Benefit sharing and biobanking in Australia

Abstract

Biobanks are essential tools for facilitating biomedical research, because they provide collections of human tissue linked with personal information. There is still little understanding of the underlying reasons why people participate in biobanking in the increasingly commercialised and internationalised biomedical research environment. This paper reports the results of an Australia-wide telephone survey. The paper analyses the types of obligations that members of the public may wish to see incorporated in biobank benefit sharing arrangements and the extent to which their views might be influenced by underlying norms of sharing behaviour. Latent class analysis of the dataset reveals three distinct classes of respondents. We link one of these with the norm of reciprocity, one with the norm of social responsibility. The third is not clearly linked with any one norm of sharing behaviour. The implications of these findings on biobank benefit sharing arrangements are discussed.