Identifying the nature and extent of public and donor concern about the commercialisation of biobanks for genomic research

Abstract

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.

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Fig. 1: Estimated mean probability of class membership by participant type.

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Acknowledgements

We would like to acknowledge the National Health and Medical Research Council of Australia for funding this research NHMRC Project Grant: APP102929 (CIA Kerridge). We sincerely thank all biobank donors and members of the public for taking the time to share their views with us. Special thanks are also due to members of the CATI team at Swinburne University for conducting the telephone interviews for the national survey, and to Jarrod Walshe for technical assistance. All authors report no conflict of interest with this research. The data that support the findings of this study are available from the corresponding author upon reasonable request.

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Correspondence to Jennifer Fleming.

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Critchley, C.R., Fleming, J., Nicol, D. et al. Identifying the nature and extent of public and donor concern about the commercialisation of biobanks for genomic research. Eur J Hum Genet (2021). https://doi.org/10.1038/s41431-020-00746-0

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