 Rebecca Muller is T32 postdoctoral fellow in the ethical, legal, and social implications of genetics and genomics in the Department of Medical Ethics and Health Policy at the University of Pennsylvania. She also teaches ethics and mentors student research in the Master of Science genetic counseling program. Her talk is entitled Time, Future, and Genetics, the Temporal Complexity of Disability. Hi, I'm Rebecca Muller. I'm an LC postdoctoral fellow in medical ethics and health policy at the University of Pennsylvania. Thank you so much to NHGRI and the University of Buffalo Center for Disability Studies for hosting this event. My talk today is on time, future, and genetics for precision medicine. Genetic diagnoses are often imprecise with respect to prognosis and understanding how prognostic uncertainty is communicated and experienced within different contexts is really critical. For example, we know that there is a chasm between pre and postnatal descriptions of genetic disease, a twice-told tale that illustrates how every description of a genetic disorder is a story that contains a message. But we know a lot less about how these same diseases are storied to affected children as they grow up. And I am particularly interested in conditions that have implications for life expectancy. Today, I'll be telling you a story about illness and time. It's a story about the scientific representation and lived experience of an evolving prognosis. It centers on cystic fibrosis as a sort of paradigmatic example of a pediatric disease that has gradually become survivable to adults. It's based on historical and ethnographic research on cystic fibrosis communities but is no doubt inflected by my own experience living with cystic fibrosis and my professional experience as a genetic counselor. In focusing on the lived experience of people with CF, I'll illustrate how something as fundamental as time is shaped by prognosis and the projection and manifestation of disability. And this is critical to understand right now, given the prognostic implications of genetics and genomics whereby normative futures are recast in uncertain ways. First, I'll say a bit about how treatment and survival in CF have changed. Then I'll talk about prognostic messages from the perspective of people with CF, emphasizing the impact of these messages on perceptions of the future. Finally, I'll show how plans are often predicated on prognostic expectations. So in parsing out how people with CF plan their lives with an evolving prognosis, I'll really start to highlight societal structures that are premised upon able bodies and normative life spans that kind of bracket out disability as the static state. And I'll explain how these temporal aspects of ableism compound the medical challenges that people with CF face. By pulling in theory from disability studies, I'll close by making specific recommendations to different stakeholders. Historically, a pediatric disease that was lethal in childhood, CF has been transformed through complex care regimens that have enabled many to live into adulthood. This chart here shows how CF was becoming more survivable long before this sort of current moment of targeted therapies called CFTR modulators. And it shows how life expectancy increased from just a few years old in the 1950 to around 40 in the late 2010s. And each of the bars in this graph shows different types of treatments and when they were developed, and most of these treatments take 20, 30, 40 minutes. So people with CF and their families devote many hours a day to long treatments like this pulsating therapy vest that you can see here on a little girl, as well as weeks or months a year to more intensive therapies. And that's because CF is a disease of exacerbations with baseline lung impairment and then periods of worsening infection necessitating IV therapy to minimize lung scarring and thus progression. And progression in CF is most often measured via lung function testing, where a metric called FEV1 is really the most prognostic single measure, is now rightly celebrated as a premier success story of precision medicine. Given the recent advent of targeted therapies called CFTR modulators that correct the faulty protein that underlies CF. And so as of 2019, about 90% of the CF population was eligible for an FDA approved agent. And this was really big news because the drugs markedly reduced symptoms for many. Some were able to reduce reliance on other really time consuming therapies. And the hope, of course, is that they extend life significantly. Perhaps infer from the same chart is that median life expectancy is a blunt but popular metric for communicating the therapeutic progress given the markedly improved survival that we see since World War II. Yet to people with CF and their families, this metric as well as just the progressive nature of CF can be really formative for closing possibilities when it comes to the future. So throughout my interviews, people with CF spoke about the shadow of a scary prognosis. Many have the median life expectancy committed to memory and stories of learning that median life expectancy are really permanent. Life histories were also sometimes annotated with an evolving projected median life expectancy. People describe really diverse sources of prognostic messages. So yes, people did hear about the life expectancy sometimes from their doctors or conversations with their parents. But others got different messages about CF's prognosis from CF peers, biology textbooks, memoirs and movies like this one shown here called Alex, The Life of a Child, or social interactions with teachers, non-CF peers, non-CF providers, many of whom assume that these individuals would die young. I'll highlight just one representative example of how people often learn about CF's prognosis really just to flag how parents may have, may be the ones that have to deal with this really complex challenge of prognostic communication. At age six or seven, Hannah recalls, we were driving in the car and I asked my mom how old people with CF live and her whole body tends to stop. And she got really teary eyed and she told me the average at the time was 25. And I definitely had that in my head growing up. So for some critical messages came from meeting CF elders who modeled longevity or less fortunate peers who died young. For example, Hannah had a camp counselor at CF camp who also had CF. And she recalled that meeting with someone felt like meeting a celebrity. So like you have CF and you're how old? And she just did her treatments when we did our treatments. It was an impactful moment because at that point I could imagine being an adult with CF. Like that is, that will happen. I can go out into the world and be an adult with CF. So CF sociality that is experiences within the CF community informs what I've come to call prognostic imagination, the visualized projections that an individual can see, dream, hope, fear or plan for their lives. Well, Hannah's experience with a CF elder offered hope for another former camper named John. CF camp was actually where he first learned that CF could be lethal, which made him believe that he would soon cough up blood and ultimately die young. Can start to see is that certain prognostic messages get internalized and shape how individuals see their own future. Respondents held really diverse and evolving ideas about the future from envisioning a thriving adulthood to waiting to die. Others avoided big questions about the future by planning short term polls. And some actually found life expectancy almost motivating as they chose goals that would push them forward. As noted, I call these varied ways in which people envision their lives in light of a diagnosis prognostic imagination. And prognostic imagination doesn't stop at that level of hoping, fearing or dreaming, but instead maps to actions like making plans and the associated decisions. For individuals with CF who are diagnosed in childhood, ideas and decisions about higher education, employment, biases, marriage and having kids were often predicated on both disease progression and abstract ideas about the prognosis. For example, to go back to Hannah, that simultaneous belief in adulthood and reduced life expectancy, shaped her decision throughout life. When we spoke, she was in her 30s and she explained, I felt so compelled that I wanted to live a huge life in whatever time I had. I went to college at 15 full time. I worked full time. I got married a week after I took my first child. I got married a week after I turned 18, moved 900 miles from home. I wanted to fit everything in. In contrast, John, who I mentioned before, believed that his disease would inevitably progress and lead him to die young. He too decided to live fast. But by turning to drugs and partying, decisions he said likely expedited his path to lung transplant. He explained how experience is seriously important to me. I've done more than most healthy people do. So we can start to see that what people anticipate in terms of their health and longevity can impact the decisions and plans that they make. Perceptions of prognosis may therefore become actionable regardless of their accuracy. Of course, CF is a progressive disease and for most adults, progression is embodied and physically limited. Despite this, I contend that the prognosis alone communicated in generalities with aggregate data can have a profound and under-appreciated impact on people with CF and their families. Take the experience of Alexandra. In her 20s, she went on disability and described waiting to die from that point forward. Reflecting on her life, she shared with me, here I am turning 50 this year. And I'm like, whoa, you know, I turned 30. I'm like, now what am I going to do? I turned 40. That was like freaking out. Now I'm going to turn 50 and it's like, okay, have I wasted my life? But then I think, well, you know, I got all the medical care I needed because I was on disability. I never had to worry like other people, but I couldn't work. I have a college degree, but I couldn't work or get married because I'd lose my benefits. It's like, now what do I do? Because here I am 50 and they're like, you know, this probably isn't going to kill you. It's like, really? This is 25 years too late for me to work or get a retirement plan or whatever you do. Alexandra is someone whose health had fluctuated over the years and she spent a lot of time carrying out her own medical care. Despite many hard periods, her lung function was mildly impaired and she was able to do volunteer work but stopped short of pursuing employment even though it may have increased quality of life. Alexandra's story speaks to the challenges that people with CF and many other disabilities face as a result of societal structures that are premised upon able bodies with normative lifespans that bracket out disability as the static state. Most obviously, state Medicaid plans and social security disability income have complex eligibility criteria and require permanent disability. There are work trial programs and some states have more varied plans for workers with disabilities so they have income and assets limits and they tend to be hard to navigate. People with CF facing worsening health might do the administrative work to qualify for Medicaid or for SSDI and then feel kind of tethered to the program. Unable to work or to marry depending on the circumstances. Even in the event that their health does improve, you have new therapies, these kinds of fears of health fluctuation and disease progression. The administrative challenge of re-qualifying for disability if they eventually go off of it and the lack of part-time jobs with good benefits all impede people with CF and other disabilities from working. Retirement savings present another interesting challenge for people with life-limiting illnesses given that these saving plans are really predicated on people living and working through their 60s. Although people who qualify as permanently disabled can generally access the retirement savings without a penalty, for people who are faced with progressive illness that limits life expectancy, saving for retirement can feel unwise. For example, if illness progresses and pushes an individual to instead work part-time, it might actually be preferable to have liquid assets to bridge the difference when traditional retirement starts to seem really unlikely. At the same time as disease prognosis improves with new treatments, past decisions not to save or not to pursue a career may become problematic. And there's a lot of talk of this now in the CF community as modulators really start to shift expectations of age. In addition to government and financial programs that assume disability as a static state, existing accommodation frameworks in work and education sometimes really fail to anticipate the kind of fluctuating needs and time demands that are so common in chronic and progressive illness. So, genomic medicine often promises to provide prognostic information to enable disease prediction with the hope of early intervention. Yet when we look at the ground level and start to really understand the experience of people who are living in prognosis to use the words of Sarah Lachman-Jane, we can see how predictions are not always helpful, absent thoughtful communication and societal supports. It's therefore critical that clinicians, researchers and policymakers begin to really grapple with the unique temporality of disability, disability studies, and think about this modern category of disability historically. It's apparent that social attitudes towards disabled people became more negative around the turn of the 20th century. And one of the reasons why is a shift in perceptions of everyday time prompted by industrialization. So, if you look to the language used to describe disability, there's the shift amidst industrialization from words like affliction to handicapped and retarded, which emphasizes slowing down and inability to keep up with new time standards. Within medical models of disease, we see a lot of temporal language, right? My use of chronic and progressive, and then there are developmental disabilities, which to quote Allison Hafer, do a kind of double duty, referring to both lifelong conditions that develop early in