 Good afternoon, everyone. I am Eric Green, Director of the National Human Genome Research Institute, or NHGRI at the U.S. National Institutes of Health. Welcome to today's roundtable, which is organized by the NHGRI History of Genomics program in conjunction with our Office of Communications. This event is an extension of the symposium on the history of eugenics and scientific racism that NHGRI hosted in 2021. The conversations that emerged from that 2021 symposium illustrated the need for further discussions about rapidly advancing genomic technologies and the concerns that they raise related to the legacies of eugenics, particularly in the context of genetic counseling. For today's roundtable, we have assembled a group of internationally recognized scholars as well as experts from our own institute, all leaders in these complex areas. For more than 30 years, NHGRI has funded research about the ethical, legal, and social implications of genomics research. Indeed, the genomics community is well aware of the broad societal effects that the study of human genomes can and does have. As an example, you may have seen earlier this week that four prominent genomics researchers were named to the hundred most influential people in 2022 by Time Magazine. These four researchers led the generation of the first truly complete sequence of the human genome, no gaps from telomere to telomere of each human chromosome. This top 100 list includes artists, political figures, tech innovators and others, people who are in the news and who shape household conversations, and now a group of genome scientists is among them. This honor very much reflects the fact that the public profile of genomics is ever rising. At the same time, we as researchers have a responsibility to be mindful of the impact that our scientific advances may have on the world and how people understand and apply new genomic information to their own lives. We are now regularly witnessing life changing clinical applications of genomics for many people and populations for providing a diagnosis for a previously unknown condition to making cancer treatment more exact to enabling more individualized therapies for a range of conditions. Today, we are focusing on the genomic technologies that enable noninvasive prenatal genetic testing. Accurate and timely clinical results of genetic conditions make for more informed decision making and greater autonomy in prenatal care and reproductive choice. And needless to say, many, many aspects of reproductive choice are actively being discussed and debated in the news on the streets, in living rooms and within legislative chambers right now. These two are critically important discussions. Today, for the sake of time and so that we can dive deeper into one aspect of these complex issues, we will concentrate on the increasingly prevalent question of choice when it comes to genome sequencing of newborns and specifically how this new capability falls within a historic framework. Now genome sequencing of newborns is beginning to become routine in some parts of the world and such interventions give parents and caregivers more information much earlier than a generation ago, enabling them to plan better for their child's future. In this context, when so much can be known at the time that so much is still unknown, we have a duty to communicate diagnostic results, not only in a way that is ethically consistent, but as that is also just. Genomic information and diagnostic tools are never truly neutral when applied to humans. And as with those ideas in mind that on behalf of NHGRI we are honored to host today's conversation, helping to advance public engagement on these issues. It is my hope that such events will transform how scientific institutions such as ours, working with subject matter experts communications professionals and community members can convene these and other sensitive and enormously important conversations. And with that as a background, I'm going to now turn the program over to the NHGRI's historian and co-lead of our history of genomics program, Dr. Christopher Donahue, who will give some brief introductory remarks and then introduce the panelists for today's event. Thank you for joining and enjoy the rest of this round here. Chris. Thank you Eric. Good afternoon. My name is Christopher Donahue and I'm the historian of the National Human Genome Research Institute, where I also co-lead the Office of Communications History of Genomics Program. I want to thank our expert panelists and moderators, as well as everyone in the Institute who made this roundtable a reality, whether by promoting the event through social media, providing AV support, developing striking graphics for our digital web spaces, or by managing the very complex logistics that are the omnipresent features of events in the zoom era. I would also like to acknowledge each of our registered audience members here today, who are engaging with the NHGRI on this immensely important topic, does genetic and genomic screening keep open the door to eugenics. This roundtable will be composed of two conversations, one of which is more historical, and one of which is more tied to the present day. Contemporary concerns around the history of eugenics, genetic counseling, screening and sequencing technologies. I expect that there will be considerable productive overlap between the two sessions. Each session will be moderated, will begin with panelists' comments and discussion, and will open for audience questions. As Eric rightly notes, the NHGRI has an essential role in this conversation. As the NHGRI historian, I of course want to note that without the Human Genome Project, we would not be having these conversations. That initiative achieved at revolutionary advances in mapping and sequencing, in many ways elucidating the inner workings of health and well-being. Those tremendous advances come with the weight of history, past missteps, and in retrospect, times when the genetics and genomics community could have done more to address the persistence of eugenics, ableism and scientific racism, and simplistic notions of condition and cure. I'm also speaking specifically to the popular belief that genetic inheritance is a major shaper, quote