 Rosemary Garland Thompson is Professor Emerita of English and Bioethics, Emory University. She is a senior advisor and fellow at the Hastings Center, where she is also Chief Project Advisor for the Art of Flourishing, Conversations on Disability and Technology, a project supported by the National Endowment for the Humanities. Her talk is entitled, How I Became Disabled. How I Became Disabled. I'm Rosemary Garland-Thompson, pictured here, and I'm a pale-skinned, middle-aged woman with silver, chin-length, straight hair, reddish lipstick, and I'm wearing really cool, round black glasses frames and a black shirt. I'm pictured here in a professional headshot that was taken in the living room of my apartment in San Francisco, and this is a description of myself, which is a good access practice for us here today and always. Part one, How I Became Disabled. I like to say that I became disabled at school. This is true, not in the way most people would expect, though. No tumbling off the playground equipment or medical event during class. I became disabled through what I call the primal scene of disabled social life. I grew up in a pre-ADA era, and so I encountered this scene intensely when I was in elementary school and secondary school. Everyone with a disability will recognize this scene. Somebody asks us, either with their words or their eyes, that relentless question, what's wrong with you? As a school child, and even as a young adult with no access to disability consciousness or community, my awkward answer was always some version of I was born this way. Because I was born with six fingers altogether and one quite short arm, I learned to get through the world with the body that I had from the beginning. Such a misfit between body and world can be an occasion for resourcefulness. Because all of us will experience disability sometime in our lives, it's a great advantage to start early, as many disabled people know. Not that it felt that way growing up, though. Although I certainly recognize that the world was built for what I call the fully-fingered, thought-for-my-body, I never experienced a sense of losing capacity, and I adapted actually quite easily, engaging with the world in my preferred way and developing practical workarounds for the life demands that my body didn't meet. My well-intentioned family had no experience, of course, or even consciousness when I was growing up about disability. Many people with congenital disabilities are born into non-disabled families who are completely unprepared for us. The provincial medical system of my childhood offered no sure cause for my unusual shape. Throughout my life, phrases that range from the poetic to the pathological have been applied to my unusual body. Terms like freak of nature, funny-looking kid, thyroid deficiency, birth anomaly, sporadic limb deficiency. The most generic and wince-worthy for me was the term birth defect. From charity telethons to alcohol consumption admonitions to FDA warnings, and grim descriptions of environmental hazards, the anchoring threat seems always to be birth defects. I was born that way was my weak claim at that time to disability identity and self-respect preservation as a person who was bereft of any community, affirmative language, or positive identity narratives. I quietly hated all of this, and I developed the range of what I call dignity-maintenance strategies all on my own. I had no other way of understanding my body and its place in the social world until I went to graduate school where I became disabled at school in the second sense in another way. Until I learned about disability studies and culture and community, when I was a graduate student in the English department at Brandeis University in the late 1980s, I had no idea, no consciousness, feminist, disabled, or political, or anything of what it meant to be disabled, that there was a history and a culture and a politics of disability. Up until that point, I had been in the disability closet, but since other people with disabilities have entered my worlds where I live and I work, I've found community and I've developed a very sturdy disability identity. In other words, I've learned to be disabled, even though I've had the same body throughout my whole life. Now, I'm likely to begin one of these awkward encounters, one of these interrogations with something like, I have a disability and I complete that with and I need these accommodations. This is a claim to inclusion and it's a right to access resources. My story here of becoming disabled in school offers them two lessons. First, to be liberated into a disability consciousness that restores our dignity, we need to be legible to others as people with disabilities who have rights and obligations equal to non-disabled citizens. And second, we have equal claims to moral personhood. The process of identifying as disabled and being identified as disabled is a dynamic enterprise that we must navigate consciously and perpetually. Even though the physical form of my arms and hands is quite unusual and noticeable, I must claim disability identity to place myself in community and to request accommodations. Now even though I've had a lifetime of practice living in a familiar and a pretty stable body, I still perpetually renew my relationship with the expectations of my social and technological environment. I need new accommodations frequently. I need to be refreshed, if you will. I need them in the workplace because my disability has become very salient, not in appearance but in function. And that's because the mounting demand for digital manipulation of computers in our jobs has made me increasingly disabled. Every day, digital demands mount, even though the form and the fundamental function of my body hasn't changed since I was a child. The workplace environment is what disables me on a daily basis. The account I must now give of myself is not I was born this way, but rather I require new and creative disability accommodations to do my job. Because the concept of equal access is legally mandated under civil rights legislation, becoming disabled in this way includes, rather than excludes me from the workplace, which is my access route to economic resources, what we all need as people with disabilities. Part two, how I became a bioethicist. Becoming disabled through the social situations and by the designed and built environments has offered me an opportunity to take up the enterprise called bioethics or healthcare ethics. Working with disability culture, knowledge and communities that expanded the scope of my work from being an English teacher to becoming a disability bioethicist. Now even though I knew that the medical approach to disability always hovered around cultural understandings to disability, I had to really bird myself to face what was a tidal wave of pathology that came my way when I started speaking to and with people in healthcare and medicine. As a bioethicist with a disability, I discovered that I'm an unusual hybrid of a patient and an expert. In professional healthcare settings, I'm often taken to be a patient, which takes me back somewhat. My disability category and treatment history has become much more salient in bioethics than it ever was in the humanities and cultural studies. Being on both sides this way of the medical gaze has nonetheless been a productive perspective as it has for many of my colleagues who work in bioethics and also identify as disabled. My task is to bring social, cultural and political perspectives about disability and living with disabilities into conversations and considerations about medical treatment and technology development that will eventually shape biomedical policy and practice. As an academic healthcare ethicist or bioethicist, I write articles, I give presentations, and I speak with colleagues, like many of you today in our audience, about bioethical topics that affect people with disabilities. In the broadest sense, then, my job is to remind everyone that disability is everywhere once we know how to look for it. Our modern culture tells us that disability is an exception when, in fact, it's the rule of human life. Disabilities and living with our disabilities are fundamental to what the philosopher Hannah Arendt calls the human condition. The CDC tells us that one in four Americans have a disability, totaling 61 million Americans with disabilities. According to the United Nations Convention on the Rights with Disabilities, about 10% of people worldwide live with disabilities. Indeed, people with disabilities are the largest minority group in the United States and a growing constituency as American demography changes and new disability categories emerge such as neurodiversity, psychiatric disabilities, disabilities of aging, and learning disabilities. The prevalence, indeed, the universality of disability is a surprise, however, to almost everyone, including many people who have disabled family members or who qualify as disabled themselves. Indeed, all of us will become disabled if we live long enough. The human life cycle and our encounters with the environment as we move through life transform our bodies and our minds in ways that medicine and society call disabilities. These human variations that we think of as disabilities and illness come to all of us over a lifetime. They shape our bodies, our lives, our families, and our communities quite literally. Because we live in, because we are made of flesh and blood and bone, we're vulnerable in our lives to the encounters with the world around us that will shape and reshape our bodies as we move through life and world in the process that we think of as development or a lived life. Some of us begin life with disabilities that we acquire in the womb or even before. Our individual genetic shaping gives some of us our distinctive disabilities, manifest or forthcoming, even as embryos. As