Responsible, practical genomic data sharing that accelerates research

被引:0
|
作者
James Brian Byrd
Anna C. Greene
Deepashree Venkatesh Prasad
Xiaoqian Jiang
Casey S. Greene
机构
[1] Medical School,Department of Internal Medicine
[2] University of Michigan,School of Biomedical Informatics
[3] Alex’s Lemonade Stand Foundation,Department of Systems Pharmacology and Translational Therapeutics
[4] Childhood Cancer Data Lab,undefined
[5] Alex’s Lemonade Stand Foundation,undefined
[6] The University of Texas Health Science Center at Houston,undefined
[7] Perelman School of Medicine,undefined
[8] University of Pennsylvania,undefined
来源
Nature Reviews Genetics | 2020年 / 21卷
关键词
D O I
暂无
中图分类号
学科分类号
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.
引用
收藏
页码:615 / 629
页数:14
相关论文
共 50 条
  • [21] Responsible data sharing in international health research: a systematic review of principles and norms
    Kalkman, Shona
    Mostert, Menno
    Gerlinger, Christoph
    van Delden, Johannes J. M.
    van Thiel, Ghislaine J. M. W.
    [J]. BMC MEDICAL ETHICS, 2019, 20 (1)
  • [22] Conclusion: harmonisation in genomic and health data sharing for research: an impossible dream?
    Townend, David
    [J]. HUMAN GENETICS, 2018, 137 (08) : 657 - 664
  • [23] De-identified genomic data sharing: the research participant perspective
    Goodman D.
    Johnson C.O.
    Bowen D.
    Smith M.
    Wenzel L.
    Edwards K.
    [J]. Journal of Community Genetics, 2017, 8 (3) : 173 - 181
  • [24] Controlling the signal: Practical privacy protection of genomic data sharing through Beacon services
    Zhiyu Wan
    Yevgeniy Vorobeychik
    Murat Kantarcioglu
    Bradley Malin
    [J]. BMC Medical Genomics, 10
  • [25] Conclusion: harmonisation in genomic and health data sharing for research: an impossible dream?
    David Townend
    [J]. Human Genetics, 2018, 137 : 657 - 664
  • [26] Balancing Confidentiality and Sharing of Genomic and Phenotypic Data in a Clinical Research System
    Veltri, Daniel
    Li, Zhiwen
    Xirasagar, Sandhya
    Oler, Andrew J.
    Cheng, Xi
    Huang, Ke
    Barnett, Jason
    Zhang, Lingwen
    Juarez-Espinosa, Octavio
    Fan, Yongjie
    Similuk, Morgan
    Walkiewicz, Magdalena
    Hong, Celine
    Johnson, Joyce
    Milner, Joshua D.
    [J]. ACM-BCB'18: PROCEEDINGS OF THE 2018 ACM INTERNATIONAL CONFERENCE ON BIOINFORMATICS, COMPUTATIONAL BIOLOGY, AND HEALTH INFORMATICS, 2018, : 533 - 533
  • [27] Responsible data sharing in a big data-driven translational research platform: lessons learned
    S. Kalkman
    M. Mostert
    N. Udo-Beauvisage
    J. J. van Delden
    G. J. van Thiel
    [J]. BMC Medical Informatics and Decision Making, 19
  • [28] Controlling the signal: Practical privacy protection of genomic data sharing through Beacon services
    Wan, Zhiyu
    Vorobeychik, Yevgeniy
    Kantarcioglu, Murat
    Malin, Bradley
    [J]. BMC MEDICAL GENOMICS, 2017, 10
  • [29] Responsible data sharing in a big data-driven translational research platform: lessons learned
    Kalkman, S.
    Mostert, M.
    Udo-Beauvisage, N.
    van Delden, J. J.
    van Thiel, G. J.
    [J]. BMC MEDICAL INFORMATICS AND DECISION MAKING, 2019, 19 (01)
  • [30] Genomic medicine and data sharing
    Raza, Sobia
    Hall, Alison
    [J]. BRITISH MEDICAL BULLETIN, 2017, 123 (01) : 35 - 45