Down's Syndrome Screening and Reproductive Politics

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Author :
Publisher : Taylor & Francis
ISBN 13 : 1317338219
Total Pages : 200 pages
Book Rating : 4.3/5 (173 download)

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Book Synopsis Down's Syndrome Screening and Reproductive Politics by : Gareth M. Thomas

Download or read book Down's Syndrome Screening and Reproductive Politics written by Gareth M. Thomas and published by Taylor & Francis. This book was released on 2017-03-16 with total page 200 pages. Available in PDF, EPUB and Kindle. Book excerpt: In the UK and beyond, Down’s syndrome screening has become a universal programme in prenatal care. But why does screening persist, particularly in light of research that highlights pregnant women’s ambivalent and problematic experiences with it? Drawing on an ethnography of Down’s syndrome screening in two UK clinics, Thomas explores how and why we are so invested in this practice and what effects this has on those involved. Informed by theoretical approaches that privilege the mundane and micro practices, discourses, materials, and rituals of everyday life, Down’s Syndrome Screening and Reproductive Politics describes the banal world of the clinic and, in particular, the professionals contained within it who are responsible for delivering this programme. In so doing, it illustrates how Down’s syndrome screening is ‘downgraded’ and subsequently stabilised as a ‘routine’ part of a pregnancy. Further, the book captures how this routinisation is deepened by a systematic, but subtle, framing of Down’s syndrome as a negative pregnancy outcome. By unpacking the complex relationships between professionals, parents, technology, policy, and clinical practice, Thomas identifies how and why screening is successfully routinised and how it is embroiled in both new and familiar debates surrounding pregnancy, ethics, choice, diagnosis, care, disability, and parenthood. The book will appeal to academics, students, and professionals interested in medical sociology, medical anthropology, science and technology studies (STS), bioethics, genetics, and/or disability studies.

The Politics of Down Syndrome

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Author :
Publisher : John Hunt Publishing
ISBN 13 : 1780990715
Total Pages : 90 pages
Book Rating : 4.7/5 (89 download)

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Book Synopsis The Politics of Down Syndrome by : Kieron Smith

Download or read book The Politics of Down Syndrome written by Kieron Smith and published by John Hunt Publishing. This book was released on 2011-09-30 with total page 90 pages. Available in PDF, EPUB and Kindle. Book excerpt: Are we a more accepting society than ever before? Is there no longer a them and us division between the disabled and everybody else? The Politics of Down Syndrome looks at how we got to where we are today, from the racist roots of its identification to the rising number of abortions today. Down syndrome is the most common syndrome in the world, shared by all classes and races, yet it's one we rarely address our feelings about, head on. This book, although direct and questioning, takes a positive view about where we go from here and the opportunity for society to fully enjoy the benefits of being inclusive.

Ordinary Medicine

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Author :
Publisher : Duke University Press
ISBN 13 : 0822375508
Total Pages : 336 pages
Book Rating : 4.8/5 (223 download)

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Book Synopsis Ordinary Medicine by : Sharon R. Kaufman

Download or read book Ordinary Medicine written by Sharon R. Kaufman and published by Duke University Press. This book was released on 2015-05-04 with total page 336 pages. Available in PDF, EPUB and Kindle. Book excerpt: Most of us want and expect medicine’s miracles to extend our lives. In today’s aging society, however, the line between life-giving therapies and too much treatment is hard to see—it’s being obscured by a perfect storm created by the pharmaceutical and biomedical industries, along with insurance companies. In Ordinary Medicine Sharon R. Kaufman investigates what drives that storm’s “more is better” approach to medicine: a nearly invisible chain of social, economic, and bureaucratic forces that has made once-extraordinary treatments seem ordinary, necessary, and desirable. Since 2002 Kaufman has listened to hundreds of older patients, their physicians and family members express their hopes, fears, and reasoning as they faced the line between enough and too much intervention. Their stories anchor Ordinary Medicine. Today’s medicine, Kaufman contends, shapes nearly every American’s experience of growing older, and ultimately medicine is undermining its own ability to function as a social good. Kaufman’s careful mapping of the sources of our health care dilemmas should make it far easier to rethink and renew medicine’s goals.

