Biobank networking and globalisation: perspectives and practices of Australian biobanks
Edwina Light
A G , Miriam Wiersma A , Lisa Dive A , Ian Kerridge A , Wendy Lipworth A , Cameron Stewart B , Emma Kowal C , Paula Marlton D E and Christine Critchley F
A University of Sydney, Sydney Health Ethics, Level 1, Medical Foundation Building (K25), University of Sydney, NSW 2006, Australia. Email: miriam.wiersma@sydney.edu.au; lisa.dive@sydney.edu.au; ian.kerridge@sydney.edu.au; wendy.lipworth@sydney.edu.au
B University of Sydney, Faculty of Law, New Law School Building (F10), University of Sydney, NSW 2006, Australia. Email: law.prodean@sydney.edu.au
C Deakin University, Alfred Deakin Institute for Citizenship and Globalisation, School of Humanities and Social Sciences, 221 Burwood Highway, Burwood, Vic. 3125, Australia. Email: emma.kowal@deakin.edu.au
D Princess Alexandra Hospital, Department of Haematology, 199 Ipswich Rd, Woolloongabba, Qld 4102, Australia. Email: Paula.Marlton@health.qld.gov.au
E The University of Queensland Faculty of Medicine, Brisbane, Qld 4006, Australia.
F Deceased. Formerly of Swinburne University of Technology, School of Health Sciences, Faculty of Health, Arts and Design, 427–451 Burwood Road, Hawthorn, Vic. 3122, Australia.
G Corresponding author. Email: edwina.light@sydney.edu.au
Australian Health Review 45(2) 214-222 https://doi.org/10.1071/AH20063
Submitted: 15 April 2020 Accepted: 19 June 2020 Published: 20 November 2020
Abstract
Objective This study examined the practices and attitudes of Australian biobanks regarding access to samples and data, as well as local and global networking with other biobanks.
Methods This was a mixed-methods study, including an online survey of Australian biobank administrators and qualitative interviews with survey participants. The survey examined the criteria applied when considering requests to share or network. The interviews explored attitudes and practices regarding sharing and networking.
Results Most (90.9%; 30/33) biobanks offered access to their samples and data to others, principally for research (90.6%; 29/32). The most common criteria used to evaluate access requests included ethical oversight (84.8%; 28/33), scientific merit (84.8%; 28/33) and intended use (81.8%; 27/33). Just over two-thirds (69.7%; 23/33) of biobanks participated in Australian networks, and 39.1% (9/23) participated in global networks. Networking took the form of both sharing standardised operating procedures and policies (60.9%) and sharing samples and data (43.5%). Thirteen of the 16 interviewees participated in networks. Motivations for sharing included scientific necessity, sharing expertise and standardising operations and governance. Significant barriers to networking remain, including insufficient resources, inconsistent regulations and procedures, and cultural and political issues to do with the conduct of research.
Conclusions Many Australian biobanks are already active participants in various types of global biobanking. If biobanks are to expand and make the most of their involvement in global networks, then important barriers need to be overcome.
What is known about the topic? Biobanks that store human tissue and associated data are increasingly forming local, national and global networks. These networks create opportunities for enhancing the utility and sustainability of biobanks, but also raise considerable technical, legal and ethical challenges.
What does this paper add? This paper reports findings from a mixed-methods study of Australian biobanks and reveals contemporary practices and perspectives concerning sample and data sharing, as well as local and global networking. It found most Australian biobanks currently take part in these activities.
What are the implications for practitioners? Many Australian biobanks are networking in various ways across regional and national borders. A better understanding of current practices and views on significant and emerging issues is relevant to the diverse range of biobank stakeholders involved in any agenda to expand biobank networking, including patients, consumers, clinicians, scientists, policy makers and regulators.
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