RESUMO
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.
Assuntos
Neoplasias da Mama/terapia , Ensaios Clínicos como Assunto , Revelação , Relações Médico-Paciente , Adulto , Idoso , Feminino , Humanos , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
Informing research participants of the results of clinical trials in which they were enrolled is in agreement with patients' rights and human dignity; such feedback is considered an ethical standard applied to clinical research. Cancer patients who participate in a clinical trial usually want to know the results. Here we analysed the literature about the different ways of disclosure of clinical trial results to participants, questioning their expectations and the meanings they give to the results. We describe some of the dilemma and intertwining between clinical care and clinical research. We highlight how the standardisation of sharing such results to participants could raise difficulties particularly for the relationship between doctor and patients.