ABSTRACT

In the preceding chapters, I have attempted to analyze the social impact and cultural meanings of prenatal diagnosis from the perspectives of many different kinds of people: pregnant women and their supporters who used or refused the test; genetic counselors, geneticists, lab technicians, and others involved in the provision of relevant health services; parents of children with some of the same disabilities that can now be diagnosed prenatally, and professionals who work with those children. I began by describing salient aspects of the intersecting histories of human genetics, eugenics, and relevant legal formations within which the development and routinization of amniocentesis and its associated technologies came to “make sense”: The seemingly intimate and private realm of contemporary women's pregnancies and their outcomes converge with these international, national, and local developments. It was against this sociohistorical background, and the escalating geneticization of the “history of the present” that pregnant women's entry into genetic counseling and the offer of prenatal testing were situated. Following a highly diverse group of New York women through counseling, their decisions to use or refuse amniocentesis, and home visits during the waiting period for its results engaged me in their fears and aspirations concerning fetal health and what specific disabilities might mean to them and their families. I also described the highly skilled technoscientific laboratory labors involved in producing and stabilizing diagnoses, and the impact of receiving a “positive” diagnosis on women who then chose to end their pregnancies. Finally, I reported on what I had learned by working with families whose children had Down syndrome (or some other hereditary conditions) about the disparity between a medical diagnosis and the social integration of a child with a stigmatized difference.