 Thank you, and thank you, Alex. Thank you panelists. Our second expert panel would discuss eugenics screening and contemporary sequencing technologies. Panelists include Radit Ravitsky, University of Montreal, Alexander Mena Stern, University of Michigan, Joy Boyer, NHGRI, and Lori Irby. Over to you, Camisha. Thank you. So hi everyone and welcome to our second panel. Before I turn things over to the panelists, I wanted to provide some conceptual framework from the last panel to guide our consideration so I assume a little bit here that we may have gained some new members in the audience as well. So in particular, I want to frame the historical and contemporary relationship between eugenics, race, and disability. I think that also kind of came up in the Q&A last panel as well. So I want to mention, as I did in the previous panel, two different ways to understand the term eugenics. One is to see it as a primarily historical phenomenon that is defined by the means it used to pursue its goals of promoting the so-called genetically fit and eliminating the so-called genetically unfit. So it was extremely extreme eugenics was carried out through genocide, but it also sought to control which people in groups were worthy of reproducing, and tried to prevent dysgenic reproduction through forced sterilizations, while also promoting the reproduction of people thought to be fit. The first courses of racial hygiene, racial degeneration and social Darwinism were very popular at the time, it's become common to think that a particular largely discredited view of race was the cause of historical eugenics, and the key feature that made it morally abhorrent. But there is another way to understand eugenics, simply as the idea that social problems have both a biological basis and to some degree, a potential biological remedy. There are bioethicists today that support the idea of liberal eugenics, which they see as a scientific and technological project aimed at human betterment through selection, which works by taking measures to ensure that the humans who do come into existence will be capable of enjoying better lives and of continuing contributing to the betterment of the lives of others. For liberal eugenics, race as a concept is largely absent. It is not racial group membership of parents that determines whether a potential child is selected to come into existence. Instead, it is facts about that child's genome. And here as our panelists will discuss a different social group is targeted for elimination or reproduction, reduction, that is people with disabilities. Now you'll hear about a lot in this panel is the disability critique of genetic screening and sequencing technologies and practices of genetic counseling. This could lead to the impression that whether we label both as eugenics or not we're talking about very different things at the beginning of this century as compared to the beginning of the last century. But so what I want to suggest by contrast is the idea that what all the new eugenics have in common, and what is actually a major problem is that they both exist in a shared and dominant epistemic space centered around the idea of an obsession with heredity. By epistemic space I mean a broadly shared way of knowing and making sense of the world. That's so pervasive that it often goes unnoticed or uninterrogated. As Troy Duster puts it, we have come to see the world through a prism of heredity. This epistemic space I would argue is also the home of the race idea and of scientific racism. This past and present and by other names, those who disavow the use of the term eugenics, share with each other and with race scientists and with animal breeders, a particular modern sensibility that views the natural world and human reproduction as always right for human 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 an invaluable social good necessary to ensure human survival. Again, we see disability, race and eugenics all existing in that space about the importance of heredity and the desire to take control of that for the sort of general good. All right, so that's that's my framing and now let's go to our first panelist who will be Laurie Airby. Thank you and I think this is a nice move from the beginning part of the panel into the second panel I think from history into the present day. It's been such an engaging topic as a challenging one. And I'm happy to be here to kind of help us think it through. So I'm a genetic counselor I spend currently most of my time in genetic counseling research and training. I do want to provide one brief update to my bio because although it's not why I was invited it's an important part of my story that influences my own thinking as related to these topics that we've been discussing today. My interest is that I am an older sibling to an individual with intellectual and physical disability, due to a non inherited chromosome deletion and that has been a, you know, part of my life and a part of the perspective I've brought to the field of genetic counseling. So in my remarks, I want to provide some context around the contemporary genetic counseling definition how we practice how we train genetic counselors, how that is implemented specifically and reproductive genetic counseling. The field has been grappling with the challenging issues that we're discussing with regard to non invasive prenatal screening newborn potential of newborn screening and other emerging technologies, which can provide access to what people might see as life changing information but as it also has implications for families making future reproductive decisions for themselves for future generations and for others in society. And genetic counselors I think are discussed often as being on the front lines of all of these initial conversations when people are being introduced to all the various technologies. And that is true and has been true but it I think is important for us to think about the context in which as these become much more