we move through life, our encounters with what human communities make imprint our bodies with what we call disabilities. Our human interactions with tools, machines, vehicles, buildings, activities, sports, wars, food, and perhaps most partially our cars, our guns, and our computers make our lives work and make our lives possible, but they also disable us as we use them. Disabilities then in here in human development, everyone for example becomes late life deafened or at least partially blind. The demands of our joints and the skills of life building take us to disability eventually. Viruses, bacteria, and the very substance of ourselves bring the disabilities that medical science considers diseases, some of which will end our lives. The diversity of our minds in a world that values a particular mode of cognition contours our lives, our work, and our relationships. We might say then that disability is a record written on the body of flesh encountering world. Perhaps most significant for our sense of who we are is that becoming disabled shapes our own senses of ourselves and how we are understood by others. Moving into disability shifts us from membership in the comfortable category of the normal and the ordinary into an unfamiliar terrain of existence that can be profoundly unsettling. Disability is in our body minds and it's activated through the way we necessarily undertake our lives. Nonetheless, when disability comes our way, we are much more prepared now than we ever could have been when I was growing up before the Americans with Disabilities Act and the laws that led up to it. Everything changed for people with disabilities starting in the 1960s. As a broad disability rights movement encouraged legislation and policy that gradually desegregated the institutions and the spaces that have kept disabled people out and barred us from exercising the privileges and the obligations of full citizenship, education, transportation, public space, and the workplace, steadily transformed so that people with disabilities came out of the hospitals of the asylums, private homes, and special schools into a rebuilt and reorganized world. This integration of people with disabilities has been slowest to come, perhaps, in the world of medical science and health care practice, which is often committed to eliminating disability from the world more than to accommodating disability. Along with many other colleagues who work in health care and health care ethics, my work aims to bring the perspectives of disability culture, integration, and ethics into awareness and practice in health care. Practitioners of disability bioethics, like me, bring forward new perspectives and knowledge about such topics as genetic editing, development and use of genetic testing, life-ending practices such as euthanasia and abortion, diagnostic and prognosis narratives, equity and access in health care, and most recently disability cultural competence. It's an enterprise that may serve not only disabled people, but all of us. As a bioethicist, I have made what I call the case for conserving disability as a resource rather than a liability to be protected. Conserving rather than eliminating disability could, I've suggested, offer the human community an unbidden opportunity for unexpected resourcefulness or even flourishing that disability can present in some lives. Accepting the people with disabilities who enter our lives as unexpected and often unwelcome gifts may actually be an ancillary benefit of disability conservation. But the primary benefit of conserving disability would be valuing the inevitable growing into disability that I've suggested is inherent in the human condition. To support what I call the ethical aim of conserving disability, my colleague, Lisa Isioni and I, among many others, have put forward a call for a more developed curriculum and health care education on disability cultural competence. And I'm showing here a slide of Lisa Isioni, who is a professor of medicine at Harvard Medical School. And there's a link in this slide. I also have a picture here of Lisa to a lecture that Lisa will be giving before too awfully long at the Radcliffe Institute. So I wanted to have this slide so people would have the opportunity to tuning into this lecture. Lisa is the lead author of two really important studies that suggest that doctors and health care workers need to know more about how their patients live with disabilities, what accommodations that we as patients might need and how to provide those accommodations and how to include accessible technologies for disabled people. This is a very important initiative. Disability cultural competence, then, I want to suggest, is a structural knowledge enterprise that's designed to implement justice and autonomy in health care practice. Disability cultural competence aims to provide practical toolkit that identifies and develops supports for people living with disabilities as we are. The fact that all people will acquire or experience disability over a lifetime means that disability cultural competence, then, is an essential life skill for all, all health care workers, active patients and potential patients, which means everyone participating in the health care system. My point here is that everyone needs to know how to be disabled. Learning to be disabled requires more than receiving medical treatment and rehabilitation. Becoming disabled requires adjusting to new functioning, new appearance and new social status. It requires learning how to flourish and to live effectively as a person with disabilities, not just a person trying to become non-disabled. In other words, disability cultural competence is a skill set everyone needs to know to navigate life and to implement the promises and the obligations of an egalitarian democratic society like ours. Becoming disabled is what we need to move from isolation to community, from ignorance to knowledge, about who we are, from shame to pride, and from exclusion to access. Thank you. Elizabeth Dietz is a PhD candidate in the Center for Biology and Society at Arizona State University and a current fellow at the Harvard Kennedy School's program on science, technology and society. Their talk is entitled, informed consent, capacity and what we do with genomic information. Hi, my name is Liz Dietz. I'm at Arizona State University and also the Harvard Kennedy School's program on science and technology studies. And today I'm here to talk to you about informed consent, capacity and what we do with genomic information. So if you found yourself doomscrolling the internet this morning and you clicked yes to share your data with a website or maybe to make the annoying pop up questions go away, you engaged in the notice and consent model of regulating the internet. So this image came up on some random article I opened while I was making the slide. I think it might have been about the new king and the corgis. I'm not exactly sure where my browsing history went on that one. If you entered a store or your workplace and you saw a generic notice like this one that you were being surveilled in many states in the US, you too would have consented to surveillance by remaining. If you participated in a research study that was authorized through an institutional review board. So this is the one from my own study, you likely signed a consent form affirming at least that you were adequately informed and had made a free and voluntary choice to participate. If you went if you underwent genetic counseling, like the very thoughtful phone call depicted in this ad where you engaged in dialogue about the nature of your genetic information and then made decisions about it you experienced informed consent. And if you've had surgery and you had really one of those really good doctors who took the time to do a lot of careful explaining and asked you to articulate the procedure back to them to make sure you really understood what was about to happen. You also participated in informed consent. In this talk, I'll argue that informed consent is quotidian and ubiquitous that it is every day and everywhere, not necessarily as a form you sign or as a box you check though certainly it sometimes is. But as a pattern of thought that structures a whole host of important social relationships, it makes certain things possible and limits others. Today, I'll argue that it's important to think about informed consent as something that is as important as it is familiar. But by the end of this talk, I hope to leave you with a sense that informed consent is worth thinking about not only as a way of asking if something is ethical or checking to see if somebody's autonomy has been preserved. But also as a way of seeing how particular ideas about justice are made procedural as a place where judgments about capacity get made and then get carried out. In other words, I'll argue that we should pay attention to the work that informed consent does and not just to whether or not it has been attained. Alright, so what is informed consent informed consent is an epistemic relationship where knowing things or rather being known to know things authorizes legitimate choosing. In other words, it's a relationship where there is stuff you're supposed to know, and if you're judged to know that stuff in a way that's legible to whoever's asking. There's other stuff that you get to choose in bioethics and biomedicine it emerged as an urgent response to incursions into the bodies of black men in the Tuskegee syphilis study. These men weren't asked if they were okay with syphilis treatment being held so that they could be studied and many were harmed deeply throughout the 40 years that the study observed them. They're harms the product of what we now call systemic racism of inadequate public health system and of a research enterprise that encourage generations of researchers to reproduce study