Consent, ethics and genetic biobanks: the case of the Athlome project
被引:0
作者:
Rachel Thompson
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机构:A-STEM,
Rachel Thompson
Michael J. McNamee
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h-index: 0
机构:A-STEM,
Michael J. McNamee
机构:
[1] A-STEM,
[2] College of Engineering,undefined
[3] Swansea University,undefined
来源:
BMC Genomics
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18卷
关键词:
Biobank;
Sports genomics;
Research ethics;
Consent;
International governance;
Athlome Project Consortium;
Data sharing;
Regulation;
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摘要:
This article provides a critical overview of the ethics and governance of genetic biobank research, using the Athlome Consortium as a large scale instance of collaborative sports genetic biobanking. We present a traditional model of written informed consent for the acquisition, storage, sharing and analysis of genetic data and articulate the challenges to it from new research practices such as genetic biobanking. We then articulate six possible alternative consent models: verbal consent, blanket consent, broad consent, meta consent, dynamic consent and waived consent. We argue that these models or conceptions of consent must be articulated in the context of the complexities of international legislation and non legislative national and international biobank governance frameworks and policies, those which govern research in the field of sports genetics. We discuss the tensions between individual rights and public benefits of genomic research as a critical ethical issue, particularly where benefits are less obvious, as in sports genomics. The inherent complexities of international regulation and biobanking governance are challenging in a relatively young field. We argue that there is much nuanced ethical work still to be done with regard to governance of sports genetic biobanking and the issues contained therein.
机构:
Univ Leeds, Bradford Royal Infirm, Bradford Inst Hlth Res, Acad Unit Elderly Care & Rehabil, Bradford, W Yorkshire, EnglandUniv Leeds, Bradford Royal Infirm, Bradford Inst Hlth Res, Acad Unit Elderly Care & Rehabil, Bradford, W Yorkshire, England
Holt, Rachel
Siddiqi, Najma
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机构:
Univ Leeds, Acad Unit Psychiat & Behav Sci, Leeds LS2 9JT, W Yorkshire, EnglandUniv Leeds, Bradford Royal Infirm, Bradford Inst Hlth Res, Acad Unit Elderly Care & Rehabil, Bradford, W Yorkshire, England