Commentary: considering family covenants.

323 THIS ISSUE CONTAINS a thoughtful proposal by David J. Doukas, M.D., entitled, “Genetics Providers and the Family Covenant: Connecting Individuals with Their Families.” It claims that the current method of handling requests for genetic information and genetic testing is ad hoc, i.e., that it responds to the request of an individual without due regard to the interest of the extended family. Dr. Doukas recommends that, in advance of conducting genetic testing, the provider of genetic services negotiate a family covenant in which the boundaries of privacy and information-sharing within the family are agreed upon. The parties to this covenant-making process are to be identified by family members, need not be blood relatives, and can be unrelated friends. Dr. Doukas mentions a recent court decision in which a provider was found guilty of not warning relatives of a genetic risk. One advantage of a family covenant, it is argued, is for the family to collectively decide who will learn what. The author, a family physician specializing in ethics, believes that formulating such a family covenant in advance of genetic testing can minimize potential intrafamily conflict. However well-intentioned, this proposal presents practical difficulties in its execution. First, medical care in general, and not just current genetic testing, is largely an ad hoc process. Like the family physician, the provider of genetic services responds to a specific need expressed by an individual, couple, or nuclear family. If every such request required bringing together an extended family, few requests could be met. Second, it is not clear how the “family” is to be defined. A member outside the nuclear family might need considerable medical and genetic information in order to decide whether to participate. Further, to include persons who were neither blood relatives nor significant others (Table 1, #2) would be unconventional. The current emphasis on privacy and confidentiality imposed by the Health Insurance Portability and Accountability Act of 1996 is making difficult even traditional sharing of medical information. Third, the procedure outlined appears to place responsibility on the provider to initiate the construction of a family covenant (Table 1, #1). But, according to current genetic practice, the patient seeking services is the one expected to initiate any contacts with those outside the nuclear family. A family physician may occasionally be the physician for the other relevant persons, but most physicians and geneticists will not have any preexisting relationship with an individual’s relatives outside the nuclear family. Therefore it is not obvious that the physician will be “entrusted” (Table 1, #3) to be negotiator even if the physician is willing to try. Leading such a meeting would be very difficult without prior acquaintance with the individuals involved, since family members are likely to differ greatly in their prior knowledge, desire for further genetic information, and psychological characteristics. Fourth, a family, however defined, is a dynamic structure. An agreement reached at one point in time may soon become outdated because of illness, marriage, pregnancy, change in financial status, family conflict, or technological advance. In acknowledging Dr. Doukas’ concerns and to minimize potential family conflict, what is the medical geneticist to do? One practical step is to ask the person presenting for testing, before testing is performed, to consider what he or she would do in the case of each possible test outcome, including to whom to communicate the result. Further, in cases involving a serious dominant trait, once a deleterious mutation is detected in a family member, the testee may wish to initiate an educational meeting of the extended family at which the health professional could explain the benefits, risks, and limitations of genetic testing.