Identifying the nature and extent of public and donor concern about the commercialisation of biobanks for genomic research
Christine R Critchley, Jennifer Fleming, Dianne Nicol, Paula Marlton, Megan Ellis, Lisa Devereux, Gordana Bruce, Ian Kerridge
EUROPEAN JOURNAL OF HUMAN GENETICS | SPRINGERNATURE | Published : 2021
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 str..View full abstract
Awarded by National Health and Medical Research Council of Australia
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.