Thursday, January 13, 2022

Calvin Ho on A Call to Engage: Consensus Building from the Bottom Up (Voices of GA4GH members: Collaborating in Technology and Policy Development)

in Voices of GA4GH members: Collaborating in technology and policy development
Background: The Global Alliance for Genomics and Health (GA4GH) is organized around eight Work Streams, where members develop technology standards and policy frameworks to enable the responsible sharing of human genomic and health-related data. These are implemented across 24 Driver Projects, reflecting real-world genomics initiatives. In this Voices, Cell Genomics asked GA4GH members to reflect on their engagement with GA4GH and how this has driven progress in open science and genomic medicine.
Volume 1, Issue 2
Published in 10 Nov 2021
Voice of Calvin Ho
   In 2020, the Hong Kong Genome Institute (HKGI) was established by the territory’s government to implement the Hong Kong Genome Project (HKGP), an initiative to promote the development of genomic medicine and population health in Hong Kong. In setting up HGKI operational procedures, key issues included feedback of whole-genome sequencing results to participants, right of participants to withdraw, data security and privacy protection, data access mechanisms, and use of data. For this, we consulted the GA4GH Regulatory & Ethics Toolkit, which has been an important ready-to-use reference for internationally accepted standards on responsible sharing of genomic and health-related data. For instance, discussions and recommendations on setting up infrastructure to support the flow of data from clinical practice into research and establishing data access and accountability mechanisms that are appropriate to research settings are implicit in the considerations of the expert committee and likely to be evident in the policies and practices of the HKGI. Some of my colleagues and I have the double privilege of contributing to the work of GA4GH and the HKGI and have thereby been able to facilitate the cross-pollination of values, concepts, and practices. As an intrinsically open and collaborative enterprise, GA4GH provides the forum, mechanisms, and resources for all interested stakeholders to be involved and in a manner that is non-directive. The consolidation of international policies and standards of the GA4GH in this issue of Cell Genomics is a further step in this direction and is, in my view, exemplary of consensus building from the bottom up.

No comments:

Post a Comment