Testing Women, Testing the Fetus

PUBLISHERS WEEKLY 4. JAN. 1999

At 36, Rapp, an anthropologist at the New School for Social Research, had amnio for her first, wanted, pregnancy. When the results showed Down's syndrome, she chose abortion, with much grief. Her experience led to 15 years of research on how women of many social, economic and religious backgrounds experience genetic testing and how they interpret the information this new medical technology provides. The result is a thoughtful, if concentrated, analysis that is rich with the voices of genetic counselors, lab technicians and geneticists; pregnant women who chose to be tested as well as those who refused; those who got "bad" results; and parents of children with disabilities. In addition to tracing how genetic counselors' focus on individual choice can mask social context, Rapp also reveals how women, with or without their partners, negotiate the important decision whether or not to undergo the test. One chapter dissects the miscommunications that occur when technical language is translated into the vernacular. Another chapter lays bare how expectant parents think about fetal disability--and resonates with one concerning parents of disabled children. Rapp concludes that prenatal testing puts women in the role of "moral philosophers," learning to think about statistical risk analysis in relation to the "natural" process of pregnancy. Readers unintimidated by academic writing will find this study a valuable exploration of the moral and personal decisions involved in bringing a pregnancy to term.