Consent, ethics and genetic biobanks: the case of the Athlome project
Abstract 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, sha...
| Main Authors: | , |
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| Format: | Article |
| Language: | English |
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BMC
2017-11-01
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| Series: | BMC Genomics |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s12864-017-4189-1 |
| _version_ | 1818237036461555712 |
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| author | Rachel Thompson Michael J. McNamee |
| author_facet | Rachel Thompson Michael J. McNamee |
| author_sort | Rachel Thompson |
| collection | DOAJ |
| description | Abstract 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. |
| first_indexed | 2024-12-12T12:19:22Z |
| format | Article |
| id | doaj.art-dec01103a6784badb22dba89555c91c3 |
| institution | Directory Open Access Journal |
| issn | 1471-2164 |
| language | English |
| last_indexed | 2024-12-12T12:19:22Z |
| publishDate | 2017-11-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Genomics |
| spelling | doaj.art-dec01103a6784badb22dba89555c91c32022-12-22T00:24:42ZengBMCBMC Genomics1471-21642017-11-0118S8495810.1186/s12864-017-4189-1Consent, ethics and genetic biobanks: the case of the Athlome projectRachel Thompson0Michael J. McNamee1A-STEM, College of Engineering, Swansea UniversityA-STEM, College of Engineering, Swansea UniversityAbstract 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.http://link.springer.com/article/10.1186/s12864-017-4189-1BiobankSports genomicsResearch ethicsConsentInternational governanceAthlome Project Consortium |
| spellingShingle | Rachel Thompson Michael J. McNamee Consent, ethics and genetic biobanks: the case of the Athlome project BMC Genomics Biobank Sports genomics Research ethics Consent International governance Athlome Project Consortium |
| 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 | Biobank Sports genomics Research ethics Consent International governance Athlome Project Consortium |
| url | http://link.springer.com/article/10.1186/s12864-017-4189-1 |
| work_keys_str_mv | AT rachelthompson consentethicsandgeneticbiobanksthecaseoftheathlomeproject AT michaeljmcnamee consentethicsandgeneticbiobanksthecaseoftheathlomeproject |