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.