Re-imagining ‘the patient’:: Linked lives and lessons from genomic medicine
Re-imagining ‘the patient’:: Linked lives and lessons from genomic medicine
How ‘the patient’ is imagined has implications for ethical decision-making in clinical practice. Patients are predominantly conceived in an individualised manner as autonomous and independent decision-makers. Fields such as genomic medicine highlight the inadequacies of this conceptualisation as patients are likely to have family members who may be directly affected by the outcome of tests in others. Indeed, professional guidance has increasingly taken a view that genetic information should, at times, be regarded as of relevance to families, rather than individuals. What remains absent from discussions is an understanding of how those living through/with genomic testing articulate, construct, and represent patienthood, and what such understandings might mean for practice, particularly ethical decision-making.
Employing the notion of ‘linked lives’ from lifecourse theory, this article presents findings from a UK-based qualitative longitudinal study following the experiences of those affected by the process and outcomes of genomic testing. The article argues that there is a discord between lived experiences and individualised notions of ‘the patient’ common in conventional bioethics, with participants predominantly locating their own decision-making within the matrix of linked lives in which they are embedded. In the quest to gain ‘answers’, many took an intra or intergenerational view, connecting their own experiences to those of past generations through familial narratives around probable explanations, and/or hopes and expectations for the health of imagined future generations. The article argues that a re-imagining of ‘the patient’, that reflects the complex and shifting nature of patienthood, will be imperative as genomic medicine is mainstreamed.
Families, Genomic medicine, Lifecourse theory, Linked lives, Patient, Qualitative longitudinal research, Relational, UK
Weller, Susie
6ad1e079-1a7c-41bf-8678-bff11c55142b
Lyle, Kate
ff88e501-884c-423a-8050-f915fc19f0a8
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
March 2022
Weller, Susie
6ad1e079-1a7c-41bf-8678-bff11c55142b
Lyle, Kate
ff88e501-884c-423a-8050-f915fc19f0a8
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Weller, Susie, Lyle, Kate and Lucassen, Anneke
(2022)
Re-imagining ‘the patient’:: Linked lives and lessons from genomic medicine.
Social Science & Medicine, 297, [114806].
(doi:10.1016/j.socscimed.2022.114806).
Abstract
How ‘the patient’ is imagined has implications for ethical decision-making in clinical practice. Patients are predominantly conceived in an individualised manner as autonomous and independent decision-makers. Fields such as genomic medicine highlight the inadequacies of this conceptualisation as patients are likely to have family members who may be directly affected by the outcome of tests in others. Indeed, professional guidance has increasingly taken a view that genetic information should, at times, be regarded as of relevance to families, rather than individuals. What remains absent from discussions is an understanding of how those living through/with genomic testing articulate, construct, and represent patienthood, and what such understandings might mean for practice, particularly ethical decision-making.
Employing the notion of ‘linked lives’ from lifecourse theory, this article presents findings from a UK-based qualitative longitudinal study following the experiences of those affected by the process and outcomes of genomic testing. The article argues that there is a discord between lived experiences and individualised notions of ‘the patient’ common in conventional bioethics, with participants predominantly locating their own decision-making within the matrix of linked lives in which they are embedded. In the quest to gain ‘answers’, many took an intra or intergenerational view, connecting their own experiences to those of past generations through familial narratives around probable explanations, and/or hopes and expectations for the health of imagined future generations. The article argues that a re-imagining of ‘the patient’, that reflects the complex and shifting nature of patienthood, will be imperative as genomic medicine is mainstreamed.
Text
Weller et al. (2022)
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Accepted/In Press date: 10 February 2022
Published date: March 2022
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Funding Information:
This research was funded in whole, or in part, by the Wellcome Trust [Grant number 208053/B/17/Z ]. For the purpose of Open Access, the author has applied a CC BY public copyright licence to any Author Accepted Manuscript version arising from this submission.
Publisher Copyright:
© 2022 The Authors
Keywords:
Families, Genomic medicine, Lifecourse theory, Linked lives, Patient, Qualitative longitudinal research, Relational, UK
Identifiers
Local EPrints ID: 455749
URI: http://eprints.soton.ac.uk/id/eprint/455749
ISSN: 0277-9536
PURE UUID: 604183ab-5f65-40f4-aaf3-3e95be056222
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Date deposited: 31 Mar 2022 17:05
Last modified: 17 Mar 2024 03:38
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Author:
Susie Weller
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