Responsible, practical genomic data sharing that accelerates research

被引:83
|
作者
Byrd, James Brian [1 ]
Greene, Anna C. [2 ]
Prasad, Deepashree Venkatesh [3 ]
Jiang, Xiaoqian [4 ]
Greene, Casey S. [3 ,5 ]
机构
[1] Univ Michigan, Sch Med, Dept Internal Med, Ann Arbor, MI USA
[2] Alexs Lemonade Stand Fdn, Bala Cynwyd, PA USA
[3] Alexs Lemonade Stand Fdn, Childhood Canc Data Lab, Philadelphia, PA 19004 USA
[4] Univ Texas Hlth Sci Ctr Houston, Sch Biomed Informat, Houston, TX 77030 USA
[5] Univ Penn, Dept Syst Pharmacol & Translat Therapeut, Perelman Sch Med, Philadelphia, PA 19104 USA
基金
美国国家卫生研究院;
关键词
RNA-SEQ; REPRODUCIBILITY; DIVERSITY; GENOTYPES; VARIANTS; RISKS;
D O I
10.1038/s41576-020-0257-5
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
Data sharing anchors reproducible science, but expectations and best practices are often nebulous. Communities of funders, researchers and publishers continue to grapple with what should be required or encouraged. To illuminate the rationales for sharing data, the technical challenges and the social and cultural challenges, we consider the stakeholders in the scientific enterprise. In biomedical research, participants are key among those stakeholders. Ethical sharing requires considering both the value of research efforts and the privacy costs for participants. We discuss current best practices for various types of genomic data, as well as opportunities to promote ethical data sharing that accelerates science by aligning incentives. Data sharing can maximize the benefit and reach of genomics research. However, sharing must occur in a responsible manner, particularly when there are privacy risks to human participants. In this Review, the authors discuss the principles of data sharing, strategies for assessing and mitigating privacy risks, as well as practical guidelines for researchers and wider stakeholders.
引用
收藏
页码:615 / 629
页数:15
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