universally accepted. I think that will be less true that genetic counselors will often be on the back end dealing with people who've recently gotten diagnoses but likely won't be the primary people. Initially discussing the offer of the screening test those will have that'll happen likely in primary care and in abstradition's offices and so some of the things that people were talking about in the q amp a that maybe we didn't get to yet last panel around making that we're also thinking beyond genetic counselors to other health care providers as we think about this conversation is really important. And I do think genetic counselors will continue to be in a position to frame policy and to create structures that support informed decisions and also thinking about what that means both on an individual level and a broader societal level. So our contemporary definition of genetic counseling does include language around promoting informed choice, which has that very individual level notion that we've been talking a lot about, and also adaptation to the risk or to the condition or to whatever it is that we're finding in the genome, and that adaptation piece is really central to how we think about ourselves now into training. And we spend a lot of time working with families who have been identified as having genetic difference and thinking about how does that affect your life how do you begin to live with that how do you appreciate the quality of your life. And so genetic counselors are often embedded in those kinds of conversations, at the same time also being asked to be embedded in conversations around well what does this mean in terms of my decisions for the next generation and what I want to do. So I think there are a lot of questions about broader societal population screening. I think Dr. Stern mentioned in the last panel this term non directiveness which has been part of our ethos from fairly early on. And that term, you know, I think does demonstrate the commitment of the field to wanting to help people make individual level choices. The term itself has been debated, I think because it does imply maybe a more passive stance. I prefer now the term that my colleague Layla Jamal has been included in her recent writing, which is more autonomy enhancement, which allows for the recognition that the information we choose to impart and how we choose to present that does have an influence on how people think about these decisions and that we need to do our work in a way that maximizes clients ability to make decisions that are consistent with their own values, and based on relevant information. So the term training does include attention to competencies related to communication and counseling skills, as well as awareness of personal biases and how those might influence counseling. But I would note that there's a need for additional research to identify which methods accomplish this most effectively. And also in practice, I want to express some humility that there that there's a space for the exploration of the interplay of the personal, the familial and the social, and that if we think about that individual space with a client as being even even in a one hour space if we have the luxury of having one hour it's challenging at best to really dive into that exploration in a way that starts to really ask people to think about the social norms in which they've grown up and which society is pushing them towards so I wouldn't say that we shouldn't be doing that work but I'm saying we don't necessarily always have good models for thinking about how do you in a short space really help to begin to disentangle some of the messaging that people are getting outside of the context of genetic counseling. I will close by noting that this is an ongoing conversation in our own field as we grapple with all the things we've been talking about this afternoon, our accreditation standards as training programs require, require us to have disability education for our trainees, but each program addresses this in different ways as was mentioned earlier there are some programs that really have created models for education, others that are doing less and I think there is room for all of us to think about what would be most effective. And I think there's also room to think about beyond training. So, once a student leaves we're all trained as generalists we do that work with individuals and families where we get to know the families in their own context and then also do the reproductive training and then do the genetic counseling work. But when we leave graduate training and we go on to work in the field. Most people who currently work in reproductive spaces, according to our most recent professional status survey, people who are working in those spaces actually spend most of their time only working in reproductive spaces and so don't have ongoing opportunities to talk with families and to meet with families who are living with genetic difference. And it's imperative that we think about how do we continue exposure to that aspect of our life and our work and our advocacy. So that the people who are who are charged with helping people make reproductive decisions, don't become and don't get so siloed that they're not really appreciating the broader perspectives of the community so that's this idea of community engagement and stakeholder engagement that's come up several times I think is really critical to our field. So I will just end by saying that there is a recognition in our field that individual choices exist within or influenced by and also influence the societal norms and pressures, and genetic counselors do have a history of advocacy for individual clients but we also need to stay actively engaged to advance the sort of societal change that can support and celebrate genetic difference. So I'll end there. Thank you. And we can welcome our next panelist, but at Rivetsky. Thank you. I would like to continue with what Laurie started and stay in the prenatal