Transcript: New Ethical Questions and 21st Century Genomics
The Hastings Center hosted a special virtual discussion on “New Ethical Questions and 21st Century Genomics” on Thursday, June 4. After the atrocities of Nazi medical experimentation, the Nuremburg Code of the 1940’s established the importance of voluntary, informed consent by research participants. The Belmont Report of the 1970’s, as well as the original ethical, legal, and social implications (ELSI) framework of the Human Genome Project beginning in the 1990s, added additional guidance. Yet recent and emergent developments in genetics and genomics are posing challenges to these conventional ethical paradigms. Drawing from the examples of direct-to-consumer DNA testing and ancient DNA research, Alondra Nelson, president of the Social Science Research Council and a professor at the Institute for Advanced Study in Princeton, who is a Hastings Center fellow, considered some of the new ethical questions facing scholars, policy-makers and the public and will suggest some perspectives that might be more apt for contemporary dynamics.
Ben Wills [00:02:36] All right, everyone. Thank you so much for joining us and listening to Dr Nelson today. I just want to let you know that we are taking questions which we will be taking through the Q&A function of Zoome. We also have a hashtag on Twitter, hashtag ethical questions. You can join the conversation that way. This conversation is being recorded and it will be available later today on the Hastings’ website. And I would like to introduce Dr. Mildred Solomon, who is the president of the Hastings Center, who will introduce Dr Nelson.
Mildred Solomon [00:03:14] Hello, everybody.
Mildred Solomon [00:03:17] It’s my pleasure to welcome you. I am the president of the Hastings Center. Hastings is known to many of you, but not all. It’s a bioethics research institute focused on the wise use of emerging technologies and on compassionate and just health. You are an audience of researchers and university faculty from many different disciplines, bioethicists, policy makers and members of the general public. That’s a very eclectic mix and it’s on purpose by design because Hastings believes that ethical questions should not just be debate debated among experts, but that we have an obligation as citizens to engage in public discussions about the choices that we face that have ethical significance in science and health. Our focus today is on genetic testing, especially direct to consumer genetic testing, including its intersection with race. And we’re going to turn to that topic in just a moment. But with more than five hundred of us all gathered today for this event, I think it’s important. And I’d like to start by acknowledging the broader context in which we find ourselves. We all know we’re at an exquisitely painful moment in the history of our nation.
[00:04:40] The pandemic.
[00:04:43] Unconscionable levels of economic inequality and racial discrimination, even hatred, are tearing us apart and calling on us to find a new way forward, a new way to trust one another. Our topic today is direct to consumer genetic testing is narrow in comparison. It’s narrow in comparison to the numerous threats to our democracy and to the powerful forces that are undermining the well-being of huge numbers of our people. Nevertheless, the topic is important and it’s relevant to any discussion about race in America, which is the kind of discussion all thinking people should be having right now. Furthermore, quite by accident. And it’s a lovely accident since we invited her nearly nine months ago. She seems an eternity. Our featured guest, Professor Alondra Nelson, is a sociologist of science who’s been studying racial politics for decades. So I know she’ll have thoughts about our national dilemma as well as the primary topic of this session. Currently, there’s great interest in genetic testing, mainly to identify rare medical conditions and risk factors for common four common conditions. For example, at the Hastings Center last year, we issued a major report on the growing interest in sequencing all newborns are authors of that particular report cautioned against offering sequencing on a population basis to all newborns, but believe that it would be a beneficial diagnostic tool for sick newborns. Likewise, we’re getting ready to publish guidelines on whole genome fetal sequencing, the use of sequencing in the prenatal period. But genetic testing for purposes like those, like in the medical context, pale in comparison to the commercial sector where direct to consumer testing has really taken off today. Tens of millions of people have given DNA samples to a handful of companies. And the results are being used in many settings, many settings from criminal justice to geneology. And many in between. Professor Nelson has studied direct to consumer testing for more than a decade, including an extensive analysis of the use of DNA testing and ancestry research by the African-American community. Her insights will have implications for all of us as potential consumers of these tests and also for the field of bioethics. As we as our field seeks and or should seek to develop sufficient guidance for the use of these tests beyond the healthcare sector, something that we’re working. We aim to work on it. Hastings Center as well. So our time together is going to be structured like this. Dr Nelson will be making some introductory remarks for about 15 minutes. Then she and I will continue a discussion between us that you get to listen in on. And then I’ll open the door to all of you for questions. Please write your questions down at any time in the Q and A function, not the chat function in the Q and A function. And then Ben, who you just met, we’ll be reading those and he’ll let me know what you’d like to ask. Now to start, let me introduce Professor Nelson more formally. She is president of the Social Science Research Council, which is one of the most esteemed roles anyone in the social sciences could hold. And she is also Harold F. Linder, professor at the Institute for Advanced Study in Princeton, New Jersey. Her research explores questions of science, technology and social inequality. She’s the author of The Social Life of DNA, Race, Reparations and Reconciliation After the Genome. And also a book called Body and Soul The Black Panther Party and the Fight Against Medical Discrimination. And she’s also coauthored two other books, Genetics and the Unsettled Past The Collision of DNA, Race and History and Technicolor Race, Technology and Everyday Life.