life, but also implying a delay in development, a sort of detour from a timeline of normative development. A critical point, that disability is often defined as diverging from some normative expected parts. Hafer, drawing on the work of Halperstand, it tells us a sort of middle-class, heteronormative life course that is foundational in our culture. This normative course also tends to underlie common developmental models. So I'm flashing up a few here so you can quickly see how these norms manifest in models of normal development, like Erickson stages of psychosocial development, as well as Havenhurst's developmental task shown here. So in attempting to normative standards and the language and tropes around disability, Hafer also theorizes something that she calls curative time, that is so often at play in talking about disability. Curative time is not about any individual's relationship with medical interventions or an individual desire for a cure, but rather, quote, an understanding of disability that not only expects and assumes intervention, but also cannot imagine or comprehend anything other than intervention. In curative time, the disabled are passed out of time as obstacles to the arc of progress, to, again, quote, pay for. So when we look at how cure is discussed within medicine and the culture at large, it's really easy to see how we kind of lack ways to imagine a good future absent these curative therapies. And this is perhaps why many people would see a turn to one another to envision their own future as desirable. Terrorists like Allison Hafer and renowned anthropologist St. Ginsburg and Rainer Rapp have given us an activist scholarship to draw from that aims to forge an accessible and desirable future for people with disabilities as well as their families. So Ginsburg and Rapp drawing on work with different disability stakeholders describe how, quote, kinship, caregiving, and public culture are all being reorganized as the fact of disability is reconfigured over the life course. So their work is especially important for clinicians, researchers, and policymakers because they really stick to the impact of disability diagnoses on family members. As, quote, relationships and expectations are often revised, creating what we call the new kinship imaginary. As disabled can move through the life cycle, their atypical experiences reverberate into the lives of their families in ways that reframe the taken for granted assumptions. Family recognize and reorganize tacit norms about familial relations and the temporality of the domestic cycle because that culturally ordered normative life force can no longer be assumed. Ginsburg and Rapp's work shows how disabilities have this tremendous impact on family members and how families are often the main site of adaptation and support. Moving on to recommendations. What I want for clinicians working with families with CF and other variable and evolving childhood onset conditions to consider is that normative expectations around development and independence may be inappropriate and even harmful. There are a few great papers out there from childhood studies suggesting that expectations premised on developmental models that really emphasize independence may actually alienate families of children with disabilities instead of starving. For medical providers like genetic counselors and physicians let's think really critically about how we communicate about prognosis beyond that moment of diagnosis. How can we be proactive and thoughtful in communicating prognosis as a child grows up and enters adulthood especially in diseases like CF where the prognosis continues to evolve. How can we embrace a model of prognostic imagination that recognizes how ideas about prognosis impact how people envision their futures and plan their lives. For researchers and advocacy organizations designing studies and providing us collisions with critical information how can we consider the views of community stakeholders and the research that we design carry out and then communicate. For example why is median life expectancy this ubiquitous thing in CF who is it helping who is it hurting what is the point of this type of aggregate data when the disease is such a spectrum and when portions of the population now have access or lack access to targeted therapies that may really alter survival patterns. For researchers focused on social policy how can we rethink disability categories that direct things like accommodations and Medicaid eligibility so that they more accurately reflect the variable temporalities of disability. We also know that genetic testing will increasingly identify the pre-symptomatic state of fully penetrant conditions high disease risk and the mild spectrum of known conditions. Patients and families facing this type of prognostic information have unique concerns over the lifespan ranging from over medicalization to long-term care. How can we ensure the diagnoses create options rather than constrict possibilities that is how can we promote policy and societal change to build accessible futures. Thank you so much for your time here today and thank you so much to the many people who make my work possible. Magna Mukherjee is a PhD candidate in sociology at the University of California Berkeley. She studies how fertility and genetic technologies reflect and reproduce social inequities. Her talk is entitled making disability in prenatal genetic testing. Hello everyone and thank you for joining this symposium. My name is Magna Mukherjee. I am a PhD candidate at UC Berkeley. The talk I have planned today will show how disabilities are produced alongside the development of prenatal genetic technologies. I'll present data about wrongful birth and wrongful life cases in the United States over the past 50 years and show how historical legacies are intertwined in the innovation of new technologies. To start though I want to ground prenatal genetic technologies in the important history of genomic or precision medicine. So although prenatal genetic technologies serve a useful purpose and can enable important reproductive decisions it's critical to understand their historical roots in genomic medicine that has been systematically intolerant and unwanting of disabilities and diverse existences. So while history often associates eugenics with Nazism eugenics actually finds its roots much earlier in the early 1900s across the United States and Europe. So biostatisticians in the early 1900s including Francis Galton the famous cousin of Charles Darwin were deeply interested in making connections between genetics and disease in ways that created social hierarchies. They saw those with diseases and disabilities as being genetically inferior and often combined these ideas with racism to say that some existences were superior to others. And now going into the 1940s the goal of genetics thus becomes tied with these discriminatory ideas about race and disability. It's around this time that hundreds of genetics clinics and research universities start to spring up across the United States. One of the first was the Dite Institute in Minnesota founded by Charles Dite who was himself a famous eugenicist and a strong proponent of the forced sterilization laws. In addition to eugenics research at these centers early genetic counselors would encourage middle class white able bodied families to reproduce based on family pedigree charts. And you can see this depicted in the picture to your left where a family or marriage counselor advises a couple on reproducing based on their pedigree chart. Moving forward the 1950s and 1960s saw major findings in genomics research. Scientists learned that humans were typically born with 46 chromosomes that an extra 21st chromosome could cause Down syndrome. They learned how to genetically identify several conditions including Turner syndrome client filters and Taysox disease. And all these findings laid the foundation for genomics medicine as a field. But it did this in a way that also understood the purpose of genetics as preventing disability and difference compared to what was considered so-called normal existence. So when genetic technologies began to be developed around the same time these same ideas were baked into the way that the technologies were understood and implemented. Importantly all these developments were happening in the context of forceful control over reproduction. There was an idea that certain people needed to be restricted from reproducing and these were often women of color or poor white women who were forcibly sterilized. This foundation of precision or genomic medicine also brought expectations about how individuals should manage their health, how society should treat disability and how the state should participate in these agendas. So where in the past the states would forcefully carry out eugenics agendas themselves in the United States today this oneness is actually placed more on individuals almost as a moral responsibility. And this shapes how we understand disability independence and what it means to be a productive citizen. So in a highly privatized economic framework like the United States individuals are more valued if they can participate in higher degrees of productivity. And what this does is frame desired existence as embodied physical and cognitive independence and agency. Others are assumed to be socially and economically dependent and disabled for not contributing to this type of productivity. This understanding of disability of course focuses on the body rather than how social structures can be disabling. And with this the responsibility shifts on to individuals to privately manage their bodies and their health. We see this in how prenatal genetic testing was introduced as a social obligation exemplified for its cost effectiveness. In the 1980s public health messaging stated that with prenatal testing states could save up to $83,000 per child by preventing Tay-Sachs disease and Hunter syndrome and up to $66,000 per child in the cases of Edward syndrome and Down syndrome. So from their inception prenatal genetic tests were put on this pedestal because they could reduce health burdens on the state and produce more able-bodied citizens for the economy. And today this responsibility to use testing is routinely included in a pregnant person's reproductive experience. And the framing of disabilities as tragic mistakes or types of existences that are unwanted to be avoided persists. Studies show how people are labeled as irresponsible or irrational for not testing or for choosing to birth a disabled child. And this is especially true for disabled parents who can have their parental rights terminated in 37 U.S. states just for being disabled. A recent study also found that over 70% of OB-GYN physicians did not provide disability education materials to patients who had just learned that their fetus has Down syndrome. And in general people also report receiving more negative information about disabilities following a prenatal diagnosis. These systemic biases represent issues of reproductive and disability justice which remain concerns and how prenatal genetic testing is implemented today. So with that I'm going to move on now to the wrongful birth and wrongful life data. But before I do that I want to acknowledge my wonderful co-author and co-researcher on this project Zena Hamoud who is in the picture to the far right. Zena is a research associate at London Women's Clinic and a PhD candidate at the University of Exeter School of Law and that is of course me in the picture to her left. So our study started off by asking how increasing use of prenatal genetic technologies illuminates changing ideas of what makes for meaningful existence and who should be responsible for reproducing children along these lines. To answer that question we analyze how courts co-construct engagement with prenatal genetic testing in wrongful birth and wrongful life cases. We use case text which is a comprehensive database of federal and state cases. We focus on California which has a long history of eugenics abuses and has also been at the forefront of implementing prenatal genetic testing. Ultimately we analyze all wrongful birth and wrongful life cases related to prenatal genetic technologies from 1963 through 2021 at the various court levels in California as well as landmark cases across other states. So what that meant was so what that meant was in total we analyzed 37 cases 16 of which were in California. So what are wrongful birth and wrongful life cases? They're torts and basically they're similar to other medical negligence or malpractice claims where a plaintiff has to establish that the defendant physician fell short of a standard of care and that this failure caused the harm that they sustained. Wrongful life claims are brought by the plaintiff child against a healthcare provider and the negligence here is the parent's deprivation of the decision to abort or never conceive which led to the child's wrongful life. Wrongful birth claims are brought by the plaintiff parents against a healthcare provider for the deprivation of their own reproductive choice to terminate their pregnancy. So as they adjudicate these wrongful birth and wrongful life cases courts become important arbiters of how technologies should be used in relation to disabilities and how diverse existences are prioritized valued or regretted. Before diving into the empirics let's get a sense for when various prenatal genetic technologies were developed using this timeline visual. So first we can note that amniocentesis a method to test for fetal chromosomes made its way into clinics by the 1970s. At the same time the U.S. Supreme Court passed Roe v. Wade in 1973 federally protecting the right to abortions and allowing more reproductive choice which of course was recently undone. Then by the 1980s other methods of prenatal genetic testing were developed like chorionic villa sampling and maternal serum alpha-phetoprotein testing. At this time major professional societies like the American College of Obstetricians and Gynecologists also advised that all pregnant people above the age of 35 be offered prenatal genetic testing. Fast forward to 2007 they updated their statement to say that all pregnant people regardless of age be