context. A lot of the questions in the q amp a have focused on that. And with all the technologies we have available today from the screening of in vitro embryos, even for common diseases which is upcoming with the polygenic risk scores, and obviously screening fetuses during pregnancy. Some have said that we are in the process of creating a standard or a threshold of entry into society. To meet a certain standard to join the human race. And of course that that is so reminiscent of eugenic ideas that it justifies our conversation today. So to continue with the way Laurie described genetic counseling in the prenatal context. We have been telling ourselves and patients and the funders of genomics research that prenatal testing is not eugenic, because it's about providing information to enhance choice, famous reproductive autonomy. So, first of all, people should not be pressured to use these services. And yet, if you know how many people ask me is prenatal testing obligatory. Why are they asking is it obligatory when it's supposed to be so obviously offered as a choice, because it's integrated into pregnancy care in a way that seems that it seems irresponsible to reject it. And that's a part of the societal message that sort of surrounds this technology. How hard we have to work to ensure everybody knows they have the choice not to even engage in this testing process. And for those who choose to test the screen. How hard do we have to work to make sure that it's not seen as what some clinicians have called a search and destroy mission. It's not about a one way route towards termination. People may want to know to prepare for the birth of a child who might have special needs needs special support. They may want to consider adoption, or they may want to consider termination, but they have multiple options. And then in order to ensure that, you know, counseling, the provision of health care does not engage in unit genetic practices. As Laurie said, we have to make sure it's value neutral provides balanced information and famously non directive, because you're supposed to make your own informed and free choice. So I want to say two words about free and two words about informed. When we talk about informed, and we want to provide balanced information, what does that mean? Is it balance between medical information that highlights the problems your child might have versus lived experience information families sharing how happy they are with raising their children who may have medical issues or disability. What is the right balance there between medical and lived experience or within each of those categories. And again, emphasis on the terminology that we use clinicians talk to pregnant people and to families about higher risk results. The word risk obviously has negative connotations, but our entire clinical world uses it while the disability world would like to us to use the term chance, you have a high chance of this versus that. But there's still this disconnect between the terminology that clinicians are used to using a genetic counselor and disability advocates are trying to introduce. Do we talk about normal fetuses versus abnormal. We now know that the term normal should not be used it conveys way too much societal and value connotations. But what should we use an affected fetus versus atypical fetus in genetics we used to talk about defective genes. Of course we do not ever want to talk about defective human beings. So what do we use a mutation and extra chromosome or genetic difference as Lori tried to teach us. But you can see whatever you look, there are critically important terminology choices to be made, and we are not educated enough as professionals to make these choices responsibly, and to consider all the implications. All the messages that are conveyed when we use the wrong term or an insensitive term. That's about informed now about free. We talk about individual choices. But what about those immense cultural and socio economic pressures surrounding our families. A lot of people tell us I would welcome a child with trisomy 21 into my family happily, but I don't have the societal support. What about school, what about, you know, having a job later in life, my child will not be able to live alone. What happens when I become old, and I cannot care for my child will his siblings have to take care. So the societal, you know, takes a village policy decisions about the resources that we need to dedicate as a society to support families who make these choices. If we don't create those supports, the decision is not free, even if you received your famously balanced information. So it's not an individual choice. It's made in a wider context. And finally, last point. How does all this complexity play out when we consider the distinction between disability and disease. In the context of screening for disease, we think that genomics is about preventing suffering, improving well being. So what is the message to a family screening of fetus with a devastating disease such as Tysax versus a disability that is not a disease such as trisomy 21? And what about types of disease? How do we define a serious disease versus, you know, a mild? Do we even have the terminology again to talk about that? What about a disease where we only genetics only gives us a risk, not a certainty when it's laid on set and we will have decades of healthy life before we get sick. So the complexity of sort of disentangling the conceptual mess of disability, disease, serious, not serious, treatable, not treatable at what cost. Genetic counselors are operating in such a complex landscape that it's almost impossible to do everything right in the context of conceptual challenges and societal challenges. So I'm sorry that this is not a more positive note, but I just wanted to sort of paint this complex and challenging landscape to feed into our conversation. Thank you. Thank you. And our next panelist will be Joy Boyer. Hi. It is such a pleasure to speak with this group