unquote, of human society. For example, that our DNA determines occupational and educational outcomes. And I'm speaking to of the desire to encroach and to control the incidence of health and disease through in human populations through various means. This is the belief that quote unquote enhancement and quote unquote improvement of human health is possible through genetics is often subtly and not so subtly reflected in scientific language, both in policies and in research. It is after all included even in the current NIH mission statement, which as I quote, it is to enhance life, enhance health, lengthen life and reduce illness and disability. And of course, we want to enhance life, enhance health, lengthen life and the quality of life, and to reduce pain and illness. And one of the question we will interrogate today is, does this and other language and wouldn't cause harm for people with disabilities. Many human geneticists until the start of the human genome project, and in some cases after supported various forms of eugenics and routinely used to humanizing language describe individuals with intellectual and other disabilities. One of the most misunderstood transformations of eugenics was how after the Second World War, geneticists, ethicists and others use such phrases as so called quote genetic duty unquote and relied upon the enormous stigma and fear surrounding inherited conditions to argue that it was better for those with those conditions to not have children. Mapping and sequencing technologies have made various kinds of disabilities not only quantifiable but rapidly identifiable at cost effective scale. New born sequencing to its proponents seeks to identify the quote cumulative burden unquote of a vast range of genetic conditions. But do they represent a burden to those that have them. The scholars Dorothy Roberts and Camisha Russell and others have argued screening and sequencing technologies have revived some racist ideologies where disability functions as a new form of quote unquote, irresponsibility where individuals are stigmatized for having children with genetic conditions, a stigma which extends to the children themselves. And because of historical and present day disparities of wealth and status directly caused by scientific and structural racism and disparities in health care access. The weight of this quote unquote, irresponsibility is most felt by the historically and presently marginalized. It is thus imperative that we continue the difficult and vital work of moving beyond simplistic ideas of health and disease diagnosis and cure, as well as ability and disability. Given the lessons of the past, and the continued progress of clinical applications of genomics. The new process of progress of clinical applications of genomics must also bring with it, a renewed commitment to equity and inclusion. This is an inherent aspect of the practice of responsible science. Genomics must continually address historical and presently ableism, let's continue to combat scientific and structural racism, heteronormativity and queerphobia, and it continue to support reproductive autonomy, particularly now. As Eric said, genomic technologies are never neutral when applied, and history shows that we must take care to underscore that allure of objectivity sometimes allows us to defend the impermissible with the best and some of the worst of intentions. History provides many such examples, and you will hear them today. This dialogue between ethics and justice in the context of genetics and genomics is certainly on the minds of our panelists, and I look forward to their thoughts on this very important topic. I also encourage all of our audience members to think critically about the panel discussions and to engage substantively through questions and comments during the Q&A sessions. Confronting difficult histories and complex ethics will help us all advance equity and transparency as an institute, as a scientific campus, and as a wider community, so that we can ensure that genomics is a science for all. It is now my honor to introduce the first panel on the historical discussion of eugenics and genetic testing and screening. Panelists are Rebecca Muller, a postdoctoral fellow at the University of Pennsylvania, Michael Rembus, director of the Center for Disability Studies and an associate professor in the Department of History at the State University of New York at Buffalo. I'm Rebecca Russell, who is an associate professor in the Department of Philosophy at the University of Oregon, and myself. The panel will be moderated by Alexander Mena Stern, who is the Carol Smith Rosenberg Collegiate Professor of American Culture, History and Women's Studies at the University of Michigan. Over to you, Alex. Thank you very much. Thank you so much for that introduction. I'm honored to be part of this panel today. But what I'd like to do is start with some comments that relate to the history of eugenics, medical genetics and genetic counseling. I want to start off by focusing on a earlier period that that's often overlooked in discussions, and that's namely the 1940s to the 1980s. It didn't even extend up until the 1990s with the rise of the Human Genome Project, and the LC program which came into being at that time. So let's talk about some background in relation to the history of eugenics. We know that in the United States and indeed across the globe, the period from the 1900s to the 1940s was the height of organized eugenics. This was when organizations such as the American Eugenics Society and the Human Betterment Foundation had robust memberships and played a strong advocacy role and PR role in promoting eugenics around the country. This is also the period in which scientific racism was at the very heart of the eugenics program and influenced a range of policies and practices. Just to review, eugenics had a profound impact on American society over these decades. We can look at the 1924 Immigration Act, which dramatically restricted immigrants with a quota system coming from parts of Europe, as well as other parts of the world, most notably Asia. Also from 1907 to 1937, 32 states passed eugenics sterilization laws, mandating the sterilization of the quote unfit, such that by the 1960s