Adams Samantha A, Petersen Carolyn
Tilburg Institute of Law, Technology and Society (TILT), Tilburg University, PO Box 90153, 5000 LE Tilburg, The Netherlands
Global Business Solutions - BB 7, Mayo Clinic, 200 First St. SW, Rochester, MN 55905, USA.
J Am Med Inform Assoc. 2016 Jul;23(4):787-90. doi: 10.1093/jamia/ocv215. Epub 2016 Mar 14.
Precision medicine approaches disease treatment and prevention by taking patients' individual variability in genes, environment, and lifestyle into account. Although the ideas underlying precision medicine are not new, opportunities for its more widespread use in practice have been enhanced by the development of large-scale databases, new methods for categorizing and representing patients, and computational tools for analyzing large datasets. New research methods may create uncertainty for both healthcare professionals and patients. In such situations, frameworks that address ethical, legal, and social challenges can be instrumental for facilitating trust between patients and providers, but must protect patients while not stifling progress or overburdening healthcare professionals. In this perspective, we outline several ethical, legal, and social issues related to the Precision Medicine Initiative's proposed changes to current institutions, values, and frameworks. This piece is not an exhaustive overview, but is intended to highlight areas meriting further study and action, so that precision medicine's goal of facilitating systematic learning and research at the point of care does not overshadow healthcare's goal of providing care to patients.
精准医学通过考虑患者在基因、环境和生活方式方面的个体差异来进行疾病的治疗和预防。尽管精准医学背后的理念并不新颖，但大规模数据库的发展、对患者进行分类和表征的新方法以及用于分析大型数据集的计算工具，都增加了其在实践中更广泛应用的机会。新的研究方法可能会给医疗保健专业人员和患者都带来不确定性。在这种情况下，应对伦理、法律和社会挑战的框架有助于促进患者与医疗服务提供者之间的信任，但必须在保护患者的同时，不阻碍进步或给医疗保健专业人员造成过重负担。从这个角度出发，我们概述了与精准医学计划对当前机构、价值观和框架提出的变革相关的若干伦理、法律和社会问题。本文并非详尽无遗的概述，而是旨在突出值得进一步研究和采取行动的领域，以便精准医学在医疗点促进系统学习和研究的目标，不会掩盖医疗保健为患者提供护理的目标。
