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

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  • Weller, Susie
  • Lyle, Kate
  • Lucassen, Anneke

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.

Suggested Citation

  • Weller, Susie & Lyle, Kate & Lucassen, Anneke, 2022. "Re-imagining ‘the patient’: Linked lives and lessons from genomic medicine," Social Science & Medicine, Elsevier, vol. 297(C).
    • Handle: RePEc:eee:socmed:v:297:y:2022:i:c:s0277953622001125
    DOI: 10.1016/j.socscimed.2022.114806
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    References listed on IDEAS

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    1. Horstman, Klasien & Finkler, Kaja, 2011. "Genetics, health care, family and kinship in a global perspective: Situated processes of co-construction," Social Science & Medicine, Elsevier, vol. 72(11), pages 1739-1742, June.
    2. Duane F. Alwin, 2012. "Integrating Varieties of Life Course Concepts," The Journals of Gerontology: Series B, The Gerontological Society of America, vol. 67(2), pages 206-220.
    3. Finkler, Kaja & Skrzynia, Cécile & Evans, James P., 2003. "The new genetics and its consequences for family, kinship, medicine and medical genetics," Social Science & Medicine, Elsevier, vol. 57(3), pages 403-412, August.
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