"They should take time": Disclosure of clinical trial results as part of a social relationship

Disclosing overall scientific results to clinical trial participants has become an ethical obligation. Here we studied how participants understand these results in view of their experience of clinical trials and illness in general and what modes of disclosure they preferred. Interviews were conducted with 29 breast cancer patients in France during 2009, using an in-depth qualitative approach. The findings obtained show that the “results” of research are understood quite differently by various patients depending on their expectations about clinical trials. Most of the women interviewed expected to receive personally tailored results at an individual encounter with their own clinical oncologist. Their preferred mode of disclosure was a consultation with their doctors because personal encounters promote mutual recognition and set up a symbolic process of exchange. The results of this study show that medical interventions should not be regarded solely from the technical point of view, but also in terms of the social relationships involved.

► This study shows that the “results” of research mean different things to different people.
► Participants' “misunderstandings” may simply be alternative interpretations, which are worth re-examining more closely.
► Patients mostly expressed the wish to be given the results of clinical trials and discuss them at consultations.
► This mode of disclosure was preferred because it promotes mutual recognition and sets up a symbolic process of exchange.
► Patients are resisting the trend to depersonalise clinical encounters and reduce them to impersonal technical interviews.