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The American Journal of Bioethics 1.3 (2001) 17-18



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The Family Covenant:
A Flawed Response to the Dilemmas of Genetic Testing

Gregory Stock
UCLA

Doukas and Berg (2001) propose a family-covenant framework that seems a well-meaning and thoughtful approach to some of the ethical dilemmas the genomics revolution is bringing, but the concept is deeply flawed. It is out of touch with the realities of day-to-day medical practice in the United States. It romanticizes the family. It would be a highly inefficient use of already overburdened medical and counseling professionals. It would require too great an up-front commitment of time and energy to appeal to any but the most unusual of families. And it does not anticipate impending changes in genetic testing.

While such family covenants might be a way for family doctors to lessen the conflicts in loyalty and professional responsibility they experience when serving multiple family members, the framework would offer little to most families. Not that the discussions required to establish a family covenant wouldn't be a valuable educational experience for any family whose members had the time, energy, and interest. But family members willing to slog through so challenging an up-front negotiation as that imagined by Doukas and Berg likely also would be willing to communicate to at-risk relatives after receiving an adverse genetic test indicator. Those families, on the other hand, that could most benefit from a covenant structure were they to face medical dilemmas such as those envisioned in Doukas and Berg's paper, would be the least likely to enter a negotiation to set up the structure. Could anyone imagine, for example, that in Doukas and Berg's Case 1, the husband—a man who has never even mentioned to his wife that his father died of Huntington's disease—would ever enter into such a covenant?

According to Doukas and Berg,

The physician would help to identify potential conflicting autonomy and beneficence claims and, given these claims, the means by which he or she could then treat family members. The parameters of the physician's obligations to covenant members would also be negotiated and clearly articulated at the outset of the covenant. The physician and family would discuss how disputes would be handled and how they envision the physician's and family members' roles in their care.

This would be no small task. A family covenant is not a realm for one-size-fits-all boilerplate. Such a negotiation, if undertaken seriously, would be challenging even if there were only one concrete genetic risk to work through. A meaningful general negotiation in the abstract would be nearly impossible. Doukas and Berg cite specific cases in their paper for this very reason—the cases focus our attention and help clarify the issue. But we know that each real-life situation will be unique and require significant effort to think through. When even physicians are not likely to be well-informed about many genetic conditions, it is unrealistic to expect patients to deal with such issues intelligently unless they are highly motivated. This is certainly not the case when a patient is "first entering a practice or coming in for some regularly scheduled exam," a possible time proposed by Doukas and Berg for starting the process. It would be even worse to try to negotiate the covenant "as part of the educational and counseling process that takes place prior to the initiation of genetic testing," the other possible time the authors put forth. Too many people would be unwilling to tell everyone in their family that they were undergoing such testing. Such a disclosure might not only mean revealing undiagnosed and worrisome physical ailments to everyone, it might worry relatives unnecessarily about their own health at a time when the patient is still hoping for a good test result.

Except in atypical situations, I just cannot see serious negotiations of this sort taking place. With patients today rarely even reading their own consent forms, it is a fantasy to imagine whole families going through soul-searching discussions about what to do if faced by hypothetical genetic test results that...

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