By Ron Green

susceptibility to a disease, the knowledge of which can help them pursue preventative strategies. Current testing for known breast cancer mutations is an example. In these cases, whenever the specific genes involved have not yet been identified, researchers or clinicians must conduct extensive family linkage studies to determine the pattern of inheritance. One or more family members can block progress by refusing to participate in the study. The principle of respect for autonomy certainly supports such refusals, but should this principle trump research that is needed to improve the health of other members of the family? Sometimes, the reverse problem arises: some members demand participation by other relatives in ways that exert pressure on them.

Alternatively, in some cases one person's use of a genetic test may harm others in the family. This problem has arisen in connection with Huntington disease, a fatal, later-onset neurological disorder for which no treatment exists. There have been instances when one twin of a pair of identical twins has insisted on testing and the other twin, unwilling to be subjected to the fearful psychosocial harms that testing can bring, has objected.

Social workers, psychologists, genetic counselors, and others who work closely with families know that such disputes often reveal deep fault lines and sources of conflict within a family. When faced with these cases, they also recognize that it is not a matter of just solving an ethical problem, but of understanding and addressing the underlying problems that give rise to these conflicts. The familial nature of genetic information will undoubtedly increase the number and intensity of conflicts that come before caregivers or counseling professionals.

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