offered this testing. And soon after in 2011 non-invasive prenatal screening or a self-re-DNA often referred to as NIPT becomes available. It allows people to test for a gamut of genetic conditions including Down syndrome using a standard blood jaw from the pregnant person. And more recently we see CAPS a coalition of major genetics companies lobbying Congress to provide public funds to make prenatal genetic testing routine nationwide. The way these genetic technologies have become a common occurrence in pregnancy has important implications for how we understand disability. Keeping historical roots and disability context in mind we know that the pressures to use testing to select against specific fetuses with genetic conditions and disabilities is systematically present. And these pressures are particularly visible in wrongful birth and wrongful life cases. So what do wrongful birth and life cases tell us about changing views on disability and prenatal genetic testing? Here are some main takeaways to keep in mind as I present the data. So first although courts underscore the value of all life they frame disability and genetic conditions as inherently unwanted overall. They promote this expectation that prenatal genetic technologies should help prevent these outcomes especially as more prenatal technologies are innovated and become an expected part of pregnancy care. Secondly courts understand disability as something that is embodied that is caused by a person's physical condition rather than social or structural context. In this way disability is seen as a private burden. Parents are tasked with dutifully using genetic testing while healthcare providers are penalized for failing to identify genetic conditions. In both cases disability is seen as harmful to an economically productive or independent life. And finally with more use of prenatal genetic technologies and more conditions identified courts also grow their list of which genetic conditions and disabilities they consider to be unwanted. And as a result over time more conditions and disabilities are transformed into legally recognized injuries that warrant compensation or damages. Throughout the data will show how prenatal genetic testing has been mobilized towards reproducing and celebrating normative ability. It illuminates how testing when combined with an ESO set that values bodily ability for economic productivity can construct and sustain disability as an unwanted existence. So now diving into the data the first thing we see is that advancements in genetic technologies increase the expectations that these tools will be used to prevent disabilities and genetic conditions. Prior to prenatal screening it was really only at birth that a child's genetic conditions could become apparent. However, technological advancements brought with them increased expectations that genetic issues would and should be detected prenatally with courts becoming less tolerant of physicians errors over time. We see this first with the rapid rootinization of amniocentesis in prenatal care right around the right around the 1970s when Becker and Schwartz was being litigated. So here the plaintiff was never advised of amniocentesis to test whether her fetus had down syndrome and she was successful in her lawsuit against the physicians for this failure because amniocentesis was routinely available by the late 70s. The courts held that physicians duties had been expanded to encompass offering parents such tests to prevent genetic conditions and disabilities. Then the Gilner case was crucial in solidifying the supposedly societal interest in the proper performance and interpretation of genetic testing. The court held that quote the failure to properly perform or interpret an amniocentesis could cause either the abortion of a healthy fetus or the unwanted birth of a child afflicted with Tay-Sachs disease framing testing as a social concern and an expected part of care. Courts later also described doctors or labs testing negligence as legal injuries. In Curlender which was a very influential case that I will return to several times the infant plaintiff alleged that defendant testing laboratories caused her birth with Tay-Sachs disease. Here the lab had mistakenly shown genetic testing results that were negative for Tay-Sachs as well as other condition so the child's parents carried their pregnancy to term. The California court ended up granting the infant plaintiff wrongful life claim and Justice Jefferson also noted strong public policy considerations in recognizing this breach of duty as the proximate cause of an injury cognizable at law. So as testing becomes a more routine expectation courts increasingly consider the birth of a disabled child that results from errors in testing to be illegal harm and as technological potential advances there are more expectations there are more expectations to use testing to prevent these outcomes. Another significant aspect we've seen wrongful birth and life cases is the responsibility that parents ought to bear when raising children. This responsibility shifts based on the established standard of prenatal care at a given time but it always falls on individuals rather than public systems. So in early cases parental responsibility towards raising children with disabilities is emphasized despite availability of prenatal technologies. For example in Park vs. Neeson which took place in 1975 amniocentesis and prenatal diagnostic testing in general was not yet taken up as the contemporary center of care was just we were just a few years short of this and as a result the physicians could not be held responsible for our child's down syndrome. But as prenatal testing became the care standard courts hold physicians accountable for operating outside these bounds. This is in large part because of guidelines from federal agencies and professional societies in the late 1970s and early 1980s that stated that amniocentesis should be routinely offered to all those older than 35 years. So let's now go back to Curlender which happened in 1980 where the child was born with Tay Sachs due to a lab reporting error. The California Court of Appeal recognized that the lab had failed its duty and labeled this a quote genetic disaster. Their reasoning suggests that when current technology can reasonably promise an alternative to birthing a disabled child parental responsibility is less emphasized in the face of physicians or labs wrongdoing. There's also an important emphasis of reproductive autonomy after the Supreme Court's landmark 1973 Roe v. Wade decision. Prior to 1973 physicians were typically not held responsible for our child's congenital conditions since nothing could have been done legally to prevent the outcome. But post Roe physicians could be negligent and liable for our child's conditions. We see this in Roman v. Allen in 1979 where the defendant physician failed to perform an amniocentesis for a 38 year old plaintiff mother resulting in her child being born with down syndrome. The court awarded the mother emotional damages for her wrongful birth claim because the parents were denied the option to quote accept or reject a parental relationship with the child. So after Roe parental responsibility was seen as being unduly imposed where physicians had failed to inform parents of the option to terminate the fetus following prenatal findings. This might look differently now of course depending on which state you're in given that Roe v. Wade has been overturned. Throughout however supporting children with disabilities is seen as a private endeavor. Either pinned on individual parents or physicians and labs to use testing or provide monetary damages in cases of negligence. Lastly courts also contend with the question of damages. Should plaintiffs be awarded compensation for children born with disabilities? And although they engage this question differently over time courts consistently see disability as a less fulfilling existence which is then reflected in how they award damages. So early wrongful birth and life classes flamed all life as precious and deserving of existence. For example in Gleitman versus Cosgrove which took place in 1967 the courts reasoned that Jeffrey who was born with compromised hearing sight speech and several physical impairments would still choose disabled life over no life at all. After Roe however courts become more open to considering different qualities of existence. So recall the Berman Court in 1979 for instance they describe Sharon who has Down syndrome as having a quote defective and tragic existence. But they maintained that her existence was valuable because they compared it to non-existence. They said that she would be able to love, be loved, feel happiness and feel pleasure which was worth any suffering that she might endure. So there was this notion in early cases that life in any form is always preferable to non-life. However just a year later in Curlander it was established that wrongful birth and life cases are not about non-existence but they were about disabled existence compared to so-called normal existence. And in an award in plaintiffs damages for their child born with Tay Sacks Curlander sets into motion this paradigm where disability was seen as wrongful justifying special compensations for parents and children. Then in 1982 Turpin versus Sortini where the child Joy was born deaf in this in this case the court crystallized this notion stating that impaired life is not always more valuable than non-existence. They reasoned that special damages could compensate for expenses or anguish of raising a disabled child compared to a so-called normal child. And as recently as 2015 we've seen a court use this reasoning to award plaintiffs $50 million in damages for the wrongful birth of their child Oliver with a rare genetic condition. Taken together these judgments suggest that courts can frame disabilities as unwanted and at times a legal harm that is potentially worthy of compensation. It also highlights that parents are ultimately responsible for their disabled children as monetary damages stand in the place of robust public supports. So why does it matter that prenatal genetic technologies are shaping broader conceptualizations of disability? First and perhaps most salient is this question around abortion and reproductive choices in the United States especially given that Roe v. Wade was just overturned. Where abortion is not an option the private sphere including families necessarily assumes more responsibility in a context like the U.S. where public child care and disability supports are lacking. We can see privatized health responsibility being further amplified with even more pressure on parents to use testing and overall these waning disability and reproductive protections foreshadow greater health disparities for pregnant people and disabled communities. Next we can see the historical legacy around genetics and disability is echoed throughout. Historical roots shape how new prenatal genetic technologies are implemented towards ends that are often intolerant of disabilities. And here we can question the current practices around testing can be shifted so that ableism does not remain the status quo. Finally all the issues discussed become more pronounced as genetic technologies become a routine part of pregnancy care. We've already seen this happening with noninvasive prenatal testing or NIPT that has been implemented so widely and often without appropriately informing patients. With these innovations being so routinized in health care we need to reemphasize the need for inclusive structures that are ultimately beneficial to everyone rather than imposing genetic testing as a way to preclude certain existences. And with that I thank you for your attention and I look forward to continuing this discussion. Sarah Bergstresser is a lecturer in bioethics at Columbia University who teaches courses on disability and bioethics and mental health ethics. Her doctoral research in anthropology focused on deinstitutionalization and community health care in Italy. Her talk is entitled How Genetic Reductionism Conceals Social Determinants The Case of Down Syndrome and COVID-19. Hello my name is Sarah Bergstresser and I'm a lecturer in bioethics at Columbia University and today I'm going to talk about genetic reductionism and how it can conceal social determinants using as an example the case of down syndrome and COVID-19 in the recent pandemic. All right so over the period of time 2020 start of the pandemic it became quite apparent that people with down syndrome are at higher risk to develop COVID-19 to have severe illness and to die of the disease. So since then I've noticed the trend that health researchers continue to seek genetic and biological explanations but very few parallel attempts have been made to address social determinants or to rethink the systems that you know might perpetuate some of this infectious disease in ways that have nothing to do with biology or maybe an interaction between biology and social conditions. So I want to start with talking about combating biological reductionism biological reductionism generally would prioritize the study of hypothetical biological difference over clear examples of social inequality and I'll give you some examples of this as I go along. Genetic reductionism as a kind of biological reductionism not only reduces humans to genes so thinking of them as inherently products of genes and not much else but it actually does and has historically formed the underpinning of eugenic thinking which has produced quite a lot of really quite awful and unethical harms over time so disability studies perspective in this case can really help us to understand how by thinking about disability as not something that's an individual defect not something that's contained within a biological sort of a bound individual or within genes we can really see what's going on socially and get a better sense of you know how can we really understand and ameliorate some of these difficulties that people have been having in the pandemic and in broader circumstances so eugenic thinking disability genetics and scientific racism were very much intertwined in the 19th and early 20th centuries so right now we tend to think of racialized people and