All God's mistakes : genetic counseling in a pediatric hospital

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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According to University of Pennsylvania sociology professor Bosk ( Forgive and Remember ), the kind of applied genetic science which he observed during three years as a ``guest'' witness of a team of genetic counselors in an unidentified children's hospital ``promises to revolutionize medicine.'' While the author's focus is the ethnological nature of the project, his convincing report also discusses technical aspects of prenatal diagnosis and detection of such genetic diseases as spina bifida, sickle-cell anemia and hemophilia, entailing often difficult decisions that confront parents of neonatal victims. Bosk predicts that the humble ``expert neutrality'' status of counselors will be upgraded and expanded to meet the needs created by the rapid pace of change in applied human genetics and to cope with increasingly aggressive, autonomous patients and parents. (Sept.) (c) Copyright PWxyz, LLC. All rights reserved

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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.

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