The Importance of Defining Actionability as Related to Disclosure of Secondary Findings Identified in Research.

health may be discovered (though the consent form specifically mentioned “urgent” health concerns, and the medical urgency of this finding is admittedly somewhat borderline). Available evidence does not suggest that the results would likely be emotionally distressing, and it is in fact likely that they would be helpful—clinically or otherwise. On the basis of the above considerations, we would recommend that the research team confirm the diagnosis and disclose it to Mr. Robinson. While doing so is not ethically obligatory, given the stakes, there is still good ethical reason to disclose the diagnosis. In the context of lack of widespread accurate information about Klinefelter’s syndrome and to minimize potential psychosocial harm, if the team decides to disclose the finding it should be disclosed by a genetic counselor or other professional who has experience working with patients with Klinefelter’s syndrome. Knowing when to disclose incidental research findings that have only borderline actionability can be difficult. Our approach in this case—and one that we think appropriate for borderline incidental findings more generally—involved examining the relevant literature to identify likely risks and benefits of disclosing the finding and then considering how those might affect the individual in question, given available information about that particular participant. Where validity and volition appear to be present, and the value of disclosing the findings is not overshadowed by likely harms, we tend to favor disclosing even borderline incidental findings. REFERENCES