categories as being somewhat distinct from disability categories although of course there are intersectional components as well but at the emergence of eugenic thinking these things were really intermingled and the idea was very much so that there was a hierarchy in which people who are deemed insufficient whether because of their racialized background or because of a disability were thought to be for example not as good as other people and we can see how this has created harms in many different ways in the case of Down syndrome which is also Trisomy 21 an early diagnostic term was mongolism so referring to a hypothetical race of people from area of present day Mongolia in that area and this was very much tied to what we now recognize to be very offensive ideas of degeneracy or racial adivism so an idea that some races were had progressed farther than others or in sometimes quotes such as in quotes mongolian idiocy which again is very offensive now but was actually something that was debated among scientists in the 19th and earliest 20th 20th centuries so a problem with eugenic thinking is that even though we don't talk about these things explicitly and in fact disavow them a lot of the things such as assumptions or tests or diagnostic tools actually carry vestiges of this history because they really haven't been examined they've just been carried along and one of the things that I'm going to talk about here is this idea of biological deficit as an underlying inherent model for disability and things like down syndrome so the underlying assumption is that there is a biological deficit and what is that rather than starting before that and saying you know what is what are the problems without immediately assuming that a biological deficit must be the most important and the first thing to think about so a disabilities studies perspective can really help us understand first of all how individualizing disability you know not only misses the point in a lot of ways but it also allows social systems and policy makers to basically offload responsibility onto individuals so you know if resources policy makers can argue that resources shouldn't be given out because of something like perhaps quote individual responsibility or individual defect then that allows really the misappropriation of social resources to causes that you know they really should not be destined to myths and preconceived notions are also used often in science and in policy for hypothesis formation and in a lot of cases you know this can lead to exclusion and the ignoring of a lot of social determinants in favor of just assumptions about genes and how everything should really be traced back to genes so the example here is COVID-19 institutions particularly residential institutions quite a great deal of individuals with developmental disabilities and such as down syndrome are still in residential closed institutions even though there's an assumption that really was something in the past it's not completely past and in addition to that a lot of these people although we think of down syndrome and other sorts of disabilities as conditions of children you know people are in these institutions for their whole lives and so a great number of them are actually in for example in COVID terms you know very high risk ages so I want to talk to you a little bit about a study in New York which studied COVID-19 outcomes among people with intellectual and developmental disabilities in residential services and in this study they found that the median age so people in these institutions was actually 57 years so the assumption that this is a place where children might be is actually quite wrong and in fact shows us that the age here puts a lot of individuals in this higher risk age category they also found that highest association with COVID-19 infection in these cases were for soul down syndrome and other things that we know about increased age kidney disease and then finally larger number of residents in a facility so these closed facilities the more people who are closed together in these facilities the more risk there is for any one of these individuals to contract COVID-19 another really important study was done in the UK and it was a very large study of 8 million people and they did some adjustments using statistical techniques adjusted for a lot of factors to see and what are the components that influence COVID-19 related death so in this case it's death it's this particular outcome and something that's fairly striking that they found is that in their study over a period of time of approximately 6 months individuals with down syndrome were approximately 25 times more likely to die of COVID-19 then compare people that they're compared with so you know this is a fairly specific statistic but it really does indicate that this is an extremely significant difference so this is not something that's likely to be due to chance this is you know a very big finding some other things that they found were that when they adjusted for all sorts of risk factors that we know a lot about by now so age, sex, ethnicity, BMI home care residency so again they're adjusting for the social situation here they found that there was still a strong association between down syndrome diagnosis specifically in death from COVID-19 and also hospitalization so if not death so this does suggest that there might be some underlying biological factors that are important and need to be researched but they also found again after adjusting for all of these other things that death from COVID-19 is strongly associated with living in a residential or nursing home so a congregate facility where people are living and this is regardless of what their biological diagnosis would be or their age, etc and this risk is actually something around the same sorts of significance as chronic kidney disease on dialysis, diabetes and chemotherapy so some fairly well known and strong associations and so this also suggests that social environmental factors are incredibly important and not trivial because this is showing that once they've controlled for a lot of biological and demographic factors this residential setting component still makes a very big difference so a lot of these responses to understanding this risk between COVID-19 and down syndrome there are some good things that can come about this that can promote justice and equity people have after this advocated for vaccine eligibility before others based on higher risk and need but it can also lead to injustice and disparity so as I've said before individualizing the problem and making assumptions that people won't be able to follow protocols without actually taking the time to investigate whether this is actually the case or not another thing that's happened is that there was quite a lot of attention paid to COVID close clusters for example in the U.S. but the social importance let's say of different places was very heavily indicated in how they reported and how much attention was paid to them so if you were paying attention to the New York Times they had a lot of data counts nursing homes prisons colleges had their own fairly important sections and then they had another section which was called originally less noticed coronavirus clusters and then later other clusters so this really shows that even in the reporting it's acknowledged that people are not paying attention to this and then the reporting itself is also not paying attention to it in November of 2020 so really when the pandemic was very serious period in this less noticed clusters area there were at least 16 developmental centers and that is a term that usually comes that usually denotes a residential center for individuals with developmental disabilities and there were quite a number of clusters at least 16 of a time and there was one in Illinois that had 356 cases at once which was at the time similar to the highest nursing home case and there was a lot of press given to nursing homes and almost none given to developmental centers of course the numbers have changed since then but this was at the height of the pandemic so you know biological reduction events them in policy you know what does this mean for policy biological reductionism leads to misdirective policy priorities and emergency situations um and you know as I've just pointed out it was clear that there were a lot of social factors and institutional factors that were resulting in really large and serious clusters of COVID so the problem with this is that instead of immediately focusing resources on alleviating this immediate problem so helping people to not get sick or hospitalised or die there was a rush of resources into people who are looking for genetic correlates of why Down syndrome is associated with higher risk of COVID-19 now I understand of course that not everybody is going to do the same sort of research not everybody could you know change what they do geneticists couldn't go out and start doing social research but you know it really shows an underpinning of you know how scarce resources are distributed in science and policy particularly in the US you know there's there's certainly a preference to prioritize genetic and biological causality and really to ignore things like social causality even when it's actively in an emergency situation so biological and social determinants are not separately there's some fallacy that it's a nature versus nurture debate and you know that is not true nature and nurture as you might say or biology and social and environmental determinants always act together to produce all real world outcomes but there is a disproportionate research focus on biological pathways and there's really just not as much focus on social and environmental determinants even when it's obvious that these things are incredibly important in an outcome now it's not to say that genetic and physiological research isn't important it just needs to be done in conjunction with social determinant research so that you can really understand the full picture now I want to talk a little bit about how preconceived notions in this case about Down syndrome can drive you know problems in hypothesis generation and priority setting so there is a preconceived notion that Down syndrome is only a disease of children but as we've seen before you know the real world circumstances are not that at all in fact in the past there certainly was a much shorter life expectancy for individuals with Down syndrome which might seem as though it's a biological cause but in reality when social things changed this lifespan increased dramatically so around the 1970s quite a lot of social ideas changed and social conditions changed as a result so deinstitutionalization closure of some of these huge institutions happened around the 1970s and a lot of it followed the Willowbrook expose where people you know saw the terrible conditions in these places but another thing that happened was that before in the 1960s it was actually even though surgery pediatric surgery was possible it was often considered that an individual with Down syndrome who did have perhaps a heart condition wasn't a good candidate for surgery and as this quote on the screen shows all read it to you it says as surgery became more effective in the 1960s it was widely acknowledged that cardiac abnormalities commonly associated with congenital conditions such as the high prevalence of teratology of fellow and children that's born with Down syndrome so heart problems were not selected for surgery so a shorter lifespan was a direct result of people being chosen not to have life-saving surgery now this is an image that shows primarily that around 1970 the mean and median lifespan of individuals with Down syndrome increased incredibly fast and dramatically so in around 1970 the median was you know around five years old and the mean was perhaps 12 years old by 2010 the median lifespan was over 50 and the mean was around 50 so in the period between 1970 and 2010 biological underpinnings of Down syndrome certainly didn't change that fast what changed were social underpinnings including institutions and a consideration that these individuals should be eligible for life-saving surgery just like everybody else so one final thing I want to talk about a little bit is unexamined exceptionalism and this goes again back to the idea that individuals in certain categories are inherently different biologically so the assumption starts with an idea that they're different and that this difference is deficit there was quite a lot of focus again during the COVID-19 pandemic on the idea that individuals with intellectual disabilities in Down syndrome would not be able to follow masking protocols and you know certainly there should be a concern with any group and their ability to follow these protocols but the problem was that it started with an assumption of deficit and you know why I say exceptionalism is that while these debates were going on and arguments were being made that individuals would need to be monitored more closely individuals Down syndrome at the same time the general public was doing an incredibly bad job following masking protocols this is an image that shows that huge swaths of the country under the criteria of chance all five people are wearing masks and five random encounters huge swathes of the country of the U.S. are about 0% to 30% there are areas mostly in large cities the east coast California and New Mexico Texas border area which are in the 62 even 100% but you know if we're going to start from an idea of deficit for individuals disability and not understand that also that you know these people might actually be better than the general public we're making policy making from an assumption of genetic and biological deficit rather than actually understanding what's going on so how can we do non-rejections genetic research genetic research just need not erase social determinants and a practice of statistically controlling for social situations so that you can have a clearer genetic or biological outcome might make your paper look better but in reality it means that you're capturing less of the real world and you know scientifically you're hiding things from your research that in fact you really should be paying attention to if what you