are. Three of your four fingers are pointing where you need to be focusing because in fact, it's the only thing you have any control over. So the only question in everything you're gonna hear today for all of you participating that you have any control over is what are you going to do? And I'll be asking what am I going to do because that's the only thing I actually have any control over and responsibility for next. When we think about ethics of research, we think about informed consent forms and all that, but going back to one of my most important teachers in college, Paul Ramsey who wrote a book in 1970, two years before that story about the U.S. Public Health Service SIFLA study. And what did he say about research? The most important thing he said to understand about research on human subjects is that any human being is more than a patient or an experimental subject, he, Paul Ramsey said he is a person every bit a human being as the physician investigator, every bit as much a person. So research is a great human adventure that has to be always is carried forth jointly by the investigator and his or their subjects. In some ways, I think this might not even go far enough even though it's largely been lost to the extent that I am an individual or a community and researchers are wanting to study something about me or with me, those researchers are guests in my life or guests in my community. So I'm actually not sure that equal partners is the right thing, that the patient, the person, the community is the one that's invited the researchers in, the researchers are guests. Next slide. Two facts we're gonna hear from Jesse Mylin, the president of AIDS United about how he thinks we should think about this but first fact, HIV in the United States, you see that black, if I am a human being, a person in the United States today and my skin color is the color of Jesse Mylin's, I am eight times as likely to get HIV as if the skin color is my skin color, right? If you're black in the United States, eight times as likely to get HIV, that's a fact. So what do we need to understand about that? Why it's that way and do about that is a question for us. Next slide. The Sunday New York Times this Sunday had a horrifying, but in some ways most of it not news set of other facts, here's just one. The infant mortality rate, if the baby's mother is black, is higher than if the baby's mother is white, even the richest black mothers have babies that die at a higher rate than the poorest white mothers. That's a fact. How are we gonna understand that and what are we gonna do about it? Next. So two things on this slide. One on the left, Dr. Paul Farmer, a hero to many of us, identifies what Paul believed was the most important moral determinant of health and almost everything else. The idea that some lives matter less than others is the root of all that's wrong with the world. Do we really believe that all lives matter equally? And then I put on the right an example of what one person did about this. Dr. Albert Schweitzer, who in the last century was one of the most admired human beings in the world, Nobel Peace Prize laureate. When he was in his 20s in Europe, he was studying philosophy, theology, music, all of those things, but somehow he stumbled across interest in Africa and read about what had happened in Africa. None of his biological relatives, as far as I can tell, had anything to do with that. But Dr. Schweitzer identified as a European, as a Christian and as a white person. And he learned what people whose heritage he shared, he owned, unless he was gonna deny that he was white, deny he was European or deny he was Christian, had done in Africa. And he didn't think apologizing for what other people had done was enough. He didn't think not doing that ever again in the future was enough. He said, he actually gave all of that up, left, went to medical school, trained as a doctor, he and his wife went to Africa, spent the rest of his life there. And he said, I went to Africa because I wanted as a white man, not I had to, not I was told to, I wanted as a white man in Europe to atone to the African for the blood and the tragedy and the suffering that the white man in Europe had perpetrated on that continent. That's what one example that my Sam Cofen bird has found in the past that I think we should at least be thinking about as we wonder about ourselves. Next slide. MLK is one of our great heroes. I'll put in the chat more information about this. This past MLK day was a dedication of a 22-foot high bronze sculpture on Boston Common that is now the anchor point for what is going to be city-wide, region-wide efforts to translate the love that MLK and Coretta had for each other as the source of social justice work. Next slide. So we see these quotes from MLK over and over again. You'll have these slides in the chat about injustice in healthcare, about love, about the Ark of the Moral Universe. And these are things that my Sam Cofen bird has brought from the past to me. Just one comment on the Ark of the Moral Universe. It's obvious it doesn't bend by itself. It has only bent when people like MLK, John Lewis and others did some really hard bending. Next slide. Cornell West, I think has succinctly said what MLK was trying to say. And the question is, do we believe that? And if so, what are we going to do? The MLK Weekend here culminated with an amazing standing room-only concert in Symphony Hall in Boston with the Boston Children's Choir singing to us about what they had learned from MLK and what they were doing to become themselves more like MLK today. We're gonna hear at the very end, I won't do a spoiler alert for a few minutes from other young people at the very end of this. Next slide. And then do we really believe or take seriously these two other treasures my Sam Cofen birds brought to me? You can know the quote from Emma Cannell left. Rabbi Heschel marched with MLK in Selma and that was not an easy decision. Most of his Jewish rabbi friends pleaded with him not to go there because they knew that having Jewish rabbis there with the stigmatized, scorned, outcast African-Americans was gonna have some people hate the Jews even more. But Rabbi Heschel felt he had no choice. He felt, said in a free society, some people are guilty, but every one of this is responsible and for him to be responsible meant he had to be there. In the MLK concert that Boston Children's Choir did, the kids said, the kids are amazing. They said, we know a lot of you in the audience are asking yourselves, what would you have done if you had been alive with MLK? What would you have done back then in the civil rights movement? And then it said, we think the answer is easy. What are you doing now? That we'll tell you next slide. We're not able to have Reverend Jeffrey Brown, the co-chair of the embrace with us. He had to be at a funeral, so he's not joining us, but I didn't want to leave out the topic of gun violence. And so the last thing that we'll do is hear his sense of the moral determinants of gun violence in the next slide, 60 