We will selectively include calls for public consultation from multilateral agencies, governments, INGOs and other sources where there is a clear intersection with consent/assent. This might be obvious from the title of the draft guidance, regulations, etc., but more often, it will be a thematic area or topic – if properly addressed at all. If you would like to explore participation with our working group developing submissions for these calls, please contact us [david.r.curry@ge2p2global.org].
Invitation for Public Comment: WHO principles for human genome access, use and sharing
8 April 2024 Consultation Period: 8th April 2024 – 3 May 2024
Background
For the potential of genomics to be realized, access to, use, and the sharing of human genome data is critical. Following the WHO’s Science Council 2022 Report on Accelerating access to genomics for global health: promotion, implementation, collaboration, and ethical, legal, and social issues, WHO is implementing a programme of activities to promote equitable and fair access to genomics technologies for the benefit of people worldwide. As part of this, WHO is developing guiding principles for human genome data access, use and sharing. To develop these principles, a virtual consultation was held in January 2024 with an interdisciplinary group of participants. This consultation discussed the diverse perspectives on issues related to human genome data access, use and sharing; how a global set of principles from WHO may enable data access, use and sharing; and proposed initial principles. This was followed by an in-person meeting in March 2024 that considered in detail the proposed principles. Following this meeting, a draft document was developed and comments on this document and the principles are now invited.
Feedback on the WHO Principles for human genome data access, use, and sharing
Public feedback on this document is being solicited through this public consultation using the comment form.
Center for Informed Consent Integrity 