Spotlight on Variant Bio’s Ethics Advisory Board: An Interview with Misha Angrist
It’s a story I often tell at conferences and in conversations with research partners: Variant Bio formed an Ethics Advisory Board in its early days as a company, even before it formed a Scientific Advisory Board. I tell this story because I think it illustrates just how unique we are within the space of drug discovery and development. From its inception, Variant Bio has been highly intentional about thinking through the ethics of global genomic research and pioneering a unique benefit-sharing program for participating communities around the world. In these intervening years, our Ethics Advisory Board (or EAB for short) — which consists of four members — has proven instrumental in guiding our thinking around everything from data governance and research co-design to the return of study results and making medicines affordable.
In 2020, at the height of the pandemic, Variant Bio published an interview with EAB member Dr. Adia Benton, Associate Professor of Anthropology at Northwestern University, about the social and global context of Covid-19. We also published an interview with EAB member Laura Hercher, Director of Research, Human Genetics at Sarah Lawrence College, about the world of genetic counseling. Later, we published a piece on our newest EAB member, Huti Watson, Chair of the Aotearoa New Zealand Genomic Variome Project, about Indigenous perspectives in genomic research. Here, we give the floor to EAB member Dr. Misha Angrist, Associate Professor of the Practice at the Social Science Research Institute and a Senior Fellow in Science & Society at Duke University, to discuss how he decided to get involved with Variant Bio in the first place and what he sees as the most pressing ethical issues facing the company today.
This interview has been lightly edited and condensed for clarity.
Sarah: To begin with, your work explores the intersection of biology and society, especially as it relates to the governance of human participation in research and medicine. Are there any particular projects that explore this space that you think readers should know about?
Misha: Probably the thing I worry most about is the tension between patients with devastating illnesses like amyotrophic lateral sclerosis (ALS) on the one hand and regulatory agencies on the other. The former want something, anything, that will improve their lives, even a little bit, while the latter are charged with making sure that what makes it onto the market is both safe and effective. And of course we all know that whatever the treatment is, it will be obscenely expensive. It is an extremely difficult problem that I think Gideon Lewis-Kraus captured well in a June 2023 story in The New Yorker.
Sarah: Could you tell us about how you decided to join Variant Bio’s Ethics Advisory Board?
Misha: I’d never encountered any company, let alone a biotech company, that said from the outset that ethics were going to be integral to what they did and that part of that ethos was sharing benefits with the people they studied and the communities they partnered with. Nor had I met any company that had hired even one cultural anthropologist, let alone more than one. I was skeptical but also very curious — I wanted to call Variant Bio’s bluff. And to be clear: Variant compensates me for my time.
Sarah: What are the high-priority topics being discussed during EAB meetings with Variant Bio and what is the most urgent from your perspective?
Misha: I think the biggest challenge — probably logistical more than financial — is instantiating this idea of benefit sharing on the ground. How does the company walk the walk? What counts as a benefit and who decides? What if there are multiple constituencies with different priorities? How do data get shared? Again, these can be extremely difficult problems and there’s a good chance that not everyone will be 100% satisfied with the final outcome. But I applaud Variant Bio for not shrinking from the challenge. And if it works the way it should, it will be indicative of a true partnership rather than the traditional model of Western researchers in white coats collecting consent forms, drawing blood, and then disappearing. Anyone studying human beings has to do better.
Sarah: In the years to come, what do you think will be the most important ethics-related topics for Variant Bio to be aware of and to address in the area of human genomic research/drug discovery?
Misha: “It’s hard to make predictions, especially about the future.” (This saying is often ascribed to Niels Bohr, Mark Twain, or Yogi Berra, but is probably an old Danish proverb — in any case, it’s true!) If I had to make a guess, I’d say that it has to do with the kinds of new therapies that Variant would like to discover: How do we as a society make them accessible to patients? How do their prices get set? And how do we assess efficacy and quality-of-life 10, 20, or 50 years after approval?