really want to find out is what's going on in this situation reductionism and reductionist approaches erase obvious connections between COVID-19 infection and under resourced residential facilities with carceral components by which I mean sometimes they are locked people cannot choose to leave even if they are at very high risk for an infection and another problem was that preventing family contact during this period of time is actually the sort of situation that leaves to abuse and neglect in this sort of facility and as we saw in the past with Willow-Ruck the less visible these places are the more risk there might be especially in times that are very frustrating and under resourced oftentimes the family members are the ones who are paying attention to the conditions so a few conclusions biological reductionism and medicalization so the tendency to make everything into a medical diagnosis rather than an aspect of difference continue to be used to conceal or deny systemic structural inequality for individuals with Down syndrome and other disabilities so instead of examining problems such as locked residential facilities which lead to infection clusters a focus on well what's the genetic difference actually conceals these are real world immediate problems inequalities routinely normalized based on presumed or hypothetical biological differences while structural and social constraints are often dismissed or ignored again making a distraction away from real policy changes that really do need to be made second conclusions awareness of social determinants of disease is really necessary for disability justice equity and inclusion and genetic reductions and threatens the integrity of scientific research since it relies on preconceived notions for hypothesis generation and a lot of these again are unexamined vestiges of eugenic thinking even though the scientists you know making these hypotheses I would say certainly in most cases don't know this they don't realize this but because they don't realize this they think of it as a neutral assumption rather than something that really needs to be examined and this slows the understanding of real world complexity and the interactions between genes and environment so thank you very much and my contact is my email is up on the screen Nina Rosner is a postdoctoral fellow in the NIH department of bioethics her research is focused on the ethics of reproductive health policy particularly in relation to disability genomics and emerging technologies her talk is entitled genetics at the intersection of reproductive justice and disability rights rhetoric and practice hi my name is Nina Rosner I'm a fellow with the a department of bioethics at the national institutes of health who are an independent academic department within the NIH clinical center so before I start I'll just say that the views expressed in this talk are my own they don't represent the position or policy of the NIH DHHS or US government so since prenatal diagnostics first became available in the 1970s information available to prospective parents has been used to justify reducing access to abortion care and restricting reproductive choice so today I'm going to be focusing on abortion restrictions called genetic selective abortion bands and those are bands that prohibit only abortions that are sought because of a prenatal diagnosis of disability or genetic abnormality so a close reading of the texts of these bands and the rhetoric surrounding them reveal that genetic selective abortion bands really weaponized genetic testing to advance abortion restrictions in ways that are ultimately at odds with the interests of the disability community in a post-dobs world this nexus of reproductive policy and disability rights has never been more important we see deep red states passing extreme abortion restrictions I mean the debate is going to move to more moderate states and abortion activists are going to have to win over people who are otherwise supportive of more pro-choice agenda there are also several state constitutions that prevent outright abortion bands in which case selective abortion bands can become tools to support those constitutional protections and this is all happening at the same time that we're poised to see a radical expansion in the kinds of information available through prenatal testing so to analyze these abortion bands in the disability rights context I'll first provide an overview of prenatal genetic testing and genetic selective abortion bands I'll then outline the arguments used to support genetic selective abortion bands I'll provide an analysis of the rhetorical and practical issues with those bands and then sort of wrap up with what this all means for disability rights so beginning with a brief history genetic selective abortion bands as I mentioned prohibit abortion sought based on a prenatal diagnosis of disability or genetic abnormality there are structured around penalties for physicians and so these laws are not going to punished women who are pursuing abortions but physicians who violate these laws might be subject to fines even jail time libel and civil actions and may be subject to professional discipline including losing their license to practice and over the past decade you've seen 30 of these bills introduced in state legislatures six have passed prior to DOBS most of those bills were enjoined so they were not in effect but we're going to start seeing probably over the next year different laws go into effect so I'll note for the purposes of this presentation I'm focusing on bands that prohibit abortions based on disability or genetic abnormality pretty broadly defined there are states that have passed similar legislation that ban only abortion sought on the basis of down syndrome so we'll give a brief overview of prenatal testing so you can see that interest in these bands on the part of anti-abortion advocates has really moved in lockstep with advances in prenatal testing over time so beginning in the early 1970s new diagnostic technologies gave prospective parents of opportunity to learn genetic information about future offspring really for the first time advances over the long decades made prenatal testing increasingly common used to identify genetic disorders and fetal malformations by the early 2000s and we're seeing these technologies really become a routine part of prenatal care and that's reflected by that 2007 American College of Obstetricians a gynecologist recommendation that all women are screened in pregnancy and not just those that would historically be considered high risk things like older age so a sea change really comes in 2011 with the arrival of non-invasive prenatal testing or NIPT and this offers screening for chromosomal abnormalities and certain inherited disorders early in pregnancy with just a routine blood draw and I'll note that that is screening and not diagnostic and by 2016 American College of Medical Genetics and Genomics as well as American College of Obstetricians a gynecologist I recommend that NIPT be offered to all pregnant women outside of the clinical context and commercial providers are already offering NIPT to screen for a growing number of genetic conditions looking towards the future new means of genetic analysis are set to radically increase the amount of genetic information available to prospective parents and this is going to include information about less serious conditions non-medical traits things like height or you can match a sexual orientation so moving to genetic selective abortion bans how they develop going all the way back to the 1970s the first reason based abortion ban was based on the sex of the fetus so her prohibiting abortions based on the termination of sex those were only ever passed in two states but we see a resurgence of interest that doesn't come until 2008 so that's just one year after the ACOG recommendation about prenatal screening and anti-abortion groups began discussing abortion prohibitions based on disability and genetic abnormality at that time it really was just discussion it wasn't a serious policy priority but sort of the first time you're really hearing about it and then in 2011 same year that NIPT becomes clinically available the anti-abortion group Americans United for Life released the first model legislation banning genetic selective abortions following year Missouri was the first seat to take up that legislation the first ban was passed by North Dakota in 2013 and again we see what I think is a reaction to expanded uptake of NIPT in 2016 with that recommendation which I think mirrored sort of an expansion of uptake generally 2016 was the year at the single most ban bills introduced into state legislatures prior to 2021 so now that we're on the precipice of this expansion of genetic information available via prenatal testing we're seeing new record for most bills introduced so looking more closely now at what the bans actually say I'm going to use this example text from Indiana's law it's generally representative of laws proposed and passed in other states and the key provision prohibits a physician from knowingly performing an abortion the pregnant woman is seeking solely on the basis of a diagnosis or potential diagnosis of down syndrome or any other disability so I want to point out two parts here first is this incredibly expansive language so we'll get any other disability it's defined as any defect disease or disorder that is genetically inherited and other laws use terms like genetic abnormality or abnormal gene expression that are even more broad and then second even more expansive the law applies in the case of a diagnosis or a potential diagnosis meaning the presence of some risk factors indicating that a health problem may occur so this is really important in view of technologies like NIPT which as I noted is a screening test so it's not actually diagnostic but it would still fall within the scope of these laws and then when you think about the future we're going to see things like polygenic risk scores which would only provide information that's roughly predictive of a fetal trait but the way this law is written and other laws similar it's going to be broad enough to encompass that kind of information so now I want to sort of break down the disability rights rhetoric that's been used to promote these bills and more precisely delineate the arguments that are being used and this is based on documents from the legislative process of subsequent litigation testimony from committee hearings statements by bill sponsors all sorts of things and the first argument I will talk about is the discrimination argument this argument claims that each genetic selective abortion is an act of discrimination against a particular fetus so every individual abortion offensive to an individual fetus proponents of this view talk about GSA bans in comparison to laws like the Civil Rights Act of 1964 the Americans with Disabilities Act sort of talk about them like they're just a logical extension of kind of anti-discrimination law that already exists in this country underlying this argument is the claim that when a genetic selective abortion occurs a fetus is being deprived of its right to be born on the basis of disability next is the expressivist argument which posits that genetic selective abortions are sending a message that the lives of those with disabilities are less valuable than others furthermore if states fail to ban genetic selective abortions they're essentially endorsing that message and in doing so they're stigmatizing disability and harming disabled individuals in the disability community at large so you can see that sort of goes a step further than the individual abortion in individual fetus and finally is the eugenics argument this argument frames genetic selective abortions as a means to eliminate disability entirely it very frequently is employing analogies to eugenic practices of the 20th century the idea is that termination rates following diagnosis of a fetal disability will be so high that you all see virtually no births of babies with disabilities the disabled population will dwindle of the three arguments this is the critical legal argument with states claiming that preventing eugenics is a compelling state interest advanced by these bans and so particularly if you're looking at states where it's a constitutional issue this is going to be really important there's also sort of a secondary version of this argument that views selection against disability as opening the door to selection on the basis of all kinds of other traits including those non-medical traits I mentioned in ushering in this future of designer babies and this fear is directly related to advances in prenatal testing which again are poised to provide information about those kinds of traits that we don't currently have access to so these two parts of the eugenics argument sort of get tied together so having identified those three core arguments I want to quickly analyze the rhetoric and see if it actually aligns with the disability rights agenda as I'll explore in this section even where arguments really resemble arguments made by disability rights advocates ultimately these bans just can't be justified solely on the basis of disability rights and ultimately they frequently undermine disability rights and are at odds with the goals and values of that movement so going back again to the discrimination argument the claim is that genetic selective abortions are discriminatory because again the individual fetus is being denied something it is entitled to and it's being denied on the basis of disability and so we can see in this example what's being denied is the opportunity to be born so unless that right to be born arises only in the case of a genetic selective abortion a claim that is not advanced by to my knowledge any proponents of genetic selective abortion bans it would logically extend to all fetuses it doesn't make sense that you would only have a right to be born after you're discriminated against so to prohibit abortions only when a fetus is targeted on the basis of disability would be denying every other fetus protection of that right instead the discrimination argument really seems to be focused more on motivation behind the decision to terminate not