today and an honor to be on a panel with Vardit, Kavisha, Lori and Alex. I wanted to build on Vardit's point about the need to really pay attention to the language we use and the social and cultural factors and the power relationships that impact genomics, both its implementation in reproductive settings and also in the design and implementation research itself. It's worth noting that the Human Genome Project, which mapped and sequenced the human genome, like most large technological efforts was ultimately a product of a really complex interaction between scientific, social, cultural and political forces. But unlike earlier large science projects and to the surprise and I've got to say at times consternation of some in the scientific community, when the genome project was ultimately funded by the US Congress, it specifically included a program that was passed to anticipate and address the implications of the science for individuals, communities and society more broadly. This program, which you've heard referred to as LC and that's not LC, it's ELSI for the ethical, legal and social implications of genomics was written into the original funding legislation, and it has something that's somewhat extraordinary which is a congressional mandate to receive 5% of every dollar that's spent on the Human Genome Project would go to support projects that are examining many of the issues that have been raised today. The legacy of eugenics and the ongoing fraught relationships between genomics and reproduction and concepts of disability have been an ongoing focus for LC research. From early projects on eugenics by historians Bill Schneider and Howard Markle to Joan Roth's child's decade spanning research that culminated in the book, The Dream of the Perfect Child. It's included seminal work by Eric Perens and Adrian Ash, a disabilities activist on prenatal testing and disability rights, and more recently work by panelist Alex Stern on forced sterilization, as well as a number of projects that are looking at the impact of noninvasive prenatal genetic testing and IPT on health and reproductive decisions, particularly in marginalized communities. Obviously, there remains much to be done, both in acknowledging the past abuses like eugenics and in identifying and illuminating the social and cultural factors that provided a fertile ground for those abuses. And how they continue to play a role in how genomics is used today, particularly as it's used in reproductive settings. And I'm happy to provide more information on the LC research program, but I think that I will leave it there and turn it over to Alex for the closing panel remarks. Thank you so much. Nice to see you all again. I just want to follow up on the astute comments of my colleagues by adding two thoughts. The first is the provocation that I think it's really time for us to retire the term pseudoscience. It's been around for a long time. It's played a role in serving as a divider between the ugliness of the past and ostensibly the enlightened views of the present. But it is not doing any good work for us at this point anymore, especially if we really are committed to tracing the continuity is with respect to ableism and scientific racism that everyone on this panel is committed to. So let's retire that word and let's figure out what our new language would be. And I very much appreciate Lori's attention to language and thinking about autonomy enhancement in the context of non-directiveness, which leads to my second point in thinking I thought a lot about non-directiveness. It's historical evolution. And on to some extent, it has served as kind of a cop out, let's say, because, you know, in the most cynical sense, you could say the genetic counselors would point to non-directiveness and say, well, I'm being non-directive, I'm being neutral, I'm being objective, I'm just sharing the facts. It is the product of a certain time and place, namely the 70s, the 60s, 70s and 80s, when most genetic counseling was in the reproductive and pediatric domain. Yet things changed by the 90s and into the 21st century with the rise of new types of genetic screening and testing for, for example, BRCA 1 and 2, different forms of cancer, in which, you know, probabilities or the existence of a genetic marker for such conditions actually raise questions, is it ethical to be non-directive in a situation like that? Where a certain health intervention might be the most, the best course of action, in other words, you know, to be a pre-vibrator of breast cancer by pursuing a mastectomy or other types of interventions. So that's another way in which this whole issue of non-directiveness is complicated by the development of the technologies themselves, which is always a moving target, so to speak, in the context of medical genetics because often the policies, the approaches, the regulatory attempts if they exist are kind of often left behind in the dust as the technologies themselves continue to develop. So I will stop there and let Camisha lead us on. Great, thank you so much. And we have a lot of interesting questions in the chat. So let's start with this one. How can genetics professionals help reconcile the need to protect reproductive freedoms with the need to advocate for vulnerable populations? I'm thinking specifically of state bans on abortion based on genetic prenatal test findings. So how do we offer choices to people and full information when we have these other timeline restrictions for people and what they can or can't do about a pregnancy that are likely to become more common? Well, isn't that the $50 million question? Yeah, I think this is a real challenge and I'm afraid I'm not going to offer great solutions, but I think it feels very poignant, particularly in this particular time. And I know my colleagues who work in reproductive genetics in particular are really actively grappling with what does it mean to be attempting to offer opportunities for personal engagement with your genetic risk or