Re-imagining ‘the patient’: Linked lives and lessons from genomic medicine

Susie Weller, Kate Lyle and Anneke Lucassen

Social Science & Medicine, 2022, vol. 297, issue C

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.

Keywords: Patient; Genomic medicine; Families; Lifecourse theory; Linked lives; Qualitative longitudinal research; Relational; UK (search for similar items in EconPapers)
Date: 2022
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DOI: 10.1016/j.socscimed.2022.114806

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