Alondra Nelson [00:08:53] Hi, Millie. Good morning. Good afternoon. I know people are joining us from from all over, so whatever time zone you find yourself and thank you for being with us. And thank you for that introduction and the invitation to be here. I know you didn’t mention in my bio that I’m a Hasting Center fellow, which also is a great distinction. I’m very proud. So thank you for those opening remarks as well. That really set the necessary context for this conversation. You know, my perspective for a long time on how we think about ethics, genetics and ethics in bioethics has really been one that comes out of studying for over 20 years now, black people, black communities, engagements with science and technology and really taking that space as a way to move forward, to think about what we might want bioethics to do. What a new paradigm for bioethics to be. And you know, the kind of question that I’ve been kind of grappling with in the context of this over the course of my work is really, you know, how and why has it been the case that communities that have been the objects of scientific scrutiny, of technological surveillance, of what Harriet Washington calls medical apartheid, how do folks, you know, find space to be subjects and agents and powered people in science and medicine? And I think at its best, that’s what bioethics hopes to enable individuals and communities to do. So as you mentioned and I want to raise it because we’re going to talk mostly about the work that I’ve been doing over the last now probably 15 years on genetics and direct to consumer genetic ancestry testing. But I want to begin by saying a little bit about my book, Body and Soul, which is about African-American health activism in the 60s and 70s, because it is a moment at which concerns about police brutality, concerns about what we now call racial health disparities, concerns about medical discrimination were all articulated by local communities as something that that were interrelated and were something that were that needed to draw, that needed to something to draw national attention. So, you know, part of what I uncover in body and soul is communities who had a very, I think, nuanced discourse about what it means to engage mainstream medicine. They understood that over time, black communities had been, quote unquote, in their words, guinea pigs for scientific research, for clinical research that in the course of both research and medical care, that there was inhumane treatment, unnecessary death, settle suffering and care, and that it was not always from a perspective. And I think to be mindful of this moment of a perspective of victimization, that part of the story that I’m able. But I had the sort of great honor to tell here is really about how communities sort of sought to find a way forward. And that included finding a way forward as scientists, as medical researchers, as clinicians. Right. Against the backdrop of this very pernicious history of medical and scientific discrimination. And, you know, also in this particular moment, in the backdrop of something like a research center that was trying to experience connections between black people’s biologies and violence. Right. That was it was harking to the violence of the 1960s and 70s to say, you know, to make racist claims about black people’s bodies as being sort of the source of of protest. And, you know, Jonathan Metal’s work on the protest psychosis sort of carries some of this discourse and conversation forward as well. This was also a moment when, like today, attention was drawn to medical and collective incarcerated people. And there are particularly particular vulnerability to the predation of risky research and also of neglect for, you know, basic services that they need. So and to relate to your earlier point, it was also a moment and when at which, you know, local communities were also engaged in trying to advance newborn screening as a way to combat genetic diseases like sickle cell anemia that disproportionately impacted communities of African descent. And lastly, I want to say about this work that it really prefigured and profound ways, this activism kind of language that has become a common place and this moment of Koban 19 around racial health disparities. The members of the Black Panther Party and their allies, you know, came up with a very early framing for racial health disparities. But the disparities for them were not about. About disparities and data necessarily. They were about disparities. Resources. So as they talked about sickle cell anemia and advocated for attention to it, the disparities they raise were disparities in research, attention, research resources and fell into tropic resources for study and investigation of the disease. So, you know, it’s sad that, you know, what was past is present once again. But I think that we’ve got a role to play in making a different future. But I just wanted to I think, given your opening comments, sort of suggest that that these are issues that we’ve been having in our community of social researchers for a very long time. So more recently, as you mentioned, I spent a decade studying. The first years, though, the sort of emergence of a new up industry direct to consumer genetic testing. I was interested in the ways that it was being marketed and particularly to African-American communities, and that it also had particular appeal to African-American communities based on the history of those communities and the history of racial slavery. And and I was also interested in the fact that the people that I spoke with very early on, mostly in the US. But to some extent in the UK were making their own what were left to make their own and were also making their own cost risk benefit analysis. Right. And so there is you know, there was people were left to sort of decide for themselves. Is it risky or to participate? And this emergent form of genetic taste testing that might lead to further surveillance. People I talked to was early as the early aughts were already drawing connections to the criminal justice system and where the data might go, drawing connections to other uses outside of the genealogical uses that they intended that it might be used for. Could one, for example, you know, a cheat, you know, get data about one’s health care, you know, health status based on genetic data for Ginny and Virginia, logical purposes and the like. And those concerns coming out of consumers are what brought me to the concept of the social life of DNA and an idea that I think brought me to also want us to imagine a new paradigm for thinking about genetics and ethics together and two to a few things. So for this moment, I think that there is I want to capture for us and bring to the conversation about bioethics that there’s a tradition and black life that really prioritizes the care of the whole person. So if there is something like a black bioethics, it’s not never only about the medical