Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America (review)

Testing Women, Testing the Fetus is a scholarly work that arose from a devastating personal experience. In 1983, Rayna Rapp was already a respected anthropologist when she learned, through amniocentesis, that she was pregnant with a fetus that had Down's syndrome. After terminating the pregnancy, Rapp decided to combine her grief with her discipline and begin a new research project, very different from the studies of French peasant communities with which she had begun her career. Over the course of the next decade she interviewed hundreds of people involved in prenatal diagnosis, most of them (but not all) in New York City: patients (of all classes and many ethnicities), dozens of laboratory technicians, genetics counselors, and maternal-fetal specialists.

The book that resulted from those researches is full of wisdom, the kind of wisdom that is generated when an objective method is combined with passionate concern. I wish that all medical practitioners could be induced to read Testing Women, Testing the Fetus; certainly, all practitioners of any variety of social studies of medicine ought to. Leaving aside what we can learn about the social impact of prenatal diagnosis, this book tells us more than any other single work about how people of different classes and ethnicities make medical decisions, and about the difficulties that practitioners (including technicians, counselors, and physicians) face in providing them with the information on which to base those decisions.

Many physicians and a few genetics counselors have expressed their concerns about these matters in print, but this is the only attempt that I know of to foreground the experience of patients and technicians. Many sociologists have studied prenatal-diagnosis patients, but this is the only attempt that I know of to express patients' feelings in their own words (as opposed to statistical analyses of questionnaires); it is also the only attempt that I know of to take differences in ethnicity as seriously as differences in class and education.

Listening acutely and thinking subtly, Rapp teaches us that communication failures between practitioners and patients are the result not just of differences in language, not just of differences in scientific literacy—but also of profound differences in philosophy: beliefs about what makes a good parent; beliefs about what risk means; beliefs about the proper balance between personal autonomy and commitments to family; beliefs about the nature of disability; beliefs about the moral status of the fetus. Among many other lessons that the book has to teach is this: the holy grail of nondirective counseling can never be completely achieved (although it remains worth striving for), not only because practitioners can never be completely objective but also because patient belief systems are so complex that they can never be completely understood through such obvious social markers as race, gender, education, and class.

Like many anthropologists, Rapp was at pains to specify—and investigate—all the actors in the culture of prenatal diagnosis. Consequently, one of her research protocols involved participant observation of a diagnostic laboratory, a workplace that has rarely been explored by social scientists or historians. Rapp's account (chap. 8) of what she came to understand as the "social construction of a diagnostic fact" is fascinating, not just in its description of how much cellular manipulation precedes the reading of a karyotype, but also in its account of the social interaction that occurs when a manipulated image ends up containing an ambiguity.

Prenatal diagnosis raises some of the most complex economic, social, and ethical issues in medicine today. Rayna Rapp has given us a disciplined and wise account of those issues and their complexity. Unfortunately, the text abounds with the language of social construction. Scholars who are familiar with that language will have no difficulty understanding why it is...