Recap of NYT article on gene therapy for Deaf boy
See this? The New York Times reported this yesterday. “Gene Therapy Allows an 11-Year-Old Boy to Hear for the First Time.”
This boy’s name is Aissam Dam. He was born deaf. He grew up in Morocco. He used sign language growing up.
He moved to Spain last year. He then learned Spanish Sign Language. A doctor said Aissam was eligible for a clinical trial using gene therapy.
He is deaf due to a very rare mutation in a gene called otoferlin. We did a story about the otoferlin gene in a previous story.
[Video clip]
Dr. IV Mirus: So the idea is what if a virus has its DNA removed and replaced with what we want. For example, the otoferlin gene, the “right” one, is put in there and it gives the virus, when it goes into a person, the ability to read the DNA and make a new kind of otoferlin protein. So it is using a virus to introduce a new kind of “blueprint” to make a different kind of protein.
[End video clip]
Aisaam came to the U.S. in October to get gene therapy at the Children’s Hospital of Philadelphia. This was paid for by an American pharmaceutical company, Eli Lilly.
His non-functioning otoferlin gene was replaced with a functional gene. The process involves putting new genes in two drops of liquid that is injected into the cochlea. He had only one ear treated.
The article said the treatment was a “success.” He was able to hear traffic noises. He took a hearing test in the treated ear and the test said it was close to normal. But it doesn’t mean Aissam can instantly understand spoken language because he never had the chance to learn it growing up. He will now have a new journey of learning sounds.
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The article said doctors and scientists hope to expand trials for gene therapy targeting deafness in the U.S. There are already two new deaf patients, a 3-year-old boy from Miami and a 3-year-old girl from San Francisco. Scientists believe they could potentially start finding treatments for various kinds of deafness.
The whole idea of gene therapy for deaf children is naturally controversial.
The article quoted a deaf pediatrician in North Carolina named Dr. Robert C. Nutt, who said there is an internal Deaf community that doesn’t see itself as needing to be cured. The article didn’t go into detail on controversy or ethical concerns. It mainly focused on gene therapy.
We have covered the ethical concepts with Dr. Teresa Blankmeyer Burke, a bioethicist who is also a professor at Gallaudet University.
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Dr. Teresa Blankmeyer Burke: My concern is that people will find it easy to move forward without thinking about the impact on the Deaf community, on threatening sign languages, and on the sense of valuing the community itself. It will take time. If this starts to roll out, it will probably be 40, 50 years before we see a real impact on the number of children being born deaf. It will be much less. What would that mean for Deaf schools? We have seen the results of cochlear implants and immunizations.
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So, this is the recap of this article.
Source: https://www.nytimes.com/2024/01/23/health/deaf-gene-therapy.html