KAUST-SFDA First Joint International Conference

Trends in Microbiome and Digital One Health

October 30 - November 1, 2023

Global Governance of Benefit Sharing in “One Digital Health” Genomic Studies


Abstract:

Data-driven genomic studies directed at addressing One Health concerns draw on biological materials and related data from human and non-human organisms. Where non-human genetic materials are concerned, the Nagoya Protocol to the Convention on Biological Diversity (CBD) sets out a system of access and benefit sharing (ABS) to support the fair distribution of benefits between the providers of these materials and their users. There is no such system that applies to the provision and use of human genetic materials and related data, although the notion of benefit sharing is discussed in a number of UNESCO documents, and is more generally encapsulated under the right to science (in human rights) and the principle of justice in health-related research guidelines and regulations. Research governance and related mechanisms may include requirements of data localisation, and have helped to safeguard the wellbeing of research participants. However, they have been less effective in ensuring the fair and just sharing of potential benefits of genomic research with underrepresented populations (notably in the lack of diversity in human genomic studies). With focus on the digital aspects of OH genomic studies (or “One Digital Health”), I submit that a global governance framework should be established to enable benefit sharing in furtherance of the global solidarity and justice. While such a framework could be part of the proposed pandemic preparedness treaty, I highlight how the ABS system may be adapted to reflect the Manhattan and Berlin principles of the OH Initiative, as well as the core values of Health for All, and scaled up to encapsulate both human and non-human genetic materials and data. 


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