genetic chance or genetic difference. In a space where there may not be much, you may not have many options in terms of acting on that information. And I think I don't have good responses other than I think you can still tell people, I think the goal is just to help people understand and to begin to think about how they move forward, given the societal context in which they live. And again, sort of leaning into some level that adaptation response of like what do we do to help help this individual client in this moment, given what their personal constraints are. At the same time, I think we have a professional obligation to be continuing to work towards societal change. So I sort of ended with the end of my, so there's what can you do in this moment with this client, but what do we do as a profession to try to create spaces both to celebrate difference and to make room for difference and to make room for options. So that people can, can, can build the lives that they want for their children and their families. Camisha, I want to use this opportunity to point out that we cannot burden individuals, whether they're genetic counselors or prospective parents with solving problems that we created the systemic level as a society because of policies that do not support autonomy while we are constantly helping people that everything we're doing is about autonomy. So if, if the legal context changes and pregnancy termination becomes so limited that genetic counseling happens at the wrong time, genetic counselors cannot be expected to solve that problem. Things like individual families cannot be expected to be responsible with their individual choices for either enhancing genetic diversity in society or eliminating all forms of human suffering. So when I look today at what it means to be pregnant with all these technologies that are offered or sometimes you feel pushed upon you, it became almost impossible to do things right. So as a pregnant person, it's almost like you will be blamed for something if you reject testing, or you do not act on results you're already an irresponsible parent before you even had a baby. If you act upon it, you're not respectful respectful of diversity and why won't you welcome a child with special needs. It's almost like the technology is cornering you as an individual decision maker so that no matter what you do, you're socially not respecting some values. And again, this is so so dramatically the other extreme than what we said we were doing with all of this technology which is to enhance choice to give information in order to promote autonomy. So we started on a journey to promote autonomy and we ended up trapping people from both directions. So I'm this is just a desperate call to stop blaming individuals, whether professionals or patients for systemic issues that we created ourselves. I'll be charitable to the question, ask her and say that I think the question was more about what how challenging is it to balance these sort of things as you're doing your work, rather than a sense that you have a particular duty to solve a solving problem that's that's not of your own making but you know how does that how does that make your life more complicated as a genetic counselor. I think if we're charitable to the question ask her. And were there any other people who want to respond to that one. And so, so trying to. So there's a lot of questions about the kinds of stuff that already just mentioned in terms of like big social problems. I'll try to find a few that that take it down a little bit. So what is the current training for genetic counselors for how they're talking with patients when it comes to genetic literacy and history of communities, especially those who have untrustful experiences with practitioners. I can speak at a broad level and then a sort of more micro level because it's the micro level that I know the best so, as I mentioned briefly in my comments originally, there are broad standards that say that genetic counseling programs have to address this on a base, you know we have to teach students self awareness, we have to help them recognize their own biases, we have to teach them some of the history of the disability that eugenics and disability and we have to give them exposure. We have to teach them counseling and communication skills to begin to work with a patient, a client on their own individual level. But every program does this very differently. So I can speak a little bit to how how we do that so we, we, we have a very strong emphasis in our own program on starting from the patient, starting from the patient's perspective and we spend a lot of time emphasizing counseling and really like how do you begin, how do you ask those probing questions to understand where your client is coming from, and to build your information and your, and I think as Becca mentioned earlier in the panel, using language that mirrors the language they're using and recognizes the experiences they come in with. And we have, we have classes on sort of helping think about how you communicate at a level that is understandable to everyone but then to tailor that to where people need to go and what information needs to happen. We also have courses that are that in embedded and integrated throughout some of our introductory courses we talk about the history of our profession and and ableism and disability so that is beginning to be integrated throughout. And as our approach we also have, we have our students to weekly one on one supervision where they are really asked and challenged just like let's listen to what you said with this client on this recording. And let's challenge how you approached it and how the client took that in and think about how you could have done that differently. That really helps them grow those skills and that happens throughout so there's constant there's that sort of constant one on one supervision and rethinking. Great, thank you. Um, so trying to trying to manage many a question here. Um, so