Tom Lichy, head of policy and research at the British Deaf Association (BDA), has warned that deaf signers are being excluded from critical discussions about gene editing, creating a risk that decisions will be made without their informed and active participation.
Public opinion on gene editing for deafness
New polling for the Progress Educational Trust, referenced in a Guardian editorial, reveals that the UK public supports gene editing for life-threatening genetic conditions but does not extend majority support to non-life-threatening conditions such as deafness. The editorial, published on 5 July, highlighted concerns about the lack of public dialogue on gene-edited humans and the inevitability some scientists see in using germline editing to eradicate hereditary conditions.
FDA approval and lack of accessible information
In April, the US Food and Drug Administration approved a specific gene therapy for deafness, lauding its swift action after research appeared in the New England Journal of Medicine. Lichy noted that such information and the ensuing medical and scientific discussions are rarely made accessible in signed languages, effectively excluding deaf signers from the debate.
“There is a clear and present risk that decisions associated with these therapies will be made without the informed and active participation of deaf signers,” Lichy wrote in a letter to the Guardian.
Call for inclusive policy
The BDA implores UK policymakers to consistently apply the principle “nothing about us without us” to ensure deaf signers are included in all relevant discussions. The organisation urges a national conversation that actively involves the deaf community in shaping the future of gene editing.
