Prenatal Testing And Disability Rights

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Prenatal Testing and Disability Rights

Author : Erik Parens
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.

Prenatal Genetic Testing, Abortion, and Disability Justice

Author : Amber Knight
Publisher : Oxford University Press
ISBN 13 : 0192698583
Total Pages : 225 pages
Book Rating : 4.1/5 (926 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 2023-02-22 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.

Tangled Diagnoses

Author : Ilana Löwy
Publisher : University of Chicago Press
ISBN 13 : 022653426X
Total Pages : 326 pages
Book Rating : 4.2/5 (265 download)

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Book Synopsis Tangled Diagnoses by : Ilana Löwy

Download or read book Tangled Diagnoses written by Ilana Löwy and published by University of Chicago Press. This book was released on 2018-04-19 with total page 326 pages. Available in PDF, EPUB and Kindle. Book excerpt: Since the late nineteenth century, medicine has sought to foster the birth of healthy children by attending to the bodies of pregnant women, through what we have come to call prenatal care. Women, and not their unborn children, were the initial focus of that medical attention, but prenatal diagnosis in its present form, which couples scrutiny of the fetus with the option to terminate pregnancy, came into being in the early 1970s. Tangled Diagnoses examines the multiple consequences of the widespread diffusion of this medical innovation. Prenatal testing, Ilana Löwy argues, has become mainly a risk-management technology—the goal of which is to prevent inborn impairments, ideally through the development of efficient therapies but in practice mainly through the prevention of the birth of children with such impairments. Using scholarship, interviews, and direct observation in France and Brazil of two groups of professionals who play an especially important role in the production of knowledge about fetal development—fetopathologists and clinical geneticists—to expose the real-life dilemmas prenatal testing creates, this book will be of interest to anyone concerned with the sociopolitical conditions of biomedical innovation, the politics of women’s bodies, disability, and the ethics of modern medicine.

Born Well: Prenatal Genetics and the Future of Having Children

Author : Megan A. Allyse
Publisher :
ISBN 13 : 9783030825379
Total Pages : 0 pages
Book Rating : 4.8/5 (253 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 . This book was released on 2022 with total page 0 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.

Assessing Genetic Risks

Author : Institute of Medicine
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.

Unexpected

Author : Alison Piepmeier
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.

Choosing Down Syndrome

Author : Chris Kaposy
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.

Disability, Health, Law, and Bioethics

Author : I. Glenn Cohen
Publisher : Cambridge University Press
ISBN 13 : 1108485979
Total Pages : 313 pages
Book Rating : 4.1/5 (84 download)

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Book Synopsis Disability, Health, Law, and Bioethics by : I. Glenn Cohen

Download or read book Disability, Health, Law, and Bioethics written by I. Glenn Cohen and published by Cambridge University Press. This book was released on 2020-04-23 with total page 313 pages. Available in PDF, EPUB and Kindle. Book excerpt: Examines how the framing of disability has serious implications for legal, medical, and policy treatments of disability.

Testing Women, Testing the Fetus

Author : Rayna Rapp
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.

Law and the Contradictions of the Disability Rights Movement

Author : Samuel R. Bagenstos
Publisher : Yale University Press
ISBN 13 : 0300155433
Total Pages : 240 pages
Book Rating : 4.3/5 (1 download)

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Book Synopsis Law and the Contradictions of the Disability Rights Movement by : Samuel R. Bagenstos

Download or read book Law and the Contradictions of the Disability Rights Movement written by Samuel R. Bagenstos and published by Yale University Press. This book was released on 2009-06-23 with total page 240 pages. Available in PDF, EPUB and Kindle. Book excerpt: The passage of the Americans with Disabilities Act in 1990 was hailed as revolutionary legislation, but in the ensuing years restrictive Supreme Court decisions have prompted accusations that the Court has betrayed the disability rights movement. The ADA can lay claim to notable successes, yet people with disabilities continue to be unemployed at extremely high rates. In this timely book, Samuel R. Bagenstos examines the history of the movement and discusses the various, often-conflicting projects of diverse participants. He argues that while the courts deserve some criticism, some may also be fairly aimed at the choices made by prominent disability rights activists as they crafted and argued for the ADA. The author concludes with an assessment of the limits of antidiscrimination law in integrating and empowering people with disabilities, and he suggests new policy directions to make these goals a reality.