I guess one that's again takes things maybe away from your individual practices as genetic counselors. There was a question about there's actually a couple questions around this idea but here's here's one newborn screening authorization bill in Congress is in Congress. Currently, it includes provisions that allow the storage and unrestricted use because of repeal of human subjects, research designations on samples taken from newborns. I'm sure some persons interested to know the panelists thoughts on the bill and ideas about how current federal laws could allow or disallow the misuse of mass collection of every newborn in America. And I should say, I would connect this to an earlier question as well. I was pointing to histories of data collection on various populations, indigenous populations, non right populations, and the sort of misuses of that data and sort of profit that is made scientifically and for researchers on that sort of data so do you do have this concern about how this individual this sort of practice that that people are choosing individually generates this kind of database of information and how that might be used. I'm not a policy expert so maybe others can also weigh in but I can say that this I think this question really well captures this tension between the need for scientific data to if we're talking about equitable genomic information. We need scientific information that captures captures conditions across across our society across populations and so that requires broad based participation which is we all know as researchers is very difficult to get at the same level. When you remove the consent model, and you're you have blanket introduction of everybody just automatically in that that raises lots of concerns around trust with particularly marginalized communities have historically been not well treated in the research world and so I, I think this is it's a complicated. It's a very complicated and a very good at astute question. I've heard that there's there's a tension here between public health benefit, especially when we realize that medical research and genomics research in the future will depend on enormous databases and research methodologies that depend on machine learning and artificial intelligence for moving into that era, and we will need enormous amounts of data in order to do this well, and this research will benefit definitely thousands and hundreds of thousands of patients. So you have all this benefit on one hand and then enormous risks to trust and to privacy on the on the other. Policymaking is an intricate dance of balancing these these risks but we have to remember that, you know, we're genetically unique. And when you start crossing different types of medical information it's not going to be difficult to identify individuals, even if samples are anonymized. There are real risks here to privacy throughout the life of all those individuals where samples are stored. Now, I just want to use this opportunity to add another layer to this concern about privacy. Because what about all those fetuses that have had an IPT and were carried to term. What if we start doing whole genome sequencing through an IPT during pregnancy and babies are just born with their entire what I call genome exposed, even though we're trying not to test minors, unless there's a clear medical need during childhood. What about embryos that have been screened and then implanted and then carried to term. So I think a lot of babies will be born with a lot known about them already in the coming years. You add newborn screening to that and the whole notion of, you know, the right to an open future my right to decide whether to test what to test when I become an adult. We may be seeing all of that, you know, become a thing of the past and have to come to terms with the fact that we walk around with our again genomes exposed without us ever having consented to that. How do we manage all of that at a policy level that that's the big challenge of the future. And I'll add to that because I think it's such an important point. Not only do we have to think about the privacy implications and the risk to the, or not just risk the idea of the, the disappearance of the open future because it is just it just will become something that we all potentially just know. I think there's also the potential since that all that information may be derived at the beginning of one's life. We need structures to help make sure that at the very least there's benefit to the individual and where it's sort of time appropriate across development and we don't currently have those structures to make sure that information that was gained when you were in utero is now relevant to you when you're 30 but that you actually still have access to that and absolutely if we're going to have that world we need to build structures that at least realistic to people and those don't exist right now. I'll just add as the historian in the group that of course there is this, you know, unpleasant backdrop of the misuse and the harm done to a range of different communities. It wasn't primarily a genetics study, you know, we know about the Tuskegee syphilis study, and you know the early history of the human genome project in itself was embroiled with native communities that you know felt that the collection methods themselves were kind of colonial piracy and a lot of folks have written about this and in very poignant ways and I know that many course corrections have been done and there's much more awareness. Nonetheless, you know I still think that that hasn't completely gone away and that's why we need to the stakeholders are so important engaging the different communities are important, but also on their terms and what it means to them because all too often. The kind of biomedical or expert viewpoint is solidified in one way that doesn't allow for the kind of input communication and trust that would be needed and I know there are many folks working on this and there was