Name
Regulatory and Ethics Work Stream: Summary of 2019-2020 Outputs
Description
Data sharing bridges the genomic-clinical divide, thereby enabling translational medicine. Current frameworks for research ethics governance, information governance, and data privacy protections, however (and among other things), may frustrate the desire of individuals to share such data, both within and across jurisdictions. The internationally-recognized human right of everyone to benefit from the progress of science and its applications can serve to break open current barriers. The primary role of the Regulatory and Ethics Work Stream (REWS) is to “activate” this human right—to promote forward-looking data governance through the Framework for Responsible Sharing of Genomic and Health Related Data, harmonized across countries, sectors, and institutions. The REWS continues to elaborate on the Framework with policies and tools found in the REWS Toolkit on consent, privacy and security, accountability, and ethics review equivalency. The REWS also plays an important support role within the GA4GH. It regularly assesses the ethical and regulatory implications of GA4GH Work Streams and work products. It liaises with Driver Projects to identify common and emerging issues and to harmonize real-world governance.

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