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Prenatal Testing and Disability Rights

Author: Erik Parens

Publisher: Georgetown University Press

Published: 2000-09-28

Total Pages: 392

ISBN-13: 9781589013940

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

Published: 2023-02-22

Total Pages: 225

ISBN-13: 0192698583

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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.

Women and Prenatal Testing

Author: Karen H. Rothenberg

Publisher: Ohio State University Press

Published: 1994

Total Pages: 332

ISBN-13: 0814206409

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"For pregnant women in the 1990s, technological developments have ushered in new and expanding reproductive genetic testing options. Some herald these procedures as advances providing women with previously unavailable information about their pregnancies. Others contend that with this surge of information come increasing and perhaps unwarranted obligations: while some women have greater knowledge about their pregnancies, they also face far more complex decisions and a greater pressure to do as much as is technologically possible to ensure the birth of a healthy child." "This book focuses on the major women's issues surrounding the development and application of reproductive genetic testing. Although much has been written about the biological safety and efficacy of these technologies, few publications have addressed their psychological, sociocultural, ethical, legal, and political impact on women and their experience of pregnancy." "The first of three sections provides the contextual framework in which the debate should be analyzed. The second section sets forth the philosophical foundations and complex ethical and legal questions that need to be addressed, and the final section delineates a variety of perspectives on the psychological and sociocultural issues raised by reproductive genetic testing. These fourteen essays on the cutting edge of the debate are essential reading for anyone interested in women's studies, human genetics, health law; and bioethics and prenatal care providers."--BOOK JACKET.Title Summary field provided by Blackwell North America, Inc. All Rights Reserved

Quality of Life and Human Difference

Author: David Wasserman

Publisher: Cambridge University Press

Published: 2005-05-09

Total Pages: 287

ISBN-13: 0521832012

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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.

Prenatal Genetic Testing Technology

Author: United States. Congress. Senate. Committee on Commerce, Science, and Transportation. Subcommittee on Science, Technology, and Space

Publisher:

Published: 2013

Total Pages: 56

ISBN-13:

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Choosing Down Syndrome

Author: Chris Kaposy

Publisher: MIT Press

Published: 2022-08-09

Total Pages: 237

ISBN-13: 0262546248

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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

Published: 2020-04-23

Total Pages: 313

ISBN-13: 1108485979

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Examines how the framing of disability has serious implications for legal, medical, and policy treatments of disability.

Assessing Genetic Risks

Author: Institute of Medicine

Publisher: National Academies Press

Published: 1994-01-01

Total Pages: 353

ISBN-13: 0309047986

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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.