Choosing Down Syndrome

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Author :
Publisher : MIT Press
ISBN 13 : 0262546248
Total Pages : 237 pages
Book Rating : 4.2/5 (625 download)

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Book Synopsis Choosing Down Syndrome by : Chris Kaposy

Download or read book Choosing Down Syndrome written by Chris Kaposy and published by MIT Press. This book was released on 2022-08-09 with total page 237 pages. Available in PDF, EPUB and Kindle. Book excerpt: An argument that more people should have children with Down syndrome, written from a pro-choice, disability-positive perspective. The rate at which parents choose to terminate a pregnancy when prenatal tests indicate that the fetus has Down syndrome is between 60 and 90 percent. In Choosing Down Syndrome, Chris Kaposy offers a carefully reasoned ethical argument in favor of choosing to have such a child. Arguing from a pro-choice, disability-positive perspective, Kaposy makes the case that there is a common social bias against cognitive disability that influences decisions about prenatal testing and terminating pregnancies, and that more people should resist this bias by having children with Down syndrome. Drawing on accounts by parents of children with Down syndrome, and arguing for their objectivity, Kaposy finds that these parents see themselves and their families as having benefitted from having a child with Down syndrome. To counter those who might characterize these accounts as based on self-deception or expressing adaptive preference, Kaposy cites supporting evidence, including divorce rates and observational studies showing that families including children with Down syndrome typically function well. Himself the father of a child with Down syndrome, Kaposy argues that cognitive disability associated with Down syndrome does not lead to diminished well-being. He argues further that parental expectations are influenced by neoliberal ideologies that unduly focus on the supposed diminished economic potential of a person with Down syndrome. Kaposy does not advocate restricting access to abortion or prenatal testing for Down syndrome, and he does not argue that it is ethically mandatory in all cases to give birth to a child with Down syndrome. People should be free to make important decisions based on their values. Kaposy's argument shows that it may be consistent with their values to welcome a child with Down syndrome into the family.

Investigating Interdisciplinary Collaboration

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Author :
Publisher : Rutgers University Press
ISBN 13 : 0813585910
Total Pages : 260 pages
Book Rating : 4.8/5 (135 download)

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Book Synopsis Investigating Interdisciplinary Collaboration by : Scott Frickel

Download or read book Investigating Interdisciplinary Collaboration written by Scott Frickel and published by Rutgers University Press. This book was released on 2016-11-25 with total page 260 pages. Available in PDF, EPUB and Kindle. Book excerpt: Interdisciplinarity has become a buzzword in academia, as research universities funnel their financial resources toward collaborations between faculty in different disciplines. In theory, interdisciplinary collaboration breaks down artificial divisions between different departments, allowing more innovative and sophisticated research to flourish. But does it actually work this way in practice? Investigating Interdisciplinary Collaboration puts the common beliefs about such research to the test, using empirical data gathered by scholars from the United States, Canada, and Great Britain. The book’s contributors critically interrogate the assumptions underlying the fervor for interdisciplinarity. Their attentive scholarship reveals how, for all its potential benefits, interdisciplinary collaboration is neither immune to academia’s status hierarchies, nor a simple antidote to the alleged shortcomings of disciplinary study. Chapter 10 is available Open Access here (https://www.ncbi.nlm.nih.gov/books/NBK395883)

Down Syndrome: From Understanding the Neurobiology to Therapy

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Author :
Publisher : Elsevier
ISBN 13 : 0444543007
Total Pages : 273 pages
Book Rating : 4.4/5 (445 download)

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Book Synopsis Down Syndrome: From Understanding the Neurobiology to Therapy by :

Download or read book Down Syndrome: From Understanding the Neurobiology to Therapy written by and published by Elsevier. This book was released on 2012-10-16 with total page 273 pages. Available in PDF, EPUB and Kindle. Book excerpt: Down syndrome (DS) is the most common example of neurogenetic aneuploid disorder leading to mental retardation. In most cases, DS results from an extra copy of chromosome 21 (HSA21) producing deregulated gene expression in brain that gives raise to subnormal intellectual functioning. The topic of this volume is of broad interest for the neuroscience community, because it tackles the concept of neurogenomics, that is, how the genome as a whole contributes to a neurodevelopmental cognitive disorders, such as DS, and thus to the development, structure and function of the nervous system. This volume of Progress in Brain Research discusses comparative genomics, gene expression atlases of the brain, network genetics, engineered mouse models and applications to human and mouse behavioral and cognitive phenotypes. It brings together scientists of diverse backgrounds, by facilitating the integration of research directed at different levels of biological organization, and by highlighting translational research and the application of the existing scientific knowledge to develop improved DS treatments and cures. Leading authors review the state-of-the-art in their field of investigation and provide their views and perspectives for future research Chapters are extensively referenced to provide readers with a comprehensive list of resources on the topics covered All chapters include comprehensive background information and are written in a clear form that is also accessible to the non-specialist

The Straight Line

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Author :
Publisher : U of Minnesota Press
ISBN 13 : 1452945527
Total Pages : 357 pages
Book Rating : 4.4/5 (529 download)

