基因组数据共享：我们将留下什么遗产？
Genomic data-sharing: what will be our legacy?
机构信息
Department of Clinical Research and Leadership, School of Medicine and Health Sciences, The George Washington University Washington, DC, USA.
School of Public Health and Health Services, The George Washington University Washington, DC, USA.
出版信息
Front Genet. 2014 Mar 5;5:34. doi: 10.3389/fgene.2014.00034. eCollection 2014.
Abstract
Prior to 1974, the Tuskegee Syphilis experiments, expansive use of the HeLa cells, and other blatant instances of research abuse pervaded the medical research field. Ongoing challenges to informed consent, privacy and data-sharing will influence the stories that research participants today share with future generations. This has significant implications for the advancement of genomic science, and the public's perception of genomic research.
摘要
在 1974 年之前，塔斯基吉梅毒实验、HeLa 细胞的广泛使用以及其他明显的研究滥用案例充斥着医学研究领域。知情同意、隐私和数据共享方面的持续挑战将影响研究参与者今天与后代分享的故事。这对基因组科学的发展以及公众对基因组研究的看法都有重大影响。
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