What benefit sharing arrangements do people want from biobanks? A survey of public opinion in Australia

• Main Authors: Nicol, Dianne, Critchley, Christine
• Other Authors: Swinburne University of Technology
• Format: Book Part
• Language: unknown
• Published: Ashgate Publishing 2009
• Subjects: Chalmers; Laurie; Newfoundland
• Online Access: http://hdl.handle.net/1959.3/81774; http://www.ashgate.com/isbn/9780754678250

Public trust is a fundamental cornerstone in biomedical science in general and biobanking in particular (Campbell 2007). Essentially, in the biobanking context, members of the public who participate are being asked to put their trust in biobank operators and researchers to manage and keep secure their information and tissue, and to use them in ways that maximize any anticipated social and/or personal benefits. Clearly then, public trust and public participation go hand in hand. Members of the public are only likely to be willing to provide their tissue and information to biobanks if they have trust in the operators and users of biobanks and in the governance structures that regulate them (Kaye and Martin 2000, Chalmers and Nicol 2004). A number of studies have attempted to measure the level of public trust in science in general, and in biomedical science in particular. Although a UK Parliamentary inquiry reported that there was a 'crisis in trust' in science (UK Parliament 2000, Stranger, Chalmers and Nicol 2005), other evidence suggests that trust in publicly funded biomedical research remains high (admittedly, though, there seem to be much lower levels of public trust in agricultural biotechnology. See, for example, Farquharson and Critchley 2004, Cormick 2007). Despite these positive views with regard to publicly funded biomedical research, the evidence also suggests that the level of trust decreases significantly when there is commercial involvement (Critchley 2008). This chapter reports on a survey of public opinion relating to biobanking in Australia. The survey focused on the importance of the various 'benefits' that might emerge from biobanking and the ways in which the public thought they should be shared. Although there is an expanding international literature on benefit sharing in the context of biobanking (for example, Newfoundland and Labrador Department of Health and Community Services 2003, Irish Council on Bioethics 2005, Knoppers and Sheremata 2003, Laurie and Hunter 2004, Webster et al. 2008), scant attention has been paid to this issue to date in the Australian context.