Prenatal Testing

Prenatal Testing and Disability Rights, ed. Erik Parens and Adrienne Asch. Washington, D.C.: Georgetown University Press, 2000; and Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America by Rayna Rapp. New York: Routledge, 2000.

Feminists in general have long recognized an apparent tension between affirmation of the right of women to prenatal testing followed by termination of affected fetuses, and affirmation of the rights of people with disabilities who are already born. The two books reviewed here address this tension: one by presenting multiple views about the issue, the other by examining the social impact of a common prenatal testing procedure. Neither tome purports to resolve the tension, but both provide useful and provocative material for feminists.

Prenatal Testing and Disability Rights (Parens and Asch 2000) is the product of a two-year Hastings Center project "to explore the disability rights critique of prenatal testing for genetic disability" (ix). According to editors Erik Parens and Adrienne Asch, this critique entails three claims about prenatal diagnosis: (1) it undercuts recognition that disability is, to a great extent, socially constructed; (2) it implies unwillingness on the part of parents to accept an imperfect child; and (3) it generally involves inadequate understanding of the disabilities it attempts to identify and avoid. Despite multiple meetings supplemented by e-mail communications, participants were unable to reach consensus on the major issues addressed. Given their diverse disciplines, expertise, and experience as disabled or currently able academics, caregivers, or relatives of people with disabilities, their lack of consensus is disappointing but not surprising.

The major issues on which consensus was not reached were the first and second claims and related issues such as the feasibility or desirability of restrictive policies for prenatal testing. Supporting both claims is the "expressivist argument" (Buchanan 1996), which several contributors examine critically. As its name suggests, this argument states that prenatal tests send a hurtful and wrong message to those who live with disabilities, namely, that their lives are not worth living. To Asch, the message sent is that "a single trait stands in for the whole, the trait obliterates the whole," with "no need to find out about the rest" (13). Contributors to the volume who are not (yet) disabled either deny that this message is implied or defend the implication.

Relevant to the third claim of the disability rights critique, participants in the Hastings Center project agreed that widespread ignorance about disability is a primary source of discrimination against people with disabilities. The editors summarize this agreement in their uncontroversial recommendation that better education about disabilities is needed for practitioners, potential parents, and the public at large.

Part One of the book includes the editors' overview of the project and elaboration of the disability rights critique, along with an invited article by Cynthia Powell delineating the current state of prenatal testing in the United States. Unmentioned in the latter is preimplantation genetic diagnosis, a means by which early embryos may be tested in vitro before the establishment of pregnancy. Although those who can afford it increasingly pursue this diagnostic avenue, the author may not construe it as "prenatal."

Part Two addresses the impact of prenatal testing and disability on parents and families. Deborah Kent explains why her blindness does not constitute an impediment to her normal and fulfilling lifestyle, and Mary Ann Baily narrates the reasoning process that led to her amniocentesis. Philip Ferguson, Alan Gartner, and Dorothy Lipsky argue for a position that runs counter to the view of many currently able individuals: that parenting a child with disabilities is no more apt to lead to family disruption than raising a child without disabilities. The remaining articles in this section are philosophical. Bonnie Steinbock argues in support of selective abortion, William Ruddick considers ways by which to limit prenatal testing, and Bruce Jennings examines how genetic scientists have framed the issue and influenced or decisions regarding prenatal diagnosis.

In Part Three, Asch and Marsha Saxton reflect on their own and others' experiences of disability, in arguments supporting the disability...