Earlier this year, Gallaudet University established a Gene Editing Think Tank, building on years of sustained conversation, panel discussions, and community engagement around genetics, ethics, and Deaf identity. The Think Tank reflects the university’s commitment to proactive, interdisciplinary leadership as scientific developments in this area accelerate. The below is a statement issued by the Think Tank.
Yesterday, the U.S. Food and Drug Administration approved Otarmeni, the first gene therapy approved for deafness caused by variants in the OTOF gene. This treatment, developed by Regeneron Pharmaceuticals, works by delivering a functional copy of the OTOF gene into the inner ear. It targets a rare and specific cause of deafness affecting roughly 50 newborns per year in the United States. Regeneron plans to offer it at no cost in the U.S. Clinical trial investigators reported meaningful changes in the hearing of a majority of participants.
We knew this moment was coming. That does not make it easier.
Gallaudet University affirms, without reservation, that Deaf, DeafBlind, and hard of hearing people bring irreplaceable value to the world. Sign languages are not workarounds. Deaf communities are not problems waiting to be solved. The history of efforts to eliminate human difference in the name of progress is long, and it is not a history we should repeat. As gene therapies move from research into routine clinical practice, Gallaudet is committed to ensuring that Deaf perspectives are central to every conversation about ethics, identity, and what it means to be human.
We also recognize that our community holds a range of views on this news. Some Deaf individuals and families may see this therapy as a meaningful option. Others will feel concern, or grief, or resistance at what it represents. All of those responses are legitimate. What Gallaudet will always insist upon is that decisions be made freely, with full information, and without coercion. The value of Deaf life is not conditional on whether a technology exists to change it.
Our Gene Editing Think Tank, drawing on expertise in genetics, bioethics, sociology, and the history of eugenics, will guide our community through these questions with care and intellectual rigor. The Think Tank includes:
- Dr. Teresa Blankmeyer Burke, Professor of Philosophy
- Dr. Derek Braun, ’95, Professor of Biology
- Dr. Jeremy L. Brunson, Executive Director, Belonging and Engagement
- Ryan Commerson, ’01 & G-’08, Cultural Theorist
- Dr. Brian Greenwald, ’96, Professor of History
- Dr. Poorna Kushalnagar, ’93, Strategic Research Officer
- Kim Bianco Majeri, Government Affairs Manager
- Brandi Rarus, Chief Enrollment and Communications Officer
- Dr. Khadijat Rashid, ’90, Provost
Over the past two years, Gallaudet has hosted three internal sessions to discuss gene editing. We will continue to invite the entire Gallaudet community to engage with us as this conversation unfolds.
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