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. 2021 Jul 27;22:102. doi: 10.1186/s12910-021-00671-x

Table 2.

General characteristics of included articles

References Type Geographic setting Relevance to benefit sharing in biobanking
Árnason [24] Report Iceland Highlights the ethical issues around the Icelandic biobank project (deCODE)
Berg [32] Opinion Article Ireland Practical difficulties in implementing benefit sharing
Boggio et al. [45] Book Chapter Geneva Comparative analysis of 27 biobanking policies on various ethical legal and social issues (ELSI)
Capron et al. [29] Peer Reviewed Article—Empirical 27 countries Ethical norms and the international governance of genetic databases and biobanks
Chalmers and Nicol [31] E-book Australia Examines international best practice for the establishment, maintenance and use of human genetic research databases (HGRDs) and considers the measures that should be taken in Australia to comply with this best practice
Chen and Pang [48] Peer Reviewed Article Global Discusses a fair, equitable and feasible biobank governance framework to ensure a fair balance of risks and benefits among all stakeholders
Emerson et al. [49] Article-Debate Not specified Make a case for a tissue trust to respond to claims of exploitation through ‘scientific-imperialism’ and ‘bio-colonialism
Hobbs et al. [28] Journal Article - Empirical Germany and UK Discusses appropriate methods of reciprocity in biobanking
Hugo ethics [38] Opinion Article N/A Statement on benefit sharing by the Human Genome Organizations (HUGO) ethics committee
Joly et al. [47] Peer Reviewed Article N/A Argues that open access can be considered benefit sharing in genomics research
Shickle (2014) Book Section N/A Discusses various ethical legal and social issues (ELSI) in biobanking
Knoppers [39] Peer Reviewed Article Global Discusses benefit sharing from the perspective of the Human Genome Organization’s (HUGO) ethics committee’s ‘Statement on Benefit-Sharing’
Laurie et al. [46] Peer Reviewed Article N/A Attempts to reconcile individual privacy and public interests in genetic research using biobanks as a case
Mahomed et al. [35] Peer Reviewed Article South Africa Examines issues surrounding transfer of human tissues across national boundaries and describes what a South African Institution considered for its material transfer agreements
Moodley et al. [26] Peer Reviewed Article - Empirical South Africa Unearths research participants (of biobanking) concerns with storage of their tissue and use for research
National Bioethics Advisory Commission [23] Report and Recommendations USA Report on research involving human biological materials in the USA. Discusses ethical issues and gives policy guidance
Ndebele and Musesengwa [43] Peer Reviewed Article Developing countries Addresses the issue of fairness in benefits sharing and argues for justice in the sharing of both burdens and benefits of genetics research
Nicol and Critchley [27] Peer Reviewed Article -Empirical Australia Discusses benefit sharing and biobanking in Australia
Pullman and Latus [44] Peer Reviewed Article N/A Suggests some ways in which benefit-sharing might be implemented for genetic add-on studies
Ravinetto and Dierickx [33] Peer Reviewed Article India Reviews relevance and applicability of benefit sharing in the revised “Indian National Ethical Guidelines for Biomedical and Health Research Involving Human Participants”
Schroeder and Gefenas [50] Peer Reviewed Article N/A Examines post study obligations as a mechanism for benefit sharing
Schroeder and Lasen-Diaz [41] Peer Reviewed Article Global Considers whether Convention on Biological Diversity (CBD) should be expanded to include human biological resources
Schroeder and Lucas [37] Book Chapter Global Encourages further empirical research in order to move from theoretical understandings of fair benefit sharing to better practice which benefits real people
Schuklenk and Kleinsmidt [42] Peer Reviewed Article Global Critically analyses benefit sharing looking at some of the practical challenges in sharing benefits such as Intellectual Property (IP) with communities
Sheremeta and Knoppers [40] Peer Reviewed Article Global Discusses population genetics and benefit sharing
Simm [36] Peer Reviewed Article Global Examines and clarifies the notion of benefit-sharing by focusing on its justifications
Vaz et al. [25] Peer Reviewed Article-Empirical India Elicits views of ethics committee members and researchers involved in biobanking
Xiaoyong [30] Book Chapter China Examines benefits sharing under different health research models
Yakubu et al. [34] Peer Reviewed Article South Africa Highlights governance issues in biobanking