Down's Syndrome Screening and Reproductive Politics

Author : Gareth M. Thomas
Publisher : Routledge
ISBN 13 : 1317338200
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 Routledge. This book was released on 2017-03-16 with total page 200 pages. Available in PDF, EPUB and Kindle. Book excerpt: Nominated for the Foundation of Sociology of Health and Illness Book Prize 2018 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.

Quality of Life and Human Difference

Author : David Wasserman
Publisher : Cambridge University Press
ISBN 13 : 0521832012
Total Pages : 287 pages
Book Rating : 4.5/5 (218 download)

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Book Synopsis Quality of Life and Human Difference by : David Wasserman

Download or read book Quality of Life and Human Difference written by David Wasserman and published by Cambridge University Press. This book was released on 2005-05-09 with total page 287 pages. Available in PDF, EPUB and Kindle. Book excerpt: This study brings together two important literatures together in the one volume. One concerns the role of quality assessments in social policy, especially health policy. The second concerns ethical and social issues raised by prenatal testing for disability. Hitherto, these two literatures have had little contact with each other: few scholars have written about both, or have compared the two domains in a systematic way, while people with disabilities and disability scholars are underrepresented in recent discussion on health policy and quality of assessment. This book turns the perspectives of disability scholars on issues that have largely been the province of health methodology, policy and philosophy, while angling philosophical policy analysis on problems that have largely been the province of disability scholarship. This volume will be sought after by bioethicists, philosophers, and specialists in disability studies and healthcare economics.

Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies

Author : Sorin Hostiuc
Publisher : Academic Press
ISBN 13 : 0128137657
Total Pages : 431 pages
Book Rating : 4.1/5 (281 download)

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Book Synopsis Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies by : Sorin Hostiuc

Download or read book Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies written by Sorin Hostiuc and published by Academic Press. This book was released on 2018-08-07 with total page 431 pages. Available in PDF, EPUB and Kindle. Book excerpt: Clinical Ethics at the Crossroads of Genetic and Reproductive Technologies offers thorough discussions on preconception carrier screening, genetic engineering and the use of CRISPR gene editing, mitochondrial gene replacement therapy, sex selection, predictive testing, secondary findings, embryo reduction and the moral status of the embryo, genetic enhancement, and the sharing of genetic data. Chapter contributions from leading bioethicists and clinicians encourage a global, holistic perspective on applied challenges and the moral questions relating the implementation of genetic reproductive technology. The book is an ideal resource for practitioners, regulators, lawmakers, clinical researchers, genetic counselors and graduate and medical students. As the Human Genome Project has triggered a technological revolution that has influenced nearly every field of medicine, including reproductive medicine, obstetrics, gynecology, andrology, prenatal genetic testing, and gene therapy, this book presents a timely resource. Provides practical analysis of the ethical issues raised by cutting-edge techniques and recent advances in prenatal and reproductive genetics Contains contributions from leading bioethicists and clinicians who offer a global, holistic perspective on applied challenges and moral questions relating to genetic and genomic reproductive technology Discusses preconception carrier screening, genetic engineering and the use of CRISPR gene editing, mitochondrial gene replacement therapy, ethical issues, and more

Keywords for Disability Studies

Author : Rachel Adams
Publisher : NYU Press
ISBN 13 : 1479841153
Total Pages : 232 pages
Book Rating : 4.4/5 (798 download)

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Book Synopsis Keywords for Disability Studies by : Rachel Adams

