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Table 2 General characteristics of included articles

From: A scoping review of considerations and practices for benefit sharing in biobanking

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