Faculty of Medicine and Health, Sydney School of Public Health, Sydney Health Ethics, The University of Sydney, Level 1 Medical Foundation Building, 92-94 Parramatta Road, Sydney, NSW, 2006, Australia.
Hum Genet. 2022 May;141(5):1035-1043. doi: 10.1007/s00439-021-02269-0. Epub 2021 Mar 14.
Precision medicine aims to tailor medical treatment to match individual characteristics and to stratify individuals to concentrate benefits and avoid harm. It has recently been joined by precision public health-the application of precision medicine at population scale to decrease morbidity and optimise population health. Newborn preventive genomic sequencing (NPGS) provides a helpful case study to consider how we should approach ethical questions in precision public health. In this paper, I use NPGS as a case in point to argue that both precision medicine and precision public health need public health ethics. I make this argument in two parts. First, I claim that discussions of ethics in precision medicine and NPGS tend to focus on predominantly individualistic concepts from medical ethics such as autonomy and empowerment. This highlights some deficiencies, including overlooking that choice is subject to constraints and that an individual's place in the world might impact their capacity to 'be responsible'. Second, I make the case for using a public health ethics approach when considering ethics and NPGS, and thus precision public health more broadly. I discuss how precision public health needs to be construed as a collective enterprise and not just as an aggregation of individual interests. I also show how analysing collective values and interests through concepts such as solidarity can enrich ethical discussion of NPGS and highlight previously overlooked issues. With this approach, bioethics can contribute to more just and more appropriate applications of precision medicine and precision public health, including NPGS.
精准医学旨在根据个体特征定制医疗方案，并对个体进行分层，以集中获益并避免伤害。最近，精准公共卫生也加入了进来——即在人群层面应用精准医学来降低发病率并优化人群健康。新生儿预防基因组测序（NPGS）为我们提供了一个很好的案例研究，以思考我们应该如何在精准公共卫生中处理伦理问题。在本文中，我以 NPGS 为例，认为精准医学和精准公共卫生都需要公共卫生伦理。我分两部分来论证这一观点。首先，我主张在精准医学和 NPGS 的伦理讨论中，往往倾向于关注来自医学伦理的主要是个人主义的概念，如自主性和赋权。这凸显了一些缺陷，包括忽略了选择受到限制，以及一个人在世界上的位置可能会影响他们“负责任”的能力。其次，我主张在考虑伦理和 NPGS 时，以及更广泛地考虑精准公共卫生时，采用公共卫生伦理方法。我讨论了精准公共卫生如何需要被理解为一个集体事业，而不仅仅是个体利益的集合。我还展示了如何通过团结等概念分析集体价值和利益，可以丰富对 NPGS 的伦理讨论，并突出以前被忽视的问题。通过这种方法，生物伦理学可以为更公正和更适当的应用精准医学和精准公共卫生，包括 NPGS，做出贡献。
