Biosamples as gifts? How participants in biobanking projects talk about donation

Abstract

BACKGROUND: In the UK, altruism has featured explicitly as an underpinning principle for biobanking. However, conceptualizing donation as altruistic downplays the role of reciprocity and personal or family benefit. OBJECTIVE: To investigate how biosample donors talk about their donation and whether they regard samples as 'gifts'. METHODS: In this qualitative study, 21 people, both healthy volunteers and people with health conditions, who had been invited to give biosamples took part in semi-structured narrative interviews. The data were transcribed verbatim and thematically analysed. RESULTS: The term 'gift' was considered appropriate by some, but it also evoked puzzlement, especially in relation to 'waste' material (e.g. urine or tumour samples). Whilst 'giving' or 'donating' were commonly mentioned, the noun 'gift' signified something more special and deliberate. Analysis suggested biosamples could be interpreted as gifts in several different ways, including unreserved gift; reciprocal gift; collective gift; unwanted/low-value gift; and gift as an exaggeration. DISCUSSION AND CONCLUSIONS: Although people describe a network of exchange consistent with anthropological understandings of gift relationships, lay (and biomedical) understandings of the term 'gift' may differ from anthropological definitions. For donors (and researchers), value is attached to the information derived from the sample, rather than the sample itself. Consequently, when asking people for biosamples, we should avoid using the term 'gift'. Acknowledging the value of participation and the information the sample holds may mean more to potential donors.