Consent to the publication of patient information: Incompetent patients may pose a problem (letter)

Abstract

The BMJ ethics committee’s revised policy on consent to the publication of patient information is laudable, 1 but an important matter remains overlooked: publishing cases involving incompetent patients. Much can be learnt from these cases; be it highlighting clinical difficulties or drawing attention to neglected moral issues. But the guidelines as written may make it impossible to publish them. Imagine I wished to publish a case involving a traceable adult with learning disability who had requested genetic counselling. Turning to the guidelines, I would be required to obtain her consent before publication. However, obtaining written informed consent from adults with questionable competence could be difficult or exploitative, as they may lack the capacity to understand the implications of consent to publication. Furthermore, the exceptions listed under point 3 do not apply. Merely anonymising her information would be ethically problematic, as could drafting a fictional case “inspired” by the clinical encounter. Until the mental capacity bill becomes law, no one can provide consent on her behalf. How should we balance the value gained from publishing these cases with respecting the interests of the people involved?