over 60,000 people had been subjected to compulsory sterilization, most of them in state institutions across the country. At the same time, marriage laws were passed during these decades, and those laws were both anti-miscegenation laws, which prohibited marriages between whites and people of color, and laws that are less well known, but they were laws restricting the marriage of quote unquote normal people with those seen as having mental defects or disabilities of different sorts. It's pretty striking to think back and to realize that those laws were on the books until the 1960s and 70s in the United States. They really didn't start to be changed, dismantled, repealed until the civil rights movements and the other rights movements that emerged in that period, many of which relied heavily on the equal protection clauses of the 14th Amendment. So you might think of Loving versus Virginia, the Supreme Court decision in 1967, which overturned Virginia's 1924 anti-miscegenation marriage act, or California in 1979, which repealed finally its eugenics sterilization law, a state in which more than 20,000 people had been sterilized, according to both disability and racist ideas. At the same time, the American Eugenics Society actually did not fold until the 1970s, so it was around for a long time. So there's that time period, and so if we think of the emergence of genetic counseling, which really comes to the fore in the 1940s, it makes sense that genetic counseling in its first iteration emerged in the context of a pretty still robust eugenics movement. We can look back at practitioners such as Sheldon Reed, who was based at the Dite Institute in Minnesota. When he started doing genetic counseling and he helped coin the term, he did refer to it as a eugenic type of social work. He later revised that and jettisoned the eugenics association. But for those first decades, genetic counseling and eugenic directiveness were often one in the same. And this speaks to what Chris was saying about the use of terms such as burden or genetic duty that was commonplace among genetic counselors such as Sheldon Reed, Nash Herndon, even James Neal, who actually rejected the eugenics records office records for the University of Michigan, because he decided that they were too unscientific. But nonetheless, this was an era in which ideas about genetic duty held sway, and it was also very much an era of doctor knows best and paternalistic medicine. And that is the context in which the first generation of genetic counselors operated. And what they did on the one hand was they would often meet with middle class white families and give them rational advice about inheritance and reproduction. With one hand, they'd be doing that and with the other hand, for example, Sheldon Reed was supporting the continued sterilization of those identified as having mental defects in the Faribault home for the feeble minded in Minnesota. Continuing on and kind of tracing this history, we do see a dramatic change in the 1960s and 70s, and that aligns with the dismantling of some of the key policies and practices that eugenics had congealed in the US in the decades prior. And what happened in the 60s and 70s is that with the women took over, as I like to say it. And, you know, it's kind of surprising where did the first genetic counseling program emerge. It was at Sarah Lawrence College in New York, and it was by it was led the charge was led by a woman named Melissa Richter, who was very committed to ideas of reproductive autonomy and reproductive choice. And so we see glimmers of where we are today in genetic counseling there, however, much of the eugenic baggage was still in place. And that's why I'm very interested in focusing on this period, especially in the from the 1970s and 1980s, which was a period of intense contestation around the extent to which eugenics would spill over into the new genetic counseling and the extent to which it would be rejected. An example of that is the term non-directiveness. That term is coined by genetic counselors by the second generation of women genetic counselors as a, you know, and seized upon as a direct repudiation of the directiveness of eugenics that had been behind sterilization laws, for example. However, the biases continue and where we see the biases continue is very notably in the area of around disability and the ableism that was a constant among this first generation of genetic counselors. And these have lingered and they're lingering to the present and that's one of the reasons that we're having this conversation today. So many of the issues that we're grappling with right now are issues that were very much they were bubbling up in the 70s in particular, when for example the Hastings Institute was founded. They were very concerned with these questions around the ethics and the ethics and the just uses of genetic technologies. Some of the questions they grappled with were are women being subtly pressured in their reproductive decisions to have only normal children and who is deciding who is normal. At the same time the field was very much white and middle class and it's been very hard for genetic counseling to diversify to become more inclusive. Many programs have tried very hard and some are making great progress. But nonetheless, it is a field that has been defined by a certain demographic profile. And we are still very much in an era where there are tensions between models of bioethics and models of justice bioethics has tended to focus on autonomy and choice, and sometimes straddles that you know a utilitarian purpose and an individualistic model. Genetic counseling in the 70s and 80s was not founded with an eye towards thinking about justice or structural health inequalities. And if we want to shift it to that today we have to break out of some of the limitations of the bioethical container of autonomy alone. And of course now in 2020 is we're in an era in which reproductive and genetic technologies are much more commercialized, and there's a lot of consumer uptake and interest in these technologies for a range of different reasons. Some people think that means eugenics is not really relevant, because it's a matter of purchasing, you know, a direct to consumer test, or