Learn about initiatives from the GA4GH EDI Advisory Group and the Regulatory & Ethics Work Stream (REWS) Diversity Subgroup
The Global Alliance for Genomics and Health (GA4GH) can only achieve its vision — a truly global organisation, creating common standards used around the world — by investing in equity, diversity, and inclusion.
“Founded on the human right to benefit from science, GA4GH has an imperative to produce globally impactful standards. That effort starts with our contributors. We believe that when we see equity, diversity, and inclusion reflected in our teams, we are more likely to see those principles reflected in our standards.”
Peter Goodhand, GA4GH Chief Executive Officer
The benefits of diversity, equity, and inclusion are clear, as are the drawbacks of homogeneity. For example, a lack of diverse data slows down life-saving improvements to health care. Striving to share scientific benefits equitably in a range of places produces more flexible standards, which are easier to adopt. Including neglected voices has attracted funding to problems that would otherwise go unnoticed or unresolved.
Yet people of Asian, African, Latino, Middle Eastern, Oceanic, and other Indigenous or non-European ancestries appear in a small percentage of genomic studies — despite making up most of the global population. Women and people from many marginalised groups are underrepresented among scientists and engineers. Individuals from countries of low- and middle-incomes, or where the primary language is not English, hold comparatively few positions in genomic initiatives.
GA4GH recognises that systemic barriers prevent these and other groups from participating fully in the genomics community. Towards eliminating barriers:
We welcome feedback on our practices and encourage partners and organisational members to incorporate equity, diversity, and inclusion in their work.
Following a framework that we call “reflected in our teams, reflected in our standards,”, the GA4GH Equity, Diversity, and Inclusion (EDI) Advisory Group and Regulatory and Ethics Work Stream (REWS) Diversity Subgroup address EDI at different points in the standards development process. This framework is based on the idea that if EDI concepts are incorporated successfully into our teams, then the interests of the broader community are more likely to be reflected in the standards development process and in the standards themselves.
The EDI Advisory Group was launched in May 2020 with the goal of recognizing and responding to EDI issues raised within the GA4GH community. This group supports GA4GH by finding equitable and inclusive ways to bring diverse ideas into the standards creation process. Pathways to EDI that the group explores include:
EDI ADVISORY GROUP LEADS: Laura Paglione (Spherical Cow Group), Melissa Konopko (ELIXIR)
Lead: Ashley Hobb
To ensure that new community members can engage and participate fully, the GA4GH EDI Advisory Group launched an onboarding program to help newcomers gain the knowledge they need to start participating fully in GA4GH Work Streams. To participate in the newcomer program, email firstname.lastname@example.org.
Lead: Neerjah Skantharajah
This Best Practices document is being developed by the GA4GH EDI Advisory Group, in collaboration with contributors from all GA4GH Work Streams. The document aims to provide Work Stream contributors with suggestions for creating an inclusive working environment that facilitates diverse participation.
More information coming soon
The REWS Diversity Subgroup formed within GA4GH to focus on integrating EDI considerations early and often throughout the product development and product approval process.
SUBGROUP GROUP LEADS: Mavis Machirori (Ada Lovelace Institute), Michael Beauvais (McGill University)
Lead: Group Effort
The first output from REWS Diversity is the living Definition of EDI for REWS Diversity which was developed in collaboration with the EDI Advisory group. The definition is based on the understanding that EDI are three interrelated concepts that begin with the absence of exclusion and are founded upon an ethos of intention and advocacy. The definition can be found here.
Lead: Group Effort
Currently, REWS Diversity is working on a future consultation with various GA4GH stakeholders to develop EDI-focused product guidelines that teams can reference throughout product development. The consultation will occur in three phases: Phase 1 involves interviewing GA4GH Driver Projects—the genomic data initiatives that guide the development of GA4GH policies and standards. Phase 2 includes interviewing groups who are implementing GA4GH policies and standards. Finally, the Work Streams will be interviewed in Phase 3 and will be iterated alongside developments in Phase 2.
Explore the following resources to learn more about EDI efforts at GA4GH.