On Friday, Staff Writer Manny Gonzalez attended the monthly ELSI Friday Forum seminar, featuring a discussion about the value, importance, upsides, and downsides of advocacy and allyship in ELSI.
At the ELSI Friday Forum seminar, on the second Friday of every month, ELSIhub invites ELSI professionals to speak on many different topics under the ELSI umbrella. But, what exactly is ELSI (especially since I’m going to use this acronym millions of times)? It stands for ethical, legal, and social implications; however, in regard to this organization, it refers to the ethical, legal, and social implications of genetics and genomics research.
This month’s seminar featured three guests: Dr. Shoumita Dasgupta, a full-time educator at the Boston University School of Medicine; Dr. Kyle Brothers, a pediatrician and bioethicist at the University of Louisville; and moderator Dr. Robert Cook-Deegan, a professor at Arizona State University’s School for the Future of Innovation in Society and the Consortium for Science, Policy, and Outcomes. These three came together to discuss what exactly advocacy and allyship look like in ELSI research.
Cook-Deegan began the discussion by introducing Dasgupta and promptly placing attention on her; she began by focusing on privilege, spheres of influence, and the future of ELSI education. At first, she described a term known as genetic essentialism: the belief that genetics tells us everything we need to know about someone. Quickly denouncing the idea, Dasgupta reinforced that this belief ignores many things, including the effect of the environment on genes, systemic inequities, and barriers that interfere with certain populations. Genetics was built on bias, she reminded us, and has contributed to many modern-day disparities. While it is now known that people of certain identities are not more valuable than those with other identities, with the destruction of the eugenics pseudoscience, Dasgupta reminds us that people must be vigilant to ensure we do not repeat our mistakes from the past.
As an educator, Dasgupta then turned toward how this ideal could be mirrored in academia, structuring genetics in a way to understand inheritance beyond a strictly biological way. This desire is not only a dream, however, as Dasgupta informed us that the American Association of Medical Colleges is starting to incorporate learning goals in this area to foster culturally responsive and inclusive patient care. And no, this isn’t about being political or “woke,” she assures; this is about the future patients and research subjects of learners—those in medical school or doctorate programs. Without this knowledge, Dasgupta fears bias mirroring that of the past is likely.
Dasgupta understands this isn’t some lofty goal, though; she knows she must play a role in its enactment. With this, she posed the question, “In what spheres do I have privilege?” As an answer, she explained that, as an educator, and at one point the president of The Association of Professors of Human and Medical Genetics, she had the great privilege of affecting many of those around her; her effect, of course, was positive. Specifically, she created three statements that have guided education in regard to ELSI: those three were one on George Floyd’s murder, the overturning of Roe v. Wade, and one on general LGBTQ+ equity. Understanding your spheres of influence and the ways in which you can leverage such spheres to create open dialogues and promote change is crucial. Everyone works in different spaces, but this is our lane, Dasgupta assured. She then ended with a question: “How are we going to use that lane?”
The discussion then shifted to Brothers who focused less on education and more on professional organization policy documents. “How mighty is the pen?” he asked. Brothers specified that professional organization policy documents have three qualities: magnitude of authority, focus on internal vs. external audience, and document type. He then delved into two different types of documents, describing each in terms of the qualities previously mentioned. First, position statements. These documents don’t include specific actions but rather the position of a relevant organization in regard to a certain topic; basically, it’s the information and opinion that follows “experts say…” As it is an expert opinion, these documents hold great authority and are typically targeted toward an external audience for use in popular media. Second, guidance documents. These documents influence perspectives on best practices and are typically used for teaching. While their influence is more gradual than that of position statements, they still shape practice over time via the learners—those in medical school or doctorate programs. Possessing a similar authority to position statements, guidance documents are geared toward more internal audiences.
Despite the two different document types, Brothers underscored that both share similar limitations—mainly, professional organizations struggle with addressing controversial topics. So, what ends up happening is a “too little, too late” scenario; an organization may end up releasing a statement or document, but it will be at a time when no one cares anymore. However, Brothers chalked this up to difficulty with internal controversy, not external. Brothers cited the example of child vaccination, which is a wildly controversial topic externally, but internally has consensus that vaccines are, of course, beneficial. In this case, a professional organization would have no problem releasing a statement on the benefit of vaccines to the public. It is when scientists and professionals within an organization argue that a statement is delayed and, thus, untimely.
Aptly connecting the idea back to ELSIhub, Brothers highlighted it is an organization that creates both such documents. And it is these documents that, in turn, support, scientifically and socially, advocacy and allyship in ELSI. The overarching thought was that ELSI, a diverse and intersectional field, has connections to many different topics, whether that be genetics, policy-making, or social justice. And with such connections and clear evidence-based community research, ELSIhub can contribute greatly to the cause of ELSI in genetic and genomic research.
Finally, the discussion returned to Cook-Deegan who promptly brought the discussion to a close after a few clarifying questions by the audience. ELSIhub, via Cook-Deegan, then invited the audience back for their next Friday Forum seminar. Taking place on Friday, November 11, the seminar is titled “Genetics and AI: Group Privacy and Fairness.”
Event poster via ELSIhub