Book Review: Testing Women, Testing the Fetus:

Rayna Rapp.
Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America
New York: Routledge, 2000, 361 pp.
$Cdn 29.95 paper (0–415-91645–3), $Cdn 45.00 cloth (0–415–91644–5)

Testing Women, Testing the Fetus is about the social impact and cultural meaning of prenatal diagnosis, especially the “simultaneously liberating and eugenic aspects of this technology” (3). Prenatal diagnosis (PND) includes amniocentesis and related techniques (such as ultrasound) used to screen fetuses for chromosomal anomalies and neural tube problems during the second trimester of pregnancy. Though such techniques are not as explicitly controversial as human cloning now is or as “sexy” as in vitro fertilization once was, they are among the most routinized forms of reproductive technology.

Grappling with the question of what it means, in a normative sense, to be human, and for whom, Testing Women, Testing the Fetus is enormous in scope. Contributing new understandings of the technological transformation of pregnancy, the practical intersection of disability and reproductive rights, and the role of scientific literacy in the late 20th century, the book is extensively researched and eloquently written, offering a rich amalgam of incisive analysis, moral wisdom and thought–provoking social commentary.

Such adjective–rich responses are well–earned. As an anthropologist and feminist activist, Rapp spent fifteen years conducting fieldwork on PND. Her interest in the topic began in 1983 when a routine prenatal diagnosis revealed that the fetus she was carrying had Down syndrome. Finding herself both “grateful for and critical of technology”, this tragic “life–transforming” experience convinced Rapp of the need for a woman–centred analysis of prenatal diagnosis. Finding PND to be a highly “complex cultural object”, Rapp employed an array of field methods in multiple sites. Her open–ended approach included repeated observations of intake interviews and counseling sessions at seven hospitals offering prenatal diagnosis, participant observation in a cytogenetic laboratory, as well as in–depth interviews with pregnant women who used or refused the test and their supporters, genetic counselors, geneticists, lab technicians and others involved in the provision of services. She also spent time with parents of children with disabilities and professionals who work with them. Some informant families eventually became her friends. Little wonder that after such deep immersion in the field, Rapp experienced a profound intersection between her research and personal life; there was she says, an “escalating whirlwind of data that blows through my daily life” and this resulted in a “serendipitous second round of data”. Friends wanted advice and health care providers requested immediate feedback on how her study findings might be applied to improve clinical protocols or better address the needs of women considering PND.

How researchers ought to manage such requests is seldom a topic of methodology books. Indeed, it is a real strength of this book that readers are invited into the field worker’s struggle to define the most ethically responsible means of giving feedback in real world situations. Sometimes this means that researchers have to come up with preliminary findings before completion of the data collection stages. “Contaminating” interventions are, in such situations, not simply about compromising objectivity or introducing bias; they are about power, unequal access to resources and the obligations we incur as researchers when we ask people to tell us stories that feel like “crucibles of tough decision–making” (17).

Testing Women, Testing the Fetus is comprised of eleven chapters that each take up a distinct communicative and practical problem posed by the technology. At the heart of the book, however, is a deep concern with the lived experiences of women confronted with tough decisions about PND and selective abortion. These women are “moral pioneers” or “philosophers of the private” who weigh the possibility of bearing and raising a child with Down syndrome or other anomalies against the agony of establishing for themselves the criteria which permit or deny entry into the human community. Recognizing that the burdens and the benefits of the technology are disproportionately distributed, Rapp amply demonstrates how socio–economic status, ethnic and cultural diversity are inextricably intertwined in the decisions that women make. As such, Rapp like the vast majority of her study participants, upholds the need to respect all women’s rights to carry or refuse to carry to term a pregnancy that would result in a baby with a serious disability. At the same time, she argues forcefully in support of the need to provide adequate services for all children that women bear. The role of men in PND is more difficult to discern. Rapp encountered difficulty recruiting men to her study (she interviewed fifteen men as opposed to eighty women) and found it particularly difficult to interview men about amniocentesis in the presence of their pregnant mates. Nonetheless, she came to believe that the morally fraught nature of PND tends to disrupt gendered assumptions and defy any one pattern of dominance and subordination.

The only weakness I found in the book has to do with my own predilection — that is, I wanted Rapp to engage with the question of how empirically grounded work on intensely complex social issues can enrich the field of bioethics. Though I share Rapp’s concern that the legitimizing discourse of bioethics may, like “a giant modem”, transmit a excessively rationalized view of the benefits of the human genome project to an eager public (217), I am not convinced this has to be. Rapp is perhaps too modest to see that in juxtaposing several competing discourses in her own analysis, she has provided a conceptual framework that could be put to many uses.

If we are, as Rapp suggests, “living out a history of the present”, her timely and thought–provoking analysis has done much to illuminate the complex role that genetic discourse plays in shaping and reflecting our cultural notions of what it means to be human. On these grounds, the book ought to appeal to a wide audience. In addition, Testing Women, Testing the Fetus would be suitable as a supplementary text in graduate or senior undergraduate courses in medical anthropology and sociology as well as cultural studies, science and technology studies, gender and/or disability studies. The book would also be a wonderful addition in courses for health care providers on genetics, ethics and social issues.