that it it always includes issues of justice and power. Merely mentioned justice. Justice, of course, is one of the core pillars of bioethics as we think about it in a formal sense. To my mind is a moment. It’s long been a moment to push on and really lead with justice the imperative of our bioethics work and to understand that from Nuremberg to, you know, to Belmont to now that the principles, the pillars themselves were not wrong, but that our focus really needs to be not on static principles, but on how we think about them and contemporary, social, technical, political in the context of changes in science and technology and politics and the social world more generally, that I want to offer that we need a sort of braver bioethics that is a paradigm that would go beyond medicine. So I just want to offer two examples, one from Tibet, to help us think through what we’re facing here. So one is from direct to consumer genetic ancestry testing itself formerly, which we sell there early on, did not sit in the space of ancestry alone. Indeed, some of the early testing would provide, you know, 23 and me starts with doing sort of medical predisposition and then goes to and trust ancestry testing. And so the testing and its uses are sitting all together. More recently, we’ve had quite a few controversy, still unresolved and frankly, still unregulated and which direct to consumer genetic communities and third party applications that are created really in the spirit of citizen science, for people to cooperate together have been used by law enforcement officials and the criminal justice system. And so part of what I think that we want to think about is a paradigm or paradigms that really anticipate that things like this were going to happen. I mean, you know, as I said when I was interviewing people in 2002 and 2003, it was somewhat speculative, but on the part of both scientists and laypeople and consumers. But it was not out of the realm of possibility that something like this could happen. And the question becomes, you know, what was and what is the role for? Ethics and for conversations about justice and ethics to be, you know, getting ahead of these kinds of situations. So so I think that, you know, part of how we think about our ethical considerations are really about the individual and what direct to consumer genetic testing really brings to the fore for us is not only that fundamentally we’re all connected, but also that bioethical issues really have to take on, I think in this new moment, a kind of network sensibility or a kind of a sense and understanding that we are sort of in community, that there are things and risks that are better both to that or harm potential harms to individuals, but also potential harms to communities that we should think through. One of the some of the research that’s been most important to me and thinking about this actually has been a Hastings Center report essay by Dana Davis in 2004 in which she talks about communal narratives, about about ethic, about genetics and the fact that if we’re thinking about genetics and genealogy, that more than the individual are always implicated. And so how do we think about the role of bioethics when it’s not in a kind of, you know, sort of liberal individualist framework only? And and how do we think about sort of ethical questions that are not only, as I said, about medical medicine narrowly and not only about doctors and patients and their interactions with clinical researchers and the research subjects, but about a lot of different stakeholders, including known and unknown biological relatives. Government, industry and citizens. So I would love to to sort of take up that conversation and then a little bit worried about ancient DNA. So part of what I trace in my book, The Social Life of DNA, is the early efforts before we get to even decoding of the draft of the human genome to use these technologies as they’re just emerging to answer a kind of long standing historical questions. And in the case of African-Americans, for. For many, it was sort of where are the original homes of African-Americans? And one of the early sites where we see this play out is a cemetery in lower Manhattan called the African Burial Ground. It’s now the African-American Burial Ground National Monument. It was in the 18th century called the Negroes burying ground. And it was a segregated, very burial ground and lower Manhattan. And some of the issues that we saw play out there, I think were kind of touchstones. I think that to be taken up for how we might think about some of the new dynamics that are brought to play by ancient DNA analysis. So, for example, who who gets to decide, you know, whether or not remains can be used to file down a little bit of bone and make that analysis? If we were thinking in the context of Native Americans and of the Native American Graves Protection and Repatriation Act or Nadra, we might say it is the community to, you know, that claims to be related to that person, as was the case with the ancient one, or also known as the kind of man of the in Washington state. And so in the case of the African burial ground, it was the local community that says we don’t know who these people are and we seek to know who how we are related to our ancestors. But it’s our role and we should have a seat at the table and thinking about it and talking about, you know, how this research should be done. Who should do it? What questions should be asked and indeed, what questions perhaps should not be asked of this research. And so given the extraordinary research and technological change in ancient DNA testing, all of these questions become more urgent and more acute. And then there are new questions as we have more and more papers that come out and say, you know, this community thought they were this thing. And now, you know, our research suggests that there may be, you know, a kind of genial and a genetic way should be understood, as does this identity. And so I think there’s responsibility there to think about in the way I think that the bioethics tradition is at best, at best and at its best, brings together stakeholders to think about how we want to proceed in our work and also how we want to proceed with ownership of remains decisions about whether or not remains that are that are actually quite rare. You know, who who should be able to grind a little of those down and do the research? When is it not a good decision to do so? And who gets to decide? Or is it only ever the decision of an individual research researcher, given that we know that the research is going to yield claims about a larger community? When when an. In the past know we might have brought that community to the table and into conversation more downstream. And I think there might be a responsibility now to do that more upstream in the conversation. So I will stop there, having thrown out a few provocations. And I look forward to the cut to the discussion.