these are decisions that people are making. And that is not really the case when we think about the implications of reproductive decisions and the dissemination and the stratification of genetic knowledge for particular communities. For example, I know we'll be talking more later in the in the roundtable today about the implications of NIPT, which the down syndrome community has understandably been quite concerned about, even coining terms such as do not screen us out of existence. So I think it's important to keep these historical patterns in mind as we trace these fraught connections between eugenics, medical genetics and genetic counseling till today. And I just like to close on a upbeat note, which is to mention two genetic counseling programs that are really taking on some of these challenges in the current moment. One is a genetic counseling program that I studied in depth in my book telling Jean's a story of genetic counseling in America. And that's the program at Brandeis University, which was founded by Judith tipsis in 1992, with a explicitly disability focus. This came out of her own personal experience and has been a hallmark of the program where it has attempted from the very beginning to have an inclusive holistic approach to thinking about disability, the quality of life, reproductive choice and families. And more recently, they're the Stanford program also is interested in highlighting disability. And I quote from their web page where they say to their applicants we're looking for applicants who want to partner with us to do our part in dismantling system systemic and structural racism in the field of genetic counseling. And I just like to add to that that one of the ways in which this these kinds of biases and structural inequities play out is on the back of disability and disability frameworks and that has been kind of a hallmark of the eugenics movement. So if you're going to find eugenics and medical and genetics and genetic counseling, you always need to look for where the disability prejudices where the ableism is and how it is organized and how it is playing out. So with that, I will close my comments, and I will ask the other panelists to make their remarks, and then we will move on to q amp a from the audience and we very much look forward to engaging with you. So why don't you come on in and we can start with Rebecca Mueller, if you like or Michael Rembus is on the screen so why don't we start with Michael. Hello, can can everyone hear me. Thank you. Thank you Alex for that wonderful introduction and thank you to Christopher and Eric as well. And everyone at the NHGRI for putting this panel together. I was thinking about how I would best use my, my brief time here that I have to introduce some thoughts about the history of eugenics and its relationship to genetic testing screening. In more contemporary times, and I thought we do that by actually taking a little bit of time to talk about one of the main kind of pillars of eugenics which was eugenic education. When we talk about eugenics and history of eugenics. I think about eugenics sterilization immigration restriction restrictions on marriage, you know, state and federal laws that were that prohibited people from engaging in various relationships and pursuing other interests in life. One of the other main pillars of eugenics early 20th century genics was education was educating people about eugenics. And in this sense, eugenics infiltrated popular culture in many different ways during the first half of the 20th century eugenics was became part of some of the most prestigious biology programs in terms of research and education, it became part of growing interest in what was called home economics at the time, it even became part of biology biology courses and history courses, social studies and civics courses. So eugenics, you know, as a way of thinking about people and about difference and about ability and disability became part of this broader, these broader conversations during the early 20th century. And I think that that's really important to keep in mind because we often think that eugenics ended when various laws were repealed or replaced or no longer used but I think eugenics persists in popular culture in ways that people think about everything from what was called at the time mate selection to forming other types of relationships and I think that those, those ideas and those concerns are rooted in ableist notions of, of well being ableist notions of development, ableist notions of disability and ability, you know this idea that there is a very narrowly defined normal, and that we have to achieve that through various means in society. And so we can do that in part by thinking about marriage and reproduction and other, you know, other aspects of, of living. And so I think it's really important to keep that in mind to think about that when we talk about whether or not we're quote, keeping the door open to eugenics through genetic testing. And I know I have to wrap up but, but one of the, I think, benefits of the disability rights movement and disability studies has been to think about how building what has been called a social fund of knowledge, created by disabled people and their allies in, in, in combating those more ableist notions of, of well being and of normality come into play when we think about, about, you know, various forms of reproduction and, and, and existence born generally. So I'll stop there I know I'm over time. Thank you. Thank you so much Michael. Now I'll ask Rebecca to join us and to offer some comments. I think you can see and hear me now. I'm so pleased that this is that I'm being able to participate in this today and that we have the opportunity to, to discuss these matters. I also really appreciate that Michael kind of named wrapping Ginsburg's notion of a sort of social fund of knowledge that can really enhance collective understandings of disability, because my research is very much in that vein so as noted I'm a historian of medicine, but also a genetic counselor, and I also have cystic fibrosis myself. So my personal and professional experiences kind of intersect with some of these questions in a variety of ways. I've been working on history and ethnography