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Identifying the nature and extent of public and donor concern about the commercialisation of biobanks for genomic research
journal contributionposted on 2023-05-21, 12:59 authored by Christine Critchley, Fleming, J, Dianne NicolDianne Nicol, Marlton, P, Ellis, M, Devereux, L, Bruce, G, Kerridge, I
Various forms of private investment are considered necessary for the sustainability of biobanks, yet pose significant challenges to public trust. To manage this tension, it is vital to identify the concerns of relevant stakeholders to ensure effective and acceptable policy and practice. This research examines the aspects of commercialisation that are of most concern to the Australian public (n = 800) and patients who had donated their tissue to two large disease specific (cancer) public biobanks (n = 564). Overall, we found a commercialisation effect (higher support for public relative to private) in relation to funding, research location and access to stored biospecimens. The effect was strongest for research locations and access compared to funding. A latent class analysis revealed the pattern of concern differed, with the majority (34.1%) opposing all aspects of commercialisation, a minority supporting all (15.7%), one quarter (26.8%) opposing some (sharing and selling tissue) but not others (research locations and funding), and a group who were unsure about most aspects but opposed selling tissue (23.5%). Patient donors were found to be more accepting of and unsure about most aspects of commercialisation. Members of the (general) public who were motivated to participate in biobanking were more likely to oppose some aspects while supporting others, while those who indicated they would not donate to a biobank were more likely to oppose all aspects of commercialisation. The results suggest that approaches to policy, engagement and awareness raising need to be tailored for different publics and patient groups to increase participation.
Publication titleEuropean Journal of Human Genetics
Department/SchoolFaculty of Law
PublisherNature Publishing Group
Place of publicationMacmillan Building, 4 Crinan St, London, England, N1 9Xw
Rights statement© The Author(s), under exclusive licence to European Society of Human Genetics 2021.