seconds at the embrace. You'll see the embrace in the video. So next slide and start the video. It's another black life that has been taken from us. God, we tire of business as usual. So we stand here together, determined to reframe this narrative so that people will understand that Tyree's life matters, that our lives matter, and that as we stand together with our hands in one another, we will draw strength from each other to be able to hold our heads up high together and change this world together. Now I'm going to go to the beginning of the CDC conference that Tramika Smith co-organized. We'll go to the next slide and show the first two and a half minutes, how it started, or click on the bottom. Now start from the very beginning. For this one, start from the very beginning. We're here at the U.S. Public Health. So good afternoon, love, call, and response. I'm glad you actually responded, good afternoon. Thank you for doing that. I worst cannot express how excited I am to be here recognizing the United States Public Health Service study of untreated syphilis in the Negro male in Tuskegee and Macon County, Alabama, 1932 to 1972. Today will be a day of reflection, remembrance, hope, and joy. Today I hope we not only provide answers to your questions, but that we also peak your curiosity and your desire to learn more, specifically on ethics and equity. To be in our program, I would like to introduce President Joseph R. Biden, the 46th president of the United States. Thank you to the CDC and all of you for recognizing the 50th anniversary of the end of a grave, grave injustice. Government doctors tricked hundreds of rural black farmers into joining the Tuskegee syphilis study, shattering trust and medicine in ways it still endured. It took a brave whistleblower to end the experiment 50 years ago, but it took another 25 years before our government apologized under President Clinton. When it did, one of the studies last survivor said, and I quote, it's never too late to work to restore faith and trust, end of quote. That's the work of America. Our history has always been a tug of war between the ideal that we're all created equal and the harsh reality that racism has long torn us apart. At our best, the American ideal wins, but to heal, we can't forget the past. On my first day as president, I signed an executive order to advance racial equity across the board to ensure the promise of America for all Americans. Over 90 federal agencies are taking over 300 actions to close the racial gap in wages, wealth, health, and so much more, and it matters. Restoring faith and trust is the work of our time. So thank you. Thank all of you for being partners in this work. And a few minutes later in the next slide and segment, Carmen's mother, Mrs. Lilly Head, explained what the study was about. So we can go to that next slide, I think. Mrs. Head, I'd like to start with you first. Can you tell us a little about those most impacted by the study, the men and their families? Thank you. And I would also like to thank Dr. Walensky, Dr. Smith, and everyone here at CBC who had a role in planning and preparing for this program. Thank you so very much. The men, they were all human beings. They were sons, fathers, grandfathers, uncles, cousins, neighbors, pillows of their community, pastors of churches, church leaders. They were our family providers. They were the rocks of our families. They were loved and they loved. They contributed to society and our country. And they were denied, deceived, lied to, regarded as less than and treated inhumanely and used as lapkin epics. They were trusting, believing. My father, along with 622 other loving men were in this study and they were human beings and they were loved. Thank you for that introduction. Powerful words. One more question for you while I let you go. Now, most of us refer to the study as the Tuskegee study. What is the true name of the study? What does it mean? Tuskegee syphilis study as it is commonly known and Tuskegee experiment as it is commonly known. It's misceiving, mistreatment. Leading the name of the study and of the men. When you place Tuskegee in front of the study, it gives Tuskegee the ownership. It leaves a scar on the town of Tuskegee and a Macon County. Tuskegee, we're not, is not the owner of the study. It is the United States Public Health Service study of untreated syphilis at Tuskegee and Macon County. That's very important and we want to change that. That's part of moving forward and that's part of telling the whole story. You might see Tuskegee syphilis study but it doesn't tell you what the study was all about. When you place untreated in front of that, it tells you the deception, the deceit, and the purpose of that study from the very beginning. Untreated. So we need to be cognizant of that and we need to tell it. There's nothing wrong as Dr. Willinsky's saying and not allowing our past to lead us into the future or to be a part of our future. But it's important for us to realize that we must revisit our past in order to move forward for the future so that we don't make the same mistakes and we can improve every day in what we're doing. All right, thank you. We're gonna now move maybe in the next slide. I'm not gonna do long introductions. I've invited each speaker. You have their titles to just tell us if there are additional things that they would like us to know about them. And so I'm not just handed over to Carmen Thornton. Carmen. Good afternoon, hoping everyone can hear me. Thank you very much for your intro and your very thorough discussion. I really appreciated learning from you this afternoon. Hello, everyone, I'm Carmen Head Thornton. I am board member and the finance committee chair for Voices of Our Fathers Legacy Foundation. I also work as the director of research grants and workforce and as interim director of development at the American Academy of Child and Analysts and Psychiatry. My career and commitment to public health is the direct result of my family's history. I am the granddaughter of Fred Tyson, one of the men used as a subject in the US Public Health Service of the study at Tuskegee. My grandfather played an instrumental role in my upbringing. He was born in Tuskegee, Alabama and took great pride in both his community and family as a father, husband, carpenter, farmer and firefighter. Voices for Our Fathers is a 501c3 non-profit established or founded in 2014. Our goal is to preserve the legacies and history of the 623 men victimized and unethically treated in the syphilis study into foster social justice, education and public health. My mother just heard from Lily Tyson had services to foundations president. I extend sincere thanks on behalf of the board for including us, the families, the community in this conversation as discussants. It means so much. There's probably even thousands upon thousands of talks about the syphilis study. It's very few and far between where you see that family members are also invited to be a part of the conversation. So I sincerely thank you for extending this invitation as