Why (not) participate? An international comparative study of people with MND’s experiences of, and perspectives on, participating in research

This project seeks to better understand the experiences of people with Motor Neurone Disease (MND) who elect to participate in scientific research, as well as to better appreciate why other people do not. In doing to, it will employ approaches from medical sociology and science and technology studies (STS). The project will entail qualitative data-collection (including but not limited to semi-structured interviews) with ~50 people with MND. At least half of the respondents will be in the UK, with further data collection conducted in a relevant international context. This comparative element will enable the study to explore whether perspectives on involvement in research by people with MND are inflected by any national differences in recruitment and scientists’ interactions with participants (which might, for instance, be shaped by varying ethics requirements for biomedical research, and by differing health system-university relationships). The project will aim to generate new knowledge and contribute to furthering debates in sociology and STS regarding the social and ethical aspects of participation in scientific research. In particular, it will consider research as a form of care, and draw on established and emerging debates on care and the affective dimensions of science in order to interpret the data collected. The project will also involve targeted dissemination of the findings to MND researchers, with a view to enhancing the experiences of people with MND who participate in research.