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在全球范围内对人类进行抽样:ELSI 问题。

Sampling populations of humans across the world: ELSI issues.

机构信息

Centre of Genomics and Policy, McGill University and Genome Quebec Innovation Centre, Montreal, Quebec H3A 1A4, Canada.

出版信息

Annu Rev Genomics Hum Genet. 2012;13:395-413. doi: 10.1146/annurev-genom-090711-163834. Epub 2012 Mar 8.

DOI:10.1146/annurev-genom-090711-163834
PMID:22404491
Abstract

There are an increasing number of population studies collecting data and samples to illuminate gene-environment contributions to disease risk and health. The rising affordability of innovative technologies capable of generating large amounts of data helps achieve statistical power and has paved the way for new international research collaborations. Most data and sample collections can be grouped into longitudinal, disease-specific, or residual tissue biobanks, with accompanying ethical, legal, and social issues (ELSI). Issues pertaining to consent, confidentiality, and oversight cannot be examined using a one-size-fits-all approach-the particularities of each biobank must be taken into account. It remains to be seen whether current governance approaches will be adequate to handle the impact of next-generation sequencing technologies on communication with participants in population biobanking studies.

摘要

越来越多的人群研究正在收集数据和样本,以阐明基因-环境对疾病风险和健康的贡献。能够生成大量数据的创新技术的成本不断降低,有助于实现统计学效力,并为新的国际研究合作铺平了道路。大多数数据和样本收集可以分为纵向、特定疾病或剩余组织生物库,并伴随着伦理、法律和社会问题(ELSI)。与同意、保密和监督有关的问题不能采用一刀切的方法来审查,必须考虑每个生物库的特殊性。目前的治理方法是否足以应对下一代测序技术对人群生物库研究参与者的沟通产生的影响,还有待观察。

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