Lay and Professional Understandings of Research and Clinical Activities in Cancer Genetics and Their Implications for Informed Consent

Abstract

Research and clinical activities are often portrayed as arising from different motivations and having different goals. This study sought to determine lay and professional understandings of research and clinical care within the translational subspecialty of cancer genetics. Fifty-nine lay research participants and 20 professional stakeholders were interviewed. Research and clinical care were described in similar ways by both groups of interviewees, who distinguished these activities according to their temporal orientation and focus. Stakeholders’ accounts tended to focus upon the epistemological motivations underlying research activities, whereas research participants emphasized concrete goals, for example, finding a cure for cancer. We discuss the implications of these findings for informed consent. We argue that informed consent for research and clinical interventions should be redefined so that establishing potential research participants’/patients’ understanding of the purpose of an intervention, why it is taking place, should be seen as secondary to confirming their understanding of its nature, namely, what will happen and the associated risks.