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All God's Mistakes: Genetic Counseling in a Pediatric Hospital.

If scientists' prognostications are to be believed, we stand at the brink of a virtual explosion of knowledge about human genetics that may change how we think about and what we do about disease. The Human Genome Project, an ambitious fifteen-year effort to map the entire human genetic structure, is already well underway. It is virtually assured that this vast endeavor will locate associations, predispositions, linkages, and causes of various forms of human dysfunction. It is equally likely that it will also discover subtler and subtler genetic differences in people that will become grist for the "discovery" of new and as yet unknown "disorders." Professionals and laypeople alike will need guides who are well acquainted with the cartography of human genetics to help steer us through this mass of new information. Given our current medical division of labor, genetic counselors are the obvious candidates for the job.

In All God's Mistakes, Charles Bosk offers us a firsthand look at genetic counselors at work. Bosk was invited by the genetic counseling service at an urban pediatric hospital to observe its counselors with the hope that he might be able to help them manage the vexing social problems they encountered in the course of their work. Bosk focused his observations on the three-hour clinic that met weekly; his observations took place over several years.

It is important to note that this fieldwork was completed over a decade ago, when genetic counseling was an emergent profession and in a setting where all the counselors were physicians. By now most genetic counseling is done by M.A. graduates of special genetic counseling programs. The data in the study were collected before Baby Doe, Baby M, surrogacy, Nancy Cruzan, and the current third-party restrictions. Indeed, as Bosk notes, when he was in the field, bioethics was only emerging as a discipline affecting clinical practice. Thus, this study has some built-in historical limitations. Nevertheless, there is something to be learned from what he himself emphasizes as the "witnessing" aspects of participant observation.

Basing much of his analysis on the occupational sociology framework pioneered by Everett C. Hughes, Bosk examines genetic counseling as work. While sometimes it is a little jarring to envision the genetic counseling clinic as the "shopfloor," he examines the routine operations in the medical workplace, emphasizing the perspective of the counselors and focusing both on professional-client and professional-colleague relations.

The genetic counseling unit served outpatients and inpatients. It was in the work with outpatients that the perspective of genetic counselors was most clearly articulated. The counselors wanted to provide the best technical information possible, but because of a strong desire to be value-neutral and nondirective, could not act decisively. They would be willing to offer options, or clarify situations (usually in terms of "conditional probability"), but they steadfastly refrained from taking charge. These physician-counselors emphasized the technical side of patient problems, avoiding emotional issues as much as possible.

In the context of the hospital, the genetic counseling unit functioned as a "mop up service" after a medical crisis. For example, after the birth of a baby with a genetic disorder, a neonatologist would call a genetic counselor for a consultation. The treating physicians would sometimes want help in diagnosis or treatment, but as often as not the higher prestige specialists wanted to turf the patients to the lower status professional. Since genetic counselors were at the lower end of the medical prestige hierarchy and really had no place else to refer the patient, they were left with the "dirty work" of dealing with the emotionally overwhelmed patients, something they were actually rather poorly equipped to do.

As Bosk elucidates how the counselors handled two cases that were "Baby Doe" situations (before Baby Doe regulations) we can see the physicians, parents, and nurses engage in what Renee Anspach has called "prognostic conflict." While the context differed, in both cases the parents sought and failed to withdraw treatment over medical objections: the physician-counselors paid little attention to the parents' wishes or desires. This reflected both the physicians' sense of clinical autonomy and their focus only on the individual implications of cases. The genetic counselors didn't contextualize their medical perspective; they wanted to avoid clinical controversy and thus paid little attention to issues like who will care for the baby, how care will be paid for, and most other implications of their work.

At various points in the book Bosk reflects on his study. He openly says he didn't enjoy the fieldwork. He was frequently uncomfortable with his role as a "witness"; he squirms verbally about his passive stance and his silence in situations where he wished he had spoken up. To his credit, he is explicit about his own ambivalence: "I never fully worked through a fundamental and futile opposition to the very idea of genetic treatment ... this moral qualm feels like a failing to be an impartial, sociological investigator." I suspect this discomfort, in the context of a current social scientific fashion of reflexivity in writing ethnography, spurred Bosk to make himself visible in the text, often by telling us where he was and what he was doing, and sometimes what he was feeling. He is very candid that he sometimes became angry at the genetic counselors about what they wouldn't do for patients and what they expected of him.

Years ago Erving Goffman urged students to study where the action is; in hospitals, ethnographers and bioethicists are both drawn to points where the friction of technique and the culture of values rub against each other. Whether these new studies will penetrate into the theory-driven world of applied ethics is not yet known, but together they represent the beginning of an ethnographic challenge to some of the taken-for-granted concepts in the bioethical discipline.

Overall, this is not a great ethnography, either in terms of "thick description" of the genetic counseling trade or in terms of the book's conceptual power. There are no lasting images like "wearing the hairshirt" or brilliant conceptions like the typology of medical mistakes Bosk made in his previous book, Forgive and Remember, now a near classic. The book muddles along, touching on numerous important issues, but finally doesn't cohere as a tightly woven ethnography. My feeling is Bosk struggled to make sociological sense of what he observed but only partly succeeded. As he frankly admits, "I never fully resolved that sense of distance between what I saw and what it all might mean. The text concentrates on what I saw." What Bosk saw and reports are the ordinary and everyday dilemmas of genetic counseling work a decade ago; with the predicted onslaught of genetic knowledge, we will do well to know as much as we can about how genetic counselors as guides and interpreters go about doing their work.
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Author:Conrad, Peter
Publication:The Hastings Center Report
Article Type:Book Review
Date:Jul 1, 1993
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