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改善公共卫生的基因组学:全基因组关联研究和生物样本库相关的国际伦理与政策问题

Genomics for public health improvement: relevant international ethical and policy issues around genome-wide association studies and biobanks.

作者信息

Pang T

机构信息

Lee Kuan Yew School of Public Policy, National University of Singapore, Singapore.

出版信息

Public Health Genomics. 2013;16(1-2):69-72. doi: 10.1159/000341500. Epub 2013 Mar 18.

Abstract

Genome-wide association studies and biobanks are at the forefront of genomics research and possess unprecedented potential to improve public health. However, for public health genomics to ultimately fulfill its potential, technological and scientific advances alone are insufficient. Scientists, ethicists, policy makers, and regulators must work closely together with research participants and communities in order to craft an equitable and just ethical framework, and a sustainable environment for effective policies. Such a framework should be a 'hybrid' form which balances equity and solidarity with entrepreneurship and scientific advances. A good balance between research and policy on one hand, and privacy, protection and trust on the other is the key for public health improvement based on advances in genomics science.

摘要

全基因组关联研究和生物样本库处于基因组学研究的前沿,具有改善公众健康的前所未有的潜力。然而,要使公共卫生基因组学最终发挥其潜力,仅靠技术和科学进步是不够的。科学家、伦理学家、政策制定者和监管者必须与研究参与者和社区密切合作,以制定一个公平公正的伦理框架,以及一个有利于有效政策实施的可持续环境。这样一个框架应该是一种“混合”形式,平衡公平与团结以及创业精神和科学进步。一方面在研究与政策之间取得良好平衡,另一方面在隐私、保护和信任之间取得良好平衡,这是基于基因组学科学进展改善公众健康的关键。

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