of cystic fibrosis communities, and this type of disability history has really become vital to how I think about the work of genetic counseling. As a genetic counselor, I was of course trained to think really carefully about how to convey genetic diagnoses to patients, yet immersing myself in CF media in interviews, and in lay conferences has really highlighted the ways in which the kind of thumbnail descriptions of genetic diseases that tend to circulate impact the people living with the conditions. So CF like so many diseases is highly variable, and it has evolved tremendously with enhanced therapy, and yet so many of the people with CF who I interviewed still narrated their lives with respect to media and life expectancy, and shared these assumptions made by other people that they would die young. And so I have found that these CF communities play a really critical role by offering people with CF alternate representations of what is possible with a condition, and a condition that was really long described as kind of a pediatric disease, even after it began to affect many adults who survived. So CF communities also sometimes facilitate really frank discussions about what it means to have a limited life expectancy, which brings into relief, the ways in which longevity underlies sort of normal, normative ideas of a good life, and the social structures, things like retirement funds that are predicated on longevity so there's kind of a particular temporality to some versions of ableism. So anyways in teaching genetic counseling students I really try to juxtapose these more nuanced disease representations that are authored by members of the affected communities with things like carrier screening brochures, utilitarian studies of screening which reveal the sort of public health rationale for such programs, and the different processes by which screening programs have been introduced over the years. And with the other panelists I think it's really critical that we draw out the connections and divergences between eugenics of the past and genetics today. And then we really develop a vocabulary to think about these things so for example in teaching genetic counseling students, I literally have a bank of terms you know things like the social model of disability. The logical imperatives twice told tales, the fallacy of race based medicine that students need to integrate into their understanding of our field. And while that's far from a solution, I think it is a starting place for conversation and reflection. So thank you so much. Thank you so much Rebecca, I'll invite Camisha to the screen to offer some comments. Hi, thank you Alex. Yeah, so, and thanks also to my fellow panelists. Before we move to the Q&A period which is after this. I'd like to take a moment to consider what eugenics was and is. And so what I'm going to do, while I do this I'm going to reference an extended work defending liberal eugenics. Called from from chance to choice genetics and justice by bioethicists Alan Buchanan, Dan Brock, Norman Daniels and Daniel Wickler. The thing about this book and other work like it is that it concedes right off that right off the bat that parents employing contemporary genetic technologies to determine what kind of children to have, where that typically means children without disabilities is in fact eugenics. So they agree that this sort of control over reproduction is what eugenics means. What you argue against though is the idea that eugenics is an inherently bad thing. So, so then their task becomes distinguishing between the eugenics of the first half of the 20th century, and contemporary practices. They do know that it wasn't just Nazi Germany where eugenics ideas ideas flourished, and that in fact before the two World Wars eugenics was truly a transnational modernist philosophy. Any number of diverse eugenic movements around the globe, often with different goals beliefs and proposed policies, even in the US. Alone eugenics wasn't a single movement but a broad coalition of groups promoting overlapping yet diverse scientific social and political agendas, including scientists, socialists sexual reformers immigrant radicals physicians and popularizer popular popularizers. And so you can have Brock Daniels and Wichler identify three core tenants shared by most eugenicists of the early 20th century. One is a concern about degeneration, which is understood either as a consequence of modern social processes, interfering with natural selection a social Darwinist natural selection by rescuing and nurturing the unfit, the so called unfit. As a result of race mixing, as Alex mentioned the products of the products of race mixing the human products of it were thought to be inferior to either of the pure races, from which they came and there are no pure races but that's a whole other thing. So the second part the second thing they identify is a belief in the heritability of a variety of not merely physical but behavioral traits like talents temperaments proclivities and dispositions. And then the third thing they identify is the belief that social problems had both a biological basis, and to some degree, a potential biological remedy, such that production was seen by all eugenicists as an act with social consequences, rather than a private matter. So they go on to argue that this last one this concern for human betterment through selection, that is by taking measures to ensure that the humans do come in that do come into existence will be capable of enjoying better lives and of contributing to the betterment of the lives of others. They take that to be an exceptional an unacceptable aim right that so that they conclude that much of the bad reputation of eugenics is traceable to attributes that we have that a future eugenics program could avoid. Right, so, so they, they, for the first way that they kind of do this they kind of try to differentiate from the past and what a future one could do is by pointing to the pseudoscience in their words, on which the old eugenics was based and to the bigotry racism and class prejudices, which infuse that old racism. So on their account, the eugenics movement was in this respect a creature of its time. Right, and then they also argue against things