Women and Prenatal Testing

Facing the Challenges of Genetic Technology

Edited by Karen H. Rothenberg and Elizabeth J. Thomson

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“Reproductive and genetic technologies have a tremendous impact on women’s lives. This book is an important and thought-provoking discussion of the issues, from the legal to the personal, that must be considered by scholars, policymakers, and individual women.” —Congresswoman Patricia Schroeder

“Although prenatal diagnosis for genetic and other disorders has been on the medical scene for over 20 years, the technologies are still changing. As is so often the case with new technologies, patients’—or, in this case, women’s—perspectives are not heard before the technique is imbedded in medical practice. This book rectifies this deficiency and comes at a time when policies governing the use of these new technologies can be modified. The voices heard in Women and Prenatal Testing express many points of view, examining different implications of the failure to address women’s concerns as the technology is promoted.” —Neil A. Holtzman, The Johns Hopkins Medical Institutions

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.

Contributors are Abby Lippman, Ruth Schwartz Cowan, Deborah Kaplan, Mary B. Mahowald, Ruth Faden, Patricia A. King, R. Alta Charo, Karen H. Rothenberg, Ellen Wright Clayton, Elena A. Gates, Nancy Anne Press, Carole H. Browner, Rayna Rapp, Laurie Nsiah-Jefferson, Barbara Katz Rothman, and Rita Beck Black.

Karen H. Rothenberg is the Marjorie Cook professor of law and director of the law and health care program at the University of Maryland School of Law. She has published articles in the New England Journal of Medicine; Law, Medicine, and Health Care; Fetal Diagnosis and Therapy, and numerous law reviews. Elizabeth J. Thomson, formerly coordinator of Iowa’s statewide genetic counseling services, is coordinator for the genetics services research department in the Ethical, Legal, and Social Implications branch of the National Center for Human Genome Research. She has published many articles in genetics and nursing journals.