Prenatal Testing and Disability Rights

Erik Parens and Adrienne Asch, Editors

"Essential reading for anyone working in perinatal medicine and genetic counseling."
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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.

Table of Contents

Erik Parens and Adrienne Asch

Part One: Overview and Context of the Project

The Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations
Erik Parens and Adrienne Asch

The Current State of Prenatal Genetic Testing in the United States
Cynthia M. Powell

Part Two: Parenthood, Disability, and Prenatal Testing

Somewhere a Mockingbird
Deborah Kent

Why I Had Amniocentesis
Mary Ann Baily

The Experience of Disability in Families; A Synthesis of Research and Parent Narratives
Philip M. Ferguson, Alan Gartner, and Dorothy K. Lipsky

Ways to Limit Prenatal Testing
William Ruddick

Disability, Prenatal Testing, and Selective Abortion
Bonnie Steinbock

Technology and the Genetic Imaginary: Prenatal Testing and the construction of Disability
Bruce Jennings

Part Three: The Messages and Meanings of Prenatal Genetic Testing

Why Members of the Disability Community Oppose Prenatal Diagnosis and Selective Abortion
Marsha Saxton

On the Expressivity and Ethics of Selective Abortion for Disability: Conversations with My Son
Eva Feder Kittay with Leo Kittay

The Meaning of the Act: Reflections on the Expressive Force of Reproductive Decision Making and Policies
James Lindemann Nelson

Assessing the Expressive Character of Prenatal Testing: The Choices Made or the Choices Made Available
Nancy Press

Why I Haven't Changed My Mind about Prenatal Diagnosis: Reflections and Refinements
Adrienne Asch

Part Four: Making Policies, Delivering Services

Drawing Lines: Notes for Policymakers
Dorothy C. Wertz

Line Drawing: Developing Professional Standards for Prenatal Diagnostic Services
Jeffrey R. Botkin

Prenatal Genetic Testing and the Courts
Pilar N. Ossorio

Reflections from the Trenches: One Doctor's Encounter with Disability Rights Arguments
Steven J. Ralston

What Difference the Disability Community Arguments Should Make for the Delivery of Prenatal Genetic Information
Barbara Bowles Biesecker and Lori Hamby



"Essential reading for anyone working in perinatal medicine and genetic counseling."—Health Progress


Supplemental Materials


About the Author

Erik Parens is the associate for philosophical studies at The Hastings Center, Garrison, New York.

Adrienne Asch is the Henry L. Luce Professor of Biology, Ethics and Human Reproduction at Wellesley College, Wellesley, Massachusetts.

392 pp., 6 x 9

Sep 2000

392 pp., 6 x 9

ISBN: 978-0-87840-804-7
Sep 2000

392 pp.

ISBN: 978-1-58901-394-0
Sep 2000

Hastings Center Studies in Ethics series
Gregory E. Kaebnick and Daniel Callahan, Series Editors

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