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在精准医学中运用种族和族裔时应对正义冲突

Navigating conflicts of justice in the use of race and ethnicity in precision medicine.

作者信息

Schaefer G Owen, Tai E Shyong, Sun Shirley Hsiao-Li

机构信息

National University of Singapore, Yong Loo Lin School of Medicine - Centre for Biomedical Ethics, Singapore.

National University of Singapore, Saw Swee Hock School of Public Health, Singapore.

出版信息

Bioethics. 2020 Oct;34(8):849-856. doi: 10.1111/bioe.12757. Epub 2020 May 19.

DOI:10.1111/bioe.12757
PMID:32426883
Abstract

Given the sordid history of injustices linking genetics to race and ethnicity, considerations of justice are central to ensuring the responsible development of precision medicine programmes around the world. While considerations of justice may be in tension with other areas of concern, such as scientific value or privacy, there are also tensions between different aspects of justice. This paper focuses on three particular aspects of justice relevant to this precision medicine: social justice, distributive justice and human rights. We describe the implications of each for the use of race and ethnicity in precision medicine, and also how they intersect and potentially conflict with each another. By attending to these intersections, we aim to enrich and add nuance to debates over how best to proceed with precision medicine initiatives.

摘要

鉴于将遗传学与种族和民族联系起来的不公正的丑恶历史,公正考量对于确保全球精准医疗项目的负责任发展至关重要。虽然公正考量可能与其他关切领域存在冲突,如科学价值或隐私,但公正的不同方面之间也存在冲突。本文聚焦于与这种精准医疗相关的公正的三个特定方面:社会公正、分配公正和人权。我们描述了每一方面对于在精准医疗中使用种族和民族的影响,以及它们如何相互交叉并可能相互冲突。通过关注这些交叉点,我们旨在丰富关于如何以最佳方式推进精准医疗计划的辩论并增添细微差别。

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A scoping review of guidelines for the use of race, ethnicity, and ancestry reveals widespread consensus but also points of ongoing disagreement.
种族、民族和血统使用指南的范围综述揭示了广泛的共识,但也指出了持续存在的分歧点。
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The promise of public health ethics for precision medicine: the case of newborn preventive genomic sequencing.精准医学公共卫生伦理的承诺:以新生儿预防性基因组测序为例。
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