Policy Briefs

An Integrated Global Bio-data Governance Framework Enhancing Human Rights and Prosperity

Task Force: Science and Digitalization for a Better Future
Authors: Suzanne M. Sincavage, Krishna Ravi Srinivas, Joy Y. Zhang, Mei Lin Fung, Trevor W. Muehlfelder, Marta Bertolaso
Pubblication Date: May 2024

Abstract

The rapid advancements in biotechnology and the increasing generation, collection, and use of biological data (biodata) have revolutionized scientific research and healthcare. However, the current landscape of biodata governance is fragmented, with varying regulations and norms across jurisdictions, hindering international collaboration and raising concerns about data ownership, access, benefit-sharing, privacy and potential misuse.
This policy brief urges the G7 nations to lead this effort through convening an international summit, establishing a multi-stakeholder working group and integrating biodata governance. Specific recommendations include:

1) Fund social research to address imbalances in biodata communication.
2) Proactively align industry and commercial stakeholder incentives in biodata governance nationally and transnationally.
3) Encourage Track II science diplomacy through convening international summits and working groups.
4) Enable FAIRify data at scale though pilot interdisciplinary capacity building for practitioners. Urgent action and international cooperation are imperative to uphold human rights, facilitate responsible innovation transnationally, promote public trust and health equities, and contribute to the UN Sustainable Development Goals.