Deaf community excluded from gene-editing debate, letter says
5 reported
A letter published in The Guardian from the British Deaf Association argues that deaf people are being excluded from the debate over gene editing for deafness. The letter references a recent Guardian editorial that expressed concern about a lack of public dialogue on gene-edited humans. It notes that new polling from the Progress Educational Trust indicates UK public support for gene editing to correct life-threatening conditions, but not for conditions like deafness. The letter points to the US Food and Drug Administration’s approval of a specific gene therapy for deafness in April, stating that related discussions are rarely made accessible in signed languages. The author warns that decisions about these therapies risk being made without the informed participation of Deaf signers. The letter calls on UK policymakers to apply the principle “nothing about us without us.”
What’s reported
The letter responds to a Guardian editorial on gene-edited humans and lack of public dialogue.
Polling for the Progress Educational Trust shows UK public supports gene editing for life-threatening conditions but not for deafness.
In April, the US FDA approved a specific gene therapy for deafness, citing swift action after research in the New England Journal of Medicine.
The letter states that information and discussion about these therapies are rarely made accessible in signed languages.
The British Deaf Association urges UK policymakers to consistently apply the principle “nothing about us without us.”
Key figures
Tom Lichy, head of policy and research, British Deaf Association
Sources: The Guardian
