OmicsXchange episode 9: the importance of diverse perspectives in standards development — an interview with Laura Paglione

27 Aug 2020

On episode 9 of the OmicsXchange podcast, we speak with Laura Paglione — Co-Lead of the GA4GH Equity, Diversity, and Inclusion (EDI) Advisory Group — on amplifying underrepresented voices within the genomics and health data community.

Angela Page: Welcome to the OmicsXchange, I’m Angela Page. Today I’m speaking with Laura Paglione, a partner at Spherical Cow Group, which provides identity management and consulting services for higher education, research, virtual organizations, and enterprise. Laura first got involved with GA4GH as the founding technical director of ORCID, which provides unique identifiers for individuals in research scholarship and innovation. A long time member of the Data Use and Researcher Identities Work Stream, Laura now also co-leads the GA4GH Equity, Diversity, and Inclusion (EDI) Advisory Group helping to amplify underrepresented voices in the Genomics and Health Data Community. Welcome Laura.

Laura Paglione: Thanks, Angela. I’m really excited to be here.

Angela Page: So tell me a little bit about your new role within the EDI and what you’ve been working on.

Laura Paglione: The purpose of the group is to support GA4GH in its mission to create truly global standards for genomic and health data sharing. So this means finding equitable and inclusive ways to bring diverse ideas to our standards creation processes. And that includes identifying opportunities to attract diverse talent to the GA4GH standards community, it includes helping new and existing contributors from all sorts of backgrounds to feel welcome in the community and have opportunities to contribute to the work. And finally, it includes ensuring that the outwardly facing opportunities like leadership and speaking opportunities also reflect the breadth of that diversity that we’ve built in the community.

Angela Page: This discussion around diversity and inclusion, and encouraging a truly global community, is critical when we’re talking about genomic and health data.

Laura Paglione: I think I think the case for diversity in genomics data has gotten a lot of attention lately. The COVID-19 pandemic has increased the attention to the consequences of long standing gaps in population understanding, inclusion and research, and access to targeted care. Without the policies that address diversity in genomic and health data collection use, we face risks in the data not informing the scientific research that may lead to the population-relevant screening guidelines, diagnostics, and treatments. Or the data may be used by and primarily benefit outside parties over the societal benefits as a whole. Without policies that address diversity in genomics in health data collection and use, we may inadvertently slow down adoption of advancing health care approaches that can improve patient care pathways. Very often we talk about diversity, it’s easier to talk about diversity in terms of numbers. You know, like how many people of color do we have? How many women do we have? How many from Africa do we have? It’s so easy, you can quantify that really simply. But it’s kind of beside the point. If you have a diverse community that’s actually contributing their own viewpoints and everyone is listening to them, the result is going to be better. It’s going to ensure that you have better innovation, that you have better problem solving because you’re’ considering a broader set of considerations in what you’re thinking about. It can lead to more ethical management. So there’s so much gained by having a diverse group that’s working together in order to solve something, especially something so important as how we use people’s health data in order to address global concerns in how people stay healthy. I don’t see that there’s any other way to do the work.

Angela Page: So just to clarify, diversity within genomic data itself is not the primary focus of the EDI. The EDI is focusing on incorporating diverse perspectives in the development of standards for genomic data—why is this an important distinction?

Laura Paglione: Well, I think it’s almost impossible to enable diversity in genomics and health and data if the community of individuals that are writing the standards to enable that data exchange, or defining criteria for access or ethical use of the data are not in themselves also diverse. In June 2020, the World Economic Forum released a white paper outlining a genomics data policy framework and highlighting ethical tensions in doing the work. And in their framing, they mentioned that their paper is written with a focus on low and middle income countries in emerging economies. And they point out that they’re doing so not to imply that there should be a different standard among countries. But rather, they want to ensure that the consideration of the differing perspectives and needs informed by these countries diverse, historical, societal, and cultural contexts are included. And they also, in writing the paper, aim to keep the interest of research participants and patients at the forefront of the policy and ethical considerations. And they do that because they argue that their inclusion in the discussion and development and approaches to the genomic data collection and use would likely prevent numerous blind spots as well as conflicts and sources of mistrust, while also fostering understanding and better outcomes. And the underlying goals of the EDI advisory group come from a similar idea. If our community is not diverse, we face the very real possibility that our work will miss the mark of accelerating progress in genomics research and human health, because our standards won’t work in all situations, and our harmonized approaches won’t work for all that we seek to include.