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Book Synopsis The Straight Line by : Tom Waidzunas

Download or read book The Straight Line written by Tom Waidzunas and published by U of Minnesota Press. This book was released on 2015-11-20 with total page 357 pages. Available in PDF, EPUB and Kindle. Book excerpt: To be taken seriously, therapies that claim to “cure” homosexuality wrap themselves in lab coats. Even though the fit is bad, and such therapies and their theorists now inhabit the scientific fringe, the science of sexuality has made some adjustments, too, Tom Waidzunas tells us in this provocative work. Intervening in the politics of sexuality and science, The Straight Line argues that scientific definitions of sexual orientation do not merely reflect the results of investigations into human nature, but rather emerge through a process of social negotiation between opposing groups. The demedicalization of homosexuality and the discrediting of reparative therapies, ex-gay ministries, and reorientation research have, Waidzunas contends, required scientists to enforce key boundaries around scientific expertise and research methods. Drawing on extensive participant observation at conferences for ex-gays, reorientation therapists, mainstream psychologists, and survivors of ex-gay therapy, as well as interviews with experts and activists, The Straight Line traces reorientation debates in the United States from the 1950s to the present, following homosexuality therapies from the mainstream to the margins. As the ex-gay movement has become increasingly transnational in recent years, Waidzunas turns to Uganda, where ideas about the scientific nature of homosexuality influenced the passage of the Anti-Homosexuality Act of 2014. While most studies treat the ex-gay movement as a religious phenomenon, this book looks at how the movement, in its attempts to establish legitimacy, has engaged with scientific institutions, shaping virulent anti-gay public policy.

Testing Women, Testing the Fetus

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Author :
Publisher : Routledge
ISBN 13 : 1135963924
Total Pages : 376 pages
Book Rating : 4.1/5 (359 download)

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Book Synopsis Testing Women, Testing the Fetus by : Rayna Rapp

Download or read book Testing Women, Testing the Fetus written by Rayna Rapp and published by Routledge. This book was released on 2004-11-23 with total page 376 pages. Available in PDF, EPUB and Kindle. Book excerpt: Rich with the voices and stories of participants, these touching, firsthand accounts examine how women of diverse racial, ethnic, class and religious backgrounds perceive prenatal testing, the most prevalent and routinized of the new reproducing technologies. Based on the author's decade of research and her own personal experiences with amniocentesis, Testing Women, Testing the Fetus explores the "geneticization" of family life in all its complexity and diversity.

Prenatal Genetic Testing, Abortion, and Disability Justice

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Author :
Publisher : Oxford University Press
ISBN 13 : 0192870955
Total Pages : 225 pages
Book Rating : 4.1/5 (928 download)

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Book Synopsis Prenatal Genetic Testing, Abortion, and Disability Justice by : Amber Knight

Download or read book Prenatal Genetic Testing, Abortion, and Disability Justice written by Amber Knight and published by Oxford University Press. This book was released on 2023-03-23 with total page 225 pages. Available in PDF, EPUB and Kindle. Book excerpt: The routinization of non-invasive prenatal genetic testing (NIPT) raises urgent questions about disability rights and reproductive justice. Supporters defend NIPT on the grounds that genetic information about the fetus helps would-be parents make better family planning choices. Prenatal Genetic Testing, Abortion, and Disability Justice challenges that assessment by exploring how NIPT can actually constrain pregnant women's options. Prospective parents must balance a complicated array of factors, including the familial, social, and financial support they can reasonably expect to receive if they choose to carry a disabled fetus to term and raise after birth, causing many pregnant women to "choose" termination. Focusing on the US, the book explores the intent and effects of prenatal screening in connection to women's bodily autonomy and disability rights, addressing themes at the intersection of genetic medicine, policymaking, critical disabilities studies, and political theory. Knight and Miller shift debates about reprogenetics from bioethics to political practice, as well as thoroughly critiquing the neoliberal state and the eugenic technologies that support it. Providing concrete suggestions for reforming medical practice, welfare policy, and cultural norms surrounding disability, this book highlights sites of necessary reform to envision how prospective parents can make truly free choices about prenatal genetic testing and selection abortion.

