Ethical considerations in research with genomic data
Ethical considerations in research with genomic data
Our ability to generate genomic data is currently well ahead of our ability to understand what they mean, raising challenges about how best to engage with them. This article considers ethical aspects of work with such data, focussing on research contexts that are intertwined with clinical care. We discuss the identifying nature of genomic data, the medical information intrinsic within them, and their linking of people within a biological family. We go on to consider what this means for consent, the importance of thoughtful sharing of genomic data, the challenge of constructing meaningful findings, and the legacy of unequal representation in genomic datasets. We argue that the ongoing success of genomic data research relies on public trust in the enterprise: to justify this trust, we need to ensure robust stewarding, and wide engagement about the ethical issues inherent in such practices.
Genomics, bioethics, data, diversity, ethics
1-15
Horton, Rachel
f79e8b73-2edc-47aa-b29a-1801ad10fe6b
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
28 April 2022
Horton, Rachel
f79e8b73-2edc-47aa-b29a-1801ad10fe6b
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Horton, Rachel and Lucassen, Anneke
(2022)
Ethical considerations in research with genomic data.
The New bioethics : a multidisciplinary journal of biotechnology and the body, .
(doi:10.1080/20502877.2022.2060590).
Abstract
Our ability to generate genomic data is currently well ahead of our ability to understand what they mean, raising challenges about how best to engage with them. This article considers ethical aspects of work with such data, focussing on research contexts that are intertwined with clinical care. We discuss the identifying nature of genomic data, the medical information intrinsic within them, and their linking of people within a biological family. We go on to consider what this means for consent, the importance of thoughtful sharing of genomic data, the challenge of constructing meaningful findings, and the legacy of unequal representation in genomic datasets. We argue that the ongoing success of genomic data research relies on public trust in the enterprise: to justify this trust, we need to ensure robust stewarding, and wide engagement about the ethical issues inherent in such practices.
Text
20502877.2022
- Version of Record
More information
Accepted/In Press date: 2022
e-pub ahead of print date: 28 April 2022
Published date: 28 April 2022
Additional Information:
Publisher Copyright:
© 2022 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
Keywords:
Genomics, bioethics, data, diversity, ethics
Identifiers
Local EPrints ID: 468035
URI: http://eprints.soton.ac.uk/id/eprint/468035
ISSN: 2050-2877
PURE UUID: fb016a62-1678-4316-9cf1-0767211fafd5
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Date deposited: 28 Jul 2022 16:45
Last modified: 17 Mar 2024 02:54
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