Prenatal Testing And Disability Right

by Erik Parens, Adrienne Asch, Cynthia M. Powell, Deborah Kent

Overview

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.

Product Details

ISBN-13:	9780878408047
Publisher:	Georgetown University Press
Publication date:	09/14/2000
Series:	Hastings Center Studies in Ethics
Edition description:	New Edition
Pages:	388
Product dimensions:	5.90(w) x 8.90(h) x 0.80(d)
Age Range:	18 Years

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.

Table of Contents

IntroductionErik Parens and Adrienne Asch

Part One: Overview and Context of the Project

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

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

Part Two: Parenthood, Disability, and Prenatal Testing

Somewhere a MockingbirdDeborah Kent

Why I Had AmniocentesisMary Ann Baily

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

Ways to Limit Prenatal TestingWilliam Ruddick

Disability, Prenatal Testing, and Selective AbortionBonnie Steinbock

Technology and the Genetic Imaginary: Prenatal Testing and the construction of DisabilityBruce Jennings

Part Three: The Messages and Meanings of Prenatal Genetic Testing

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

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

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

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

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

Part Four: Making Policies, Delivering Services

Drawing Lines: Notes for PolicymakersDorothy C. Wertz

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

Prenatal Genetic Testing and the CourtsPilar N. Ossorio

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

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

ContributorsIndex

Editorial Reviews

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

Health Progress

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

--Health Progress

From the Publisher

"Against a background of burgeoning genetic discovery, rising consciousness of discrimination against people with disabilities, and the societal debate about abortion, The Hastings Center undertook a two-year project to explore the disability rights critique of prenatal testing for genetic disability" (from the introduction). Project members, mostly academics in fields such as biology, ethics, genetic research, philosophy, and law, met as a group on multiple occasions to research and discuss this and related issues. Their contributions here illustrate a variety of perspectives about parenthood, disability, and professional practice. Annotation c. Book News, Inc., Portland, OR (booknews.com)

Booknews