like coercion and forced sterilization. So that sets their view of kind of what the old eugenics was and how it could be different. Again, under still a title of eugenics which they think is accurate to to what is going on today as well just liberal version. So, by contrast, my suggestion is that eugenics eugenics past and present share with each other, and with race scientists of the past, and with animal breeders, a particular modern sensibility, one that views the natural world and human production as always ripe for intervention in the name of industry efficiency productivity, and ultimately perfect ability. In this context and today, eugenics emerge as those believers in the power of science and technology, who perceive clear and present dangers to humanity on the horizon, and are thus driven to convince others that taking control of human nature, mental and physical is a valuable invaluable social good necessary to ensure human survival. So ultimately, but ultimately, unfortunately, with a great deal of scientific knowledge and technological resources concentrated in the hands of authorities and expert practitioners, even to the extent that eugenics defines the general public of the truth of their convictions, and get people to voluntarily choose this get parents to voluntarily choose these kinds of interventions. These parents and people can only make choices about reproduction by seeking out experts. And there's a social expectation that individual parents rather than society as a whole are responsible for children, especially if those children are seen as an extra burden, again that language of burden. And there's also the idea that good parents should use genetic technologies to make sure they have children with all the sort of best opportunities. So I think the prevalence of all these ideas and this reliance on experts means that that it's not going it's never going to be sort of completely non coercive in the way that we think and that the ideas but that are in between past and present eugenics are really crucial in how we think about what eugenics is, whether like, like the bioethicist I mentioned, we want to actually call it liberal eugenics, or whether we actually try to call it something different than eugenics. That's it, that's it for me. Thanks. Great. Thank you so much, Camisha and thanks to all of the panelists. We have about 20 minutes for Q&A and we actually have a good number of questions. I think I'll start with a question that connects to one of the points that Rebecca was making, which is about the role of language and the importance of language and communicating to different communities. This person asks any thoughts on the language used in biomedical research to describe different abilities, especially terms like impaired and normal. How can basic research be more inclusive and how different models abilities are studied and reported and you've talked about that specifically in the genetic counseling context. If you could elaborate further on this and if the other panelists have something to add it seems like the language is quite important as language language can often serve as labels language can stigmatize language can clarify but language can also confuse. So we know the power of language and particularly with genetics where language can get quite technical and also can be opaque. So Rebecca if you want to start off on that answering that question that would be fantastic. Absolutely. I think one of the sort of critical aspects of educating clinicians in this area is to sort of go through the historical changes in these words to see that there's sort of a constant cycle of introducing new vocabulary that often then actually takes on the stigma of the term that was discarded and that's kind of the challenging and ongoing process. And as clinicians, I think we generally work to get a sense of how our patients or families are thinking in the words that they're using to try to come up with some common ground. It's more challenging when you're designing a study right and you're trying to define something a little bit removed from individuals with the condition who maybe you have a specimen but not the person and I think that really speaks to the need to involve these communities, both parents who are dealing with care of children and also individuals who you know maybe surviving longer and have a sense of the best ways to describe the condition or impairments at hand. And I think there's a real distinction that I've seen in what's emphasized and people living with disorders, and the way that they're kind of summarized in medical articles or in kind of especially like commercialized screening brochures, we're very select, and not necessarily all that informative set of information is is is communicated and so I think we need early and broad involvement by sort of the other stakeholders before proceeding. I think it can also be really useful to to highlight the fact that that within what is considered normal there's actually quite a range as well. So I think there's often this sort of idea that, okay, here's normal and it's written everyone, like most people are in it, and then here's abnormal and I think that recognizing how broad the range of different abilities and you know aspects of of human genotype and phenotype are within the range of people who are considered normal right so that we don't just sort of imagine there's this clear cut line between the normal and the abnormal that we can just easily determine and work from what we think about language to from the perspective of disability history and disability studies. You know we, we, we try to interrogate and critique this idea of disability always being portrayed as deficit or loss or defect or disorder and so trying to think about language to use that that doesn't necessarily employ those terms or those perspectives and thinks more about, you know, how people are living with various conditions. And also to think about futurity to think about, you know, the notion that there might be a future, you know often disability kind of forestalls conversations about a future because people don't know how to envision life as a disabled person and so changing our language in that sense, as well I