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September 3, 2003

Genetic Information and Competing Interests

JAMA. 2003;290(9):1216. doi:10.1001/jama.290.9.1216-a

The 2003 Conley Ethics Essay competition asked medical students to consider the competing interests of a mother and daughter faced with the mother's Huntington disease (HD), a genetic disorder that causes relentless neurological decline and that is 100% penetrant in carriers of the gene. The mother, however, refuses to discuss her diagnosis with her daughter because she does not wish to burden her. The daughter is considering starting a family and knows nothing about the family history of HD. This issue of MSJAMA presents the essays by the winners of this year's contest, Andrew Garrison and Courtney Wusthoff. They attempt to outline approaches to the problem that uphold ethical standards while providing the best care possible to both patients.

Although both authors ultimately argue that the mother's genetic information should not be disclosed to the daughter, Wusthoff and Garrison diverge in the rationales for their arguments as well as their approaches to finding an acceptable remedy for the situation. Garrison examines the ways that ethical consensus and case law can be used to shed light on the issue. Wusthoff, on the other hand, emphasizes the psychological and social aspects of genetic testing, arguing that what appears to be an intractable ethical dilemma may actually be a part of the mother's coping process that will resolve itself with time.

Both authors choose to base their arguments in some part on guidelines put forth by committees from the American Society for Human Genetics and the Institute of Medicine, both of which follow the position of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. These bodies take the position that disclosure of genetic results is sometimes permissible under specific conditions: when attempts to encourage the patient to disclose his or her results have failed, and serious harm to the relative can be anticipated; when the at-risk relative can be identified; and when the information disclosed can be used to prevent or treat the disease in the relative. This framework provides a useful approach to the question, but as both authors show, determining who is at risk, how they might be harmed, and what "treatment" of a condition entails can be murkier than might appear at first glance.

Although most clinicians are unlikely to come across a scenario like the one presented here, the issues it raises are more universal: When is it permissible to act against the wishes of a patient to promote his or her best interest? When do the interests of others outweigh the rights of one person? These are questions that emerge with some frequency in clinical settings. These essays represent 2 approaches to these questions, attempting to find ethical solutions to the problem that also promote a good clinical relationship.

Acknowledgment: We thank our judges for this year: George Annas, Mark Schechter, and Jeffrey Botkin.