to us as partners in this. It is an esteemed pleasure and honor to spend part of this afternoon with the distinguished speakers that are virtually gathered today. Some of whom I have known and truly admired for many years. I also take a special delight in all of those who have registered today to be part of this experience as audience members. And I'm hoping that you will find this black history experience both informational and inspiring to your work in the fields of public health, medicine, research and ethics, Tuskegee healing, the moral determinants of health and the ethics of research on black health is the title of today's discussion which I absolutely love. I also acknowledge all the students and trainees who are participating as course requirements and wish you tremendous success and Godspeed in your future work to champion health equity and conquer systemic racism as it's negative and unfair impacts on health outcomes of BIPOC communities around the world. I truly believe that the future generation will lead us and that our youth and our trainees are our future. They are our greatest resource. So I wish you all of the luck in building your careers and doing this very important and noble work. I also give a quick shout out to my nieces, Kylie and Trinity and Bryce. They're in the sixth and seventh grades and they're also students and they're learning and listening in today as well. I applaud Tuskegee University and Harvard Medical School Center for Bioethics for this two-year partnership and creating this important platform to share, disseminate and reflect on the moral and ethical lessons of the U.S. Public Health Service Syphilis Study at Tuskegee. As a granddaughter of one of the men, I am convinced that there are still many important moral and ethical lessons to learn from the Syphilis Study at Tuskegee, particularly as we public health community medical leaders explore how to build trust and to determine how best to deconstruct medical mistrust with accountability, validation, forgiveness and restitution leading the way. I am proud that this webinar builds on the three important previous recent conferences that Lachlan just mentioned, each designed to honor the memories of the 623 men in the study by engaging as many people as possible in commitments to deeply understand and to definitively end the harmful effects of racism on health and health care in this country. As we begin the dialogue with the discussants today, I am inspired by a quote by Reverend Dr. Martin Luther King Jr., which states that the time is always right to do what is right. And looking at this from a moral and ethical lens, I think that that quote is just so apropos. I'm looking forward to a wonderful conversation today with these esteemed discussants. And I thank you for recognizing the past and challenge us all to move the legacy of the syphilis study from one that is really focused on trauma and tragedy to one that shines the light on triumph and victory. So thank you again, and I'm looking forward to this discussion. Thank you. Thank you so much, Carmen, and for all of you who are participating, I share Carmen's thanks to you. And after the presenters and panelists and all that, we're gonna return to Carmen on behalf of herself, her mother and all the descendants for the final words. But right next, we're gonna turn to Susan Reverby. You can see her on your screen. I'll let Professor Reverby, but for today we're family. So I'm gonna say Susan offer some thoughts. So Susan. Hi, thank you very much. I'm really glad to be here. I'm gonna say something very briefly about the study. I'm assuming that most people in this audience already know about it. And then I wanna add some ways to think about it. So I wanna remind you that the 623 men in the study, all African-Americans in Macon County were enrolled by the Public Health Service with the assistance of the medical and nursing personnel at Tuskegee University. And what they thought was a treatment plan for what was called the bad blood. And it meant that most of the men were supposed to be, not all of them were in the late non-contagious stage of the disease called syphilis. About two thirds of the men had the disease. The other third were non-syphilitic controls. They were told they provided aspirins, iron tonics and vitamins were treatment and that even a diagnostic spinal tap was special treatment. They were denied the drugs for treatment beginning in the 1930s and then again by the late 40s, early 50s when penicillin became the drug of choice for the disease. Instead, I wanna argue that they wandered in what we can now think of as a medical desert for 40 years, almost biblical in that sense, between 1932 and 72, never knowing what they had. Many died from the disease or could have passed it on to their sexual partners, wives and children. The study, I think, and this is important was premised on a medical misunderstanding but was at that time an understanding that the disease was different in blacks and whites, the assumption that the cardiovascular complications happened in African-Americans, the neurological ones in whites when the evidence of course did not even show this. More than a dozen research studies in medical journals showed that those left untreated, became sicker and died earlier. But some of these reports actually called the men volunteers which obscured somewhat the fact that they had never been asked if they wanted to participate but the study itself was never hidden away. One of the things that's really interesting to think about here is that none of the evolving rules after the Nuremberg Trials after World War II which denounced the Nazi medical experiments were seen as applying to the work in Macon County because of course the thought idea was that in Germany this was being done by either barbarians or Nazis. The public health service doctors instead thought they were fighting in a war against syphilis and as generals in the war, they had the right to determine who should live or die in this battle. Therefore I think it's important to remember morally that it's too easy to assure ourselves that this will never happen again given new rules for research and our knowledge of the past. But it fails to understand that kind of position that racism is embedded in medical understandings that guide research then and still do with today's medicine. Just look at the research that's done now on the way in which the algorithms, inspirometers, the assumptions about drug amounts on pain tolerance all have a racist component that assumes that race is a biological category that determines how we should think about medicine and how we should provide it. It is too easy I think, especially for those of us in the medical field to think of the doctors who perpetuated the study as racist barbarians from another time and place since the study ended 50 years ago. But I need us to really imagine and to think about why the researchers thought they had the right to do this study and how caught up they were in the importance of their research that