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Ethical and Governance Challenges in Population Biobanking: the case of the global Anti-Doping Administration & Management System / RACHEL THOMPSON

Swansea University Author: RACHEL THOMPSON

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DOI (Published version): 10.23889/SUthesis.61187

Abstract

This study is an ethical analysis of the governance and regulatory dimensions of biobanking with specific reference to the Anti-Doping Administration Management System (ADAMS) of the global regulator of anti-doping in sports, the World Anti-Doping Agency (WADA). The study focuses on four key ethico-...

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Published: Swansea 2022
Institution: Swansea University
Degree level: Doctoral
Degree name: Ph.D
Supervisor: McNamee, Michael J.
URI: https://cronfa.swan.ac.uk/Record/cronfa61187
first_indexed 2022-09-12T13:32:50Z
last_indexed 2023-01-13T19:21:48Z
id cronfa61187
recordtype RisThesis
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spelling 2022-09-12T14:53:39.0386900 v2 61187 2022-09-12 Ethical and Governance Challenges in Population Biobanking: the case of the global Anti-Doping Administration & Management System 3fcec6835d40c3d02595c130510a408d RACHEL THOMPSON RACHEL THOMPSON true false 2022-09-12 This study is an ethical analysis of the governance and regulatory dimensions of biobanking with specific reference to the Anti-Doping Administration Management System (ADAMS) of the global regulator of anti-doping in sports, the World Anti-Doping Agency (WADA). The study focuses on four key ethico-governance issues: (i) consent; (ii) benefit-sharing; (iii) harmonization of ethics and governance; and (iv) conditions for the secondary research uses of data originally collected for doping control purposes. It is argued that the consent process prior to data collection, storage and analysis is problematic, since athletes may not refuse the request to provide data sought by anti-doping authorities without forfeiting their eligibility to compete. The process requires simultaneous permission for research and testing which creates ambiguity, compounded by the unequal relationship between athletes and WADA. A range of alternative models are explored and a case is made for an approach that combines broad consent with iterative, or ‘reflexive’ governance and stakeholder involvement including education around research. Furthermore, ethical issues remain concerning governance and regulation for population research and use of data more generally between legal jurisdictions and within diverse populations. It is also argued that WADA’s claim to harmonization through its operational methods, regulation and governance, is not sufficiently well-defined outside of specific legal uses and is therefore too blunt a tool for ethical governance in global sport contexts. This thesis proposes reforms to existing WADA processes including consent processes and moves toward more reflexive governance frameworks that allow contextual nuance and iterative development, respecting differing needs within a shared structure. Specific recommendations are made to enhance accountability for potential secondary uses of ADAMS data for research. A distinction is drawn between anti-doping and broader biomedical research in developing ethically justifiable pathways that reduce the potential for coercion and empower athletes as contributors and potential beneficiaries. E-Thesis Swansea biobank, WADA, consent, research ethics, harmonization, bioethics 5 9 2022 2022-09-05 10.23889/SUthesis.61187 ORCiD identifier: https://orcid.org/0000-0001-6332-545X COLLEGE NANME COLLEGE CODE Swansea University McNamee, Michael J. Doctoral Ph.D Research Institute for Ethics and Law (RIEL), Swansea University 2022-09-12T14:53:39.0386900 2022-09-12T14:28:31.0447520 Faculty of Science and Engineering School of Engineering and Applied Sciences - Uncategorised RACHEL THOMPSON 1 61187__25120__3d0680d8990a4c81a61b8de068c3ba69.pdf Thompson_Rachel_C_PhD_Thesis_Final_Redacted_Signature.pdf 2022-09-12T14:47:30.4753152 Output 5874462 application/pdf E-Thesis – open access true Copyright: The author, Rachel C. Thompson, 2022. true eng
title Ethical and Governance Challenges in Population Biobanking: the case of the global Anti-Doping Administration & Management System
spellingShingle Ethical and Governance Challenges in Population Biobanking: the case of the global Anti-Doping Administration & Management System
RACHEL THOMPSON
title_short Ethical and Governance Challenges in Population Biobanking: the case of the global Anti-Doping Administration & Management System
title_full Ethical and Governance Challenges in Population Biobanking: the case of the global Anti-Doping Administration & Management System
title_fullStr Ethical and Governance Challenges in Population Biobanking: the case of the global Anti-Doping Administration & Management System
title_full_unstemmed Ethical and Governance Challenges in Population Biobanking: the case of the global Anti-Doping Administration & Management System
title_sort Ethical and Governance Challenges in Population Biobanking: the case of the global Anti-Doping Administration & Management System
author_id_str_mv 3fcec6835d40c3d02595c130510a408d
author_id_fullname_str_mv 3fcec6835d40c3d02595c130510a408d_***_RACHEL THOMPSON
author RACHEL THOMPSON
author2 RACHEL THOMPSON
format E-Thesis
publishDate 2022
institution Swansea University
doi_str_mv 10.23889/SUthesis.61187
college_str Faculty of Science and Engineering
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hierarchy_top_id facultyofscienceandengineering
hierarchy_top_title Faculty of Science and Engineering
hierarchy_parent_id facultyofscienceandengineering
hierarchy_parent_title Faculty of Science and Engineering
department_str School of Engineering and Applied Sciences - Uncategorised{{{_:::_}}}Faculty of Science and Engineering{{{_:::_}}}School of Engineering and Applied Sciences - Uncategorised
document_store_str 1
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description This study is an ethical analysis of the governance and regulatory dimensions of biobanking with specific reference to the Anti-Doping Administration Management System (ADAMS) of the global regulator of anti-doping in sports, the World Anti-Doping Agency (WADA). The study focuses on four key ethico-governance issues: (i) consent; (ii) benefit-sharing; (iii) harmonization of ethics and governance; and (iv) conditions for the secondary research uses of data originally collected for doping control purposes. It is argued that the consent process prior to data collection, storage and analysis is problematic, since athletes may not refuse the request to provide data sought by anti-doping authorities without forfeiting their eligibility to compete. The process requires simultaneous permission for research and testing which creates ambiguity, compounded by the unequal relationship between athletes and WADA. A range of alternative models are explored and a case is made for an approach that combines broad consent with iterative, or ‘reflexive’ governance and stakeholder involvement including education around research. Furthermore, ethical issues remain concerning governance and regulation for population research and use of data more generally between legal jurisdictions and within diverse populations. It is also argued that WADA’s claim to harmonization through its operational methods, regulation and governance, is not sufficiently well-defined outside of specific legal uses and is therefore too blunt a tool for ethical governance in global sport contexts. This thesis proposes reforms to existing WADA processes including consent processes and moves toward more reflexive governance frameworks that allow contextual nuance and iterative development, respecting differing needs within a shared structure. Specific recommendations are made to enhance accountability for potential secondary uses of ADAMS data for research. A distinction is drawn between anti-doping and broader biomedical research in developing ethically justifiable pathways that reduce the potential for coercion and empower athletes as contributors and potential beneficiaries.
published_date 2022-09-05T07:27:25Z
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score 11.10461

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