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.
IntroductionErik Parens and Adrienne AschPart One: Overview and Context of the ProjectThe Disability Rights Critique of Prenatal Genetic Testing: Reflections and RecommendationsErik Parens and Adrienne AschThe Current State of Prenatal Genetic Testing in the United StatesCynthia M. PowellPart Two: Parenthood, Disability, and Prenatal TestingSomewhere a MockingbirdDeborah KentWhy I Had AmniocentesisMary Ann BailyThe Experience of Disability in Families; A Synthesis of Research and Parent NarrativesPhilip M. Ferguson, Alan Gartner, and Dorothy K. LipskyWays to Limit Prenatal TestingWilliam RuddickDisability, Prenatal Testing, and Selective AbortionBonnie SteinbockTechnology and the Genetic Imaginary: Prenatal Testing and the construction of DisabilityBruce JenningsPart Three: The Messages and Meanings of Prenatal Genetic TestingWhy Members of the Disability Community Oppose Prenatal Diagnosis and Selective AbortionMarsha SaxtonOn the Expressivity and Ethics of Selective Abortion for Disability: Conversations with My SonEva Feder Kittay with Leo KittayThe Meaning of the Act: Reflections on the Expressive Force of Reproductive Decision Making and PoliciesJames Lindemann NelsonAssessing the Expressive Character of Prenatal Testing: The Choices Made or the Choices Made AvailableNancy PressWhy I Haven't Changed My Mind about Prenatal Diagnosis: Reflections and RefinementsAdrienne AschPart Four: Making Policies, Delivering ServicesDrawing Lines: Notes for PolicymakersDorothy C. WertzLine Drawing: Developing Professional Standards for Prenatal Diagnostic ServicesJeffrey R. BotkinPrenatal Genetic Testing and the CourtsPilar N. OssorioReflections from the Trenches: One Doctor's Encounter with Disability Rights ArgumentsSteven J. RalstonWhat Difference the Disability Community Arguments Should Make for the Delivery of Prenatal Genetic InformationBarbara Bowles Biesecker and Lori HambyContributorsIndex