To Tell or Not to Tell: Mandating Disclosure of Genetic Testing Results

Family physicians will often have access to confidential information relating to one patient that is relevant to the care of another family member who is also their patient. This puts the physician in a classic conflict of interest position: the duty to maintain confidentiality may prevent doing what is best for the second patient. Such a conflict is particularly likely to occur in situations involving genetic testing results, since those results will often be highly relevant to health issues for many members of a family. Doukas and Berg (2001) correctly note that the physician's dilemma can be resolved by having the family members enter ahead of time into a negotiated agreement (a "family covenant") that determines how the physician should resolve the possibly conflicting interests of different family members. Their proposed solution is similar to what lawyers regularly must do when they simultaneously represent clients whose interests are likely to conflict.

While the physician's conflict of interest problem is certainly legitimate, resolving it does not really address the core issues with which Doukas and Berg appear to be concerned. As they note, genetic tests are somewhat unique in that their results are often of importance not just to the specific patient tested, but also to "many, if not all, family members." A key point, however, is that this consequence occurs regardless of whether or not the family members in question go to the same physician. Consider, for example, the three cases they highlight. Change the facts in each instance so that the relatives are not cared for by a single physician. In each case the core ethical dilemma remains: Is it appropriate that a family member be permitted to maintain the confidentiality of health information that is relevant to other family members? This core dilemma exists independent of any specific physician being in a position of caring for two family members. And its resolution may be something that society is not willing to leave to the circumstance of which relative is the best negotiator during the creation of a family covenant. While Doukas and Berg suggest a solution that promotes the autonomy of the participants, it may well be that this problem merits a solution that trumps such autonomy.

Thus, in Doukas and Berg's Case 1, is our society content to allow a husband to sit by and not tell his wife about the fact that their child would have a 50% chance of inheriting a devastating condition? If this form of behavior troubles us, then it should be equally troubling whether or not both spouses are cared for by the same physician and regardless of who got the upper hand in a negotiated disclosure agreement. And if we want to devise a remedy, that remedy should also apply in all appropriate instances.

Indeed, the legal cases relating to disclosure of genetic test results did not deal with situations where the parties all used the same physician. In Pate v. Threlkel (661 So2d 278 [1995]), Heidi Pate developed thyroid carcinoma three years after her mother was treated for that disease. She sued her mother's doctor, complaining of his failure to tell her mother that her children would be at risk. In Safer v. Estate of Pack (677 A.2d 1188 [1996]), Donna Safer similarly sued her father's physician. The court concluded Dr. Pack did indeed have a duty to somehow warn her that she, too, might fall victim to the familial polyposis from which her father suffered.

There is a difference between determining that information must be disclosed, and deciding on whom to impose a duty to disclose (Menikoff 2001). Pate and Safer suggest one option might be to impose on physicians a duty to disclose. Another viable option might be to impose the duty only on the family member. No matter on whom the duty is ultimately imposed, the existence of such lawsuits and the courts' responses demonstrate an appropriate recognition that genetic testing may be one ofthose instances in which a patient's desire for confidentiality should be forced to give way to the well-being of others...