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Authority and the Future of Consent in Population-Level Biomedical Research / Mark Sheehan; Rachel Thompson; Jon Fistein; Jim Davies; Michael Dunn; Michael Parker; Julian Savulescu; Kerrie Woods

Public Health Ethics, Volume: 12, Issue: 3, Pages: 225 - 236

Swansea University Author: Rachel, Thompson

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DOI (Published version): 10.1093/phe/phz015

Abstract

Population-level biomedical research has become crucial to the health system’s ability to improve the health ofthe population. This form of research raises a number of well-documented ethical concerns, perhaps the mostsignificant of which is the inability of the researcher to obtain fully informed s...

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Published in: Public Health Ethics
ISSN: 1754-9973 1754-9981
Published: Oxford University Press (OUP) 2019
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URI: https://cronfa.swan.ac.uk/Record/cronfa56091
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first_indexed 2021-01-21T15:29:22Z
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spelling 2021-02-19T09:01:13.7893570 v2 56091 2021-01-21 Authority and the Future of Consent in Population-Level Biomedical Research 5d2bdee781fad5d610c2d0d19a724c40 0000-0001-6332-545X Rachel Thompson Rachel Thompson true false 2021-01-21 PMSC Population-level biomedical research has become crucial to the health system’s ability to improve the health ofthe population. This form of research raises a number of well-documented ethical concerns, perhaps the mostsignificant of which is the inability of the researcher to obtain fully informed specific consent from participants.Two proposed technical solutions to this problem of consent in large-scale biomedical research that havebecome increasingly popular are meta-consent and dynamic consent. We critically examine the ethical andpractical credentials of these proposals and find them lacking. We suggest that the consent problem is notsolved by adopting a technology driven approach grounded in a notion of ‘specific’ consent but by takingseriously the role of research governance in combination with broader conceptions of consent. In our view, theseapproaches misconstrue the rightful location of authority in the way in which population-level biomedicalresearch activities are structured and organized. We conclude by showing how and why the authority fordetermining the nature and shape of choice making about participation ought not to lie with individual participants, but rather with the researchers and the research governance process, and that this necessarily leads tothe endorsement of a fully articulated broad consent approach. Journal Article Public Health Ethics 12 3 225 236 Oxford University Press (OUP) 1754-9973 1754-9981 30 11 2019 2019-11-30 10.1093/phe/phz015 COLLEGE NANME Medicine COLLEGE CODE PMSC Swansea University Oxford University 2021-02-19T09:01:13.7893570 2021-01-21T15:19:58.5944348 College of Engineering Sports Science Mark Sheehan 1 Rachel Thompson 0000-0001-6332-545X 2 Jon Fistein 3 Jim Davies 4 Michael Dunn 5 Michael Parker 6 Julian Savulescu 7 Kerrie Woods 8 56091__19147__3fbed5473e1b40e9be60f960c3568bec.pdf 56091.VOR.pdf 2021-01-21T15:27:43.8030109 Output 691821 application/pdf Version of Record true Copyright: The Author(s) 2019. This is an Open Access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited. true eng
title Authority and the Future of Consent in Population-Level Biomedical Research
spellingShingle Authority and the Future of Consent in Population-Level Biomedical Research
Rachel, Thompson
title_short Authority and the Future of Consent in Population-Level Biomedical Research
title_full Authority and the Future of Consent in Population-Level Biomedical Research
title_fullStr Authority and the Future of Consent in Population-Level Biomedical Research
title_full_unstemmed Authority and the Future of Consent in Population-Level Biomedical Research
title_sort Authority and the Future of Consent in Population-Level Biomedical Research
author_id_str_mv 5d2bdee781fad5d610c2d0d19a724c40
author_id_fullname_str_mv 5d2bdee781fad5d610c2d0d19a724c40_***_Rachel, Thompson
author Rachel, Thompson
author2 Mark Sheehan
Rachel Thompson
Jon Fistein
Jim Davies
Michael Dunn
Michael Parker
Julian Savulescu
Kerrie Woods
format Journal article
container_title Public Health Ethics
container_volume 12
container_issue 3
container_start_page 225
publishDate 2019
institution Swansea University
issn 1754-9973
1754-9981
doi_str_mv 10.1093/phe/phz015
publisher Oxford University Press (OUP)
college_str College of Engineering
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hierarchy_top_id collegeofengineering
hierarchy_top_title College of Engineering
hierarchy_parent_id collegeofengineering
hierarchy_parent_title College of Engineering
department_str Sports Science{{{_:::_}}}College of Engineering{{{_:::_}}}Sports Science
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description Population-level biomedical research has become crucial to the health system’s ability to improve the health ofthe population. This form of research raises a number of well-documented ethical concerns, perhaps the mostsignificant of which is the inability of the researcher to obtain fully informed specific consent from participants.Two proposed technical solutions to this problem of consent in large-scale biomedical research that havebecome increasingly popular are meta-consent and dynamic consent. We critically examine the ethical andpractical credentials of these proposals and find them lacking. We suggest that the consent problem is notsolved by adopting a technology driven approach grounded in a notion of ‘specific’ consent but by takingseriously the role of research governance in combination with broader conceptions of consent. In our view, theseapproaches misconstrue the rightful location of authority in the way in which population-level biomedicalresearch activities are structured and organized. We conclude by showing how and why the authority fordetermining the nature and shape of choice making about participation ought not to lie with individual participants, but rather with the researchers and the research governance process, and that this necessarily leads tothe endorsement of a fully articulated broad consent approach.
published_date 2019-11-30T04:22:22Z
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