Ethical Provenance Toolkit

Tools to promote consistency and harmonisation throughout the stages of the biomedical data life cycle — ensuring clear oversight despite differences between institutions

Developed by the GA4GH Regulatory & Ethics Work Stream (REWS), the Ethical Provenance Toolkit aims to provide harmonised tools across research institutions and enable the clear oversight of biomedical data throughout their life cycle. This will promote the development of new tools that encourage consistent practices supporting genomic research.

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Benefits

  • Aims to create tools and policies to harmonise elements of the research life cycle
  • Aims to promote transparency across data use within this life cycle to ensure accountability

Target users

Research institutes

Community resources

Dive deeper into this product! The Ethical Provenance Toolkit aims to create a useful ethical provenance framework, promoting distinct yet streamlined policies and practices regarding data use whilst also enabling cost-effective scalability of data-enabled biomedical research. The term “ethical provenance” can be understood as the practice of developing a record of the ethical, legal, and institutional rules applicable to data use for specified data sets, including the permissions for data use and data sharing, over time. The term encapsulates both individual tools that can aid this process, as well as the overall process of observing the data’s journey in accordance with the overarching data life cycle process, transparently. Ethical provenance would provide harmonised tools across research institutions and enable the clear oversight of biomedical data, throughout their lifetime.


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Ethical Provenance Toolkit subgroup meeting

Working meeting to discuss the progress of developing ethical provenance resources and to identify where further efforts are needed

ad hoc
ad hoc
UTC
1 Hour

Don't see your name? Get in touch:

  • Gemma Brown
    Wellcome Sanger Institute (WSI)
  • Vasiliki Rahimzadeh
    Baylor College of Medicine
  • Maili Raven-Adams
    The Nuffield Council on Bioethics