[00:24:10] Lily. Thanks, Alondra. Let me follow up on that, that this is a great a great launching point. I also just want to mention that I see that people are raising their hand, using the raising your hand function, but we’re not using that function. So if you have questions, jot them down under the Q and A function. And then Ben will roll those all up and we’ll and we’ll be able to use them in a few minutes. So, Alondra, thank you.
[00:24:36] I was I was very taken by by your book, The Social Life of DNA. And so I want to kind of unpack some of what you said and really drill into it. Just let’s start very simply. What did you mean by the social life of DNA?
[00:24:52] So the social life of DNA is is, you know, two meanings I really was following. What genetic ancestry testing did in the world. So where did it travel?
[00:25:03] And so initially I was interviewing in the research. I was just interviewing people who had done the test and they were, you know, it was a little bit before and after. So how do you feel before the tests? How do you feel after the test? And it became clear to me very early on in my research that what was actually important here and this goes back really to your introduction, you know, your comments about it being narrow was actually not that it wasn’t it was not narrow because it was traveling all over and that people were making all sorts of different uses with the results that I think many of us could not have anticipated. So the sort of step two, you know, I thought I was, you know, European, American or African-American. And I now have learned that I’m inferred to be Scottish or EBOW, you know, was only the very beginning of this whole wide world of circulation and use of those tests. So that’s one of the ways the traveling of the use of people’s tests, the social life of DNA, ancestry, test results. And then the other was, of course, that as you as I was discussing earlier, that kind of spill over in which the ancestry results come to be taken up in the forensic, you know, in the criminal justice system and which ancestry results are used in, you know, medical testing. Indeed, when we think about something like the the the all of us, the precision medicine initiative and all of us enrollment, I mean, some of the strategies there have been to use genetic ancestry testing as a kind of threshold to involve people. So it’s about the ways in which the uses of although they might be very narrow for those of us who were scholars, they kind of travel in the world in ways that are quite seamless. And I think that many of us didn’t anticipate that. And then more recently, for me, the phrase has also really come to take up the data fixation of of of genetics more generally. So part of how this traveling can take place is that, you know, any genetic data, you know, genetic samples can be made into data and that sort of original intent. Does it matter if one can use the data and data sets and lots of other social sites that weren’t originally intended? So it’s really to the social life of DNA is really just sort of take up that whole sort of, you know, all of these movements kind of taking place at once that are really distinctive to the last 10 or 15 years.
[00:27:31] What do you think is it is ethically at stake, given this traveling DNA, that it has such a vibrant social life and shows up in many different contexts? What? Why should bioethics get?
[00:27:44] What are what are the ethics stakes, Silver got to relate it. And what are the ethical stakes not just for scholars, but for for consumers?
[00:27:53] That’s great. So. So I think for bioethics and it’s most nor narrow sense. And so I know that that’s not all bioethics. I mean, I think the stakes are really that you that we have worked and thinking about bioethics as being about doctors and patients, clinical researchers and subjects and kind of biomedicine, persay and not the social life of DNA suggests to us that that very narrow kind of social, the thinking of where the space of genetics and ethics it sits is inadequate for what’s actually happening in the world.
[00:28:26] And so if bioethics is to be relevant and useful, it needs to actually venture that kind of circulation. And how the thinking works of the stakes where consumers are, I think, are are becoming more clear. You know, when we think about something like DJed Match, which is the third party application that I was referencing that was, you know, was before it was sold to a forensic technology company, I’m about three months ago. It was a quite incredible thing. You know, folks could take their data from various different companies. They could upload it to jet match. They could help other people find each other. That kind of sort of ethos or way of doing work is actually very commonplace in genealogical communities. So these kinds of surname’s studies, there’s been all of these kind of fascinating communities around trying to around the project of self and familial discovery and the use of genetics to do that. And I think with consumers and we know from the news reporting that signed up for this third party app, they didn’t anticipate that the criminal justice system was going to be using their data. They signed up to help other genealogists do their work. And so the ethical stakes there are really about not giving people. I mean, it’s not exactly informed consent because, again, as I said, it’s not medicine, but people cannot be making informed decisions about even their consumption and where they want to put their data. If if if, you know, those of us who should have anticipated this can’t tell them that this might be a possible outcome of their participation.
[00:30:10] You’re asking bioethics to expand its scope, to dissipate the additional uses of what starts off to be one purpose and travels. Absolutely.
[00:30:24] You had a wonderful line in that wheel, you had many wonderful lines, but one that really stuck out for me, as you said, direct to consumer genetic tests, give scientific shape to human yearning.
[00:30:36] And I take you to mean to a universal human yearning to understand where one has come from and who one is, as we all tend to define it through geography and culture and history.
[00:30:51] But then you wrote.
[00:30:52] And just a few pages later, that genes are a socially anemic conception of human identity. So it represents and gives scientific shape to human yearning. But it’s an anemic conception of identity. How do you reconcile those those two statements? How do you see that those working together?
