Clinical Ethics and Family Morality

Doukas and Berg (2001) take a significant step by recognizing that in genetics the family plays a significant role in genetic counseling and testing, and the family, not simply the individual, is the patient. The family covenant that they propose offers clinicians a means of providing family members direct access to information about a hereditary condition that affects them medically, psychologically, and socially. The primary concerns of their paper and of many of the accompanying commentaries (Bartels 2001; Miller 2001; Koppelman 2001; and Parker 2001) are issues of participants' confidentiality and autonomy. Before venturing into the specifics of the proposal, however, it is valuable to first ask what is to be gained by the proposed redefinition of the family as patient.

Clinical Ethics and Family Morality

The primary value in offering family-based counseling appears to be the efficiency of counseling a number of family members simultaneously. It anticipates a time when more genetic testing is available and the resources to provide counseling are limited. It also offers the prospect of providing a number of family members with consistent information about topics of mutual interest. In the current state of genetic testing for many late onset conditions, as Moss (2001) notes, few medical interventions are recommended based solely on test results that indicate the presence of a deleterious mutation. Consequently, the pre- and post-test genetic counseling is primarily concerned with the course of the illness if it occurs, medical-screening procedures, the possible psychological impacts of testing, effects of testing and/or results on relations among family members, and the social dimensions of risk such as possible discrimination for insurance.

While it is clear that family members may have an interest in knowing about a familial genetic condition, is this concern of medical consequence? Does this constitute an appropriate medicalization of both the information about the disease and testing on the one hand, and the potential effects of testing on the relations among family members on the other? If the medical information and interventions are limited, what are the ethical implications of clinicians providing families, rather than individuals, with psychological and social counseling about genetics, genetic testing, and its impacts?

While clinicians are bound by the principles and precedence of bioethics, family members do not have the same clearly enunciated obligations. Their relations extend beyond the contractual limits of professional-patient relations (Ashcroft 2001). Though they may recognize the same general principles, the contexts in which they apply them are not limited to carefully orchestrated clinical sessions with individuals in delimited professional roles. The family covenant, if applied to the full range of genetic counseling, would attempt to corral the morality of complex, everyday relationships among family members within the confines of clinical protocols. Concern for the autonomy and confidentiality of individuals under the covenant relationship is a medicalization or professionalization of the diverse moral relationships that ebb and flow among members of families.

Variations in Values

The values of family members and each family's strategy for dealing with the risk of a late onset disease frequently differ. While family structures are diverse, the effect of family composition itself is limited. Values within families vary and even produce conflict (Moss 2001), reflecting patterns of familial communication (Swartz 1982). The general experiences of family members during their life courses—as well as the particular experiences of a family member's symptoms, diagnosis, and treatment of a hereditary disease—have a significant impact on family patterns of communication and individuals' understandings of the disease, their own risk, and the value that they place on testing and its results (Green et al. 1997; Cox and McKellin 2000). Potentially contentious relations that have been kept secret from other family members may affect communication and sharing among members of a family covenant. Not only is it doubtful that family practitioners or other clinicians will have the time or training to deal with the complex family dynamics that often surround hereditary diseases, as noted by Bartels (2001), it is also questionable whether it...