methods that cause material harm to their community members. And so diagnosing the moral problem of Tuskegee as a lack of consent does work. It diagnoses the problem in a way that can be addressed by ensuring that people are allowed to choose that they're allowed to opt in. It makes people responsible for what happens to them, provided that they know all the facts about risk going in. So key for our discussion today is how we know about knowing. Knowing has to be measured, do you know enough, of the right kinds of things, but also are you the sort of person who is capable of knowing the right sorts of things? These are questions of capacity. So what I think about informed consent. This talk is part of my larger work which examines the normative foundations of informed consent and tries to tease out the kind of work that it's doing. And so what does it mean that my bioethics students, long before we talk about the Belmont report or how bioethics itself had codified informed consent, tend to work through hard questions about what kind of research should be allowed or how to think about harm by suggesting that informed consent is the right way to reason through tough problems. Together, my students who come from wildly different backgrounds and have views that they already know to conflict with one another, tend to collectively see individual choice in the form of informed consent as the way to reason through these intractable structural problems, or what they see as these irresolvable moral differences. People and their view ought to be able to do what they wish if and only if they are properly informed. So it's the intuitiveness, the already in place agreement of this particular way of solving problems that I'm trying to think through. In this project I'm interested in what epistemic resources people are drawing upon and they argue that something was bad because there wasn't consent. And I'm also interested in what it means when advocates respond to medical paternalism by advancing new procedures that place informed consent rather than physician gatekeeping at the forefront of care. This often represents a significant step forward. It's a way that people describe themselves as having more ownership over their own care. For example, and that they know more about what will happen to them, but it's also possible that informed consent models also result in the codification of places to evaluate capacity to be informed. And capacity is one of those things where judgment about whether it is there or not can hang on neurotypicality, it can hang on access to language, and it can hang on whether the person doing the evaluating thinks that the choice being made is reasonable. In this way, informed consent has quite a lot to do with disability. Consent is meant to solve problems of injustice, but the justice that is made through informed consent is of particular kind. It privileges individual responsibility, it requires informanness to violate choice, and it has autonomy as its end point. To be clear, the point of my project is not to argue that informed consent is useless or that its use is a priori harmful, just the opposite. I see it as a sight through which power is exercised. But in that way it's useful to think of informed consent more like a kind of infrastructure, something that's been built over time that helps people get along together. Anyway, all of this makes the fact that informed consent has been instrumental in arguments both for and against abortion in the United States, quite complicated. In what follows, I'm going to try to tease out how informed consent is used by abortion advocates as a way to improve and increase access by providing information and treating abortion as healthcare. At the same time, anti-abortion policies have widely and explicitly used the frameworks and language of informed consent to enact policies that aim to prevent abortion by mandating that pregnant people receive limited and often medically inaccurate information. While both of these are deeply consequential in their own right, they are also necessary context for understanding a kind of policymaking around prenatal information acts that declares itself to be explicitly not about abortion. This policymaking has been able to achieve bipartisan support precisely because it is not on the surface supposed to be about abortion and is instead supposed to be about empowering people to make choices through being better informed. So the elephant in the room is that the landscape of abortion in the US has changed dramatically in recent months. The June 2022 decision in Dobs v. Jackson Women's Health means that the constitutional right to abortion that had been established in Roe v. Wade has been replaced with a state-by-state approach that means abortion is illegal or nearly impossible to attain in the 12 states on the left side of this slide and is tenuous to attain on the 10 in the right. This is a real crisis and people are really getting hurt. Not only because they can no longer access abortion care, but also because things like lupus treatments are being interrupted because the treatments that they need might act as abortifcants. And it's having significant impacts too on the provision of insisted reproductive technologies, which now must answer questions about whether they are engaged in illegal acts when they genetically test or discard embryos. Which is to say, and I think it matters a great deal that the vernacular of informed consent is a familiar one. It matters that it has come to be the way that so many ethical decisions get settled because there's going to be an enormous need to rearticulate the norms and the values that underlie policies about reproductive rights. Understanding the workings of this exceptionally common approach might help to avoid reproducing some of the harms that it tends to also make possible. And so to my first case that of pro-abortion informed consent and consent advocacy. So here are two prominent reproductive rights advocacy organizations. The first is the Goomach Institute. And in this, this bit of writing that they've done a three interrelated elements underlie the long standing tradition of informed consent. Patients must possess the capacity to make decisions about their care, their participation in these decisions must be voluntary, and they must be provided adequate and appropriate information. So the reason I have gone through this is that I want to note the work that is being done here. This is their statement about what people deserve in the context of abortion access. And so doing their articulating abortion as health care. And so this is informed consent, like any other. This kind of informed consent is then imagined to protect people seeking abortions from care that might be harmful to them. But it also sediments capacity judgments and the need for capacity judgments, as well as an obligation to inform this, even in what Gupacher expressly articulates as a Libertory Project. Okay. Next, the Center for Reproductive Rights, where they say that notably informed consent does not include biased or directive counseling, or the forced provision of information that a woman does not wish to receive, such as the forced viewing of ultrasound images. Here too, information is important, but it needs to be of a particular sort. Of course, not include biased or directive counseling or information that a woman does not wish to receive is to many people, and I would bet many people listening to this talk, a fairly uncontroversial statement. But it should draw our attention, at the very least, to the fact that information is not an unalloyed good, that there are different kinds of information, and more importantly, a politics to what information is. The Center for Reproductive Rights is reacting here quite explicitly to the kind of information provided in what I'll talk about next, which are informed consent bills that are used to oppose abortion. As of 2021, 28 US states had informed consent laws regulating abortion. These laws require the provision of various forms of information, like spoken declarations about risk and fetal development, and the provision of informational pamphlets about them. Many require invasive and painful transvaginal ultrasounds. This is information in the form of requirements that people see the real effects of their decision to avoid. They also mandate things like waiting periods, time according to this logic for pregnant women, and the laws of course only imagine cis women to be their subjects to think about their choices and hopefully change their mind. In practice, each of these, and in particular the costs of mandated additional time, act as barriers. What Sarah Ahmed might call strategic inefficiency, where delays and hurdles are part and parcel of systems working as designed. Systems that thwart those that they are required to serve, but do not serve them well. The critique of these is often that the information provided within them is false. A really comprehensive effort called the informed consent project has gone through these laws and compiled some remarkable statistics. They found, for example, that one in three statements about embryological and fetal development were medically inaccurate. And that that medically medical inaccuracy was concentrated in the first trimester, and that these inaccuracies there themselves were just concentrated in descriptions of bodily systems and about organ development. So yes, it's absolutely worth noticing and working to counter the fact that in the name of informing these laws misinformed. But it is also worth noticing that treating these laws as matters of facts, opposing them on the basis of what they are truthful, turns our attention to the content of the informantness, rather than the work that obligations to informantness does. It means we fact check rather than interrogating the legitimizing