[00:31:14] Sure. Yeah. So I think that we know that I that that human relationships and human identity are a kind of big caldron, a big stew of stuff. You know, and as a social scientist, I understand that part of that stew is who we say we are. So, you know, we take our ninety nine dollars, we take our three hundred and forty nine dollars and go to a company, make it. And, you know, it gives us an inference. France, you know, good, bad, right, wrong or indifferent, that we you know, we have purchased you know, our aspiration has brought us there. We paid somebody to tell me who we are and darn it, it’s going to tell me who I am. So there’s that piece of it. But that experience really has nothing to do with how social identity is sort of lived in the world. So I could take a test that gives me an inference of, you know, 100 percent, you know, Indian subcontinent identity. However, if I’m not understood to be that person in the world either because of my, you know, my foodways, my culture, you know, how I look in the world, then that those two things are not, you know, kind of working together. So to say that the genetic peace is socio social is socially anemic is to say two things. So for me, I think unlike some of my colleagues, I do actually think that people’s engagements with direct to consumer genetic testing are socially important.
[00:32:43] And it’s why I spent 10 years of my life studying it. So I don’t disregard it and think that it’s a, you know, insignificant, although I think there’s a lot of critique around what it does and does not tell us. But I think it’s socially anemic in the sense in that identity is about what’s ascribed to someone and also what they aspire, what other people say they are, where you live in society and how your various other identities besides ancestry sort of intersect together to sort of give you a social location, social role, place you in various kinds of hierarchies. So I want to.
[00:33:21] For me, it’s not a paradox. I mean, I it is in fact, it’s a it’s more like a feedback loop. Right. So that all of the sort of historical social locations, kind of people’s intersecting identities and their sense of aspiration for something more, something fuller, something additional is what brings them to the testing experience. And then they get additional data. But that additional data doesn’t necessarily change a lot of other things in their social world. So it’s some it’s a kind of ecology. And and the the the the geneology piece or the genetic pieces is one part of a very wild, wide world.
[00:34:06] We run the risk, I think, of waiting genetics so much more than we wait. Other factors that contribute to who we are.
[00:34:14] And you had a story at the start of the social life of DNA that that illustrated that beautifully, the story of Venture Smith.
[00:34:22] And I thought maybe you could just because we had all this information about his life, historical information about his life that really told us who he was. But no, that wasn’t enough. We’re gonna dig him up and get his genes, too.
[00:34:34] So that was going to add some information. Could you fill in people? I think it’s a really excellent moral tale. So a little bit what I’m referencing.
[00:34:43] So they I should so venture Smith. Thank you for that. Molly was an enslaved man in the 18th century and around what is now East Haddam, Connecticut. He would buy him, purchase his self and his family out of slavery. He’d be he would sort of do the backbreaking work of an enslaved person and then would spend extra time, you know, to the extent that he could saving money. And so he became a free man late in his life. And so he’s important historically for that reason. He’s also important because he’s one he’s the author of or the author working with, you know, an avid abolitionist, kind of immunizes to write a slave narrative about his experience. And his experience goes to the continent of Africa.
[00:35:37] So it’s not, you know, one of the in the genre of slave narratives that are about people born in in North America. He’s actually born. And what we think is contemporary, again, A, he tells us the name of his parents. He tells us about the village that he lived in. He tells us about the Middle Passage journey on a ship that was captains by fairly notorious captain who would become infamous for throwing off enslaved people off of a ship to get the insurance on another ship called the Zong. That’s historically important and well-known. And so both because he had written a story about his life and also because, you know, he’s a really important historical figure for the state of Connecticut. So there’s been a lot of some state genealogy, a lot of history devoted to him, a lot of resources. And we’re over. Unlike many people of African descent in the US, members of his family, because he’s so well known, many of them know each other. So in East Haddam, Connecticut, every fall at a congregational church there, there’s something called a venture Smith Day and members of his family, you know, fly from all over the country to really commemorate their ancestor to lay a wreath. There’s also, you know, there’s often some reading from his his his narrative and the like. So I had been following the venture Smith story. I was teaching at Yale University at the time in East Haddam is just up the road a little bit and was became very interested when his family, who I came to spend some time with, made the decision to allow researchers at you at the University of Connecticut to exhume his body and part to find out where he was from. And so here you have a figure who is a historical figure who about whom we know more than most historical figures of this time, regardless of their historical background. And yet we thought genetics could tell us something more. So in the end, the case fails. They’re not the you know, it might be we might be able to if the family allows it again, be able to analyze his remains and, you know, a few years maybe if the technology gets better. But there weren’t there wasn’t sufficient remains there to to do the investigation that they wanted to do in the end. But I thought that it was a very telling exercise about the I think our overinvestment and genetics and the power of genetics to to tell us who we are.
[00:38:17] Thank you for sharing that.
[00:38:19] You’ve also pointed out that when one gets a genetic result, it’s not only about oneself, it gives enormous information about others. And so in a sense, it is about the collective as well as the individual.
[00:38:32] And I understand that there was great African-American interest in ancestry research pretty early on. For the in in the pursuit of learning about one’s individual historical roots. But I know also that the evidence that’s being provided through these tests can be directed towards collective social and political action. What you called reckons acts of reconciliation in the book. Can you tell us, you know, even though I’m going to ask you what those acts of reconciliation are. But first, what’s the evidence that one? What’s the collective evidence that’s being turned up? And then how is it being used?
