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

BMC Genomics 2017 Nov 14;18(Suppl 8):830. Epub 2017 Nov 14.

A-STEM, College of Engineering, Swansea University, Crymlyn Burrows, Fabian Way, Swansea, SA1 8EN, UK.

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.

Download full-text PDF

Source
http://dx.doi.org/10.1186/s12864-017-4189-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5688492PMC
November 2017
5 Reads

Publication Analysis

Top Keywords

genetic biobanking
12
consent
10
complexities international
8
sports genetic
8
genetic
6
meta consent
4
consent meta
4
broad consent
4
consent broad
4
sports genomics
4
consent dynamic
4
waived consent
4
dynamic consent
4
genomics inherent
4
consent waived
4
consent argue
4
blanket consent
4
biobanking articulate
4
international regulation
4
rights public
4

Altmetric Statistics

References

(Supplied by CrossRef)

J Floridi et al.
2015

T Beauchamp et al.
2013

TL Beauchamp et al.
Camb Q Healthc Ethics 2011

N Manson et al.
2007

HM Evans et al.
1996

Similar Publications