Testing Women, Testing the Fetus The Social Impact of Amniocentesis in America

1. How Methodology Bleeds into Daily Life 2. Accounting for Amniocentesis 3. The Communication of Risk 4. Contested Conceptions and Misconceptions 5. Waiting and Watching 6. The Disabled Fetal Imaginary 7. Refusing 8. Culturing Chromosomes, or What's in the Soup 9. An Error in Cell Division, or the Power of Positive Diagnosis 10. The Unexpected Baby 11. Ending Are Really Beginnings

Biography

Rayna Rapp is Professor of Anthropology at the New School for Social Research and has been active in the movements to establish U.S. women's studies and reproductive rights for more than twenty-five years. Rapp has researched prenatal diagnosis as an anthropologist and as a feminist activist for over a decade, and is editor of the classic Toward an Anthropology of Women (1975) and co-editor of Conceiving the New World Order (1995).

"Testing Women, Testing the Fetus is a compelling ethnography of the lived experience of geneticization of American society. It is a deeply human account of the embeddedness of reproductive technologies in fundamental social processes involving gender, class, political economy, and moral contestation. From family homes through clinics and hospitals to laboratories and disability settings, this incisive study takes the reader across a huge landscape of people and power participating in technological transformation in America. A richly rewarding read!" -- Arthur Kleinman, M.D., Presley Professor of Medical Anthropology, Harvard University
"If you like to know everything about a subject before making a decision--and you're facing an amnio--you'll get support and information from Testing Women, Testing the Fetus...Rapp shares a wide variety of compelling human stories that are rarely told." -- Colorado Parent
"[A] monumental and challenging study...A rigorous illumination of both the scientific and the social practices of amniocentesis. So impressive is this achievement, indeed, that I think it possible to say that Testing Women, Testing the Fetus may provide us with a model of intellectual deportment that anthropologists, genetic counselors, medical professionals, bioethicists, research scientists, and even cultural critics--yes them too--will do well to acknowledge and emulate." -- Tikkun
"This is a complicated late-twentieth-century tale in which we never lose sight of the human minds and persons behind it. An account shot through with quite dazzling perceptions of particular, located dilemmas which epitomize the intersections of genetic knowledge, prejudice and diagnosis. With remarkable skill, the author brings each dilemma back to its moment of human impact. A rare book in the field, it documents in vivid detail the complexity of the social circumstances surrounding genetic testing, quite as much as the cultural and technological. This brilliant study has been long awaited--it will exceed expectations." -- Marilyn Strathern, Professor of Social Anthropology, Cambridge University and author of The Gender of the Gift
"Rapp's deep analysis is relevant to women of every ethnic, religious and class background and asks the necessary questions preceding each potentially difficult choice." -- Daily News
"By observing genetic counselors at work and talking to families raising children with disabilities, [Rapp] discovers the practical problems connecte with testing and the different responses to pregnancy, family life, and disability in diverse ethnic groups and social classes." -- Library Journal
"In addition to tracing how genetic counselors' focus on individual choice can mask social context, Rapp also reveals how women, with or without partners, negotiate the important decision whether or not to undergo the test...A valuable exploration of the moral and personal decisions involved in bringing a pregnancy to term." -- Publishers Weekly
"[An] ethnographically innovative book in more than metaphorical ways...Chronicles the struggles, despair, hope, relief, confusion, exhilaration, and, above all, the thoughtfulness of pregnant women as they come to fraught decisions about which children will or will not be born. Rapp calls these women moral pioneers because, willing or not, they have become the moral philosophers of the private in the late twentieth-century United States." -- Donna Haraway, University of California at Santa Cruz
"This book marks a watershed in our anthropological understanding of how people in diverse walks of life are weaving genetic knowledge together with their concepts of parenthood, childhood, family, and work. Meticulously and thoroughly researched in multiple sites from genetics labs and genetics counselors' offices to the homes of families raising children with genetic anomalies, Rapp's work opens new horizons of understanding: she shows how distinctions along lines of class, religion, gender, sexuality, age, language, and ethnicity differently refract scientific genetic knowledge into social and cultural knowledge. Beautifully written and engrossing to read, this book is essential for teachers, researchers, and participants in the culture and politics of reproduction." -- Emily Martin, author of The Woman in the Body: A Cultural Analysis of Reproduction
"Her books is arguably the definitive work on prenatal testing in the U.S." -- The Christian Century