
A letter from the British Deaf Association raises concerns about gene editing debates. The group argues that deaf people are being left out of important conversations. Recent polling shows the UK public supports gene editing for life-threatening conditions. However, there is no majority support for editing genes for conditions like deafness, which are not serious health threats.
In April, the US Food and Drug Administration approved a new gene therapy for deafness. The approval came quickly after research was published. However, medical discussions about these therapies are rarely available in sign language. This means deaf people cannot easily participate in conversations that affect them.
The letter emphasizes the phrase "nothing about us without us." The authors urge UK policymakers to include deaf signers in decisions about gene editing. They warn that choices about deafness treatments are being made without deaf people's input. Meaningful participation from the deaf community is essential.