Identifying public expectations of genetic biobanks

Public Understanding of Science
Christine CritchleyRebekah McWhirter

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.

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Citations

Nov 1, 2017·Medicine, Health Care, and Philosophy·Gabrielle Natalie Samuel, Bobbie Farsides
Oct 17, 2018·Public Understanding of Science·Melanie Goisauf, Anna P Durnová
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Aug 18, 2020·BMC Medical Ethics·Lisa DiveWendy Lipworth
Jan 23, 2021·European Journal of Human Genetics : EJHG·Christine R CritchleyIan Kerridge

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