[00:39:13] So the collective evidence. I mean, I think one of the how I try to think about the the test results is that beyond the kind of identity peace is that African-Americans and in my case in particular, for a very long time had been saying, you know, the legacy of slavery is not distant. It’s close to me, I think argued, you know, that there are ways in which, you know, life in the US and globally for black people, the forms of structural inequality and racism, the kinds of police police brutality that we people are rightly protesting in the streets today has everything to do with that that particular legacy. And but I think sometimes, you know, for other people who don’t, I think understand the African American perspective or experience seems like something that was long ago. How should this have any bearing on the present whatsoever? Right. So I think we are having we’ve had various societal moments of awakening around that not being true. And this is one of those moments.
[00:40:25] And so I think the tests sort of make it make it closer. Right. I mean, to be able to say whether or not the tests themselves provide this information, which is something else, but to be able to use the test and leverage the test to sort of say I’m, you know, very close to my ancestors from Africa who were brought here as enslaved people. And that’s what you understand. You were kind of royal you to be a kind of distant phenomenon is very close and the implications for it are very close. And thus, I think it can be, to your point, really mobilized it into contemporary politics as opposed to being sort of historical knowledge that sits in the past. These tests are leveraged politically to sort of give life to debates, issues in the contemporary moment, whether or not the tests themselves are reliable.
[00:41:21] Well, we are getting a lot of questions and I’m going to pause in a minute, but I can’t resist just a little more detail on this. It strikes me that when you get these results, you can learn about your patrilineal line.
[00:41:34] And you can learn about your matrilineal line and too often.
[00:41:39] Am I right that African-American results would show your patrilineal lie and an African naturally alive, suggesting what we know happened during periods of slavery around rape and other uses of black bodies?
[00:41:56] So has that been a significant part of what is being determined and how people are thinking about evidence that can be made for reparations, for example, or other forms of reconciliation?
[00:42:10] Sure. So that the published data suggest that for the the the the Y chromosome testing for African-Americans, it’s about 30 percent European Peiffer lineage. And so so for many of the people that I’ve spoken with, I mean, that’s confirming something that they’ve already known. But it’s different to sort of assume that that history of sexual violence and rape that was endemic to slavery and part of actually how it was part of an engine of slavery, frankly, was historically true. It’s another thing to receive an inference that says that you in body that very history and bring it, bring it. So that’s a different kind of psychic reckoning with that past, that violent past. And then, look, I’ll say a little bit about the reparations case, because one of the things that was that one, you know, that I was able to uncover or a cover to me was, you know, people were doing this in the world. So it wasn’t a mystery to them. When I fall, it started to follow the uses of the test. What’s very early on, a class action suit for reparations for slavery. And this is in 2002. So this is before Tanikaze Coats writes his very important essay on the cover of the Atlantic cover story for The Atlantic in 2014. It’s before more recent contemporary necessary conversations about reparations. So these were people who had been longstanding reparations activists and bring a class action suit called Farmer Pullman versus FleetBoston, around twenty one multinational corporations that still exist today. You know, the suit claimed based on proceeds variously that were made through the enslavement of people of African descent here in the United States. And the court, Inish, you know, sort of one of the things the court is trying to Metway is whether or not the eight plaintiffs in the class action suit were the injured parties to whom restitution would be owed in a kind of tort law framing. And the court says, you know, you can’t really demonstrate standing and the law. But the activists and their lawyers go back to the drawing board and decide that they’re going to sort of introduce into the conversation of their appeal brief. They’re direct to consumer genetic testing result. So this is in 2004. But this is very early in the market. This was a time when I believe there were only three or four direct to consumer ancestry testing companies in the United States at all. One of them was family tree DNA. That’s still going strong and I believe was the first in the US and the other was a company that I studied closely called African Ancestry, which is still in existence today. And so, you know, I think what’s fascinating about that case is how quickly you think about, you know, that the genealogical aspirations and the civil or political utility of genealogical aspirations, how quickly that happens as early as 2004 and an appellate court case in Chicago to sort of to make the claim that we do have standing is the descendants of slaves. So this doesn’t mean it’s not successful in the end. In part because all sorts I mean, there’s all sorts of reasons. I mean, genetic ancestry testing is really a operates on the scale of the population. It’s not really actually about the individual, particularly when you’re talking about, well, just more generally. And and so it was also kind of very early days in the science in the industry as well. But really an example of I think of that to go back to being a little bit of what I said in my remarks. I mean, that kind of constant the sort of bioethics of the everyday, but a kind of tradition of bioethics in African-American communities and which there’s always this cost benefit analysis and that the risk of maybe not knowing where one’s data is going might be worth it if one can advance a long standing kind of pursuit for justice.
[00:46:25] Thank you. Ben, I know you’re out there in cyberspace somewhere, and I know you’ve been reading a multitude of questions that have been coming in. So, Ben, do you want to summarize a couple of themes and. Put put it in another question.
[00:46:42] Yeah, absolutely. We’ve had a lively question section, so thank you very much, audience for that. There’s a lot of interest about this provocation. Dr Nelson suggests rant and rave or bioethics, and people are curious. What does that look like for you, Dr Nelson?