they didn't see the human beings in front of them. Finally, I think it's important to consider how beliefs correct and imaginary of what happened in the study continue to circulate in our society. And when coupled to everyday racism, experiences leads people of color to both mistrust to mistrust medical options and the medical profession in general and the medical institutions. But the key point as we're talking about is where the blame should be put. And we need to think about how we make these institutions more trustworthy rather than to think about the concept of mistrust. Thank you. All right. Thank you, Susan. We're now gonna move to the two substantive issues that HIV AIDS and then maternal infant mortality. So we have Jesse Mylon to offer some reflections as someone who's devoted much of his life to the work of trying to address HIV AIDS in this country, particularly, but not only among black Americans. So, Jesse. Well, thank you so much, Dr. Faroe. And thank you to Tuskegee and your Center for Bioethics for inviting me. I'm Jesse Mylon and I'm the president and CEO at AIDS United and AIDS United as a national organization focused on ending the HIV epidemic in the United States. And I come to this work as the CEO of AIDS United as a person who's been living with HIV for 40 years. Last year was my 40th year since I acquired the HIV virus. And over these years, as a lawyer, as a community activist, as a public health official, I found that HIV is very much emblematic of the issues that are causing us to have this very webinar today. Health disparities continue and HIV AIDS is probably one of the best examples of where racial health disparities exist. Today, there are 1.2 million people living with HIV in the United States. Many of us are now age 50 and over and that's a wonderful thing. Half of the people living with HIV in the US today are now age 50 and over. But here's the problem. Of the 1.2 million people living with HIV who have acquired HIV, nearly half are African-American. Why is that? Why is that when African-Americans are barely 12 or 13% of the US population? That disparity is a problem. There's another 1.2 million people in the United States that the CDC tells us are highly vulnerable to acquiring HIV. And the vast majority of those are black and brown people, especially gay men of color. Why is that? And that disparity, those disparities are really the nature of the problem of moral determinants of public health and the lack of true bioethics in our approach to healthcare and health research. And one critical example is this. Of the 1.2 million of us who are living with HIV in the United States, many of us who are aging with HIV healthy are doing so because we have achieved a suppressed viral load, meaning that by being on medications, the virus is contained, it is not spreading and destroying our immune system so that we acquire an HIV and the AIDS defining illness and die. It's called viral suppression. Barely half of us living with HIV have achieved viral suppression. And I was so struck in that earlier section on the study on syphilis at Tuskegee that we thought of the problem that these men were untreated, untreated. Look at the number of people in the United States living with HIV who are not getting the treatment they need because barely half of us are achieving viral suppression. That's on the clinical side. The other half on the prevention side is that there is a wonderful drug called PrEP, pre-exposure prophylaxis that can literally stop at 100%, someone from acquiring the HIV virus. The percentage of people who are African American who are actually aware of PrEP and accessing PrEP, barely 25% of the people who are currently on PrEP are black or brown people. That's a problem. And so when we think about moral determinants of health and bioethics, I think we have to go straight to what does the HIV epidemic give us an example of where morality did not exist? And that is this. We have animus, we have disparagement and we have moral judgments that have been applied to people who are at risk for HIV and living with HIV since the very beginning. But other words for animus, disparagement and moral judgments are these, racism, homophobia, sexism, misogyny, transphobia. Those can easily be applied and are all the time to people who are vulnerable to HIV and living with HIV. And these words reinforce the stigma of HIV that prevents so many of us from even getting into care or even wanting to know our status. These problems are what we face every day. I hear stories, I met a man not long ago at a conference sponsored by the Congressional Black Caucus, a heterosexual black man who had HIV for over 20 years. He learned his status when he was discharged from the army. Over 20 years and never told anybody, including his own family. That's how deep the stigma of HIV can be because of animus, disparagement and moral judgments that lead to homophobia, sexism, transphobia, misogyny, on and on. And so when I think about what is needed for achieving greater ethics in our research and our approach to HIV AIDS, I go back to the very beginning of the epidemic when in 1982, a group of men stormed what was then known as the Lesbian and Gay Health Conference. They stormed it and said, we have to talk about HIV AIDS and you cannot talk about it without talking to us. They were gay men living with HIV. And from that movement, which then happened in Denver, came the Denver Principles which are now known as meaningful involvement of people living with HIV and AIDS or the MEPA Principles. Meaningful involvement of people living with or vulnerable to HIV and AIDS. What do we need to do in research and clinical care to assure that we have meaningful involvement of the people who are impacted by a disease? That role is for us to think about in this very session. What does meaningful involvement look like in research? What is meaningful involvement look like in clinical care? Now, I have been in a clinical trial. I was in a clinical trial for 10 years. And I got a sense that my role in that trial was because of all the many demographics that I have as a black man. But I've also been on the other side. I've been on the deciding side when I've been a grant reviewer many, many times for multi-multi-million dollar grants from the federal government on HIV research. And when I look at that research, I wonder, well, how is the community that's impacted by this disease actually being involved? Well, we see community advisory boards. But is that tokenism or is that meaningful involvement? Maybe we have some ideas that we should be thinking about in a different way when it comes to what does meaningful involvement in clinical research really look like? What if we had a community principal investigator? What if we had community members who were actually co-authors of the research? And I think that leads me to the final question that I wanna raise, which we have heard from that wonderful statement from that survivor of the study at Tuskegee that is never too late to create trust. Trust is built