When Brian Greenwald was just over a year old, his parents learned he was deaf and took him to a doctor. “Don’t sign with him,” a doctor told them, warning that using sign language could create irreversible brain damage.
That was in the mid-1970s, and that guidance has since been proved wrong. But “that fear of difference, that searching for a cure, that persists to today,” Greenwald, now a professor of history at Gallaudet University, said recently using an interpreter.
In the last few years, researchers and pharmaceutical companies have made rapid advancements in gene editing and therapies that they say can “treat” inherited deafness by restoring hearing.
At a time when videos of deaf children hearing for the first time go viral, the recent advancements in gene therapy have been celebrated. But for many deaf people, those developments are not good news. They say it could pose a threat to the future of a rich and diverse deaf culture.
Gallaudet University, a world-renowned school for deaf and hard-of-hearing students, announced Tuesday its position on the growing practice of gene editing.
“Gallaudet University believes that Deaf people are an essential part of human diversity and bring unique value to society,” the statement reads. “Our signed languages, cultures, knowledge, and ways of seeing the world benefit everyone. Deaf lives are not deficits to be corrected.”
The statement acknowledges that these technologies may bring important medical benefits but says that advances in gene editing also raise questions about who gets to make decisions about the future of deaf people. It calls for such decisions to be “shaped and led by Deaf people.”
“History is filled with examples of societies trying to erase languages, cultures, and knowledge they did not value,” it says. “A humane future comes not from narrowing human diversity, but from learning to understand and live with one another.”
In April, the U.S. Food and Drug Administration approved Otarmeni, the first gene therapy approved for deafness caused by variants in the OTOF gene, in the inner ear. Regeneron Pharmaceuticals, the company that developed the therapy, plans to offer it at no cost to treat a rare cause of deafness affecting roughly 50 newborns per year in the country.
George D. Yancopoulos, Regeneron’s president and chief scientific officer, said at the time that the therapy “has already proven to be life-changing” for children and families, and that the work “strengthened our belief that the biopharmaceutical industry can be a genuine force for good in the world.”
Then-FDA Commissioner Marty Makary said that the therapy was “a significant milestone in the treatment of genetic hearing loss.” The treatment was approved under an FDA program that accelerates reviews of drugs that align with U.S. national health priorities.
In August, the first child was treated in a clinical trial for GJB2, the most common genetic cause of deafness in North America and Europe. About half of individuals with childhood hearing loss have an underlying genetic cause, accordingto Boston Children’s Hospital.
This year, Gallaudet launched a Gene Editing Think Tank led by deaf scholars and experts in genetics, philosophy, history and eugenics.
It came as members of the Gallaudet community “realized how much science was advancing much more quickly than we had anticipated,” Brandi Rarus, the university’s chief enrollment and communications officer, and a think tank member, said using an interpreter. “We just felt it was essential to give Gallaudet a prominent role when it comes to this work.”
Founded in 1864, Gallaudet is a bilingual campus in Northeast Washington teaching in English and American Sign Language, and a global hub of deaf-led research.
Greenwald, who is a member of the Gene Editing Think Tank, said the deaf community is a “rich, vibrant community, with art and poetry, with a rich culture of stories and jokes and humor.”
“It’s important for researchers to really be aware of that,” he said.
A teacher of deaf history, Greenwald noted that healers through the ages have attempted remedies for deafness. Some put cow bile with goat urine in people’s ears. Others poured boiling oil into ear canals, and religious groups attempted spiritual methods.
During the 19th and early 20th centuries, the U.S. eugenics movement focused on “what to do about deaf people marrying other deaf people,” Greenwald said. Alexander Graham Bell argued against allowing deaf people to marry each other because that would create more deaf people in the human race, “and that would be a huge calamity,” Greenwald said of Bell’s thinking.
What he sees today, he said, is “an obsession with a cure.”
Gene editing is more focused on infants and toddlers than adults, but people can become deaf at all ages. It’s often the deaf babies who grow up to become deaf adults who find solutions to accessibility issues, Rarus said. Gene editing has the potential to decrease the number of people who grow up deaf.
“That’s part of the concern,” she said. “Who will be the ones who will be considering how the world needs to adapt to accommodate individuals who lose their hearing?”
As gene editing for deafness continues advancing, “parents are going to have to make some decisions” about whether to receive treatment and what is in the best interest of their child, said Teresa Blankmeyer Burke, a think tank member as well as a professor of philosophy and bioethicist at Gallaudet. Parents by nature have a fear of their children being different from them, she said.
“When you have hearing parents who have a deaf infant, oftentimes they are making decisions out of fear or ignorance about what is possible,” she said. “They don’t know the range of what is possible.”
Instead, she advises them to consult deaf adults. They also should consider, she said, what resources and communities might become available to their children as they grow up.
For two decades, Burke has taught a course called “Bioethics and the Deaf Community,” where, she said, students always have a variety of perspectives on gene editing. Within deaf communities, too, there are differences of opinion.
“We don’t all agree, we won’t ever agree,” she said. “So the important piece here is that we need to be included in the conversation. That is essential.”
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