Consent, ethics and genetic biobanks: the case of the Athlome project

被引:15
作者
Thompson, Rachel [1 ]
McNamee, Michael J. [1 ]
机构
[1] Swansea Univ, Coll Engn, A STEM, Swansea SA1 8EN, W Glam, Wales
关键词
Biobank; Sports genomics; Research ethics; Consent; International governance; Athlome Project Consortium; Data sharing; Regulation;
D O I
10.1186/s12864-017-4189-1
中图分类号
Q81 [生物工程学(生物技术)]; Q93 [微生物学];
学科分类号
071005 ; 0836 ; 090102 ; 100705 ;
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.
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页数:10
相关论文
共 34 条
[1]  
[Anonymous], 2013, DECL HELS ETH PRINC
[2]  
[Anonymous], 2014, FRAM RESP SHAR GEN H
[3]   Human flourishing versus desire satisfaction [J].
Arneson, RJ .
SOCIAL PHILOSOPHY & POLICY, 1999, 16 (01) :113-142
[4]  
Beauchamp TL., 2019, PRINCIPLES BIOMEDICA, V8th
[5]   Informed Consent: Its History, Meaning, and Present Challenges [J].
Beauchamp, Tom L. .
CAMBRIDGE QUARTERLY OF HEALTHCARE ETHICS, 2011, 20 (04) :515-523
[6]  
Benatar S, 2011, GLOBAL HEALTH AND GLOBAL HEALTH ETHICS, P1, DOI 10.1017/CBO9780511984792
[7]   Responsibilities in international research: a new look revisited [J].
Benatar, Solomon R. ;
Singer, Peter A. .
JOURNAL OF MEDICAL ETHICS, 2010, 36 (04) :194-197
[8]   The social licence for research: why care.data ran into trouble [J].
Carter, Pam ;
Laurie, Graeme T. ;
Dixon-Woods, Mary .
JOURNAL OF MEDICAL ETHICS, 2015, 41 (05) :404-409
[9]   A review of the key issues associated with the commercialization of biobanks [J].
Caulfield, Timothy ;
Burningham, Sarah ;
Joly, Yann ;
Master, Zubin ;
Shabani, Mahsa ;
Borry, Pascal ;
Becker, Allan ;
Burgess, Michael ;
Calder, Kathryn ;
Critchley, Christine ;
Edwards, Kelly ;
Fullerton, Stephanie M. ;
Gottweis, Herbert ;
Hyde-Lay, Robyn ;
Illes, Judy ;
Isasi, Rosario ;
Kato, Kazuto ;
Kaye, Jane ;
Knoppers, Bartha ;
Lynch, John ;
McGuire, Amy ;
Meslin, Eric ;
Nicol, Dianne ;
O'Doherty, Kieran ;
Ogbogu, Ubaka ;
Otlowski, Margaret ;
Pullman, Daryl ;
Ries, Nola ;
Scott, Chris ;
Sears, Malcolm ;
Wallace, Helen ;
Zawati, Ma'n H. .
JOURNAL OF LAW AND THE BIOSCIENCES, 2014, 1 (01) :94-110
[10]  
Dawson A, 2011, PUBLIC HEALTH ETHICS AND PRACTICE, P191