Overview

In one case after another, Charles L. Bosk reveals the process by which parents, physicians and other health professionals come to guide decisions about pregnancies. A story 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 parents to be, and how they deal with their powerlessness to control life-and-death decisions that they must address.

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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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Charles L. Bosk was professor of sociology at the University of Pennsylvania.

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