Clinical Ethics, Law and Society (CELS); Wellcome Centre for Human Genetics, University of Oxford, UK; Clinical Ethics, Law and Society (CELS) - Southampton, Faculty of Medicine, University of Southampton, UK.
Clinical Ethics, Law and Society (CELS); Wellcome Centre for Human Genetics, University of Oxford, UK; Clinical Ethics, Law and Society (CELS) - Southampton, Faculty of Medicine, University of Southampton, UK.
Soc Sci Med. 2022 Mar;297:114806. doi: 10.1016/j.socscimed.2022.114806. Epub 2022 Feb 12.
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.
患者的形象如何会对临床实践中的伦理决策产生影响。患者主要被个体化地想象为自主和独立的决策者。基因组医学等领域凸显了这种概念化的不足之处，因为患者可能有家庭成员，他们可能会直接受到他人测试结果的影响。事实上，专业指导越来越认为，在某些情况下，遗传信息应该被视为与家庭有关，而不仅仅是个人。讨论中缺少的是对那些经历基因组测试的人如何表达、构建和代表患者身份的理解，以及这种理解对实践，特别是伦理决策可能意味着什么。本文运用生命历程理论中的“关联生活”概念，呈现了一项基于英国的定性纵向研究的发现，该研究跟踪了受基因组测试过程和结果影响的人的经历。文章认为，在常规生物伦理学中，患者的个体化概念与实际生活体验之间存在不和谐之处，参与者主要将自己的决策定位在他们所嵌入的关联生活矩阵中。在寻求“答案”的过程中，许多人采取了代内或代际的观点，通过围绕可能的解释、对想象中未来几代人健康的希望和期望的家族故事，将自己的经历与过去几代人的经历联系起来。文章认为，随着基因组医学的主流化，重新想象“患者”，反映患者身份的复杂和变化的性质将是必要的。