work that informed consent does. So I want to be clear that I'm not trying to make a kind of both sides argument. Rather, I'm trying to offer an invitation to see that there is an epistemic framework shame shared between these two opposing advocacy strategies. Informed consent is used to advance abortion access by providing information that reveals more options that provides tools for making meaningful choices where meaningful can include having or not having an abortion. It's consistent with frameworks of reproductive justice. They're tests of do you know enough lie and whether you can use that information to navigate, but is often an incredibly adversarial healthcare system and whether or not you can find a provider and gather the required resources to access whatever services are needed. In this way there are tests of informing this but they're not actually imposed by abortion advocates who are informing in the service of advancing access. On the other hand, anti abortion uses are highly prescriptive. They condition access to abortion on the receipt and ability to take up specific normatively laden information. According to them you must possess the cognitive capacity the neurotypicality to take up this information, but also the capacity to expend the resources to make it through waiting periods and sift through the information that is likely or very possibly false or in the pursuit of access to care that has been articulated as needed. So both link information about abortion to access in normative ways but with significantly different approaches to building to evaluating capacity and to wildly different ends. And so here's where some of the stakes lie and complicating the previous two understand this because they both kind of live in this one. Kennedy Brown back or the prenatal and postnatally diagnosed conditions awareness act of 2008 had three stated aims, one to increase patient referrals to to strengthen existing networks of support and three which will be my focus today to ensure that patients receive up to date evidence based information about the accuracy of the test. It sponsors Ted Kennedy and Sam Brown back had opposing political orientations toward abortion and almost everything else. It was made part possible in part by the logic that since they disagree so very passionately about abortion, Kennedy Brown back simply could not have been about this thing, which they would never see eye to eye on, it must be about information itself. So what did Kennedy Brown back do one of the most important things is in a sense very little was by large not funded. In fact, the National Network of prenatal information provision, whereas they're a federally coordinated effort to provide the referrals it calls for or support, there wasn't a moonshot for information about disability. But there was this moment of consensus about the value of information for choice, and it did serve as a model for an incredible amount of state legislation. In 2021 states had passed 20 acts related to the provision of prenatal information. Almost all of them aim to provide evidence based information, and many of them specify that that ought to be through quote, timely and informative counseling. So these acts are explicit about their intention to intervene upon disability. Another problem is a lack of sufficient information about disabling traits in life with disability and take stock of the history of genetic and genomic information used in the service service of eugenics and information mandated through these bills is to be a correct. The point of thinking is the subject of a project I've been working on with philosopher Joel Reynolds, where we look at how genetic counselors tend to confront the problem disability. Quite commonly in the literature and in conversation they regarded as a problem of information that information that people make reproductive decisions in the context of not knowing enough about the right things about disability. A solution then is to intervene by providing more and better information, making consent in other words better informed, but there's a lot writing on that. For one, it upholds the existing form that genetic counseling takes, providing information to clients in the service of their making presumptively autonomous decisions, which is a form that in recent memory has resulted in fairly high termination rates for fetuses with disabled traits. This doesn't seem to be addressed by the introduction of more or better whatever that would mean information. More information doesn't tend to result on its own in epistemic transformation. In the context of the structurally ableist world in which people make decisions, transformation might need to be the name of the game. Kennedy Brownback had endorsement from many corners. One of them was a group of academics that called themselves the pro information coalition, who articulated information as a kind of bipartisan doing everybody should want. And so a failure is when information is biased incomplete or wrong but not when this particular framework is used endorsements came from disability advocates who articulated that more information by disability would lead to more understanding which would lead to less selective termination. I think that things get really interesting when we see how reproductive rights groups articulated their support of this narrow port pro choice President Nancy Keenan said, quote, unlike other legislation send Senator Brownback sponsors. This measure does not include anti choice rhetoric or policy provisions that would harm women's health. It is our view that the bill offers information and services to expected women and does not undermine their right to choose. It was seen by abortion opponents and supporters as as Rebecca dress or put it a kind of truce in me in the culture wars. I'm outlining these forms of support not just for the fact of their support, but to draw attention to the ways in which articulate information is articulated as good as necessary as a key solution to disability and justice, which can be worked towards with more and better information about disability. In each information is good, but information is either normative it'll limit abortion and advance the cause of disability justice or normative because it will improve the quality of choice or neutral as a way to achieve a truce between opposing factions. But this is why Kennedy Brownback needs to be in conversation with the informed consent legislation that it denied being. We can see an informed consent legislation that sees itself as about abortion, that the information they put at stake is deeply contestable. But we also know that from the content of several of these prenatal information, which have explicit prohibitions and providing information about abortion. These bills have been accused by some members of the pro information coalition members who themselves work to get them passed of biasing and distorting the kind of information that they mandate. They see them as a kind of Trojan horse for anti abortion, politicking in the name of disability. So in other words by looking at pro and anti abortion uses of informed consent, we can see that the framework which Kennedy Brownback adopts or adopted was not a neutral one. It was very much about the politics of abortion, which it worked to deny. Okay, so what, what can we learn about informed consent by looking to abortion policy. Why is it so productive to defamiliarize something so every day so intuitive maybe even so obvious. We see that information when it's called upon as a good is it's is rather normative it's contestable. We can see that informed consent capacity judgments are implicit but crucial to the thing hanging together. Perhaps most importantly, we can see that invocations of informed consent do work and informed consent itself does quite a lot of work. And so, in this moment, it's worth thinking about the regulatory function of informed consent, while we're articulating pathways to genomic justice. Thank you so much for your time. Feel free to follow me on. Maya Sabatello is a former litigator with cross disciplinary background, encompassing law, bioethics, gender and disability studies and political science. And she has extensive experience in national and international policymaking relating to human and disability rights. Professor Sabatello's talk is entitled disabling structural ableism in genomics and precision medicine research. My name is Maya Sabatello and I'm an associate professor of medical sciences at Columbia University. I'm delighted to be here among colleagues and experts and grateful to NHGRI and everyone involved in organizing this symposium. The title of my talk is disabling structural ableism in genomics and precision medicine research. I will start with brief notes on disability constructs and representation. Move to discuss how these constructs are embedded in genomic messages and application in our clinical settings and precision medicine research, and then highlight key gatekeepers for inclusion, as well as pathways forward. Before I start, a quick acknowledgement that I'm an IRB member of the All of Us Research Program and that my presentation is made in my personal capacity. Also, I will be sharing some unpublished materials, so please do not use without permission. So the social contracts of disability have been intertwined with scientific progress and rather consistently. From the 19th century, marking of persons with disability as a disease upon the community, to freak shows pictured on the left, where they were exhibited as objects of both misfortune and sites of amusement. And then the 20th century's rise of scientific knowledge that reframe disability as pathology that requires treatment, elimination, or institutionalization of those deemed incurable. People with disability have been negatively portrayed. A 2019 report by