Revisiting Medical Research Participation Through Citizenship
摘要
The concluding chapter returns to the question if there is a moral obligation to participate in medical research to suggest that a discussion in terms of citizenship can show how the tissue and data collections discussed here do not, in fact, produce medical knowledge available to all. The chapter engages with both biology-based and social conceptualizations of citizenship to discuss how in each of the cases particular notions of the biological, of the collectives being formed and of rights and responsibilities being attributed suggest how access to the outcomes of medical research is always circumstantial. This, in turn, raises questions with regard to participation in the governance of research. While the ethical literature positions participant engagement as the preferred response, the analysis in this book would imply that broader democratic processes are necessary for serious engagement with citizens’ concerns around science, health, disease and social rights.