Volunteers in biomedical research: social science perspectives. (360G-Wellcome-079439_Z_06_Z)

Volunteers in Biomedical Research: Social Science Perspectives The aim of this meeting is to bring together academics who are specifically interested in exploring what it means to be a volunteer from the volunteers' perspective. While many of the researchers in the field are London-based, there has been little opportunity for all to meet in a single forum. The workshop will develop ideas and collaborative links for future work, build capacity in the UK social science community, and explore how this area of research can engage with current debates in science policy and research governance. Although UK government policy now puts a strong emphasis on public participation in research governance, there remains little discussion on the participatory role of volunteer human subjects. There are questions too about how adequately current codes of medical ethics function in practice and how they can accommodate the idea of more actively participative volunteers. The proposed workshop and its outputs could contribute to moving forward these issues. Topics to be addressed will include: the researcher-subject relationship; volunteers' understandings of research design and the implications for informed consent; volunteer motivation to participate; historical perspectives on volunteers' self-understanding; the significance of discourse around the 'volunteer', 'participant' or 'subject'; the possibilities for volunteers to influence the design and development of research. The meeting fits specifically with the objective of the Wellcome Biomedical Ethics programme to "build and enhance national capacity in the field". Some of the invited participants are working specifically within the programme's focus, looking at volunteering in relation to genetics (especially genetic databases) and neuroscience (especially brain imaging); others are working on the role of volunteers in a diverse range of the biomedical sciences. This meeting is specifically concerned with qualitative studies of volunteers' own experiences and understandings, and to this extent we are not aware of any recent meetings on this emerging field of science.