a comment in the, in the q amp a about that Alondra Nelson is doing around an AI Bill of Rights and you know that obviously would intersect with exactly what your Vardit was talking about in terms of the exposed genome especially once those are turned into algorithmic probabilities etc etc we already live in that world. Yeah, and I would, I would add to that the importance of trust, as Laurie brought it up, and you know a foundation of trust is acknowledging past abuses. And I think that's part of what we're doing today, but I think genomics as a community needs to be much more aware of those past abuses, and how that is being carried forward in some ways inadvertently. I think it's very important that we're always conscious of those factors and the impact that that's had particularly on communities who have been misused or marginalized in the past. Thank you all for that. So, I think there's two questions that I can kind of put together. The first was, how can the research community listen to the Down syndrome community communities requests to not be screened out of existence. So, another question that I've lost says that as it stands, the pervasiveness of NIPT will slowly but surely lead to screening particular kinds of people out of existence. And again, this, I guess, suppose depends on whether this really spreads across the world or not. But, but so, so, so namely those with intellectual disabilities, they say see Iceland. So some bioethicists are willing to allow that to happen since it would be the result of many individual choices rather than government policy. So can you please discuss whether that distinction is morally relevant. So, so, so, so two questions are centering around this idea of screening out of existence, and, and how we should think about this action as, as committed through individual choices. So the first is we just published a paper about the global emergence of NIPT, which is already available in over 60 countries, it's going to be a multi billion, it's already a multi billion dollar market globally. So that was left it is all over the world and it's being used mostly privately, which of course exacerbates gaps in terms of access to this information. And then it is also implemented in countries that have various types of abortion legislation, which means that in some cases, it promotes, you know, unsafe illegal access to abortion, not to mention sex, non medical sex selection in other countries. So the global implementation of NIPT raises many issues, some of them related to genetics and some to others. When the person that acid bioethicists are willing to allow it, bioethics, just like genetic counseling, just like the entire enterprise of genetic and genomics research has been about promoting well being and enhancing autonomy. So we're going back to the point that having a societal impact by banning options for individuals or by pushing individuals towards certain choices is not in line with the ethos of either genomics or bioethics. As I think the answer to the issues of supporting marginalized communities, supporting enhancing equity, allowing a society that is truly respectful of diversity and tolerant of any choice that families would like to make based on their own cultural religious personal values, that kind of world that we want to see cannot rest on the shoulders of individuals who now have to make certain choices in order to make that world possible. This responsibility rests on the social shoulders of policy that creates a space, a social space that allows any choice that gives the resources for any choice. So, you know, as individuals, we can be political activists. We can put pressure on our governments to dedicate resources to supporting children and families and creating access to safe and legal abortion for those who need it. We can be activists to influence policy, but the solution to these problems has to be at a policy level and cannot be carried by families one by one or by professionals one by one. I made that point before, but I really think this is the critical point here in terms of making autonomy real and not just lip service to an entire industry and an entire enterprise that could become fundamentally eugenic. Yeah, and I'll just, I'll reiterate that I think that because that point can't be made enough that I think the social structure is really key here. We can ensure that genetic counseling, whether that's being provided by genetic counselors or others is being done in such a way that it really does allow individuals opportunity to understand the possibilities of quality of life to understand the ways in which having a child with Down syndrome or any other potential thing that we might be screening for can still fit within the values within your picture of a family, but that rests on the, the idea that society will support that that there are resources available to make that lived future possible. And so both things certainly we have the ability to change what happens in an individual level practice so that there are, there is the space to allow that to happen but the social structure needs to exist to support that. Any other thoughts there. Okay. Let's say one other question was about or another pair of questions maybe was about what we do with polygenic traits where there are both risks and protective functions. And in your examples were given of seal or sickle cell in, in relation to the protection against diseases like cholera and malaria. Can be sure are you asking in the context of testing adults testing embryos. Yes, it's sorry that it is in the context of prenatal testing or embryo testing. Yeah, because because wondering if we buy it by selecting against polygenic traits that also have productive functions, whether that will will do damage in some kind of larger sense. So there were questions just about genetic counseling, I would be giving them to you. You can also ask each other questions. All the questions in the Q&A about polygenic risk court screening