Responsible Data Sharing to Respond to the COVID-19 Pandemic: Ethical and Legal Considerations (v 2.0)
15th May 2020
From the GA4GH COVID-19 webpage:
Responsible Data Sharing to Respond to the COVID-19 Pandemic: Ethical and Legal Considerations
Developed by the GA4GH Regulatory and Ethics Work Stream (REWS), this document highlights key legal and ethical issues that the human genomic research community faces in the context of the pandemic. We deal principally with (1) privacy and data protection; (2) intellectual property; (3) medical devices; (4) data sharing policy; (5) public health ethics; (6) research ethics review; and (7) data access processes. We welcome feedback to improve this document; please email Adrian Thorogood to provide input.
From the document Responsible Data Sharing to Respond to the COVID-19 Pandemic: Ethical and Legal Considerations (v 2.0): The Perspective of the Regulatory and Ethics Work Stream of the Global Alliance for Genomics and Health:
An effective and equitable response to the COVID-19 pandemic requires rapid and sustained international collaboration and data sharing. The Global Alliance for Genomics and Health (GA4GH)’s focus on the creation of technical standards and regulatory/ethics guidance to enable the responsible sharing of human genomic and health-related data means that the GA4GH community is in a unique position to help move forward research into COVID-19. The Regulatory and Ethics Work Stream (REWS) has prepared this overview to assist researchers and others such as REC/IRB members in navigating ethical and legal issues during the COVID-19 public health emergency. This is a living document, and we call on the GA4GH community to provide feedback, and to share their experiences and success stories.
This is a living document and newer versions should be made available at the link below when they become available.