Judith Heumann, a leading advocate with disability, found that they're commonly depicted as the supercrips who successfully overcome their disability. The innocent fools, passive actors lacking competency and cared for by others. And as the middle and left images on the slideshow, they're also portrayed as villains, presumably due to their disability, or as one-dimensional victims, because disability is the most central and limiting aspect of their lives. In clinical settings, this one-dimensional construct often translates into diagnostic overshadowing, where all health complaints are presumed to be related to the disability, even if that's not the case. But it is broader, as exemplified in Dr. Stephen Hawken's death in 2018, where he was depicted not for his achievements as a brilliant mathematician and scientist, but as a person freed from his wheelchair. Now these disability constructs and representation are also embedded in genomic and precision medicine research. By definition, genomic research aims to explain how molecular maps produce diverse or in medical terminology abnormal outcomes. And it is mobilized by therapeutic goals and a presumption of genetic meliorism, meaning that genetic knowledge can perfect human flourishing by conquering disease and disability. Genetic testing and pre-implantation genetic diagnosis are commonly known in this context with suggestions as pictured on the right that a perfect baby is a blonde, fair-skinned and disability-free kid with perfect vision, low risk for cardiac diseases, and no inherited diseases. However, anti-disability genomic messages exist in other genomic contexts from gene therapy and gene editing to pharmacogenomics, as well as in public understandings of genetics. Research shows that people tend to be genetic essentialists, viewing genetics as deterministic of one's traits and behavioral outcomes, and with equality that creates separate homogenous groups. Other studies show that people are strategic essentializers who use genetic frames when it fits with their goals or other perceptions of the social order, and the articles on this slide refer to two key scholars in this area. Either way, it's not great news for people with disability. In medical context, such as psychiatric conditions, genetic essentialism has been associated with reduced blame for the condition, but perceptions of incurability and preference for more social distance. Outside of medical settings, genetic essentialism often comes with other essentialist beliefs, including racism and sexism, which are already reflected in the disproportionately high prevalence of women and people of color with disability. And in any case, if we are thinking about people as strategic essentializers, disabilism is part of the existing order. As a K1 awardee, I further explored these issues in a series of vignettes on the use of psychiatric genetic information in non-clinical settings, such as child custody disputes and tort litigation. We found expanded notions of genetic essentialism and militarism, meaning that participants viewed psychiatric genetics as an indication of a psychiatric condition and need for treatment, regardless of the presence of symptoms or a diagnosis. We also found, and that's perhaps again as strategic ableists, that participants in some cases associated psychiatric genetic risk, as well as a psychiatric diagnosis or a presumed psychiatric condition with lower capabilities in daily life activities that were unrelated to the case, such as opening bank account and signing a financial contract or reflecting prevalent disability biases about people with psychiatric conditions. Now, theoretically, precision medicine research could sidestep some of the anti-disability messages as it takes a more holistic approach to health that includes biological and genetic factors, alongside environmental factors and lifestyle choices. Significantly, a major promise of precision medicine research is also to focus on genetically complex chronic conditions that are overburdening on health disparity populations, such as people with disabilities, and to reduce health disparities. And in a national study of almost 1,300 people with diverse disabilities that we conducted in 2018, we found high support in precision medicine research, high willingness to participate and provide lifestyle, genetic and biological data, as well as high interest in getting various medical and genetic results back. However, ableism and negative disability constructs are ingrained in all the structures that enable support and implement precision medicine research. So my working definition of ableism is on the slide. It is a system that places value on people's bodies and minds based on societally constructed ideas of normalcy, intelligence, excellence and productivity. It encompasses this ableism, the devaluation and exclusion of certain kinds of bodies, but also obviously ableism, the valuing and promotion of other kinds of bodies with no flexibility as to how things should be done. Structural ableism is also strongly connected with racism, sexism, colonialism and capitalism, by denying rights and opportunities based on social constructs of who is presumed to be biologically fit and superior or biologically unfit and inferior. And as, again, is reflected in the disproportionately high prevalence of disability and marginalized gender, racial, ethnic and also to economic communities. So I'm going to discuss four key gatekeepers to inclusion that emerge in my work and in conversations with colleagues and various disability network. The fact that mainstream research is exclusionary. Despite progress, existing cohorts in mainstream precision medicine research are largely white and exclusionary of people with disability. In a study that I conducted with my colleagues, Dr. Katie McDonald and Dr. Ariel Schwartz showing on the right. We looked at NIH funded phases two, three and four clinical trials that were open to the general public between February 2018 and February 2021. Overall, we identified 248 studies. We coded their eligibility criteria for inclusion and exclusion and found that 75% of studies. Yes, 75% of studies are likely to directly and indirectly exclude adults with intellectual disability from participation. And I want to highlight that these findings are relevant for precision medicine research studies, some of which are registered as clinical trials, and that they're likely also applicable for people with other disabilities as only one. And yes, I want to repeat only one of the clinical trials included one type of accommodations. In fact, this pervasive exclusion also resonates with our survey findings on precision medicine research, where we found that 76% of our participants stated between have stated having three to eight access communication, institutional, economic, institutional, and other barriers to participation in precision medicine research. As a participant commented, they, that is precision medicine researchers won't want to include people with disability. The challenges for participation and access benefits of precision medicine research are compounded for some people with disability. In our study, we found that participants from poor households have more barriers to participation. And that interest in research participation in return of genetic results was lower among women and racial and ethnic minorities across disability groups, as well as deaf, hard of hearing and autistic participants. The stories about no benefit from precision medicine research were higher in this populations. These findings highlight the importance of intersectionality and likely the result of lived experiences at junctures of oppression. Here, ableism, racism, sexism, and classism. Currently, people with disability are commonly enrolled into disability specific bio banks with a key caveat. Such cohorts are generally grounded in genetic essentialism and merely orism. And unlike precision medicine research, they do not aim, nor focus on the focus on the person as a whole. Now on the right highlights this issue, focusing on autism research and showing data from a federal advisory panel, the Interagency Autism Coordinating Committee on how research funding was used between 2008 and 2016. When it becomes clear, most animal funding, about 60% of it goes for research on the biological and genetic risk factors associated with autism. 24% goes to treatments, screening and diagnosis research, and only 5% of funding goes for services and 2% for lifespan issues. So without bad intentions, this combination of exclusionary mainstream precision medicine research program and segregated and unequal genomic research agenda. We deprive people with disability the opportunity to address chronic health needs and we reinforce their constructs as one dimensional abnormal spectacles in genomics. Moving to the second gatekeeper on medical institutions. Precision medicine research studies are generally housed in medical schools that are notoriously inaccessible in their external and internal designs, including medical equipment. As extensive research shows, including work by by Dr Lisa Izzoni shown on this slide, many clinicians have misconceptions about people with disability and do not understand accessibility and accommodations or what they are required to provide. With increasingly blurred distinctions between clinical and research settings, these limitations are likely to exist also among precision medicine researchers, many of whom are clinicians or educated in medical schools. Precision recent reports by the American Medical Association indicates that medical students and clinicians with disability are significantly underrepresented compared to national estimates. People with disabilities that's remain the other in research settings and likely viewed as mere patients, not equal partners. Now IRB is emerged in