title: Identifying public expectations of genetic biobanks.
abstract: Understanding public priorities for biobanks is vital for maximising utility and efficiency of genetic research and maintaining respect for donors. This research directly assessed the relative importance the public place on different expectations of biobanks. Quantitative and qualitative results from a national sample of 800 Australians revealed that the majority attributed more importance to protecting privacy and ethical conduct than maximising new healthcare benefits, which was in turn viewed as more important than obtaining specific consent, benefit sharing, collaborating and sharing data. A latent class analysis identified two distinct classes displaying different patterns of expectations. One placed higher priority on behaviours that respect the donor ( n = 623), the other on accelerating science ( n = 278). Additional expectations derived from qualitative data included the need for biobanks to be transparent and to prioritise their research focus, educate the public and address commercialisation.
authors.affiliation: Swinburne University of Technology, Australia.|University of Tasmania, Australia.
authors.forename: Christine
authors.initials: C
authors.lastname: Critchley
authors.affiliation: University of Tasmania, Australia.
authors.forename: Dianne
authors.initials: D
authors.lastname: Nicol
authors.affiliation: University of Tasmania, Australia.
authors.forename: Rebekah
authors.initials: R
authors.lastname: McWhirter
mesh_terms: D001315:Australia; D018070:Biological Specimen Banks; D036281:Genetic Research; D011634:Public Health; D011639:Public Opinion
keywords: biobanking; genomic research; public health; public opinion