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Risks to Relatives in Genomic Research: A Duty to Warn?

ability to take control of their lives and realize or adjust life plans. In addition, there are several genetic findings conceivable that may promote the well-being of participants’ relatives because they, for example, improve their health or avoid deterioration. The arguments of reciprocity and engagement (particularly the acknowledgment that translational research cannot progress without the active engagement of research participants) are, however, less relevant in this context. After all, deceased participants’ relatives did not actively contribute to the research endeavor. Moreover, there are reasonable limits to beneficence, as researchers do not have limitless duties to promote the well-being of their study participants, their participants’ family members, and so on. Clearly, that would be disproportionate and overly demanding. In view of the preceding, the prima facie duty to feed back individual genetic data to research participants is weaker when applied to disclosure to deceased participants’ relatives. We therefore propose to enable access to research results to relatives from deceased participants, but only to those results that are allocated into the default package, that is, findings of immediate clinical significance. Chan and colleagues (2012) rightly conclude that the relatively small burden for researchers of (at least) passive disclosure does not provide strong reason to withhold relatives the benefits of receiving genetic results, but this still requires a decision regarding which results are to be made available. As even passive disclosure will ask some efforts, such as confirming of the results in a clinical laboratory and counseling, disclosure of all packages may become quite demanding. In addition, this raises the concern that researchers share information with relatives that the deceased participant did not want to share or that the recipients did not wish to receive. The option of disclosure to relatives in case the participant passes away would then become an additional feature of the default package. Adding this to the default package, thus, by means of an opt-out procedure, can be grounded in liberal paternalism as well: liberalism in the sense that participants are still free to choose not to release results to family members, but (soft) paternalism because we send the message to the research participant that sharing this information with one’s family members after death is the right thing to do. In sum, adding disclosure to relatives as an additional feature of the default package seems to us a balanced and pragmatic method to, on the one hand, offering deceased participants’ relatives the benefits of high-risk clinically useful genetic information and, on the other hand, protecting research and the privacy of the research participant.