response to historical incidents of abuse in research, and they are important actors in assuring certain certain protections for research participants. However, research shows that they lack diversity. They have little ties in marginalized communities, and that they rarely include a person with a disability or a disability advocate in among their members. As a result, study protocols are commonly reviewed through ableist lens, including presumptions of of incompetency, as in the case of IRB, IRB is requiring blind people to bring a witness to sign the consent document, instead of requiring that consent forms will be in an inaccessible format. Or they come with an expectation for guardianship, as reflected in the IRB's recommendation below, would it make more sense to include guardians or family members? The reason being that the guardians may have more pertinent information about precision medicine research in individuals with disabilities. And of course, sometimes these ableist presumptions also turn into a categorical exclusion. As shown in the recommendation quoted on the slide, that individuals with intellectual disabilities and autism spectrum disorder not to be included in the population of interest for this protocol, despite the range of abilities within these communities. And although this is this was a minimum risk disability accessible study that merely inquired about people's views about precision medicine research. A fourth gatekeeper is general medical journals that decide which topics get the attention of the medical community and have an impact on clinical practice and policy. Yet as quoted on the slide, disability issues are generally not an issue of interest and or a priority. And often they don't even make the tutorial cut merely based on obstructs. And that's the case across health context from precision medicine research, as was the case in the first quote on the slide, as well as access to healthcare and the challenges experienced at the beginning of the Kobe 19 pandemic, which is the second quote on the slide. And these health contexts are connected in focus groups with blind and low vision adults, as well as adults with mobility disability that we're conducting as part of a study on trust in precision medicine research. Participants share significant trauma and clinical care and reflections on the disability bias that emerged in discussions on allocation of resources during the pandemic. Another way in which medical journals impact inclusion is in the descriptors used for people with disability and disability communities. The preference of the deaf and autistic communities for identity first language over medical journals use of person first language as reflected in the articles on the on the site on the slide is perhaps more most known. However, this discussion is relevant for other disability communities such as the blind low vision community, and more generally, language choice can reinforce disability biases and presumptions of inferiority by being patronizing as in towards special special needs by indicating the presumed passivity suffering and burden to others, as in wheelchair bound, and by using terminology such as mental retardation that is widely seen as offensive by the disability community. So so far I discussed the multiple layers of exclusion and discrimination of people with disabilities in genomic and precision medicine research. I would like to suggest six intersecting pathways to disable the system of structural ableism. First, we need to develop disability debiasing and competency curriculum in medical schools and other relevant scientific disciplines, as also expressed by participants quoted on the slide. Significantly, there are studies indicating this is possible. One example is the work captured on the slide by my colleague Dr. Shumita Descupta in collaboration with NHGRI's ISCC. This study focused on implicit bias against people with physical and intellectual disability in the context of prenatal genetic testing. It included an educational training intervention and reassessment of clinical decision making, leading to the findings that reducing implicit bias is doable. A second pathway is that we need to build community of precision medicine researchers with disability from below. As expressed by a participant in our study, if the researchers had extensive knowledge and experience in disability, social justice, history and issues, and were disabled themselves, it would be better. This can start with mentorship as the guru program highlights, but we must go beyond this to ensure that young researchers with disability are encouraged to seek careers in scientific research. That the research environments are supportive of such researchers, and that is shown in the bus sign on the slide that disability must be part of all efforts to increase diversity, equity and inclusion in NIH funded research in the academia more generally. A third pathway is community engagement. Now community engagement is increasingly viewed as best practice in genomics and precision medicine research studies. However, studies that engage disability communities are viewed. And those that exist often include multi stakeholders under the umbrella of community, including parents, caretakers and clinicians. These are important stakeholders, but they're likely to reinforce power imbalances and their voices cannot replace those of individuals with lived experiences. So we need to develop and to adopt a twin track approach that assures inclusion of people with disability in all mainstream community engaged studies, as well as standards that follow the motto of nothing about us without us for developing, implementing and evaluating community engaged genomic and precision medicine research projects relating to people with disability. Next pathway. So as a quote on this slide indicate participants in my studies have emphasized the importance of being treated as first not second best citizens when it comes to inclusion in precision medicine research. That would mean creating studies that follow the principles of universal design. So they are accessible from the get go to individuals with diverse abilities. It would mean evaluating whether enrollment plans and study materials are inclusive of this population. And it would mean assuring that research plans include measures and budget for accommodations. So inclusion in genomic and precision medicine research no longer depends on the goodwill of individual researchers, but is understood as a requirement to ensure equal rights and opportunities. Fifth pathway calls for revisiting research regulations. Looking across time, research policies and regulations have evolved in response to incidents of abuse alongside societal value of inclusion and human rights standards. But research policies and regulations have to date largely overlooked disability rights and ethics. So these need to come in by shifting from a mere protectionist and exclusionist approach in research to empowerment, including presumption of competency and requirements of disability accessible assessment methods and study material. And as reflected in the participant quote on the slide shifting from the conceptualization of justice as equal opportunity in research participation to a framework of equity in outcomes and sharing of benefits from precision medicine research. Finally, a word about the expectation of sharing data from NIH funded studies, an issue that I have recently worked with. I worked on with Dr. Daphne Marchensko. And the gist of it is that as data from disability specific cohorts and maids from precision medicine research studies are increasingly being shared with many new researchers. We must develop policies that correspond with the goals of moving from health disparities to health equity, and that assure that secondary data users both remain morally engaged in discussions on the needs and preferences of the relevant disability communities, as well as do not cause group harm while developing and implementing a study. This includes a commitment to not replicate and exacerbate notions of disability inferiority, or using stigmatizing language that reinforces disability oppression. Put differently, data sharing must be accompanied by responsibility sharing to disable structural discrimination, including structural ableism. I want to thank the research participants in our studies, community partners, research staff and collaborators across projects, funders, my home departments at Columbia, and all the individual experts who have shared with me their insight, knowledge and time. Thank you so much. And I look forward to the discussion. Thank you. I'm Chris. In case you're just joining. I'm Chris Donahue, and I am joined here by with Michael Rembus, who, and we have had really three incredible talks that have really, I think, gotten to some of the foundational issues in terms of the bioethics of disability and genomics, its history, its complexity. Mike, you had the first question. And as I see that most of the audience questions have already been answered and we also encourage our audience members to submit any additional questions they may have as we're having this session so Mike go ahead. Hi, thanks Chris. Sure, I thought we would start with a question that actually appeared in the, in the question box during the talks, but it's also a kind of basic definitional question and it was addressed to Rosemarie but the other speakers can also contribute as well. And that was to address the difference between structural and cultural competency. And the speakers mentioned disability competency or cultural competency, but the trend in medical education and other places in the past several years has been towards structural competence building structural competence. So we're wondering if you could address that issue. This is Rosemarie. Thank you for the question. I