think is is really, really important. If I if I actually just might add. And this is just building on precisely what what Mike and the other panelists have been discussing is, I think there's a real sense that a lot of the language using a clinical context to describe disability is really basically thinking, focusing on disability is something which is medicalized and which needs to be cured. And this is the so called medical model. And I think if you really look at individuals and communities who are living with disability who that they really reject many of these characterizations and that the reality for individuals in these communities is so much more than clinical definitions and then clinical perceptions, really, really, really acknowledge. So I think one of the ways in which we have an opportunity for dialogue is really thinking about the medical community, the medical community and disability communities who have very differing views differences of perception, and these differences in perception fuel a lot of the ableism that is very apparent in many aspects of research and medical practice and I think it's a significant issue and probably the central issue in many ways for for bioethics as well. Thank you so much Chris. We have a range of questions related to in IPT, which I think we'll be taking up more in a more focused fashion in the next segment and the round table. Here's a question from Rodrigo Paris or Tega, who asks what should geneticists do to avoid their research is used by white supremacists to justify violence against marginalized communities and that perpetuates racism. And I just like to note that we've really seen a shift among genetics organizations where the American Society for Human Genetics issued a statement against the misuse of certain types of genetic tests being misused by white nationalists to declare white purity and so on. And there's also been a reckoning within genetic organizations in talking about wording in terms of the names that are bestowed upon certain awards and honorifics and we know there's been a rash of changes in terms of denaming and renaming buildings. So, clearly the genetics community is aware of this and there is a has been a pretty, you know, noticeable response, including a panel such as this and the event that was held in December, whether that actually connects effectively to these questions about the continuity, you know, continuous ableism of eugenics and repro genetic technologies I think is the question that we're grappling with still today. So, I don't know if anyone else would like to reflect on that question of how you know genetics is misused particularly by extremists, and how to potentially combat that. I can say just generally I would say just generally that I think it's really imperative that that scientists are very active and very vocal, saying that these that these studies are being misused and explaining why, because one of the issues with the various kinds of white supremacy, be it the humanitarian movements or the alt right is that they have they there is that if you don't respond to the narrative that may control the narrative. And if you and if you seed, and if you basically give them ground to control the narrative, then in many ways, the lack of response by by scientists and scientific institutions is seen as a kind of passive form of ascent. And I think that that perception is extraordinarily problematic because there really needs to be a clear statement that the use of these studies for supremacist for supremacist ends is scientifically incorrect and deeply immoral and against the scientific institutions and I think scientists need to be very upfront and saying that they need to be very upfront and saying that even if it makes no no difference I think it's an ethical application more than anything else because we cannot have these communities essentially controlling the narrative and and spinning out the studies and and truly on the scientific and immoral ways and so that would be my comment on it. Thank you does anyone else want to comment on that or should I move on to another question. I just briefly add that I think that this is why events like this are so important and I think that public public history and and other forms of public engagement are really important. I spoke a little bit about it. Education might in my brief comment to me and eugenics were eugenicists were were were, you know, really keen and active in in in popularizing a lot of their beliefs and so I think we need to, you know, think about how we as historians scholars and ethicists want to make, you know, all the things that we know and think more accessible to a wider, a wider audience. If I just make one more slight point I absolutely agree with Mike. I also think that when you have these white supremacist communities misrepresenting studies this is also why confronting the history of eugenics and scientific races and then their present day manifestation is really critical for the, for the scientific community. Absolutely. Thank you so much so shifting gears a little bit we have two questions that I'm going to kind of, I'm going to combine and they really look they're asking about that moment of interface between a genetic counselor, a genetic health professional and the patient or let's the client the way that we want to call that dyad as a moment of potential education and clarification in which, let's say, ideally the language could be de eugenicized. The point of contact could be as supportive and as holistic as possible. And going back and looking at the history which is something that I have done I have seen the ways in which expectations were laid on the shoulders of couples that would come into genetic and it would make the rational choice to do the right thing, you know, looking forward in terms of their family. And I'm wondering if you have any thoughts on that at that point of encounter as a critical space in which, in which these dynamics can can be improved and particularly we might shift from the medical model to more of a social model in terms of thinking of quality of life, human ability and so on. And I see Rebecca nodding so I'm going to maybe ask you to speak first. Sure, well I think as people