By Cansu Canca
A recent New York Times article drew attention to an issue with increasing importance as technology develops. Gene samples collected under conditions of anonymity reveal more and more information that may be of crucial importance for the subjects or their relatives. Researchers feel a moral obligation to disclose these important findings, which may even be life-saving, to the subjects. Yet, the anonymity clause in the consent forms prevents them from doing so.
Whether or not researchers can or must disclose the information in spite of the anonymity clause mainly turns on two issues: the scope of the informed consent and the reach of the obligation for beneficence.