wasn't able to elaborate the complications of structural competence versus cultural competence. There has been a rather robust and I think important critique of cultural competence as being a form of kind of cultural arrogance to assume that people who are not from or familiar with a particular culture. Often thinking about this in terms of what we think of as ethnic or racial cultures might become competent in some other culture that they are not familiar with. I think that that's important as a critique. But I also think that there's something distinctive about what I'm proposing is disability cultural competence in the sense that in my move to universalize disability to make it part of the human condition. What we have then is the idea that everyone belongs to disability culture in one way or another and everyone should have access to disability culture. So while there I think could be an important critique about where people are placed, let's say through an intersectional analysis within disability culture. I think it's worth universalizing disability for the purposes of thinking about culture and competence. So what I want to do is emphasize not humility cultural humility but rather cultural competence with my argument that we all need to learn to be disabled everyone patients doctors everyone. So that would be how I would want to frame. And I think it's a useful frame for how disability cultural competence might be understood as somewhat different from specific ethnic or racial modes of cultural competence and also yes structural competence is exactly what we need but I want to use. I want to use the term cultural in particular to call attention to disability culture. So Maya go ahead. Thank you so much. This is Maya. Thanks Rosemary. I think that was really wonderful explanation. I do want to add, you know that there are also structural issues that are that the lack of cultural competency disability culture competency really gets into every step of each structure and every system that we have. That is it's not enough that clinicians for example will know about measures of accessibility if clinicians if clinical settings do not include accessible medical equipment. And it won't help. If we understand that we're all going to be disabled at one point of our life. If we're not going to be requiring that's institutional settings are accessible for everyone. So I think and of course including accommodations which is the other part of accessibility that really needs to be a part of the conversation. So I really think that we have to think about it as something that is not just it's both educational and it's a training component to deal with biases we know cultural cultural competence trainees trainings have limited ability to change completely biases. If someone is racist it's very difficult to move away from that if you are very ableist it's very difficult to move away from it, but we have to start having those conversations to show where the bias comes from. And then address it both in terms of philosophy, but what we understand. And then I think the more we know the less bias we're going to have, but we also have to show how it comes into practice and implementational aspects of genomics precision medicine and so forth. Thanks so much Maya. So Rosemary had a question I and I think Liz I saw perhaps wanted to make a comment so let's get back to Rosemary and then let's get back to Liz but after and after that I have a question that I have to ask so. Yeah, thank you I wanted to emphasize something that I brought up in my little talk about becoming disabled and that is the, the border that is set up between the patient and the expert. I would like to see health care in general soften that border some in the sense that when we think about patient communities. We often think about patient communities as being something quite different from health care workers or bioethicists. But again, the idea of universalizing disability I think gives us a way of imagining multiple identifications. So that will we can soften the border that exists so firmly in medicine and medical science between the patient and the expert. Okay, let's go ahead. Yeah, thank you so much. This is Liz. I wanted to mostly have offer a sort of yes and to both of the comments before, because I think this is such an important framing not only for this talk but for all of the conversations we're going to have throughout the next couple of days. Because it seems like what we're trying to address here is not just the question of disability with the obligation to engage in it, and obligation has something to do with responsibility right. And so if we're talking about structural versus cultural competency, one framing of that might be of a sort of like institutionalized or collective versus more individuated approach. But there is an envelope there is absolutely an obligation that we each see, see our stakes in one another and understand differences as, as embodied or a cultural and all and, and sort of this programmatic knowing more about ourselves and others. It's also a responsibility that I think we should all be in the position of demanding from our institutions and I think that's a bit what structural competency gets to. It's about accessibility but it's also about who gets imagined to be in the space and not not making it the responsibility of individuals to demand accommodations always, but demanding that institutions have already asked and answered some of those questions. I think so much as I think as a as a as a follow up this is Chris Donahue speaking. I want to push everyone a little bit on disability universalism. I think it's a useful concept. I think it has a lot of limits. I think it has a tendency to, to reduce the complexity of disabilities particularly visible disabilities. I also think that there's a broader point about when you become disabled that means you were at some point typical right or normal, or at least society thinks that does that give you more recent resources does that change your experience of disability is the ability does are we by universalizing disability by making it part of the natural process of growth. It's really not making enough distinction between, you know, being born with a disabilities, and which is a very different experience that as well, you know, as opposed to becoming disabled which I think is also a different and apologies for the long question but I just want to, I just want to worry our discussion a little bit and have obviously these are everyone on this on this panel is an expert on this topic so I so whoever would like to start to answer my question first. I'd like to introduce a couple of terms from critical theory that I think are very useful in these conversations. And I think that's what I'm going to talk a little bit more about. The idea of universalizing disability could be understood as strategic as a kind of strategic essentialism that will use a, if you will, a kind of big tent idea to upset the prevailing concept, especially in medical science of the border between us and them. And as Chris has suggested that has certain limitations that we've talked about a lot in what I call critical theory or feminist theory that there are wide differences as Chris points out within any identity group, the experience and the positioning intersectionality as a framework also helps us understand this better. That said, the better the more we can argue for the capaciousness of disability in the world, when it is understood so completely in medical science as being a form of otherness, something that is to be routed out of the human condition. So I think strategically, this kind of universalism or essentialism can can be helpful for us, even though it has its limitations as Chris has suggested. Maya. So I'm torn a little bit about that. I will say that on the one hand I think that as a yes strategic essentialism we want to push everyone to think about disability and universal terms for all the part of that community today tomorrow or some other time or one of our family members. But there's huge intersectionalities and differences within the community. And there is heterogeneity, not only with regards to disability communities. As you know, being born deaf is not the same as becoming deaf when you are 75. And what you will need as a result of that is different, because of lack of access to care and stuff like that throughout the way so you're the experience of being born with a certain situation might impact the rest of your life in ways that disability that's related to aging is less likely to have that type of effect. There are also structural other types of structural discriminations within our community and society. Right. So being white, low vision woman is very different than being blind African American woman who lives in poverty. And I think that the idea that we can just have a universal goal and that will capture it all. I think we have to be worried that we're not going to be missing out on the voices of of the voices and needs and other types of discriminatory practices that exist. So that's my reservation for the universalism approach, even though as a concept as a strategy of trying to make sure that everyone understands that of course it's important. And Maya is exactly right. This is Rose Marie. I think we want to both and approach regarding universalism and also particularism. Thank you. So, Liz, did you have a further comment. I could just pick up on one aspect of part of the question that you were asking is I think it gets at something that is also kind of unsettled which is the where you were talking about the coming disabled means becoming means moving from one state to another. I think that in this, this is a conversation about, about genetics and about the explanations that we're offering. And so I wanted to, I don't have an answer to