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 |