the termination which brings to mind hate crime laws but unlike these laws hate crime laws reserve punishment for cases in which the underlying conduct is itself criminal so not just the motivation ultimately it really looks like these laws are kind of a backdoor to making the anti-abortion personhood argument and you can make a weaker version of that argument but that would still require that the fetus has some moral and legal standing that allows it to have a claim against the person which it is just stated so next is the problem of exacerbating expressivist harm the expressivist message of genetic selective abortions is driven in large part by the perceived motivations behind those abortions by removing genetic selective abortions from the larger context of social, political, economic and individual factors that we know influence those decisions the rhetoric and support of genetic selective abortion bans characterizes them as motivated by animus or intolerance of disability and so by strengthening that association of selective abortions with negative attitudes towards disability the rhetoric might actually worsen that perception and worsen the expressive harm so turning to the eugenics argument I want to talk about that comparison to 20th century eugenics and proponents rely heavily on comparisons with that 20th century eugenics movement in order to frame the bans as anti eugenic measures the invocation is really emotionally powerful bringing to mind the atrocities of the holocaust and the stateside efforts at so-called racial betterment so it's a really powerful emotional argument but genetic selective abortions today just have little in common with those eugenic practices so first genetic selective abortions are the private decisions of individual women they're not a part of a centralized campaign to reduce or eradicate disability in the population that's not to dismiss the effect on the incidence of disability more selective abortions means fewer births of babies with disabilities and disability rights have advocates have raised those concerns in response advocates have focused their concerns on the ways in which a genetic testing is offered how results are communicated and that's something I will touch on in greater detail later but proponents of these bans really have not demonstrated any interest in policies to address those issues so none of these laws were introduced as part of a disability rights agenda they were not introduced in conjunction with policies that would address those other issues furthermore the rhetoric used by proponents of genetic selective abortion bans often contradicts the view that preserving disability in the population is itself a valuable form of diversity they frequently make references to treatments and cures for disabilities and that really seems to reveal that the primary concern is not the prospect of eliminating disability but abortion as a means of doing so so next I want to talk about just that expansive nature of these laws these genetic selective abortion bans encompass all sorts of genetic conditions genetic condition is not synonymous with disability particularly taking a more socially oriented view of disability the genetic basis of condition is really irrelevant so there are all kinds of conditions that might be considered disabilities that are not genetic on the other hand there are all sorts of genetic conditions that we would not consider disabilities and these laws don't distinguish disability from any number of other identifiable genetic abnormalities including those that would only be predictive of future traits and whether referring to disabilities or genetic conditions generally the laws encompass conditions with really widely varying prognoses in terms of suffering morbidity or early childhood mortality and adverse events for the mother and the rhetoric used really obscures those differences in ways that are particularly important in the context of disability rights and an example of this and it's everywhere you look in these debates is that advocates for genetic selective abortion ban really primarily talk about down syndrome and they tend to present this idealized vision of raising a child with disabilities and that represents the experiences of many families and it's important but it ignores the reality of life with all kinds of other disabilities and the challenges that are encountered by many individuals with disabilities and their families so the final rhetorical and textual issue I want to touch on is the laws purported focused on heritability going straight to the legislative text most bills limit their scope to genetically inherited disabilities while also explicitly listing non-heritable conditions as examples of covered diagnoses the tension in these laws in that text reflects tension between the different arguments used to justify them the discrimination and expressivist arguments apply with equal horse to heritable and non-heritable disabilities so based on those arguments it doesn't really make sense to limit bans to inherited traits the eugenics argument on the other hand is most forceful when you're talking about heritable conditions especially as proponents explicitly cite the threat that disabilities would be irreversibly eliminated from the population and so inclusion of conditions like down syndrome that are overwhelmingly sporadic undermines that central legal justification that relies on the urgency of that threat so now I will move to the practical implications of these laws and I will preface this section by recognizing it is quite evident from the drafting of these laws that they would be incredibly difficult to enforce as I mentioned they have not most of them have not been in effect because of row so we haven't really seen this in action but penalties require proof of the woman's reason for seeking an abortion and proof that the provider knew of that reason so that's going to be generally pretty difficult to prove a lot of the laws require that it was the sole reason but the effect of the laws are still very real for reproductive health care for disability rights even the threat of litigation has a chilling effect especially in the really uncertain legal landscape that we're in right now so one major consequence is that these laws will reduce access to reproductive health care and disrupt the important doctor-patient relationship the quote here comes from the American College of Obstetricians and Gynecologists it says that reason bands represent gross interference in the patient-physician relationship creating a system in which patients and physicians are forced to withhold information or outright lie so in particular when it comes to prenatal testing and pregnancy terminations this can leave a lot of patients in the dark without access to proper care so healthcare providers might be hesitant to provide abortions to someone who has received a diagnosis of a fetal disability or has screened high risk out of an abundance of caution because they don't want to be later accused of having known something and this is going to broadly curtail access to abortion providers are also going to be hesitant to discuss the results of screening and diagnostic tests for fear of receiving information that would put them in the position of denying care or violating the law should the patient decide to pursue an abortion and then on the other side of that you have women who are going to be deterred from seeking information and guidance whether that's from doctors genetic counselors out of fear that they might be denied the option to terminate if they reveal something about their motivation in those conversations and we know that access to professional counseling is associated with lower rates of termination following diagnosis of a disability and more information about raising a child with a disability has a potential to alleviate a lot of the uncertainty misconceptions in fear that factor into some decisions to terminate a pregnancy furthermore arguments used to support these bands suggest room for much more sweeping restrictions on reproductive care both the discrimination argument and the eugenics argument really apply at all stages of pregnancy and providing justification for abortion restrictions from conception and this is another example of how the bands can be used to circumvent both legal and political barriers to really extremist abortion bands and the failure of the eugenics argument to draw a clear line between abortion and contraceptive use both of which might affect the prevalence of disability and aggregate is particularly notable given that both played a central role in the eugenics history that is so frequently referenced so you can repurpose almost the exact eugenics argument articulated by genetic selective abortion band supporters and use that to justify restrictions not just on contraceptive use other reproductive care in genetic technologies things like pre-implantation screening in the case of in vitro fertilization or even something like carrier screening it's going beyond the impact of genetic selective abortion bands themselves even just the use of that disability rights rhetoric to justify them has significant implications for the ways in which women access and interact with prenatal testing and ultimately can act as a barrier to passing policies that enjoy broad support in the disability community so this is only intended to be a rough account of the concerns that many disability rights advocates share about prenatal genetic testing sort of the overarching concern it's the effect of prenatal testing becoming a routine part of prenatal care leading more women to undergo testing without consideration of its implications and without adequate information or even out of pressure coinciding lack of patient centered counseling that might cause abortion to become the default response to a diagnosis of disability and then that combination the presumption of testing and termination could ultimately stigmatize the choice not to test or the choice not to terminate if it comes to be sort of views that those decisions are a choice not to avoid disability when you had the option to and these concerns also relate to tension between the disability community and genetic counseling profession stemming from early associations between genetic counseling and eugenics so some concerns persist that genetic counseling as a profession exhibits bias against disability in part disability rights advocates worry that a tendency to describe disability in terms of medical and functional impairments both within genetic counseling and more broadly without information and more positive aspects of disability and available resources may really deny women of opportunity to make a fully important decision about raising a child with a disability so while the disability community generally shares those concerns about the consequences of prenatal genetic testing there's a divide and support for genetic selective abortion bans as a means to address those concerns but the division is not symmetric the academic disability rights community has been very forceful in rejecting bans as an appropriate policy response in addition to the concerns I've already discussed there's a lot of concern in academic community that these bans interfere with other ethical prerogatives like bodily autonomy where you see the divide a bit more pronounced is on disability advocates who articulated a broader range of views but I think it's important to note that none of these bans have been drafted or introduced by disability advocates very few advocacy organizations have voiced public support for bans and you have seen pushback from a lot of advocacy groups and these bans and the rhetoric surrounding them don't exist in a vacuum people's views around reproduction and disability are frequently tied up in their political identity the way that the rhetoric around these bans frames the issue really pits disability rights against abortion access such that you can be for one or the other but you can't be for both and it presents a false choice for people these arguments also undermine reproductive justice more broadly because not only are they denying women the choice of whether or not to carry pregnancies they're treating all of the social economic and political circumstances around reproduction as just irrelevant to this issue it presupposes a really traditional view of family and that ignores all kinds of non-traditional family structures different individual needs and desires and all these things in the context of reproduction and rather than some sort of collective action the future disability rights is really placed on the backs of individual women without concern for an opportunity for them to determine for themselves whether when and how to have a family so by politicizing disability rights the legislative focus on genetic selective abortion bands disrupts coalition building among constituencies that agree on a range of policies so following are a few of the policy priorities put forth by disability rights groups that have also been endorsed by all sorts of stakeholders physicians genetic counselors reproductive justice advocates among others so at a very basic level providing more women with access to high quality genetic counseling could go a long way toward combating concerns about prenatal testing expanding high quality counseling and also calls for reforms within the genetic counseling profession including training that better equips counselors to support patients combat misperceptions about disability and emphasis on patient centered counseling can also provide a more holistic understanding of different diagnoses and I put that in the context of families individual circumstances and one of the most straightforward ways to advance disability rights and make the decision to raise a child with disability possible for more families that would be to provide additional support as those families face barriers like increased medical costs and caregiving needs as it stands today many people may not feel like they even have much of a choice when it comes to terminating a pregnancy not out of prejudice against disability but for lack of necessary resources so these are just a few examples of targeted policies