[00:46:58] And what does that look like as one, as you said, prioritizes justice? And there’s kind of two threads of this in this research orientation. What do you believe are the most important questions? Bioethicist should be asking the one hand. On the other hand, how might this intersect with how bioethics research is funded?
[00:47:16] Oh, I like to laugh, but I hadn’t thought of that. I’ll be thinking on my feet about the last one more particularly. But these are great questions, so thank you, every one colleague’s friends, for this engagement. So, you know, a braver bioethics part of the answer isn’t the question that Ben laid out, which is about prioritizing justice and being willing to do that. And I for my experience, because I’m not, you know, a philosopher, you know, I right.
[00:47:42] You know, I engage in social theory, but I’m not a philosopher or or. Well, let me not say it that way. I think for me, a braver bioethics is one that is not content to deal with the kind of abstract principles, only that the principles are our marching orders. The principles are not the ethics themselves. And so what does it mean to think? Take things like beneficence and justice and sort of live those out in the world and a very specific contemporary context. And that may mean more protections for some greater access to funding for others in a way that’s not, you know, sort of equal playing field. But that brings resources and justice to people who need them most. So for me, that’s a braver bioethics. It’s also, I think, about getting being willing to stake a claim upstream and research projects and research questions. So not waiting till new technologies are developed and saying, well, we’ve got this technology or we have this new this new capability. You know, how now should we be thinking about it? How is there a way for people who want to engage and the work of bioethics to, you know, pounder of on the table? Demand for ourselves and for others and particularly community stakeholders. A place at the table in the beginning of the research.
[00:49:11] Right. That is willing to say maybe the research should not go forward. So a colleague and science and technology studies named Lincoln Winter who’s who teaches at RPI, has this. You know, he testifies before an LCG congressional committee on the ethical, legal and social implications of nanotechnology in 2004. And, you know, the one of the things he says is that, you know, one of the problems that I see this is this is kind of paraphrasing him is that bioethics never says no. So a braver bioethics for me would also be a bioethics that says that this research should not go forward. It’s much too dangerous and doesn’t wait until it’s well out of the gate to make those decisions. And then for funding, I mean, I think implicated in that is that there’s research that should not be funded, you know, because this is a no. And there is research that should be abundantly funded because it can have maximum benefit to, you know, the least of us. And then having maximum benefit to the least of us have maximum benefit for all of us.
[00:50:22] Thank you so much, Alondra. That was a really wonderful response. Ben, another topic.
[00:50:31] Have we lost better muted Ben.
[00:50:34] Sorry about that. There’s also some questions about regulatory structures around genetic testing. So, you know, folks are wondering how the social life of DNA kind of spilling over neatly constructed silos, how that kind of interacts with how we regulate protecting medical information through hip hop, how that intersects with employment discrimination through Jena. And then also how those kinds of as Millie mentioned, that you have mentioned how my GM DNA is also my sisters and my parents that intersects with things like life insurance, long term care insurance or outside of GM.
[00:51:14] So let’s let’s try to break that down and just start with what what kinds of oversight are there for direct to consumer genetic tests?
[00:51:26] Less than I think people would look less than you think. Less than. And so and this is important as an I specifically in my remarks, to use the language of a startup. I mean, we need to understand that this was a startup industry and that part of the point. Much like many startups was the disruption, the disruption of regulatory framework. So it’s not an accident that we don’t have, you know, almost, let’s see, you know, 15 years, 18 years down the road with this industry sufficient regulatory structure, because in some regards, that was a feature, not a bug. Starting a new industry, you know, to get around, you know, medical. I think regulatory structures, for example. So we certainly have regulation of things like laboratory reagents. There are things about the process of direct to consumer genetics that are regulated like the Clean Air Act that regulates sort of standards and laboratories. But genetic DURET, direct to consumer genetic testing, doesn’t fall under the Genetic Anti Act, the Gene Act of 2008 that’s been mentioned.
[00:52:35] And it falls also out of the you know, it falls through the cracks of something like hip. So there’s really actually not quite there’s not really any protection for people at all. And, you know, as I said, you know, the data can really travel anywhere. And even if the intention was not for the data to be used for medical purposes, if someone wanted to, they could. And but that doesn’t then trigger, you know, hippo regulations. And so I think that music metaphor, I think much like the way that something like the crisis of climate change requires that we think about.
[00:53:18] Know planetary or at scale ways of thinking about regulation coordination, that’s not just about the nation state, because the issue itself is not just about the nation state.
[00:53:29] What I’m trying to suggest here is that the way that genetic data travels in the world really requires not just people who understand themselves, a bioethicist or medical sociologist or sociologist of science like me. But I think, you know all of us in different sectors to think a lot more nimbly about what ethics might mean in this moment. And so this is where excuse me.
[00:53:56] I think that the conversation around genetics, ethics and direct to consumer testing has everything to do with a growing conversation about data, ethics and data, justice for forms of data that have nothing to do with genetics whatsoever. So what I’m you know. So I think what we need to be moving towards is a kind of way of thinking about ethics that that is tied to the medium or the modality of the knowledge rather than the social site in which it originally set.
