Becoming partners, retaining autonomy: ethical considerations on the development of precision medicine
Becoming partners, retaining autonomy: ethical considerations on the development of precision medicine
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DOI：
10.1186/s12910-016-0149-6
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发表时间：
2016-11-04
影响因子：
2.7
通讯作者：
Vayena, Effy
中科院分区：
文献类型：
--
作者：
Blasimme, Alessandro;Vayena, Effy
精准医学有望开发出考虑个体差异的诊断和治疗方法。大多数专家认为，要将这一承诺变为现实，就需要调整已建立的临床研究伦理框架，更多地关注参与者对共享基因型、表型、生活方式数据和健康记录的态度，并最终关注他们作为积极合作伙伴参与医学研究的愿望。在关于遗传学和大规模生物库的生物伦理学辩论中引入了参与、接触和伙伴关系等概念，以扩大讨论的重点，使之超越个人选择和个人的道德利益。这些概念在精准医学中的应用值得欢迎。然而，由于精准医疗队列研究参与者的数据和医疗信息将在个人基础上收集，在这一新兴领域采用参与式方法可能会很麻烦。因此，借鉴约瑟夫·拉兹的完美主义，我们提出了一个尊重自主代理人的原则，我们认为，这可以解决许多问题，推动最近的奖学金伙伴关系和公众参与，同时避免这些概念在精准医学的背景下的一些限制。我们的方法提供了一个规范性的澄清，如何成为精确的合作伙伴与保持自主性是相容的。我们表明，将自主性的价值与直接参与的理想重新调整，可以为精确医学提供足够的规范方向;它可以通过强调道德自决的价值来公正地对待道德多元化的想法：最后，它可以调和自治的概念与其他更社群主义的价值观，如参与和团结。
Precision medicine promises to develop diagnoses and treatments that take individual variability into account. According to most specialists, turning this promise into reality will require adapting the established framework of clinical research ethics, and paying more attention to participants' attitudes towards sharing genotypic, phenotypic, lifestyle data and health records, and ultimately to their desire to be engaged as active partners in medical research. Notions such as participation, engagement and partnership have been introduced in bioethics debates concerning genetics and large-scale biobanking to broaden the focus of discussion beyond individual choice and individuals' moral interests. The uptake of those concepts in precision medicine is to be welcomed. However, as data and medical information from research participants in precision medicine cohorts will be collected on an individual basis, translating a participatory approach in this emerging area may prove cumbersome. Therefore, drawing on Joseph Raz's perfectionism, we propose a principle of respect for autonomous agents that, we reckon, can address many of the concerns driving recent scholarship on partnership and public participation, while avoiding some of the limitations these concept have in the context of precision medicine. Our approach offers a normative clarification to how becoming partners in precision is compatible with retaining autonomy.Realigning the value of autonomy with ideals of direct engagement, we show, can provide adequate normative orientation to precision medicine; it can do justice to the idea of moral pluralism by stressing the value of moral self-determination: and, finally, it can reconcile the notion of autonomy with other more communitarian values such as participation and solidarity.