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Identifying public expectations of genetic biobanks


Critchley, C and Nicol, D and McWhirter, R, Identifying public expectations of genetic biobanks, Public Understanding of Science, 26, (6) pp. 671-687. ISSN 0963-6625 (2017) [Refereed Article]

Copyright Statement

The Author(s) 2016

DOI: doi:10.1177/0963662515623925


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.

Item Details

Item Type:Refereed Article
Keywords:biobanking, genomic research, public health, public opinion
Research Division:Law and Legal Studies
Research Group:Law in context
Research Field:Medical and health law
Objective Division:Law, Politics and Community Services
Objective Group:Justice and the law
Objective Field:Law reform
UTAS Author:Nicol, D (Professor Dianne Nicol)
UTAS Author:McWhirter, R (Dr Rebekah McWhirter)
ID Code:110992
Year Published:2017 (online first 2016)
Web of Science® Times Cited:20
Deposited By:Menzies Institute for Medical Research
Deposited On:2016-08-25
Last Modified:2017-12-04

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