National Biobanking in Qatar and Israel: Tracing how Global Scientific Institutions Mediate Local Ethnic Identities

McGonigle, Ian

doi:10.1177/0971721820931995

Cited by 5 publications

(2 citation statements)

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“…. 6 The commercial sector was sometimes just mentioned, with no attempt to define or distinguish between types of commercial access to the biobank resource. Other times, more detail was provided about the commercial organisation, for example, that it was an approved organisation 7 ('the research is carried out in approved research organisations.…”

Section: (Finnish Blood Biobank); the Human Genes Research Act Regula...mentioning

confidence: 99%

“…Biobanks 1 and biomedical research data repositories collect their samples and associated data from volunteer participants to facilitate biomedical research and improve health, and are framed in terms of contributing to the public good [2][3][4][5]. Biobank resources may be accessible to researchers with commercial motivations, for example, to utilise the data for developing new clinical therapeutics and pharmaceutical drugs development [5][6][7][8]. For some, this has resulted in concerns over how the benefits and risks of biobanking are distributed [9] and whether biobanks contribute to the common good and/ or to private interests [4,8,10,11].…”

Section: Introductionmentioning

confidence: 99%

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Exploring how biobanks communicate the possibility of commercial access and its associated benefits and risks in participant documents

et al. 2022

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Background Biobanks and biomedical research data repositories collect their samples and associated data from volunteer participants. Their aims are to facilitate biomedical research and improve health, and they are framed in terms of contributing to the public good. Biobank resources may be accessible to researchers with commercial motivations, for example, researchers in pharmaceutical companies who may utilise the data to develop new clinical therapeutics and pharmaceutical drugs. Studies exploring citizen perceptions of public/private interactions associated with large health data repositories/biobanks indicate that there are sensitivities around public/private and/or non-profit/profit relationships and international sample and data sharing. Less work has explored how biobanks communicate their public/private partnerships to the public or to their potential research participants. Methods We explored how a biobank’s aims, benefits and risks, and private/public relationships have been framed in public facing recruitment documents (consent forms and participant information sheets). Results Biobank documents often communicate their commercial access arrangements but not the detail about what these interactions would entail, and how risks and benefits would be distributed to the public. Conclusion We argue that this leads to a polarised discourse between public and private entities and/or activities, and fails to attend to the blurred lines between them. This results in a lack of attention to more important issues such as how risks and benefits in general are distributed to the public. We call for a nuanced approach that can contribute to the much-needed dialogue in this space.

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Section: (Finnish Blood Biobank); the Human Genes Research Act Regula...mentioning

confidence: 99%