that both support those with disabilities and increase the ability of individuals to determine their own reproductive future so despite rhetoric aligning the campaign for genetic self-deficient bans with the disability rights movement the arguments and practical implications of the push for these bans are much more closely aligned with an anti-abortion agenda the rhetoric and legal strategy weaponizes genetics in particular advances in prenatal genetic testing and to promote abortion restrictions in ways that pose a real risk to the disability rights movement the push for these bans disrupts political coalitions and deprioritizes popular policies that we know would make raising a child with disability a more feasible option for families and we know it would help the disability community and it's those kinds of policies that are more likely than bans to actually reduce the number of selective abortions if that's your end goal so its developments in prenatal testing points to dramatically increase the amount of genetic information available to prospective parents in the near future at the debate over genetic selective abortion bans in use of disability rights rhetoric in service of restrictions on reproductive rights is likely just beginning so it's not sufficient to dismiss these bans as ineffective or the rhetoric is frivolous we have to take very seriously the threat that this strategy poses and we have to protect reproductive justice alongside disability rights thank you very much and I look forward to the Q&A this is Christopher Donahue speaking it is my honor to introduce Eric Garcia as the moderator for the next question and answer session Eric Garcia is the senior Washington correspondent for The Independent he is the author of We're Not Broken Changing the Autism Conversation which was released in August 2021 by Mariner Books Garcia describes We Are Not Broken as his quote love letter to autistic people he describes how autistic people have been forced to navigate a world this is a quote have been forced to navigate a world where all the road signs are written in another language he previously worked at The Washington Post The Hill Roll Call National Journal and MarketWatch you can follow him on Twitter at EricMGarcia over to you Eric thank you very much and thank you Rebecca, Megna, Sarah and Nina for your incredible questions I'm going to try to keep my questions breathe in more just try to facilitate conversation and interchange between all three of you or all four of you because nobody ever said oh the moderator did such a great job but I mean I think one of the things that I that I notice when watching your lectures and kind of getting prepared for this is that Nina and Nina, Megna, Rebecca and Sarah it seems like a lot of the focus when it comes to eugenics seems to be focused on genetic determinants and not on social determinants on how this create on whether life is quote unquote worthy or worth living for people with disabilities what do you make of the way that we measure quality of life and how a lot of it we tend to focus just on the genetic factor not on the social factor anybody can I mean I can start it speaks to what I was talking about a little bit yes exactly I mean I think that again there are a lot of assumptions embedded in the idea of what makes a good life and you know I'm sure you know that so the the idea of quality of life as measured externally emphasizes a lot of things that perhaps in a capitalist society is productivity or sort of speed production and I think that we often conflate the idea of quality of life with sort of images of what somebody should be doing for others rather than actually asking people you know about their own quality of life but also understanding that what they are saying is indicative the quality of life that they have within the social circumstances that surround them as well so you know I think that the biological reduction isn't very much goes hand in hand with a productivity mindset and it's easy to think that science and a lot of other social and cultural forces are separate but I think that you know if you look at them closely you realize that they're not thank you very much anybody else yeah I can jump in I think you know largely what I was talking you know in my talk it was also really focused on this definition of qualifying what makes for a good life based on as Sarah is saying this understanding of productivity a particular understanding of independence a particular understanding of agency and very narrowly defined around what our you know normative social and economic involvement the expectations around what that involvement needs to look like and I think there's also this tendency of when we talk about genetic conditions or talk about at least those that are diagnosed prenatally is kind of discussing right the worst case scenario that's kind of what I think a lot of providers will gravitate towards in terms of asking patients what are you okay with the worst case scenario and that is a really problematic and herval way to present what like the varying ways in which a condition or disability can present itself and I think Rebecca your talk was so perfect on that of like the changing nature of some of these experiences and kind of holding it static to a worst case scenario and judging life quality or you know what makes a worthwhile existence based on those types of definitions doesn't take us very far and continues to treat disability as it's very permanent very static experience does anybody else before I go because I don't want to make sure I want to make sure I'm not interrupting anybody okay that leads me to oh sorry um go ahead just to sort of mention the flip side of that worst case scenario when you hear people talk about the best case scenario it is then defined in terms of someone who is productive and someone who is valuable to other people rather than intrinsically valuable themselves and not talking about quality of life in the way that people talk about their own quality of life so it's sort of whether you're talking about best case or worst case defined and terms that I think are really problematic and are not useful thank you I thought that sorry I was just like work so on top that one of the things that was really interesting to be about both magna and uh no no I don't have my quote my question's in the wrong order again one of the interesting things to me Rebecca was your talk about economic productivity as bodily independence versus disability dependence and I think that that also kind of goes with Sarah's with all of your talks about how worth and value are really embedded in this language that we still use today so with that in mind I think I think the what I what I want to know is in what ways I think I think we see more of that these days with with things like hashtag the grind never stops and now there's all this panic about things like quiet quitting how do we shift the paradigm to show that people's about life value and their quality of life is inherent and isn't measured by how much they quote unquote grind I don't know that I don't know if that makes sense it makes a lot of sense and kind of following up to some of the answers from the last set of responses these ideas about sort of what is normal and desirable and important about life like economic productivity also factor into how people are socialized and even in like a clinical sense I think in CF there's been a big push in a lot of transition models like towards complete independence taking care of yourself entirely and it's so inconsistent with what has historically been a you know very progressive disease with tremendous time demands and so I think we really need to start you know in childhood and in thinking about how adults living with the condition presently are living are many people needing to be on disability there's that that also that issue I mentioned where there is like no middle ground and options for people who want to contribute and feel better and enjoy their lives more by contributing in a work sense but then are limited in terms of the types of insurance they can get if they do work and so I think we need that type of structural change to come first or to come alongside this sort of shifts in how we think about development and what matters in socializing and helping children grow up and enter adulthood with these types of conditions um I think that's you know extremely critical starting point and why I think it's important that we think about disability from this temporal perspective as fluctuating and requiring different supports yeah so anybody else yeah I was just gonna maybe build on that a little bit as you know I think there's also just generally sort of taking you know taking an understanding of ability that is not embodied and sort of understanding ability to its varying extents as something that is always situated in a particular context in a particular set of social arrangements and depending on those arrangements right like be it structures be it accessible technologies be it accessible working arrangements whatever those arrangements are whatever those kind of like the arrangements around or the context around a person is contributes so much more to the extent of ability that is that allows them to participate in the way that they want to in society and I think kind of making this shift from seeing ability as something that is necessarily embodied that is necessarily geneticized and determined by one's genes and kind of shifting more to understanding it as a set of arrangements as a set of contacts that can be enabling or disabling in various to various extents is is a shift that we need to see happen more across you know laws policies things like that anybody else this is a great conversation if I could just add a concrete example that I think builds nicely on my comments but also Sarah's work COVID was a time to see that difference like you showed between like genetic versus social in CF it's a very different story where people with CF at baseline have worse experiences from all viral insults and also have been socialized to socialized to be pretty good about avoiding germs so we saw less exacerbations during COVID in part for medicine but also because people could get accommodations you know to be at home to do their work to get schooling absent those exposures so I think it was a really critical lesson that I hope moves forward in terms of an easy accommodation that we all did and that could continue for people who need it and who will yeah have different abilities when that social changes me it's fantastic any any okay the next thing I think the other important thing is that Nina and Meghna I really enjoyed both of your conversations about about reproductive care reproductive justice and abortion I think one of the things that stood out to me when watching both of your presentations was in terms of cases of wrongful death and wrongful life um and also in these abortion restrictions one of the things that interested me the most is that we're talking about people with disabilities without including them in the league in the in both these cases these are very legal things these are not necessarily medical discussions um it seems like there is not an inclusion of people with disabilities and actually the law making and could you talk more about that and how the the making of these laws not including people with disabilities leads to adverse effects I guess I can talk a little bit about sort of the law making process please do sorry for my asking this question um select of abortion bands and it really is me and I mentioned a little bit that it was um sort of started with model legislation that was drafted by an anti-abortion group and then just sort of carried over state to state and sort of changed a little bit at the margins but there was not in any of the states thus far that I have introduced them or passed them really an effort to assess the needs or desires of the disability community and it really is stunning when you read transcripts of debates and you look at committee materials and things like that from the legislative process there's just like a total absence of people with disabilities and there's just so much talk about like you said about the community and without inclusion of the community and I think it gives a false sense of sort of where this is coming from and what it can accomplish when you don't include people who would actually have perspective on that and I think it really shows in how the laws actually function Yeah and I think you know specifically talking around like wrongful birth and wrongful life cases I think the nature of I think the nature of the way that these cases play out right it is court sort of interpreting technologies it's courts interpreting how should these technologies be used towards what end and in those processes it's actually when you know when you read the court the transcripts of judgments it's quite jarring because people who are or children who are disabled whose parents are bringing these suits on their behalf are sort of made to put their children almost on exhibition to sort of say you know to kind of use to kind of use and promote again this idea of embodied disability and sort of looking at disability as this spectacle and I think the nature of course of these of this particular you know these particular torrets is again like trying to place individual blame for these types of for these for a disability as a type of unwanted outcome and so we're not the way that you know plain tips if you will the way that their voices are included in these adjudication processes is perhaps even more marginalizing to disability justice conversations and to people in these communities because of the way that they're made into spectacles because of the way that they are kind of you know this process really emphasizes individual blame for disabilities in a particular way I mean I and all of that said I think there is recently we are we are seeing kind of more voices in more voices of you know disabled communities being a part of lawmaking I think the I'm thinking on I think nothing without us the movement in the U.S. that's like that's a big stride that I think we're seeing now but it needs to shift so much more we