of embryos and it's important to point out that at this point in time, the bioethics community and the clinical community are speaking in one voice that it is scientifically premature and therefore ethically irresponsible to offer this to prospective parents. We don't know enough. It's not ready for implementation. And the benefits do not outweigh the risks. So that's a simple answer for once. We have an answer regarding the embryo context for adults, very different situation because people can make their choice their own individual choices. And I'd love to hear what Lori has to say about how generally counselors cope with this right now. But obviously the more the genetic information is complex and the more knowing carries risks and benefits, the more careful we have to be about offering a service. And when it's offered to patients, we have to be sure we're not doing more harm than good, as always, as in any other medical intervention. And I think that the general sense is that this is not ready for primetime. Yeah, I think the place where this is happening clinically now is largely in the cancer space for adults sort of thinking about getting that information. And I think genetic counselors tend to handle that right now in the way that we handle lots of other uncertain information is helping people begin to think about you really sort of shift into individual behavior change counseling mode of like what is important to you in terms of your risk for developing cancer. Maybe we're giving you a slightly increased risk, but what does that actually mean in terms of what you want to do with your life and how that matters to you in terms of your cancer screening, your cancer treatment, wherever you are. But I agree with you, Vardit. We are not seeing this implemented in lots of other places clinically and we would universally, at the moment, it's not ready for primetime elsewhere and it's questionable. In terms of the other piece of that question, Kamisha, around sort of the sickle cell example of how do you help, I don't know if there was a question around how do you help an individual sort of weigh those, the benefits, the potential benefits versus the potential risks of a particular variant on an individual level or whether we're talking about a population level. I wasn't sure what the question was. My guess would be population level, just interpreting the question, but we are actually out of time. So, I mean, it's clear that this has really, this is really enlivened people with a lot of really interesting questions, some of which, as Vardit has been consistently reminding us are really at a different scope than what can be sort of handled in thinking about how genetic counseling can be less ableist and more supportive and actually increase autonomy rather than funneling people towards certain socially suggested decisions that may be mandated. So anyway, thank you so much and I believe we'll have Chris back here for reclosing remarks, but thank you so much to all our panelists. So I want to thank our panelists, I want to thank our moderators, I want to thank our audience today. This has been an incredibly rich discussion. And I want to particularly from the context of genetics and genomics ability and disability emerging and existing technologies. I want to underscore that we will continue to have these conversations, and that for all of our audience members, we see all of your questions we have not been able to answer all of them, but we are working on ways to further engage. We will be further engaging in a very specific, very central way at the same time by having a conference on October 6 and 7 on the theme of irreducible subjects, disability and genomics in the past, present and future, in which we will continue to discuss many of the topics brought up here today by our panelists and by our audience. And there is a call for paper for papers as well and we can put all of that information in the chat about the conference, as well as for the open call for papers and presentations to be one of our featured speakers. And this is a conference on disability genetics and genomics that I'm also co-chairing with with Michael Rembus, so we can have many of the extensions of many of these conversations today then as well. One of the things that I wanted to also talk about is just in general, there's been a lot of discussion about ethics and a lot of discussion about justice in the context of these genetics and genomics discussions. And just be clear that I think it's really important in all of these discussions and in the course of all these decisions that our ethics is ethical and that these decisions are also tied to very central notions of justice. And I think one of the things that has been brought up a number of times and I think correctly by Vardit is to say that what we really need is we need structural changes in many aspects of society in order to make disability less stigmatizing and more accessible and acceptable. And I think that's an incredibly powerful notion because at root we have as our fundamental task to really think about these discussions about autonomy and choice about making a world that is more accessible and more acceptable for individuals with disabilities. And this is something where I think language is extraordinarily important and intertwined with action, but it is also action. So it's not simply language, but also how languages tied to actions themselves. So I would also say too, to be even a bit more metaphysical that structural change is important and a really important facet of all our debates, but society and the structures which inhabit them are also made up of individuals. So this is also carried out on the level of the individual as well. So with that quandary and with that question I will leave you to have a good rest of the day and thank you again to our panelists and our moderators and our audiences. And I very much thank all of our engagement and for this rich discussion today. Thank you.