Download or read book Keywords for Disability Studies written by Rachel Adams and published by NYU Press. This book was released on 2015-08-14 with total page 232 pages. Available in PDF, EPUB and Kindle. Book excerpt: Introduces key terms, concepts, debates, and histories for Disability Studies Keywords for Disability Studies aims to broaden and define the conceptual framework of disability studies for readers and practitioners in the field and beyond. The volume engages some of the most pressing debates of our time, such as prenatal testing, euthanasia, accessibility in public transportation and the workplace, post-traumatic stress, and questions about the beginning and end of life. Each of the 60 essays in Keywords for Disability Studies focuses on a distinct critical concept, including “ethics,” “medicalization,” “performance,” “reproduction,” “identity,” and “stigma,” among others. Although the essays recognize that “disability” is often used as an umbrella term, the contributors to the volume avoid treating individual disabilities as keywords, and instead interrogate concepts that encompass different components of the social and bodily experience of disability. The essays approach disability as an embodied condition, a mutable historical phenomenon, and a social, political, and cultural identity. An invaluable resource for students and scholars alike, Keywords for Disability Studies brings the debates that have often remained internal to disability studies into a wider field of critical discourse, providing opportunities for fresh theoretical considerations of the field’s core presuppositions through a variety of disciplinary perspectives. Visit keywords.nyupress.org for online essays, teaching resources, and more.

Choosing Children

Author : Jonathan Glover
Publisher : OUP Oxford
ISBN 13 : 0191037117
Total Pages : 128 pages
Book Rating : 4.1/5 (91 download)

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Book Synopsis Choosing Children by : Jonathan Glover

Download or read book Choosing Children written by Jonathan Glover and published by OUP Oxford. This book was released on 2008-01-10 with total page 128 pages. Available in PDF, EPUB and Kindle. Book excerpt: Progress in genetic and reproductive technology now offers us the possibility of choosing what kinds of children we do and don't have. Should we welcome this power, or should we fear its implications? There is no ethical question more urgent than this: we may be at a turning-point in the history of humanity. The renowned moral philosopher and best-selling author Jonathan Glover shows us how we might try to answer this question, and other provoking and disturbing questions to which it leads. Surely parents owe it to their children to give them the best life they can? Increasingly we are able to reduce the number of babies born with disabilities and disorders. But there is a powerful new challenge to conventional thinking about the desirability of doing so: this comes from the voices of those who have these conditions. They call into question the very definition of disability. How do we justify trying to avoid bringing people like them into being? In 2002 a deaf couple used sperm donated by a friend with hereditary deafness to have a deaf baby: they took the view that deafness is not a disability, but a difference. Starting with the issues raised by this case, Jonathan Glover examines the emotive idea of 'eugenics', and the ethics of attempting to enhance people, for non-medical reasons, by means of genetic choices. Should parents be free, not only to have children free from disabilities, but to choose, for instance, the colour of their eyes or hair? This is no longer a distant prospect, but an existing power which we cannot wish away. What impact will such interventions have, both on the individuals concerned and on society as a whole? Should we try to make general improvements to the genetic make-up of human beings? Is there a central core of human nature with which we must not interfere? This beautifully clear book is written for anyone who cares about the rights and wrongs of parents' choices for their children, anyone who is concerned about our human future. Glover handles these uncomfortable questions in a controversial but always humane and sympathetic manner.

From Chance to Choice

Author : Allen Buchanan
Publisher : Cambridge University Press
ISBN 13 : 1316583937
Total Pages : pages
Book Rating : 4.3/5 (165 download)

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Book Synopsis From Chance to Choice by : Allen Buchanan

Download or read book From Chance to Choice written by Allen Buchanan and published by Cambridge University Press. This book was released on 2001-11-12 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt: This book, written by four internationally renowned bioethicists and first published in 2000, was the first systematic treatment of the fundamental ethical issues underlying the application of genetic technologies to human beings. Probing the implications of the remarkable advances in genetics, the authors ask how should these affect our understanding of distributive justice, equality of opportunity, the rights and obligations as parents, the meaning of disability, and the role of the concept of human nature in ethical theory and practice. The book offers a historical context to contemporary debate over the use of these technologies by examining the eugenics movement of the late nineteenth and early twentieth centuries. The questions raised in this book will be of interest to any reflective reader concerned about science and society and the rapid development of biotechnology, as well as to professionals in such areas as philosophy, bioethics, medical ethics, health management, law, and political science.

Unexpected

Author : Alison Piepmeier
Publisher : NYU Press
ISBN 13 : 147986546X
Total Pages : 214 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 214 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.