[00:54:30] Terrific. There was a there was a question that came through I’m asking about the intersection of DTC genetic testing and people with disabilities.
[00:54:40] And so this question asks, how can we think about categories of diseases, disability, race and gender in a more intersectional way?
[00:54:50] Oh, that’s a great question. That’s a penthouse. Thank you for that question. I mean, I think this is another one in which the question that somewhat contains its answer. You know, this intersectional approach is is critically necessary to thinking how about how this kind of testing and the particular risks of the testing as the data circulates differently, bears on on people based on how they’re differently socially located, including privilege or lack thereof, access to resources or lack thereof. And, of course, the I’m so glad that the question of disability was raised because that’s a particularly acute vulnerability with regards to genetic data. So so ancestry data that might reveal information about, you know, medical predisposition or medical condition, that also reveals, therefore, something about a particular disability in the wrong hands is, you know, obviously deeply dangerous. I mean, the medical information more generally that circulates without people’s consent and intent is dangerous. But, of course, the particular vulnerability faced by decent, you know, disabled communities, differently abled people in our communities is is, you know, deeper and more profound. So I would just, you know, underscore, I think with the really fantastic question suggested, is that we indeed need an intersectional approach.
[00:56:25] But the one thing I would say is that there are and thinking about having the intersexual approach, I think it does also matter to one of Milli’s earlier questions, what it is that makes people interested in the first place and the testing. And so so part of that intersectionality, honestly, is also about the particular historical trajectory different from African-Americans than it is, say, for native groups. Different for adoptees differ different from donor conceived children that bring people to a volitional cause or their encounters that are not volitional or voluntary. Encounter with genetics is also worth, I think, considering as part of an intersectional approach.
[00:57:15] Ben, one last question, if there’s still another one out there.
[00:57:19] Oh, sure, yeah. So I think someone asked. There were a few reports before Kova took over all of the news back in 2013 that there is a decrease in sales of DTC DNA testing.
[00:57:35] And they’re wondering if you think that this reflects A on a different kind of orientation towards it or a kind of public interest is cooling off or this kind of industry is maturing. What does what does this mean?
[00:57:48] Have new concerns about privacy, resample, data sharing between, you know, big tech companies and hospitals, kind of giving people cold feet, perhaps finally.
[00:57:59] Very good. All these great questions. Thank you so much. So there is a I think we don’t quite know. So I think all of the things that you brought together in that question, Ben, are all pop passably possibly playing a role here. But I’ll I’ll speak a little bit out of the book project I’m working on now, which is on sort of science and technology policy in the Obama administration. And I’m writing about big projects that the Obama administration and particularly the Office of Science and Technology Policy in that time endeavor.
[00:58:30] So I’ve been very interested in, as I mentioned briefly, the precision medicine initiative and the all of US enrollment, which is the actual project to get a million Americans DNA and, you know, database that can be used for federal research and to do so safely, ethically, and to do so in a way based in part on complicated. You know, I think complicated, but true in some ways. Justice claims over representing for communities of color that are typically underrepresented in this kind of research.
[00:59:04] So one of the things that’s very interesting is that, you know, President Obama announces this new research. And one of his final state of the State of the Union addresses. But it’s not. It’s two more years or so before the actual enrollment into the project begins. And in that interregnum, we get Cambridge Analytica such that in many of the news stories in which people are being interviewed and asked about the rollout of all of us, they’re bringing up, you know, breaches of, you know, tech company data. They’re bringing up Cambridge Analytica, in addition to bringing up the Tuskegee syphilis study and other forms of well-known research abuse.
[00:59:44] And so I do think to the questioners or many questioners, point there is this kind of convergence around concerns about surveillance, about data, about data security, about who one can trust to keep their data secure or intersecting with how we think about genetics. And so I think that there this goes, I think to my bigger point about the questions about genetics are really also questions about data in this moment and about data ethics and data justice. But those in big scare quotes, because I think there’s lots to be said there. So that I think that the decrease in sales might be about market saturation. Lots of folks have done the test, but at this point. But it also might be about concerns about privacy and also these increasingly well known cases in which people’s criminal justice cases, in which people’s data in aggregate is being used by the criminal justice system without their permission.
[01:00:48] Well, it I want to thank you so much, Alondra and the audience. We are now at twelve thirty. I’m afraid that we might be cut off in mid sentence.
[01:00:58] I just want to say that I think it is a beautiful example. This discussion is it is a wonderful example of what the Hastings Center tries to do, which is to recognize that technologies are not just neutral. They’re not just about the technical design of of the technologies. They exist in an in an echo system, so to speak. And they can bring benefits, they can bring harms. They can be used in unanticipated ways. And then it’s important for us is thinking people to anticipate how we can deploy them best and how we can how we can forestall any Uninor unintended negative consequences. This is a deep. This has been a deep dove into one area that you’ve studied for a very long time, very illuminating and really, really helpful. Thank you so much. Really, really fun. It was fun. Thank you.