Tissue donation to biobanks: a review of sociological studies

Abstract

Collections of human tissue (biobanks) are thought to be an essential resource for biomedical research. Biobanks, have however, been a source of debate in both bioethics and sociology. In recent years this theorizing has been supplemented with empirical research, including a significant body of qualitative research, into donors’ experiences and attitudes. To date, this literature has not been synthesised. We report the findings of a review of qualitative literature regarding the ways in which lay people construct and experience the process of donation to biobanks. Our aim was to determine what the qualitative research literature tells us about the process of donating to biobanks, and how this can enrich existing insights from quantitative research and from theoretical sociology and bioethics. Qualitative research shows that donation to biobanks is a complex process shaped by donors’ embeddedness in a number of social contexts; by complex relations of trust in biomedicine; and by the ambiguous status of human tissue. While these findings are theoretically and practically useful, current sociological theorizing is very general. A more detailed and nuanced ‘sociology of biobanking’ is needed, and this might be best achieved by exploring specific theoretical questions in a variety of biobanking settings.veli