Angela Page: That’s a great explanation. So, how is the EDI group framing its approaches to advance its goals?

Laura Paglione: So several years ago, I heard a talk by Charles Vogel who put into words many things that I’ve been noticing about the communities that I was a part of. And he makes a distinction between group and community. While a group may share ideas, interests, proximity and so on, a community is a group of individuals that share a mutual concern for each other’s welfare. And this concern manifests itself in a shared set of values—a sense of shared identity with the task at hand. The GA4GH community is already a strong one, and it’s united by a powerful common goal. And when I was invited to chair the EDI group, I understood that the goal was not to change the community. Instead, it was the question of how to leverage the strengths of our community to ensure that it also represents the diversity that’s so important to the goals that we talked about earlier. The idea of an intentional community is to explicitly state who you want to be a part of it—rather than letting that happen organically. And then the principles are put into place to help strengthen the structures that support that intentional community, from how people are welcomed to be a part of it, to how we reinforce our values and responsibilities to each other, to how we enable individuals to deepen their commitment to the community.

Angela Page: How is the EDI group leveraging this idea of an intentional community to amplify underrepresented voices?

Laura Paglione: Well, we’re just getting started. But it is exciting to see and hear the thoughtfulness among the group that’s that is having the discussion so far. We’ve been talking about the community that participates in ga4gh activities today, and what voices might be absent right now that might enhance the work that we’re doing. We’ve been considering what the explicit and implicit community values and components of personal identity with the community and how those might affect those that are not yet participating. What I find encouraging is how many people in the group have remarked that just asking these questions have prompted a level of reflection that both brings us together in our EDI work and also reinforces our commitment to developing an inclusive community for GA4GH. From now through the plenary in September, we’re going to be inviting more of the community to reflect on those similar questions. And we’re hoping that others have a similar reaction. But to answer your question, the real work of amplifying underrepresented voices is still to come, as we discuss how to increase the number of underrepresented members in the community by identifying who’s missing and explicitly inviting them to participate, considering how we might increase their sense of inclusion in the community through intentional community characteristics of how we express belonging, reinforce inclusion, and value contributions, and considering how we might clarify how individuals that reflect that intentional community might increase their engagement through leadership and speaking opportunities.

Angela Page: To our listeners who are reflecting on this conversation right now, we want to encourage you to share your diverse perspective with the EDI group and with the GA4GH Work Streams as a whole.

Laura Paglione: I’m hoping the listeners already feel that there’s a space for their ideas and perspectives within the GA4GH Work Streams, where a majority of the work is done. But if they don’t feel that there’s a place for them, I sincerely hope they’ll be willing to join the EDI group to help us understand how the community might make room for their perspectives. I mean, we all have blind spots, and I definitely value those who illuminate what I don’t know, and in my short time with the EDI group, I’ve sensed that I’m not alone in this respect. So I’m hoping that the listeners will consider adding their perspectives, insights, and talents to GA4GH work.

Angela Page: And if anyone listening wants to get involved with the GA4GH EDI advisory group, you can reach out to us at info [at] www.ga4gh.org. This has been a really great conversation, and I’m so happy we got to speak with you today.

Laura Paglione: Thank you so much!

Thank you for listening to the OmicsXchange—a podcast of the Global Alliance for Genomics and Health. The OmicsXchange podcast is produced by Stephanie Li and Caity Forgey, with music created by Rishi Nag. GA4GH is the international standards org for genomics, aimed at accelerating human health through data sharing. I’m Angela Page and this is the OmicsXchange.