Introducing Variant’s Ethics Advisory Board
Update: After two years of service, Māui Hudson stepped down from his role on Variant Bio’s Ethics Advisory Board and Huti Watson now continues his legacy. For more on this, see here.
“What’s a cultural anthropologist doing working for a genetics company?”
It’s a fair question, and one that I get a lot. It’s not like I have a background in biology or bioinformatics, let alone genetics. What I am accustomed to, though, is navigating different contexts and cultures. And at Variant Bio, with its focus on developing therapeutics based on genetic studies of diverse populations around the world, the need for a culturally aware and attuned approach is paramount.
Part of what it means to understand different contexts and cultures is to pay attention to the power relations that affect people, both historically and currently. Cross-cultural research quickly becomes a question of ethics, especially when it comes to carrying out scientific studies for commercial purposes in areas of the world or among populations that have been — and continue to be — systematically marginalized, underrepresented, and underserved. Up until this point, however, genetic studies have often failed to appropriately engage diverse populations, practicing “helicopter research” or “bioprospecting” throughout Africa,¹,² for example, or misusing genetic samples, as in the case of an Arizona State University researcher working with the Havasupai Tribe.³ Missteps such as these have understandably garnered the distrust of many participating or potentially interested communities.
From its earliest days as a company, Variant has strived to make ethics a foundational pillar of its business model and, in the process, separate itself from genetics’ unfortunate legacy of biocolonialism.⁴ Wherever in the world we work, we are committed to transparent and respectful, informed collaboration — as well as short- and long-term benefit sharing — with partner communities. To this end, we have sought out talented individuals in the fields of Indigenous Studies, Cultural Anthropology, Bioethics, and Human Genetics to help evaluate each one of our partnerships. Together, these experts form an independent Ethics Advisory Board that assesses everything from the study design to the incentive plan underlying our various projects. The questions and challenges they raise not only keep us on our toes intellectually, they ensure we carry out genetic studies around the world according to the highest ethical standards.
A few weeks ago, I had the privilege of convening our inaugural Ethics Advisory Board meeting, which took place online, not only because of the Covid19-induced need for social distancing but because we span several different time zones — the furthest one being in New Zealand. Since this was our first call all together, we kicked off the meeting by asking our Board members — Māui Hudson, Adia Benton, Laura Hercher, and Misha Angrist — to introduce themselves. And here I take the opportunity to introduce them to you.
Variant’s Ethics Advisory Board:
Māui Hudson is a Council member of the Whakatōhea Nation and an interdisciplinary researcher based at the University of Waikato in Hamilton, New Zealand. He holds a Master of Health Science with a focus on Ethics, and specializes in the interface between Māori knowledge and science, ethics and new technologies, and Indigenous data sovereignty. Māui is a member of several ethics and advisory committees besides our own, and is the co-author of Te Ara Tika: Guidelines on Māori Research Ethics, a framework for researchers and ethics committee members addressing Māori ethical issues. He also convenes SING Aotearoa, the New Zealand chapter of the Summer Internship for Indigenous Genomics, which builds community capacity in genomics, bioinformatics, ELSI issues, and cultural protocols.⁵
Adia Benton, PhD, is an Associate Professor of Cultural Anthropology at Northwestern University, with expertise in global health, biomedicine, and development and humanitarianism. Prior to working in academia, Adia worked in the fields of public health and post-conflict development in sub-Saharan Africa and Southeast Asia. She is especially concerned with understanding the political, economic and historical factors shaping how healthcare is provided in the contexts of humanitarian and development projects, and is the author of HIV Exceptionalism: Development through Disease in Sierra Leone (University of Minnesota, 2015).
Laura Hercher is the Director of Research for the Graduate Program in Human Genetics at Sarah Lawrence College — the first program of its kind in the United States and the largest graduate program in genetic counseling in the world. She holds a Master of Science in Genetic Counseling, and has written widely on the ethical, legal, and social dimensions of genetic medicine, including articles in the New York Times, Scientific American, the MIT Technology Review, and many other publications. Laura is host of the podcast, The Beagle has Landed, and co-founder of and regular contributor to The DNA Exchange — a blog for the genetic counseling community — as well as the author of Anybody’s Miracle (Herring River Press, 2013), a novel about the ethics of IVF.
Misha Angrist, PhD, is Associate Professor of the Practice in the Social Science Research Institute at Duke University, where he teaches on topics such as science writing and patient and research participant activism and advocacy. His research focuses on the governance of human participation in research and medicine. In addition to his doctorate in genetics, Misha holds a Master of Science in genetic counseling and a Master of Fine Arts in creative writing. He is the author of Here is a Human Being: At the Dawn of Personal Genomics (Harper, 2010), which recounts his experience as one of the very first people to have their entire genome sequenced while participating in Harvard’s Personal Genome Project.
As these brief bios demonstrate, the members of our Ethics Advisory Board hail from a wide range of professional backgrounds and specialties, each with relevant and exciting perspectives to contribute. In our inaugural meeting, we discussed best practices for how the Board plans to evaluate Variant’s projects, as well as broad questions regarding, for example, how to legally ensure that we carry out our ethical obligations in the long term.
Going forward, Variant will consult with our Ethics Advisory Board for each and every partnership we enter into. We fully expect Māui, Adia, Laura, and Misha to probe us with tough questions, and to push us to think harder about the thorny issues that arise from carrying out genetic research on a global level. And we welcome the challenge.
This is not just an intellectual exercise, however. As much as possible, we aim to incorporate the Board’s recommendations and address their concerns before engaging in any genetic sampling or sequencing. As we see it, not only will this minimize any potential harm to research participants; it will also ensure that we as a company pay real heed — as opposed to mere lip service — to the call for ethically grounded, culturally sensitive genetic research among diverse populations around the world. To a cultural anthropologist like myself, that’s as important a mission as any.
- Nordling, Linda. 2018. “African Scientists Call for More Control of Their Continent’s Genomic Data.” Nature. Retrieved from https://www.nature.com/articles/d41586-018-04685-1.
- Sampath, Padmashree Gehl. 2005. “Regulating Bioprospecting: Institutions for Drug Research, Access, and Benefit-Sharing.” United Nations University Policy Brief. Retrieved from http://archive.unu.edu/publications/briefs/policy-briefs/2005/bioprospecting.pdf.
- Harmon, A. 2010. “Indian Tribe Wins Fight to Limit Research of Its DNA.” The New York Times. Retrieved from http://www.nytimes.com/2010/04/22/us/22dna.html.
- Harry D, Howard S, Shelton BL. 2000. “Indigenous People, Genes and Genetics: What Indigenous People Should Know about Biocolonialism: A Primer and Resource Guide.” Nevada, Indigenous Peoples Council on Biocolonialism. Retrieved from http://www.ipcb.org/publications/primers/index.html.
- “Necessary Voices.” 2020. Nat Genet 52, 135. Retrieved from https://www.nature.com/articles/s41588-020-0585-6.