when we can trust the messengers who bring important messages to us. What do we need to create trust? Is it merely the message itself or is it also the messenger? I need to know that I can trust who I'm hearing the message from and that I can become a trusted messenger as well. Creating that trust might very well mean that we start with meaningful involvement and that we break down the structures that have created so much mistrust, so much disparagement, so much animus, so much hatred, and so much injustice. Thank you, Jesse, so much to let that just, but I'm gonna move over to Wangi and actually help me and everybody make sure we're pronouncing your name right. Names matter too. Of course, so thank you for the opportunity to be part of this conversation. Good afternoon, everyone. I'm Wangoi Moigai, a professor at Brandeis University and a historian of race and medicine. My work examines the long history of black infant death in this country and this is one of the most enduring racial disparities and issue that raises serious questions about the ethics of trust as Jesse just raised and also the ethics of blame and responsibility, especially when it comes to questions like who is responsible for protecting the vulnerable and which lives are viewed as worth saving. And in the past few years, there has been a growing public conversation and policy attention to racial disparities and maternal infant health. As we heard earlier just this past weekend, The New York Times reported on a recent study looking at how race and class impacts birth outcomes and the researchers there were analyzing data available in California and found that regardless of income level, black families are at greater risk of dying or experiencing significant birth complications. And this was just one of many, many studies and reports documenting worse and in some instances, worsening childbirth outcomes among black Americans, including higher rates of maternal deaths, stillbirths, infant deaths and severe morbidity. And much of this media coverage has described the situation as a crisis. And that language of crisis has proven effective in generating a national conversation, in catalyzing political advocacy. Yet at the same time, it obscures the fact that the losses we are experiencing that we are reading about today are not new. They are the results of processes and practices that have been hundreds of years in the making and have worked to cut black lives short. Now alongside this media coverage, we're also witnessing new policies that aim to address these longstanding disparities. And we can look, for example, to the Black Maternal Health Monobus Act, this legislative package spearheaded by Congresswoman Alma Adams from North Carolina and Lauren Underwood in Illinois. And for both of these black women U.S. representatives, their concerns about black maternal health grew out of their lived experiences. It wasn't just about the statistics that motivated them to act. For Congresswoman Adams, the issue cut close to home in that her daughter Janelle nearly died while giving birth. And for Representative Underwood, she spent over a decade working as a nurse and understands the impact nurses have on patient care, including on childbirth outcomes. And I mentioned their legislative efforts, their work in government, because it's an example of how black community leaders, especially black women advocates, have been long engaged in calling out the injustices and marshaling resources to protect the lives and livelihoods of black mothers and children. And if we wanna deepen the conversation about black maternal infant health in the U.S. and if we want to do better at making childbirth safer for everyone, then we have to look to and learn from the work of black women health activists who for centuries have drawn attention to the ways in which their families and their communities bear a heavier burden of premature death. Black women have been on the ground providing respectful, holistic care, forging ways to prevent these deaths from happening. We can trace this model of care back to the work of its late midwives and the reasons why black families trusted midwives to see them through pregnancy, through labor, through the earliest fragile moments of a newborn's life. We can also look to the work of figures like Dr. Rebecca Crumpler, the first black woman in the country to earn a medical degree in 1864. And Dr. Crumpler, she dedicated her career to black maternal infant health. It included her traveling to communities across North America to provide medical aid, including among newly-grained slaves. She opened her home to give poor families a safe place where they could go for free childcare and free healthcare. And Dr. Crumpler also took the additional step of publishing her health advice so that women could have a trusted resource to turn to when their babies became sick. And that guide, titled A Book of Medical Discourses, was very likely the first health advice book written by an African-American. And in it, Crumpler challenged arguments that black people were inherently more susceptible to premature death. She did so by naming the larger conditions that made black parents more vulnerable to losing a baby, conditions rooted in racism in sexism, in societies in difference to the needs of the poor. And in this regard, Crumpler's efforts to bring needed healthcare resources, her work to educate her community, and the work she also did to challenge these theories of biological racism are all representative of the ways black women especially have never been silent, but have spoken back to the injustices that they face, the ways in which they've organized to tackle a health inequity that for too long has been rationalized as natural, as inevitable, or the fault of individual mothers rather than a tragic reflection of an unequal and inequitable healthcare system. And I bring this historical perspective into the conversation because as we're working to reframe and transform the way we talk about race and healthcare and medical research to address enjoying problems like the HIV AIDS epidemic, like maternal infant mortality, it's important that we recover and attend to the long and rich tradition of black communities and black activists organizing for health, for better healthcare in the face of institutional racism, in the face of government neglect to understand what these earlier generations of activists did, the obstacles they faced, and what we can learn from their struggles to ensure the survival of the youngest of the most vulnerable. They've really left behind a rich legacy of work and ideas that reflect a deep commitment to health and racial justice that I believe we just can't over, we can't afford to overlook if we stand any chance of achieving birth equity. Great. Thank you. We now have brief comments from our two commentators, but I am gonna just add, I put in the chat, a long tweet thread I put in earlier this week about moral determinants, stigma, HIV AIDS, and how powerful it was in improving things when people like