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Identifying public expectations of genetic biobanks

journal contribution
posted on 2023-05-18, 21:49 authored by Critchley, C, Dianne NicolDianne Nicol, Rebekah McWhirterRebekah McWhirter
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.

History

Publication title

Public Understanding of Science

Volume

26

Issue

6

Pagination

671-687

ISSN

0963-6625

Department/School

Faculty of Law

Publisher

Sage Publications Ltd

Place of publication

United Kingdom

Rights statement

© The Author(s) 2016

Repository Status

  • Restricted

Socio-economic Objectives

Technological ethics; Law reform; Expanding knowledge in human society

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