E-Thesis 823 views 478 downloads
Ethical and Governance Challenges in Population Biobanking: the case of the global Anti-Doping Administration & Management System / RACHEL THOMPSON
Swansea University Author: RACHEL THOMPSON
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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Swansea
2022
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| Institution: | Swansea University |
| Degree level: | Doctoral |
| Degree name: | Ph.D |
| Supervisor: | McNamee, Michael J. |
| URI: | https://cronfa.swan.ac.uk/Record/cronfa61187 |
| 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-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. |
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| Item Description: |
ORCiD identifier: https://orcid.org/0000-0001-6332-545X |
| Keywords: |
biobank, WADA, consent, research ethics, harmonization, bioethics |
| College: |
Faculty of Science and Engineering |