Unexpected

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Author :
Publisher : NYU Press
ISBN 13 : 1479816639
Total Pages : 195 pages
Book Rating : 4.4/5 (798 download)

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Book Synopsis Unexpected by : Alison Piepmeier

Download or read book Unexpected written by Alison Piepmeier and published by NYU Press. This book was released on 2021-02-23 with total page 195 pages. Available in PDF, EPUB and Kindle. Book excerpt: What prenatal tests and down syndrome reveal about our reproductive choices When Alison Piepmeier—scholar of feminism and disability studies, and mother of Maybelle, an eight-year-old girl with Down syndrome—died of cancer in August 2016, she left behind an important unfinished manuscript about motherhood, prenatal testing, and disability. In Unexpected, George Estreich and Rachel Adams pick up where she left off, honoring the important research of their friend and colleague, as well as adding new perspectives to her work. Based on interviews with parents of children with Down syndrome, as well as women who terminated their pregnancies because their fetus was identified as having the condition, Unexpected paints an intimate, nuanced picture of reproductive choice in today’s world. Piepmeier takes us inside her own daughter’s life, showing how Down syndrome is misunderstood, stigmatized, and condemned, particularly in the context of prenatal testing. At a time when medical technology is rapidly advancing, Unexpected provides a much-needed perspective on our complex, and frequently troubling, understanding of Down syndrome.

Immigration and Metropolitan Revitalization in the United States

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Author :
Publisher : University of Pennsylvania Press
ISBN 13 : 0812249127
Total Pages : 216 pages
Book Rating : 4.8/5 (122 download)

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Book Synopsis Immigration and Metropolitan Revitalization in the United States by : Domenic Vitiello

Download or read book Immigration and Metropolitan Revitalization in the United States written by Domenic Vitiello and published by University of Pennsylvania Press. This book was released on 2017-04-25 with total page 216 pages. Available in PDF, EPUB and Kindle. Book excerpt: After decades of urban crisis, American cities and suburbs have revived, thanks largely to immigration. This is the first book to explore the phenomenon, from big cities such as New York, Chicago, and Los Angeles, to newer destinations such as Nashville and suburban Boston and New Jersey.

Assessing Genetic Risks

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Author :
Publisher : National Academies Press
ISBN 13 : 0309047986
Total Pages : 353 pages
Book Rating : 4.3/5 (9 download)

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Book Synopsis Assessing Genetic Risks by : Institute of Medicine

Download or read book Assessing Genetic Risks written by Institute of Medicine and published by National Academies Press. This book was released on 1994-01-01 with total page 353 pages. Available in PDF, EPUB and Kindle. Book excerpt: Raising hopes for disease treatment and prevention, but also the specter of discrimination and "designer genes," genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening. Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decision-making, public health objectives, cost, and more. Among the important issues covered: Quality control in genetic testing. Appropriate roles for public agencies, private health practitioners, and laboratories. Value-neutral education and counseling for persons considering testing. Use of test results in insurance, employment, and other settings.

Prenatal Testing and Disability Rights

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Author :
Publisher : Georgetown University Press
ISBN 13 : 9781589013940
Total Pages : 392 pages
Book Rating : 4.0/5 (139 download)

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Book Synopsis Prenatal Testing and Disability Rights by : Erik Parens

Download or read book Prenatal Testing and Disability Rights written by Erik Parens and published by Georgetown University Press. This book was released on 2000-09-28 with total page 392 pages. Available in PDF, EPUB and Kindle. Book excerpt: As prenatal tests proliferate, the medical and broader communities perceive that such testing is a logical extension of good prenatal care—it helps parents have healthy babies. But prenatal tests have been criticized by the disability rights community, which contends that advances in science should be directed at improving their lives, not preventing them. Used primarily to decide to abort a fetus that would have been born with mental or physical impairments, prenatal tests arguably reinforce discrimination against and misconceptions about people with disabilities. In these essays, people on both sides of the issue engage in an honest and occasionally painful debate about prenatal testing and selective abortion. The contributors include both people who live with and people who theorize about disabilities, scholars from the social sciences and humanities, medical geneticists, genetic counselors, physicians, and lawyers. Although the essayists don't arrive at a consensus over the disability community's objections to prenatal testing and its consequences, they do offer recommendations for ameliorating some of the problems associated with the practice.

Born Well: Prenatal Genetics and the Future of Having Children

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Author :
Publisher : Springer Nature
ISBN 13 : 3030825361
Total Pages : 145 pages
Book Rating : 4.0/5 (38 download)

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Book Synopsis Born Well: Prenatal Genetics and the Future of Having Children by : Megan A. Allyse