struggle with this over a career, lots of different ways of sort of handling and learning from the counter have come about. So, we've kind of already critiqued today the sort of heavily medicalized way of defining conditions, and the fact that there is this sort of privileging of a normal state. And I think that starting with whatever the condition is, the ways in which, inevitably, individuals regardless of their genetic differences have a lot of overlap and things in common. So starting there with what parents are expecting and hoping for, and the ways in which a condition actually, you know, child can still play, or whatever the expectations are, and starting with some of those things rather than immediately getting to sort of listing out the different pathophysiology that is so often the first thing that is kind of mentioned and emphasized in medical models and again this is an interaction. So, using it as a point of education as a clinician to learn about what families are really hoping for and expecting for, and what they're, what they're coming in with in terms of their own experiences with disability and maybe even people with this particular condition that you're diagnosing given that many things run in families and that's a critical point of learning for the clinician to think about where to follow the patient and what kind of information to provide. Thank you. Any additional comments in response to that question. Seeing none I there was another question about from Rosemary Thompson about thinking about regulation. This is a big one that our word is we know as a very, it's a potent word when we talked about genetic technologies. Her question was in particular about kind of the level and the type of regulations that perhaps should be in place that are not in place when it comes to genetic screening technologies. And we know that there's been more of a kind of ad hoc or even state by state approach to this so I don't know if you have any thoughts on, especially thinking the broader sense of ethics in relation to regulation. How might it work how should it work. And just say that I think it's presently really hard to imagine because genetics is unfolding in such a sort of commercial way that even in less loaded areas where you know certain genes are better for managing cancer risk and other ones are sort of very minimally known. I think we're really struggling as clinicians, just at that level of having results that we don't even really feel confident in that are being sort of broadly offered. And so I think that this is a bigger question in genetics, then just this more challenging question of the prenatal space, and you know whether we have sort of committees that decide which conditions are sort of worth introducing in the prenatal space. So I think that's one of the reasons that we're kind of all sitting here and thinking it is really challenging because there's so little of a model presently. There's certainly professional societies that I think can weigh in and develop, you know, some guidance, you know I'm thinking about embryo implantation and just even what number is appropriate, and the ways in which professional clinicians have been able to create some semblance of a standard and I think that that is more likely to gain some traction and be feasible in the current space, given the heavy role of commercial testing but there too. You're then just opening and closing right different doors people can always go to different different clinics so I think it's a wonderful and really challenging question I'd love to hear what other people have to say. People just offer and I don't know how helpful this will be and I don't think it answers the question but this when I think about this I think about access and equity and justice and, and, you know, the kind of class implications of these conversations. And whether people are going to have equal access to various technologies moving forward. And then of course, at least in my mind brings to brings brings to mind conversations about universal healthcare and other sorts of things that are larger than the conversation that we're having here so I don't know how deeply I would want to get into that. Well, I guess you'll have to organize another round table or table on that Chris. In our last two minutes I want to respond to two questions that have come up. The first is from Helen Mueller talking about H. J. Mueller's 1932 speech to the eugenics society in which he condemned it. And I do think it's really important to highlight that there were scientists, including geneticists anthropologists and others who harshly criticized eugenics criticize behind eugenics sterilization, starting in the 1930s. And they have played a role in kind of setting the groundwork for some of the real pushback the more intense pushback that came in the 50s and 60s so I don't think that history is being ignored. And it is addressed in some scholarly works that I'd be happy to tell you more about the second is a much bigger kind of nut to crack so to speak and it, the question is about the relationship between ableism and racism and the ways in which disability injustice perpetuates and informs racism. I've done extensive work on that in the context of California showing how sterilization laws that were framed through disability enabled and perpetuated anti Mexican racism. I also would mention the work of Rena Hogarth, and she's looked at 19th century anti black racism in the context of reconstruction, particularly, and demonstrated how that help set the stage for the rise of America's own particular version of eugenics with its own forms of racism and xenophobia. So I think that, you know, both keeping those as discrete discrete categories and seeing how they informed each other, we would not have had such racist eugenics in the US without the ableism, which served as its bedrock, and there was been a lot of back and forth in those dynamics. So I see I did get the last word, I think we are going to stop now and wrap up we very much hope to see you back for the second part of the, this round table in is it 15 minutes Chris. It's 10 minutes in 10 minutes so 10 minutes get your coffee and we'll see you back here at 210 Eastern time. Thank you so much.