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Harriet S.MeyerMD, Contributing EditorJonathan D.EldredgeMLS, PhD, Journal Review EditorRobertHoganMD, adviser for new media
After ending her pregnancy in 1983 following a positive diagnosis for Down syndrome, cultural anthropologist Rayna Rapp began to study the social impact and cultural meaning of amniocentesis. For the next 15 years she studied seven constituencies intimately involved with this new reproductive technology: geneticists, genetic counselors, lab technicians, pregnant women and their supporters who used or refused the test, women who ended their pregnancies following a positive diagnosis, and parents of children with prenatally diagnosable disabilities.
Rapp broke new methodological ground with this research and has served as a direction setter both in anthropology and in science and technology studies. Of the many facets of this remarkably rich study, her description of "counseling across cultural differences" may be most useful to medical care givers. Rapp interviewed genetic counselors from every medical center in New York City that offers prenatal diagnostics and observed more than 300 genetic counseling sessions in hospitals with very different client bases. She conducted follow-up interviews with more than 100 of these women and some of their partners. Rapp documents the code switching that takes place as counselors serve a population of diverse language, class, and ethnicity and shows how "even counseling materials developed for clients with low scientific literacy often miss their mark." She demonstrates that "there is ample space for both improving the content of information and increasing awareness of the role which class structured etiquette plays" in shaping what is said and what is left unsaid in medical interviews.
Rapp describes how prenatal diagnosis "forces each woman to act as a moral philosopher of the limits, adjudicating the standards guarding entry into the human community." She illuminates the dense social and cultural context in which such decision making takes place—cultural ideas of maternal responsibility and which types of disability are acceptable, white middle class women's concern about being "selfish," Spanish-speaking women's concern with fetal suffering, multiethnic working-class concerns with how a disabled child will affect other family members, and new immigrants' fears about how such a child might jeopardize the family's ability to assimilate. Rapp also conveys the importance of religion, in providing not only spiritual direction but also social and material resources that affect these decisions. She vividly conveys how for women living with the real risks of poverty—dangerous neighborhoods, unemployment, depression, substandard schools, family members involved with drugs—"the very idea that risks are measurable and individual may be overwhelmed by other assessments women make" about more diffuse, socially-based risks to prenatal health. As she sketches this "practical epidemiology," Rapp notes, ". . . ironically, the very populations most at risk—less privileged, ‘older,' women having more pregnancies with more partners . . . may be the least likely to live by the numbers precisely because they understand their risks to be spread over a greater territory than chromosome analysis in pregnancy describes."
The final two chapters provide a "women-centered analysis" of what happens when a chromosomal anomaly is found. Rapp draws on interviews with 38 families of children with Down syndrome and participant observation with two parent support groups to describe the special pleasures and burdens of mothering these children. Here again we see how "the discursive and material resources available for families of disabled children vary greatly along the social fault lines."
Despite her support for "adequate, non-stigmatizing, integrative services" for children with disabilities, Rapp continues to "champion the reproductive rights of women to carry or refuse to carry to term a pregnancy that would result in a baby with a serious disability." Interviews with 50 women enable Rapp to probe the special trials of a "chosen loss." She describes these women's assessments of the various medical procedures available and makes a case for dilatation and evacuation as the preferable mode for termination. She explains the "profound sense of social isolation" that the women she interviewed shared and makes clear that the social support offered in these circumstances is "insufficient."
The award of three coveted book prizes already attests to the importance of this book for the social sciences. Testing Women, Testing the Fetus is likely to prove equally valuable to health care providers concerned with offering the best possible care to patients from diverse social backgrounds.
Amniocentesis: Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America. JAMA. 2000;283(24):3263–3264. doi:10.1001/jama.283.24.3263-JBK0628-4-1
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