Ga4gh

PANEL: The Role of Scientific Publishing in Supporting D&I Discussions about publishing are nearly ubiquitous in any scientific scholarship journey. This important activity impacts how research is reviewed and valued, and can affect if and how this research is built upon. In this panel, moderated by Laura Paglione, Partner at Spherical Cow Group, featuring Marcus Lambert, Associate Vice President for Research Strategy & Operations and Associate Professor in the School of Public Health at SUNY Downstate Health Sciences University, and Caeul Lim, Scientific Editor/Inclusion & Diversity Officer, Cell Press, we will explore the role of scientific publishing in supporting D&I and its incorporation into research’s collective goals to build knowledge, progress, and societal benefit.

I was a contributor to this work and am recognized as an author on the related publication. The Global Alliance for Genomics and Health (GA4GH) aims to accelerate biomedical advances by enabling the responsible sharing of clinical and genomic data through both harmonized data aggregation and federated approaches. The decreasing cost of genomic sequencing (along with other genome-wide molecular assays) and increasing evidence of its clinical utility will soon drive the generation of sequence data from tens of millions of humans, with increasing levels of diversity.

I was a contributor to this work and am recognized as an author on the related publication. Human biomedical datasets that are critical for research and clinical studies to benefit human health also often contain sensitive or potentially identifying information of individual participants. Thus, care must be taken when they are processed and made available to comply with ethical and regulatory frameworks and informed consent data conditions. To enable and streamline data access for these biomedical datasets, the Global Alliance for Genomics and Health (GA4GH) Data Use and Researcher Identities (DURI) work stream developed and approved the Data Use Ontology (DUO) standard.

The EDI Advisory Group announced the launch of the Onboarding initiative, after a successful pilot program that paired four newcomers with four Work Stream Guides. Next, the team shared results from an EDI survey this year, which revealed that more than 50% of respondents were not as involved in GA4GH as they wanted to be. These individuals felt that a lack of time and support impeded their ability to engage with the community.

During the GA4GH 9th Plenary meeting in September 2021, I discussed the current progress of the GA4GH Equity, Diversity & Inclusion Advisory Group, a group that I co-chair. Through deep exploration using an approach to build an “intentional community”, the volunteer group has embarked on three overarching projects: Onboarding Tactics, Increasing Participation Levels, and Building Equity by Design into our standards. This talk describes the progress to date, and encourages the community to get involved and contribute to EDI efforts to effect change.

Genomics data offers enormous hope of tackling our world’s toughest health challenges. But we can’t successfully carry out our critical work of defining technical and ethical standards for genomics data without first building a diverse “intentional community” committed to inclusivity. At the GA4GH 8th Plenary I was invited to give a keynote talk about this topic. listen time: 30 min. KEYNOTE: GA4GH 8th Plenary Building an Intentional Community for Standards Development

Broad diversity in the community that makes standards and policies ensures that the standards will work for all that we seek to include. Yes, gender and race diversity, but also region, industry, background, viewpoint, and approach. And when we’re talking about standards for genomics data sharing, that diversity is essential for inclusion of information that can benefit the entirety of human-kind. It was so much fun to be interviewed for the the OmicsXchange podcast this month in my role as the chair of the Global Alliance for Genomics and Health Equity, Diversity and Inclusion group.