Download or read book Born Well: Prenatal Genetics and the Future of Having Children written by Megan A. Allyse and published by Springer Nature. This book was released on 2021-11-24 with total page 145 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book brings together an international collection of experts in reproductive ethics, law, disability studies, and medicine to explore the challenging future of reproduction and children. From the medical to the social and from the financial to the legal, the authors explore the expanding impact of reproductive genetics on our society. New advances in genetic technologies are revolutionizing the practice of reproductive medicine. We have expanded our ability to detect genetic changes in embryos and fetuses in ways that potentially allow to identify, treat, or prevent a growing range of diseases. The development of gene-editing technologies raises questions about the possibility of removing disease-causing variants from embryos before pregnancy implantation. The growing sophistication of prenatal genomic sequencing offers us glimpses into the whole genome of the developing fetus. And, the increasingly sophisticated science of 'gene matching' allows us greater and greater foreknowledge of how the genomes of two individuals will combine in a future child. This is an indispensable book on the newest developments in bioethics caused by the sciences. Chapter 5 is available open access under a Creative Commons Attribution 4.0 International License via link.springer.com.

Reproduction, Health, and Medicine

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Author :
Publisher : Emerald Group Publishing
ISBN 13 : 1787561739
Total Pages : 321 pages
Book Rating : 4.7/5 (875 download)

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Book Synopsis Reproduction, Health, and Medicine by : Elizabeth Mitchell Armstrong

Download or read book Reproduction, Health, and Medicine written by Elizabeth Mitchell Armstrong and published by Emerald Group Publishing. This book was released on 2019-11-22 with total page 321 pages. Available in PDF, EPUB and Kindle. Book excerpt: At a moment when reproduction is increasingly politicized, the volume explores the breadth of contemporary research on reproduction from the perspective of medical sociology, illuminating the lived experience of reproduction and offering insights to inform sociology and health policy.

An Ordinary Future

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Author :
Publisher : Univ of California Press
ISBN 13 : 0520388305
Total Pages : 221 pages
Book Rating : 4.5/5 (23 download)

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Book Synopsis An Ordinary Future by : Thomas W Pearson

Download or read book An Ordinary Future written by Thomas W Pearson and published by Univ of California Press. This book was released on 2023-09-05 with total page 221 pages. Available in PDF, EPUB and Kindle. Book excerpt: This vivid portrait of contemporary parenting blends memoir and cultural analysis to explore evolving ideas of disability and human difference. An Ordinary Future is a deeply moving work that weaves an account of Margaret Mead's path to disability rights activism with one anthropologist's experience as the parent of a child with Down syndrome. With this book, Thomas W. Pearson confronts the dominant ideas, disturbing contradictions, and dramatic transformations that have shaped our perspectives on disability over the last century. Pearson examines his family's story through the lens of Mead's evolving relationship to disability—a topic once so stigmatized that she advised Erik Erikson to institutionalize his son, born with Down syndrome in 1944. Over the course of her career, Mead would become an advocate for disability rights and call on anthropology to embrace a wider understanding of humanity that values diverse bodies and minds. Powerful and personal, An Ordinary Future reveals why this call is still relevant in the ongoing fight for disability justice and inclusion, while shedding light on the history of Down syndrome and how we raise children born different.

The Beautiful Unwanted

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Author :
Publisher : McGill-Queen's Press - MQUP
ISBN 13 : 0228019680
Total Pages : 142 pages
Book Rating : 4.2/5 (28 download)

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Book Synopsis The Beautiful Unwanted by : Chris Kaposy

Download or read book The Beautiful Unwanted written by Chris Kaposy and published by McGill-Queen's Press - MQUP. This book was released on 2023-10-15 with total page 142 pages. Available in PDF, EPUB and Kindle. Book excerpt: Prenatal genetic testing has changed the circumstances under which parents choose what pregnancies to carry to term. Some have predicted that as a result of parents’ choices, people with Down syndrome will disappear from our communities in the near future. Chris Kaposy, a bioethicist who has a son with Down syndrome, reflects on parenting his son in the midst of this supposed disappearance. Writing from a pro-choice, disability-positive perspective, Kaposy presents some of the decades-old bioethical controversies involving children with Down syndrome, illustrating a prehistory of disappearance that has shaped current attitudes toward intellectual disability. Layered throughout this history are elements of Kaposy’s personal experience with his son and family. Transcending monograph and memoir, The Beautiful Unwanted draws creatively upon the past and the present, upon myth, history, science, and personal stories, to present the world of families that include children with Down syndrome from a series of uncommon perspectives. This account encompasses the changeling myths of Newfoundland, the “discovery” of Down syndrome by John Langdon Down and Jérôme Lejeune, and the twentieth-century experience of institutionalization, as well as recent advances in reproductive technology. We must recognize that we have some control over the future, Kaposy argues, and we must ask what kind of future we want for those who have intellectual disabilities. The Beautiful Unwanted poses this question in a way that is engaging, often bewildering, and always fascinating.