Genetic testing has become so precise that doctors can detect even the most subtle defects in fetuses at almost any time in a pregnancy. But what happens when a woman is told she is carrying a damaged fetus? What advice should be given to those at risk of bearing genetically defective children? How are birth defects explained to parents? In All God's Mistakes Charles Bosk takes readers inside the hospitals and laboratories where these dilemmas are confronted daily. From his fieldwork with a genetic counseling team in an elite urban medical center, Bosk shapes a remarkable account of the clinical applications of human genetics in medicine. His finely drawn observations form the basis for an often provocative portrait of the scientific, ethical, and professional conflicts that surround use of the new technologies of conception and prenatal diagnosis in the larger society. In one fascinating case after another, Bosk reveals the process by which physicians and other health professionals come to make decisions about pregnancies. A compelling depiction of both extraordinary drama and ordinary routine, this is a pioneering case study of authority and control in a pediatric hospital, showing how genetic counselors work with colleagues and with patients, and how they deal with their powerlessness to control life-and-death decisions that they must address. The first book of its kind, All God's Mistakes will be of considerable value as a source for informed decision making to the increasing number of people affected by the professional and personal consequences of the new medical technology.
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(219mm x 141mm x 16mm)
University of Chicago Press
Publisher: The University of Chicago Press
Country of Publication:
US Kirkus Review »
Bosk (Sociology/Univ. of Penn) examines the work of genetic counselors at a pseudonymous large urban clinical-and-research center, dubbed here the "Nightingale Children's Center," and then casts a critical eye on his own research techniques. Seemingly more than a little uncomfortable as a disinterested ethnographer whose research presses him into service as a bioethicist, Bosk reveals at least as much about his own work as he does about that of genetic counselors - those who advise prospective parents facing the risk, or certainty, of giving birth to a genetically defective child. It's worth noting that Bosk's research was conducted in the late 1970's, when genetic counseling was performed mostly by physicians. Since then, Bosk admits, graduates of two-year genetic counseling programs have taken over and the field has been altered by major cultural changes (growth of hospital ethics committees; public controversy over surrogate motherhood, right-to-die cases, and health-care rationing), while scientific advances have shifted the emphasis in genetics away from screening and prevention and toward diagnosis and therapy. Nevertheless, Bosk contends that what has remained the same is how information is passed on to patients, what issues shape decisions, and how and by whom decisions are made. Although the genetic counselors Bosk describes here saw themselves as information specialists and value-neutral decision facilitators seeking to ensure patient autonomy, Bosk finds that this ideal was difficult to achieve in practice. Furthermore, he says, genetic counselors' relatively low professional status often led them to defer to the judgment of the hospital's attending physicians and to act as "medical janitors," mopping up messy situations. Not as gripping as its title implies, but, still, a thoughtful contribution to the literature on a controversial subject. (Kirkus Reviews)
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