this of course who would have answers, but I do want to put on the table a kind of a set of questions about how we make a difference for the claims that we make in American jurisprudence there's there's such as tendency to need a kind of a cause a kind of harm in order to seek redress. And so that does sort of tend some of our explanations to the biological to the aspect of born this way to a kind of a sense of there was change or there was something that went wrong. This disrupts universal stories and it also creates ones, perhaps where they might not exist. And so I guess what I'm trying to get it is, is an attention to the stakes of how, how we tell the stories about becoming when they play into narratives about the claims that we're trying to make for a kind of universal access that still has a particular character that is responsive to individual needs so that's the both and there, and how do the stories that we tell or have to tell seem to play into that. That's, that's really fascinating. I have a question that tries to bundle a little bit the conversation in the q amp a but Mike do you have a have a follow up question for any of the panelists or panelists as a group. I have so much to say about this, this conversation but I'm not a, I'm not a participant on the panel I'm a moderator so I will refrain at this time but, but I do actually I was hoping, because we were kind of running short on time and I thought we could move from the universal, so to speak, to the more concrete. And I have a question here from an audience member actually and I thought you three would be excellent to address this question he says, or they say, as a geneticist in an autistic advocate I often encounter non autistic autism researchers who are very open about their disdain toward us to autistic people and see nothing wrong about excluding them etc. How can we tackle the negative bias and power imbalance that are so widespread in autism research. So just a very small kind of question there. So, you know, I think that's a part of the heterogeneity within our community and the idea that maybe we are all genetic essentialists. And, you know, even in my study I know that there, we found differences in terms of where folks are willing to have their data being used and shared with for which type of disability related studies. That is, those with more discriminated and more stigmatized conditions such as autism, psychiatric conditions and so forth. We're on the lower range of people who are willing to share their data for this type of research compared to, for example, research on blind or deaf individuals. I think, I think this is a very strong and truly real comment there are groups within our community that are more stigmatized. I think that one way is to first of all again if we were to move into a more different approach, showing abilities and really insisting that that we are providing the methods and measures to ensure inclusion. I think that interactions have an impact. The autistic community is heterogeneous within it, and there are diverse abilities in it, but we have not even tried to begin, including them properly in studies. We still have studies with autistic folks, but only with with the expectation that they will be able to do the same exactly as everyone else in the sense without that is without thinking beforehand. What do they need to be a part of that conversation from day one before the grant was submitted. So I think the interactions are critical. The engagement constantly with community members teaches you a great deal about the community. And I think, again, increasing awareness and education about identity politics here about abilities and restructuring the conversations so it doesn't focus constantly on what we cannot do. But what can be done when given accessibility and accommodations. For me that would be a start. This is Rose Maria I'd like to comment a bit on the new genetic essentialism that I think has developed over the last few decades with the increasing narrative power of genetic narratives for all of us and how these genetic narratives this is very essentialism is being if you will operationalized in research and in the development of genetic tests and genetic technologies such as CRISPR and particularly a wide range of tests that are developed for genetic for the generation of new genetic conditions. So that we have, we're beginning to see ourselves as people with disabilities. And I think as human beings in a much more essential way in terms of what tainted genes we have that are hidden within us, but also expressed in our lives over time. And I think in particular in terms of health care ethics and health care treatment and the development of health care technologies, we need to really focus on the calcification of these narratives. Particularly the case with the way of being in the world we think of as autism, because autism is a focus of the development of genetic testing that can be offered in reproductive clinics. And the first down syndrome in particular is a condition that is iconic in terms of genetic essentialism. And we need to move away from genetic essentialism I think and start looking at things like quality of life. And I think about in a historical way about how people can live with genetic conditions or with disabilities, emergent or manifest in in ways that allow us to have a high quality of life. And I think that kind of shift away from genetic essentialism is the most important work that we can do in health care education and ethics. Right. So, Liz, I saw you had a comment and then Maya, and I would like to figure out how to ask one final question that I think might be important. So let's go ahead. I'm happy to be responding to Rosmarina because I really want to pick up on what she was saying about this that the incredibly important move that needs to be made from genetic essentialism to quality of life. I think the framing of the question that we're taking up itself is really important. The kind of ubiquity of the investigator that has this entrenched sense of, of the problem of autism of discriminatory attitudes. And of course we have this sort of rarefied idea of science happening in this ivory tower where people ask neutral questions. And I would bet that nobody in the audience or in this conversation really believes that to be possible and probably doesn't really want to spend all of our time fact checking the biases of our investigators we all are biased like but we're biased probably towards ideas of justice that we're invested in. So if we start if we start at that place. And we see that there are the kinds of questions that are naturalized in the in the investigatory programs of researchers with negative attitudes towards autism we we might not want to spend our time fighting that individual researcher but rather asking about what kind of structures make those the questions that come to be asked. And I think this is sort of a theme that links all of these presentations together, trying to look at the or at least trouble what gets counted as normal. And how did that come to be in and I think, pointedly, how could we imagine it to be otherwise which I think is what Rosemary is getting at the strategy or a rarefication of genetic essentialism is always going to have normativity possibly we want to disagree with. So why don't we, why don't we call that what it is, and move towards questions that intervene on on people's lives in a more material and perhaps better way. Perfect. Maya, you had a follow up comment. Yep, just a very quick comment that again builds on Rosemary's and these as comments which is the idea that you know we tend to think about genetic research as the start beginning and end with return of results being the end outcome. That's when we're finishing things. But I think we need to reframe that returning results is the first is the first beginning. And there we have to start then thinking, how do we ensure life quality development of skills and all of those other areas that at the moment are underfunded. And, and again also to remember that 90% of people with disabilities are not disabled because of genetic causes, but because of car accidents wars massive violence abuse and other forms including lack of access to care on structural levels. So, again, I think we have to reframe that conversation and I'll stop here I know Chris you have another question. Actually, I wanted to just make sure that Mike doesn't have anything that he wants to follow up on. You can go ahead Chris. No, actually we are at time and I'd like to keep to that time. I also need to acknowledge that we have a lot of questions in the Q&A, and we very much appreciate them. We will, we can answer them in the context of this panel, but we will follow up and make resources available to our audiences after this symposium that will try to address many of these questions. These questions are also really good as we, as we plan follow up events. So thank you again our audience members for this question for these questions. Thank you panelists and my co-moderator Mike Rembus and I just want to say one thing that one thing that's sure go ahead. Just one really quick thing that's really unique about this symposium is that these presentations are going to be compiled and into an anthology into a book so people also be able to use the book as a reference as well. Yeah, so there will be a book and I think the book will be as path breaking and as revolutionary as the symposium itself. But in any case, this has been I think a really fantastic discussion. We are now going to go on a break into one o'clock. And I will, I hope to see all of our audience members back with us and I very much look forward to this really fascinating series of discussions that we're having. Thank you again to our audience and thank you again to our panelists and my co-moderator Mike Rembus.