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

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...

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Detalles Bibliográficos
Autores principales: Thompson, Rachel, McNamee, Michael J.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5688492/
https://www.ncbi.nlm.nih.gov/pubmed/29143655
http://dx.doi.org/10.1186/s12864-017-4189-1
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author Thompson, Rachel
McNamee, Michael J.
author_facet Thompson, Rachel
McNamee, Michael J.
author_sort Thompson, Rachel
collection PubMed
description 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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spelling pubmed-56884922017-11-22 Consent, ethics and genetic biobanks: the case of the Athlome project Thompson, Rachel McNamee, Michael J. BMC Genomics Review 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. BioMed Central 2017-11-14 /pmc/articles/PMC5688492/ /pubmed/29143655 http://dx.doi.org/10.1186/s12864-017-4189-1 Text en © The Author(s). 2017 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Review
Thompson, Rachel
McNamee, Michael J.
Consent, ethics and genetic biobanks: the case of the Athlome project
title Consent, ethics and genetic biobanks: the case of the Athlome project
title_full Consent, ethics and genetic biobanks: the case of the Athlome project
title_fullStr Consent, ethics and genetic biobanks: the case of the Athlome project
title_full_unstemmed Consent, ethics and genetic biobanks: the case of the Athlome project
title_short Consent, ethics and genetic biobanks: the case of the Athlome project
title_sort consent, ethics and genetic biobanks: the case of the athlome project
topic Review
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5688492/
https://www.ncbi.nlm.nih.gov/pubmed/29143655
http://dx.doi.org/10.1186/s12864-017-4189-1
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