Tony Fauci and others initially were forced to listen to the activists and then having learned things, said how much they'd learned from them. And I expressed at the end the hope that we might start listening to black women who have been telling us for decades, if not centuries. And then after I'd done that, straight like, why has that not happened? And I think you cannot talk about the lessons from history from the HIV AIDS advocates and the differences in the way that black women have not been listened to without understanding the differences between the way voices of men and voices of women, especially who are black in this country are listened to. And until we address that moral determinant, we're gonna have continued ongoing serious problems. So, Termika Smith, I invited Termika to talk personally or from CDC, but just what thoughts has this conversation so far sparked for you? Sure, thank you so much for the invitation. I'm not sure I didn't necessarily review the ethical shortcomings of the USPHS study or the lagging change around black maternal mortality. And what's often seen as a lack of care for those living with HIV or AIDS, those have been laid out so eloquently in both the historical backgrounds provided by Susan, Jesse, and Wangkui. What I would like to bring back to the forefront and reiterate is something that was brought up earlier on and the importance of the concept kind of posed about joint adventure or joint adventure similar to what Jesse noted around MEPA. It has distinct similarities to the nothing about us without us principal. And in this case, I'm invoking this in regard to all traditionally marginalized communities. I think we can all agree that any research protocol, research investigations or policy developed should always include full and direct participation of members of the group or groups affected. And this is not often been the case for a lot of research including that of the federal government. But we live and we learn and we learn as we work. And it's important that we remain active and solutions forward to ensure this does not continue to happen. In that vein, the next question that must be asked is, how? How can we do that? The first thing is supporting traditionally marginalized communities in becoming the researcher and provider. An example of this can be through grassroots efforts focused on what I'm gonna call real community-based participatory research. Another opportunity includes supporting more scientific pipelines that provide young students of color, not only the exposure, but the tools to become those future scientists who will be doing the principal investigation in this important work. And lastly, calling out studies and creating accountability for studies, study proposals that do not include those being affected. If researchers and policy wonks, like us, who care about this work to not continually note the importance of community inclusion, who was actually gonna be able to do that? Ethics in public health is central to the vision of CDC, particularly around equitably protecting health, safety and security. And as public health professionals, it is woven into our DNA to always keep ethical principles and values at the forefront when discussing new policies and actions for every decision. I can say that CDC strives to consistently integrate the tools of ethical analysis in its day-to-day operations, including providing consoles, education, training and opportunities. There is a public health code of ethics, thank God. A promise to society, a commitment to hold a moral and ethical compass to the work we do in pursuing public health. A true commitment as we seek to support the highest possible health for the public. We in the health-focused community, that's all of us, must always keep in mind that public health decisions affect the health and wellbeing of people, groups and communities. And I will say one more thing about CDC specifically. We know that we should always be forging towards better inclusion. That is both the workforce level, ensuring we have scientists of color and at the program research and implementation level where we must include communities. We are working to better engage with the communities we aim to serve throughout the entire process of public health activities, from deciding to get the what questions to ask, to finding out how best to broadly share so that community members can use the results. And that is key. This work is not easy in the face of historical and institutional injustice that we are very well aware of. Ensuring that CDC studies meet the highest ethical standards and that CDC programs carefully address health disparities are not destinations but processes that require humility and a constant focus on ethics and equity in all that we do. Our trustworthiness in the eyes of the public is the true measure of our efforts and of our progress and we remain steadfast in that. And one last thing I do want to say is those are my opinions and my opinions alone and not those of specifically the CDC. I do have to do that. Thank you so much. All right, thank you. We have questions from the audience but I was hoping that for a little while we could actually have the four people that we just had interacting and talking together with each other. Some of the questions that have come into us, I'm gonna put two together. Tamika, you talked about real part community-based participatory research and one of the questions as I've been thinking about this is if we really took Paul Ramsey seriously and joint adventure or even further realized researchers are guests in the community and thought back to the 1932 and if the scientists had in making County found rates of syphilis and then asked the people in making County what would they like to understand better? I suspect they would have wanted to understand how to eradicate syphilis. They would have had ideas. They would have come in partners. So it's not just inviting community members to participate in our studies. It would be actually turning the world, I would say right side up and going into communities and saying what do you need to understand better in order to achieve the health that we've heard Black midwives and their patients that have done for a long time? So question for any of you and you can raise your hand is connecting to a different question in the chat which is bioethics historically seems not to have much impact on this. What would it look like in the future to say bioethics has the question was one like the fights we're trying to fight but what would be happening and how with AIDS or maternal infant mortality if we took what we've talked about so far and we're putting into action? Jesse or you wanna go, let's go first. What would real community participation in research mean and what would it look like to say we've been achieving victories? Susan, why don't you go first? Yes, Susan? I'm unmuting Kai, thank you. I just wanted to say I think that the rhetoric is good but the reality of how you do this is actually quite complicated and we have