Knowledge of one's own genetic information may cause conflict for other family members

(Philadelphia, PA) -- Now that the human genome has been sequenced, more and more genetic tests will be sought by patients for a multitude of diseases and conditions. Since genetic information about one family member also supplies information about other family members, conflicts between siblings -- and parents and their children -- regarding who wants to know/not know the contents of that familial information, will certainly emerge. To alleviate this potential for conflict, David Doukas, MD, of the Center for Bioethics and the Department of Family Practice and Community Medicine at the University of Pennsylvania School of Medicine and Jessica Berg, JD, assistant professor of law and bioethics at Case Western Reserve University, offer a model of patient care known as the family covenant.

The family covenant -- which is explained in the American Journal of Bioethics (Vol. 1, No.3) -- defines the roles of the physician, patient, and family prior to the start of the genetic testing. It also offers these participants a mechanism to help resolve competing claims for confidentiality and disclosure about information gained through the testing. While intended for primary care physicians, who care for multiple family members, the covenant is especially useful for any health provider who may potentially have contact with multiple family members (e.g., genetic counselors and human geneticists). "The family covenant is a healthcare agreement for a family and a family physician that is intended to help these parties with ethical dilemmas that may arise in medical decision-making," explains Doukas, who originally defined the concept in 1991.

"The timing of this agreement -- before the testing has started -- is important in order for each family participant to discuss and define the boundaries of confidentiality and the needs of other family members."

The primary care physician will be the likely point of contact as genetic testing becomes more prevalent, thus making him/her responsible for initiating discussions about the covenant during the educational and counseling process that normally takes place before the start of any genetic testing. All parties who choose to be part of the covenant consent to the premises of an initial agreement as to what information is divulged and to whom in a way deemed acceptable to all parties.
Family members who choose to not consent to the family covenant are not bound by it. The physician's obligations to covenant members are negotiated and clearly articulated at the outset of the covenant, and the handling of any future disputes is also discussed at this time.

"The family covenant is an on-going, growing, flexible, voluntary healthcare agreement, based on a contract that is consented to by the participating parties," states Doukas. "It is designed to educate patients and family members about the potential implications of genetic testing up front, before engaging in that activity, and will facilitate communication by helping patients and their physician understand how information is to be shared within the family, as they design its parameters."

The dawning of the genetics revolution has the potential to change the face of medicine. Patients and their physicians, in good faith, need to consider the impact of genetic test results on other family members. The family covenant offers patients who desire genetic testing and their families the opportunity to resolve competing claims for confidentiality and disclosure before the conflict begins, thus protecting each individual's right. The use of this preventative ethics approach will allow for the avoidance of greater difficulties that may arise in the course of a patient's care.


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