Susan M. Cox
Centre for Applied Ethics
University of British Columbia
suecox@interchange.ubc.ca



		Canadian Journal of Sociology Online November - December 2001 Rayna Rapp. Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America New York: Routledge, 2000, 361 pp. $Cdn 29.95 paper (0–415-91645–3), $Cdn 45.00 cloth (0–415–91644–5) Testing Women, Testing the Fetus is about the social impact and cultural meaning of prenatal diagnosis, especially the “simultaneously liberating and eugenic aspects of this technology” (3). Prenatal diagnosis (PND) includes amniocentesis and related techniques (such as ultrasound) used to screen fetuses for chromosomal anomalies and neural tube problems during the second trimester of pregnancy. Though such techniques are not as explicitly controversial as human cloning now is or as “sexy” as in vitro fertilization once was, they are among the most routinized forms of reproductive technology. Grappling with the question of what it means, in a normative sense, to be human, and for whom, Testing Women, Testing the Fetus is enormous in scope. Contributing new understandings of the technological transformation of pregnancy, the practical intersection of disability and reproductive rights, and the role of scientific literacy in the late 20th century, the book is extensively researched and eloquently written, offering a rich amalgam of incisive analysis, moral wisdom and thought–provoking social commentary. Such adjective–rich responses are well–earned. As an anthropologist and feminist activist, Rapp spent fifteen years conducting fieldwork on PND. Her interest in the topic began in 1983 when a routine prenatal diagnosis revealed that the fetus she was carrying had Down syndrome. Finding herself both “grateful for and critical of technology”, this tragic “life–transforming” experience convinced Rapp of the need for a woman–centred analysis of prenatal diagnosis. Finding PND to be a highly “complex cultural object”, Rapp employed an array of field methods in multiple sites. Her open–ended approach included repeated observations of intake interviews and counseling sessions at seven hospitals offering prenatal diagnosis, participant observation in a cytogenetic laboratory, as well as in–depth interviews with pregnant women who used or refused the test and their supporters, genetic counselors, geneticists, lab technicians and others involved in the provision of services. She also spent time with parents of children with disabilities and professionals who work with them. Some informant families eventually became her friends. Little wonder that after such deep immersion in the field, Rapp experienced a profound intersection between her research and personal life; there was she says, an “escalating whirlwind of data that blows through my daily life” and this resulted in a “serendipitous second round of data”. Friends wanted advice and health care providers requested immediate feedback on how her study findings might be applied to improve clinical protocols or better address the needs of women considering PND. How researchers ought to manage such requests is seldom a topic of methodology books. Indeed, it is a real strength of this book that readers are invited into the field worker’s struggle to define the most ethically responsible means of giving feedback in real world situations. Sometimes this means that researchers have to come up with preliminary findings before completion of the data collection stages. “Contaminating” interventions are, in such situations, not simply about compromising objectivity or introducing bias; they are about power, unequal access to resources and the obligations we incur as researchers when we ask people to tell us stories that feel like “crucibles of tough decision–making” (17). Testing Women, Testing the Fetus is comprised of eleven chapters that each take up a distinct communicative and practical problem posed by the technology. At the heart of the book, however, is a deep concern with the lived experiences of women confronted with tough decisions about PND and selective abortion. These women are “moral pioneers” or “philosophers of the private” who weigh the possibility of bearing and raising a child with Down syndrome or other anomalies against the agony of establishing for themselves the criteria which permit or deny entry into the human community. Recognizing that the burdens and the benefits of the technology are disproportionately distributed, Rapp amply demonstrates how socio–economic status, ethnic and cultural diversity are inextricably intertwined in the decisions that women make. As such, Rapp like the vast majority of her study participants, upholds the need to respect all women’s rights to carry or refuse to carry to term a pregnancy that would result in a baby with a serious disability. At the same time, she argues forcefully in support of the need to provide adequate services for all children that women bear. The role of men in PND is more difficult to discern. Rapp encountered difficulty recruiting men to her study (she interviewed fifteen men as opposed to eighty women) and found it particularly difficult to interview men about amniocentesis in the presence of their pregnant mates. Nonetheless, she came to believe that the morally fraught nature of PND tends to disrupt gendered assumptions and defy any one pattern of dominance and subordination. The only weakness I found in the book has to do with my own predilection — that is, I wanted Rapp to engage with the question of how empirically grounded work on intensely complex social issues can enrich the field of bioethics. Though I share Rapp’s concern that the legitimizing discourse of bioethics may, like “a giant modem”, transmit a excessively rationalized view of the benefits of the human genome project to an eager public (217), I am not convinced this has to be. Rapp is perhaps too modest to see that in juxtaposing several competing discourses in her own analysis, she has provided a conceptual framework that could be put to many uses. If we are, as Rapp suggests, “living out a history of the present”, her timely and thought–provoking analysis has done much to illuminate the complex role that genetic discourse plays in shaping and reflecting our cultural notions of what it means to be human. On these grounds, the book ought to appeal to a wide audience. In addition, Testing Women, Testing the Fetus would be suitable as a supplementary text in graduate or senior undergraduate courses in medical anthropology and sociology as well as cultural studies, science and technology studies, gender and/or disability studies. The book would also be a wonderful addition in courses for health care providers on genetics, ethics and social issues. Susan M. Cox Centre for Applied Ethics University of British Columbia suecox@interchange.ubc.ca http://www.arts.ualberta.ca/cjscopy/reviews/ November 2001 © CJS Online