to be really mindful of that. So in the 90s I served as the consumer representative on the OBGYN devices panel of the FDA. And I didn't have a vote but I had moral suasion essentially but I was supposed to represent all of woman kind and how we evaluated these things. And I think what's really was hard is I'm a historian I don't have an MPH, I'm not, I only play a doctor or a nurse in my classroom, I'm not, I don't have that kind of training. And it was very difficult sometimes to think about how to get a word in edgewise how so much of what I was talking about made no sense to the doctors at all. And I just thought there should have been more training not just for me but for the other people on the committee to think about how to respond to me as the so-called consumer representative in that situation. But FDA required that on its advisory committee. So one of the policy questions to raise is what would it look like if federal dollars required community representatives but just putting the body on the committee is irrelevant. I mean, just like we know that black policemen kill people in Memphis, right? So it's not just about the bodies it's about how they, what they think about what's in their heads, what they think is the right thing to do. So I think we need the training both for the community people but also for the so-called experts who are on those committees themselves. I would really echo what Susan is saying. I mean, as I said earlier I've been involved as a participant in clinical trials but I have also been a reviewer a lot especially in these last few years. And the burden on the one community representative the burden of the one patient representative to stand up to all the scientists on a review panel to determine whether something's gonna get funded or not is huge. But the role that we play on community advisory boards I'm beginning to think is more and more just tokenism because I've been in too many grant reviews where the application describes all of the clinical research and this much is literally one paragraph is devoted to what's going to be the community's role in hearing about the research but not really influencing the research. And I, you know, I during COVID I actually met a dear colleague of mine who was in a clinical trial for one of the COVID vaccines. I was like, oh my God, I don't know that I've ever talked to anybody who's been part of a clinical trial recently who's willing to say it out loud. The transparency about clinical research does not exist. And yet if I knew that there were people like me really involved in the work or if people like me shared that the experience of being in a clinical trial was a valuable experience that might change the trajectory of who's participating and who uses the outcome of the research. That secrecy needs to stop. And that secrecy is what I think is holding so many of us back from even understanding why a clinical participating in a clinical trial is important or that the outcomes of clinical trials really should apply to us. So let me take that, let me take that a little bit further. I mean, you see the, you know, comes up in Massachusetts over and over people are very proud we're gonna invite people to the table like so they can sit at the table but it's just say, who's table is it? We have its government. The people bought the table paid for the table own the table. These conversations I've been in a hospital almost all of my life when we were very proud that we have a couple of people from the community sit and join in a meeting. If it really was community, community centered why are all the meetings in the community and the majority of the people are there and then the researchers are the one or two or three who are there. And even if it's in the hospital, the hospital in the hospital felt like, oh, we've got all this money and we're being generous when we have people in the community come in not charging them. Why are we paying for them for all of their time since every one of us gets paid for our time? And why are we admitting that every single building that we have except for philanthropy was paid for by their health insurance premiums their tax dollars, they should own the buildings. I mean, I just think once I start thinking on this road, there's a lot that would change very, very quickly. So having said that, I want to hear from Dr. David Hodge who's joined us now from the National Center Associate Director of National Center for Bioethics. What do you make of all this? And as you are thinking about the future work of the National Center, what thoughts come to mind for you? Thank you very much and good afternoon to everybody and so happy to see everyone on here today. Mama said that I should always say thank you. So I need to say thank you to specific people. Dr. Woobin Warren who retired in December was instrumental in pulling in part of this team this Tuskegee Harvard collaboration. So I just want to say express thanks to Dr. Woobin Warren he's the one who brought me to Tuskegee he mentored me in public health and kind of got me started on this trajectory. Dr. Reagan-Zurl who's my father in this world my mentor who's very important it had done so much research in the syphilis study the so-called syphilis study. Dr. Bob Trude who is the director of the Center for Bioethics at Harvard and Dr. Rebecca Vendell Weintraub and Christine Mitchell and Lachlan my big brother and of course by their sister Susan who I was able to spend some time with under their husband and Jesse who's like a brother to me now that I'm getting to know him after our November session this is a family affair. And that the notion of family and relationship is extremely important to the conversations that we are having. Jesus said something about love your neighbor as yourself until we start to see ourselves in our neighbors and relationships and have them to be meaningful and understanding of community being meaningful. We're gonna continue to kind of wonder I teach bioethics classes and I'm forging and thinking through the notion of black bioethics and what that means because students always ask the question I'm sure each of us who teach ethics to me ask the question is there anything good that comes out of the so-called syphilis study in the United States Public Health Service a study of untreated Negro men in Macon County is anything good that comes out of it? And we often say stuff like well informed consent came out of it that's good the IRB came out of it that's good but I think that other good is coming out of it. If we look at this thing consequentially that the study it's the so-called study self was not good but what emerged was an opportunity to access conversations that we may not have necessarily put together having Jesse here talking about HIV and AIDS having one guy talking about maternal mortality and infant mortality and Sheila Neal Shaw talking about maternal mortality, gun violence these kinds of conversations. These are the kinds of things that common your grandfather his life had meaning in what is happening