Treat donors as partners in biobank research

Saha, Krishanu; Hurlbut, J. Benjamin

doi:10.1038/478312a

Cited by 39 publications

(42 citation statements)

References 5 publications

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“…Rather than targeting a selected group of individuals as representatives of the public (as is often the current governance model), wiki-governance would, like current examples of citizen lawmaking (Box 2), attempt to reach across all segments of society for inclusive engagement and partnership [39] and allow citizens to work alone or in self-identified groups. It would pool diverse knowledge and skills [40] and make public engagement 'an integral part of the overall governance structure of the biobank' [41].…”

Section: How Wiki-governance Would Work: Open But Structuredmentioning

confidence: 99%

Power to the people: a wiki-governance model for biobanks

Joly

Knoppers

2012

Genome Biology

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Section: How Wiki-governance Would Work: Open But Structuredmentioning

confidence: 99%

Power to the people: a wiki-governance model for biobanks

Joly

Knoppers

2012

Genome Biology

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“…As continuous participation is essential for the success of biobank research, biobank governance is often committed to gaining and maintaining trust of the participants and related issues such as privacy and consent. 38, 39, 40, 41 The research interests motive to involve children is clear for biobanks which seek follow-up efforts from children. 19 …”

Section: Discussionmentioning

confidence: 99%

Consent procedures in pediatric biobanks

2014

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The inclusion of children's samples in biobanks brings forward specific ethical issues. Guidelines indicate that children should be involved in the consent procedure. It is, however, unclear how to allocate an appropriate role for children. Knowledge of current practice will be helpful in addressing this issue. Therefore, we conducted an international multiple-case study on the child's role in consent procedures in pediatric biobanks. Four biobanks were included: (1) LifeLines, (2) Prevention and Incidence of Asthma and Mite Allergy (PIAMA), (3) Young-HUNT3 and (4) the Oxford Radcliffe Biobank contribution to the Children's Cancer and Leukaemia Group tissue bank (ORB/CCLG). Four themes linked to the child's role in the consent procedure emerged from the multiple-case study: (1) motives to involve the child, (2) informing the child, (3) the role of dissent, assent and consent and (4) voluntariness of children to participate. We conclude that biobank characteristics influence the biobank's motives to include children in the consent procedure. Moreover, the motives to include children influence how the children are involved in the consent procedure, and the extent to which children are able to make voluntary decisions as part of the consent procedure. This insight is valuable when designing pediatric biobank governance.

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“…Informed by its founders' roots in ALS advocacy, the organization's moral mission is to challenge the ''medical industrial complex'' by empowering patients to amass and deploy their health information according to agendas that the community sets (Heywood 2012). In short, such collections are sites where new normative imaginations of the right configurations of biomedical research are being built into emerging research infrastructures (Saha and Hurlbut 2011).…”

Section: Banking On Progressmentioning

confidence: 99%

Promising waste: biobanking, embryo research, and infrastructures of ethical efficiency

Hurlbut

2015

Monash Bioeth. Rev.

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Biobanks are custodial institutions that enhance the utility and value of biological materials by collecting and curating them. Their custodial functions tend to include ethical oversight and governance. This paper explores how biobanks increase the value of biological materials by standardizing routines of governance in order to engender "ethical efficiency." Focusing in particular upon banking of human embryos for research, the article offers an historical account of how human embryos came to be "waste" available for use by researchers in the US. It offers a case study of a human embryo biobank and the practices of ethical governance that the biobank employs to capture this waste and convert it into a valuable resource for research use. The article draws attention to the ways biobanks' emphasis on efficiency and resolving problems of ethical governance up front codifies otherwise contested normative relationships and authorizes uses of human biological materials that some see as ethically problematic, even as it eliminates institutionalized mechanisms of reflection in which such problems would otherwise be acknowledged and confronted.

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Treat donors as partners in biobank research

Cited by 39 publications

References 5 publications

Power to the people: a wiki-governance model for biobanks

Power to the people: a wiki-governance model for biobanks

Consent procedures in pediatric biobanks

Promising waste: biobanking, embryo research, and infrastructures of ethical efficiency

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