need to have more of those conversations I think also fundamentally restructure the way that right these the way that one can even claim damages for a child with disabilities the way that that process situates disabilities on a systems level needs to change as well certainly anybody I saw some people motioning it does anybody else want to make anything or going on the next question sorry so one of the other things that was really interesting to me was this individual back down Nina and then Rebecca to another extent all but all of you talked about this kind of individualization of of for disability and making it a very very private matter but then at the same time it seems like one of the real paradoxes is the individuals have to individualize their care they're asking for help they're asking for accommodations but then there's also this collectivizing there's this there's this rhetoric of collectivizing of this costs too much for the state it costs too much you see this a lot with talking about home care it costs too much what do you make of that paradoxical language of collect of individualizing care and collectivizing the talk of birding I don't know if that makes sense and anybody could go I mean just briefly I think that actually that there's not so much of a paradox in that because I think that the idea of individualizing what you call disorder and sort of attributing blame is actually part of the same process in the sense that you're saying that it's sort of it's it's these people are in some way if not directly blame worthy and at least individually responsible for their own purported deficiency and that they as sort of an other category are therefore detrimental to the in group category and I think it's part of the same process and I also think that as I'd mentioned that's part of a process whereby then policy and public resources are then given elsewhere in the sense that once you've attributed blame to certain category of person that's part of establishing that they don't deserve public resources and I think of that that is all kind of a connected system in my view anybody else want to talk about the collectivization or okay I want to take some I want to take some of the questions from some of the audience if that is fine with any of you there was this one question from David Wasserman saying I'm curious Sarah and the other panelists what you think about the prospect of fetal medication for Down syndrome that would accelerate neurodevelopment prenatally what would such medicate how would such medication be problematic even if they were effective in increasing cognitive development with that significant burden or risk of child with a mother I guess I can go first but again briefly I think first of all just I'm curious about this hypothetical medication I think that the assumptions of a lack of burden you know that there's certainly some criteria and upon which that's based and we don't necessarily know what they mean by lack of burden or lack of risk and also I wonder if this medication is so is in some sense so great why doesn't everybody just get it why is it only limited just to certain sorts of people if it's riskless and something that we purportedly all want so it's a hypothetical definitely okay my apologies shoot I keep on pressing the mute button I'm sorry one of the things that stood out to me was that much the standards about quality of life as we know it were written by people who are not themselves disabled this goes to the legal discussion one of the ways that they can be included and actually writing these standards now can they or is it or is our language and the paradigm so embedded in how we understand disability that we need to start over how do we work within systems that we're so we're ableism it's kind of in root and branch and this is for anybody I can say for in the context of genetic selective abortion bands I think my feelings on them are fairly clear but I don't think a discussion of quality of life has a role there but where it does have a role is how we address prenatal testing outside of that context and sort of how we're able to educate people and communicate about disability and I think that's really where we ought to be putting the focus a lot of that has to do with genetic counseling I don't think it's limited to genetic counseling especially it's not everyone does or is able to access that but I think that's really where the push has to be and I think there are a lot of questions on the best way to do that but I I think it's doable I think also yeah adding to that I think also shifting from seeing disabilities or supporting those with disabilities as a private burden as a private responsibility shifting that to questioning why that is not a societal responsibility why is that not a public responsibility and I think moving from constructing sort of private interests you know malpractice like wrongful birth and life I think are a great example of this because they are really malpractice claims that are situated and trying to get like you know private resources for families to support their children when indeed it's sort of a result of not having an adequate public support system for those with disabilities right and so they're kind of making that transition and I think of course key to that transition is significantly and meaningfully engaging community like the disabled communities in making that shift yeah I'll stop there no that's really important and I hadn't thought of it that way I think that's really interesting how like the demand for public for private resources is because of a lack of social safety nets on top of that I think one of the things that it really interested me and Rebecca this might be more for you and this might be for everyone is that but anybody can comment is that you mentioned that is that you talk about prognostic imagination and how for some people was like wow you could live to be 30 or 40 and then others was like wow I'm going to die really so it's this but I think it's also integrally important we talk a lot about nothing about us without us and so if you have mentioned it in what ways can prognostic imagination and the kinship you mentioned lead to a type of advocacy that is more inclusive and allows for people with disabilities to have stakeholders and kind of push back on the and push back on these very ableist systems and Rebecca it's for you but I see a lot of you nodding so any of you can come come on in well I think that this this is you know happening to an extent with NCF I think the conversations earlier about sort of the differences different disabilities and universalizing disability are also really relevant here personally I think in genetics we're at a moment where there's a lot of groups focused you know very much on their disease specific needs where there's a lot of overlap and parallels and then actually my next project I'm trying to study like a number of these evolving pediatric conditions to draw attention to those parallels that are sort of social and pull us away from just the specific medical needs of patients so I do think that bringing people together within these disease categories or condition categories is already happening and I think it's a really fruitful space that's not been sufficiently mined from a research perspective I think so much of what we've done focuses in CF on kind of younger individuals and doesn't look at the people who have survived as sort of a key frontier for figuring out what makes the most sense what is necessary and what would be best for later generations but my hope in my next project my hope in having gatherings like this through an HGRI that we can see more commonalities across groups somebody asked in the chat whether we're sort of pitting congenital versus acquired disabilities and like where does aging fit I hope my talk showed that like I see aging is on the continuum of disabilities like CF and CF is impacted by aging and actually if we have a society that more readily accommodates and sort of organically accommodates without requests people with these types of disabilities it will be better for people who are struggling to raise their kids alongside a career it will be better for people who are aging whose parents are aging right there's tremendous needs that are just across society that are in some ways just most pronounced within these lifelong conditions I see a lot of nodding along does anybody want to add anything I mean I was just going to emphasize Rebecca that point is so important I think these the idea that you know these public safety nets would really only benefit this you know the disabled community is is such a fallacy because those types of accommodations those types of supports would be beneficial society wide right these are at these having more inclusive structures having more inclusive systems it is advantageous to everybody it is advantageous to everybody to have structures that promote diverse existences and so I think I mean that's also another kind of like paradigm shift in thinking right like thinking moving from seeing supports as just exclusive to one population to seeing them as a society wide benefit yeah Rebecca I think your point about right it would it would benefit people who are trying to raise children alongside careers in general is such an important and I think like generally appealing kind of point to make around some of these things as well and you know hopefully kind of change the thinking to just much broader public support I can think we go ahead Sarah I just want to say that I just want to say I really appreciate the the sort of temporality perspective and I think that it does tie into and some of the things I was talking about with Down syndrome or even autism or other things where which there's this imagination of it being something that affects children and then it's sort of the children are thought of in relation to their parents rather than as adult individuals who are sort of speaking for themselves that that is and that is incredibly important and I think that was one that was one common strain was that we we tend to and on top of that I think that it also you mentioned that and I think it goes to the point that I think that we see dealing with children is easier because we see children as angelic and young and innocent but whereas you know it's a lot harder to care for or like we tend to pass judgment more on disabled adults than we pass on disabled children I think I'm going to get off my soapbox because I want to get on get on to one last question I think that the most important I think that you know we all of you I mean both you you Magna and all of you I mean we can't not talk about Dobbs v. Jackson and how it kind of subverted a lot of our ideas about reproductive justice and wrongful life and wrongful death what are the but it seems like at least in my in my day job I'm a political journalist and it seems like the disability narrative on both sides is being excluded how what are the most from from your research or from your from your gathering how what what do we lose what do we not gain when we exclude disabled voices from talking about abortion and talking about and talking about reproductive rights and reproductive health and reproductive justice I don't know that's too broad a question expertise in this jump going back but I will just start by saying people with disabilities need reproductive rights themselves yes the great New York Times editorial from this perspective a couple of months back I think last name is Sizemur saying like I my body wouldn't withstand a pregnancy and it also is like being protected by you know it is also kind of the type of pregnancy that might be terminated these things are right people live and if we look at the adults with these disabilities it really collapses a lot of these arguments because protecting or you know eliminating the right of abortion for these fetuses will you know kill people and and many people with disabilities who cannot sustain a pregnancy yeah I think it presents a lot of the issues to about genetic counseling and I know it's been a very difficult time to be a genetic counselor and what can you talk about and not talk about and it's hard to have really honest conversations about disabilities prenatally and otherwise and like Rebecca said like for people living with disabilities this is all really important and so it's not sort of there's no one answer but it really just makes it difficult to accommodate people with disabilities discussion about disabilities in a holistic sense and it's not just limited to pregnancy but sort of a holistic idea of an autonomous life yes necessarily want to add anything I'm I you know I think Nina Rebecca I thank you you both really you both really covered it and Nina I think your your talk on on this topic was was really powerful as as Rebecca said I mean I think the the right to an abortion the ability to have an abortion for whatever a person's reasons might be is just important I think the like seeing abortion as a healthcare right as a as a healthcare intervention as whatever that might whatever that might be but but kind of contextualizing it in is not a moral discussion it's not a social discussion right it's about healthcare and it's about access to healthcare for whatever a person's reasons may be and I think kind of shifting that the thinking as as Nina your talk was doing into the framework of reproductive justice and including voices from the disabled community in that way and I think that is that is that is key kind of just situating it as a healthcare discussion certainly well this is our time I really wish we could continue this all your presentations were incredible I really want to thank you guys for putting up with a with a poor staff like me who doesn't know as much hopefully I elevated you guys you guys and me you guys look incredible thank you to the NIH thank you to all the sponsors thank you to everything thank you to all the people who promoted this and and I really just want to thank you and hopefully we can keep contact thank you Thanks so much Eric thanks so much panelists we will be having a break from right now until three three thirty for our keynote lecture from Professor Dennis Tyler so please stay with us thank you so much