today. Lachlan began the conversation talking about bioethics by defining bio as life ethics as values are the rightness of all this of things and I think to some degree bioethics mainstream has become so scientific has become so focused on things that really matter that we may be missing lives that matter. Imagine that in the mainstream conversation bioethics that homelessness is not a major conversation. When you take a look at a homeless person what each person who's living on the street is battling with something besides the homelessness and besides the weather. Many of them are battling with HIV and AIDS. So now they have these comorbidities that they're struggling with and if these are not bioethical issues, then what are? They're battling with mental health. That's great. Two examples that that sparks my brother David a hero to many people almost every young person in our global health is Dr. Paul Farmer. Tracy Kitter wrote a book about him mountains beyond mountains. Tracy Kitter's latest book is about rough sleepers about one of my closest friends for decades Dr. Jim O'Connell leader of Boston healthcare for the homeless and really striking to me about the incredible impact of Paul Farmer and partners in health and Jim O'Connell and Boston healthcare for the homeless is both organizations from the beginning. Paul started with people in Haiti asked them what do you want? What do you know? Found that they knew more they actually knew more of practical value about how to control HIV, AIDS, tuberculosis Paul knew the biology and medications and in everything they've done in Haiti which accomplished better cure or better control rates for AIDS and we'd ever done in Boston. It was because it started from the wisdom and knowledge that the people there had Boston healthcare for the homeless. Jim O'Connell when he first started working with him 40 years ago they didn't want him to do anything starting off except wash feet and all that like they get to know them. Everything that they've done the people who are or have been homeless are on the board of directors they decide everything and they're the most effective organization working with the homeless because it's not just the people who are homeless or the people in Haiti or now people in Rwanda have a moral right. They actually know more than anybody else about what works in their lives how to make that work and all of that. So this is not just touchy feely moral oh we should involve them. Paul Farmer and Partners in Health Jim O'Connell, Boston healthcare for homeless have proved that if all you care about is concrete results, this is the way you get it. We're getting just about to the end so I'm gonna invite before I turn over to Carmen for some closing words and then a three minute video from Tuskegee that we'll all enjoy but I'll start with David before we get to that but can we go back to the everybody on the screen? I'll go back in reverse order. One thing, idea that you have especially for the students who have joined us young people about what they should take from this and maybe do or think about doing. So David first. Yes. Subjects are humans and humans are all neighbors. Jesse, one thing. Ask the question, what do you need for this work to be meaningful for you? Wangui, one thing. I think behind all of these statistics that we look at, that we recite, that we recount our people, our individual lives that are still living that we've lost and those are, that should be at the center of our attention and the center of our concern not the numbers, not sort of thinking about it abstractly and aggregately. Camika. Help disparities weaken our entire society by diminishing the human potential of millions of people in this country. So keeping that in mind and all the work that you do and keeping that at the forefront of your life's work. Susan, you're on mute. Sorry, I think we have to think about the difference between community participation and community control and they're not the same thing. We don't need more tokenism. We need to really rethink how we structure research and medical care. Great, okay. Carmen, you have two or three minutes for some closing words before we go to the video. Great. Thank you. Actually, one thing, first I'll put you into one thing and then offer some closing reflections channeling your mom, your grandfather for all of us. I would like to again, acknowledge another important quote by Reverend Dr. Martin Luther King as my words or my short piece. And that's of all of the forms of inequality and injustice and healthcare. Well, I should say of all of the forms of inequality and justice and healthcare is the most shocking and inhumane and he said that decades ago and here we are still in the space having the same struggle with health inequities. There is a very popular book out, excuse me. It's called the political determinants of health that was written by Daniel E. Dawes. It's an awesome book if you haven't had a chance to pick one up and read it, I suggest you do. But in thinking about this conversation today, I'm also thinking about the title of our talk, which is the moral determinants of health and how that moral lens really has to be a part of this conversation as does community involvement. Jesse, I also served as a voting member of an institutional review board for MedStar for many years and did that really out of obligation and as devotion in thinking about my grandfather and his participation and sort of my approach was to look at the protocol against the informed consent to see how much was shared in the informed consent that was in the protocol. And oftentimes it didn't always match. So I commend you for doing that. I think it's really very important work that more people should do as community and voting members. I'd also like to quickly acknowledge an important partner and group that we've been working with and that is the Milbank Memorial Fund. We had a wonderful events last June. The Milbank Memorial Fund was actually engaged and involved in the study by paying for the autopsies of the men that were subjects in the study. And just recently we've come to know the Milbank Memorial Fund and they provided a large gift to the voices for our father's foundation, a $2 million gift as restitution. And we're really hoping that our partnership with them will continue to grow and allow us to be engaged partners in addressing the moral compass and promoting health equity and ensuring as Dr. Reverby says that this really doesn't happen again and whether there's a potential for it to happen again. So I thank you all for being engaged. I thank all of the audience members for listening in and asking questions. Our website is www.voicesforfathers.org and we certainly welcome partnership. We welcome involvement in any questions that you may have of us. So thank you so much for this time this afternoon. Thank you, Carmen. So let's go to the video. Thank you everyone for joining us. We look forward to continuing this series and in continuing this dialogue, we wish you a very wonderful day. Thank you.