Trust, distrust and co-production : the relationship between research, biobanks and donors

Abstract

This chapter addresses one so-called ethical aspect of biobanking, namely the relationship between biobanks for research and donors of human biological samples and personal health information. Central to bioethical theory and practice is the institution of informed consent and its potential to create trust. We present results from an observational study of the consent process during the recruitment to a local population DNA bank in Southern France as well as subsequent interviews with donors. Three types of donors were identified: (1) Persons holding a “natural trust” and who were quite uninterested in the information and consent procedure; (2) persons who expressed distrust, but nevertheless participated as donors; and (3) persons who appreciated the consent procedure as a sign of a well-organised institution. While informed consent may appear partly irrelevant to the issue of trust for a large group of donors, we proceed to discuss the status and desirability of a strong focus on donors' trust in biobank experts. Indeed, more symmetry and distrust may be a creative potential in the co-production of science and society in the biobank era.