Tom Lichy, head of policy and research at the British Deaf Association (BDA), has raised concerns that deaf signers are being excluded from the national conversation on gene editing. In a letter responding to a recent Guardian editorial, Lichy highlighted polling data indicating that while the UK public supports gene editing for life-threatening conditions, there is no majority backing for its use on non-life-threatening conditions such as deafness.
Polling Reveals Public Support Only for Life-Threatening Conditions
The new polling, conducted for the Progress Educational Trust and cited in the Guardian editorial, shows that the UK public agrees with using gene editing to correct life-threatening genetic conditions. However, the same majority does not extend to conditions like deafness, which are not life-threatening. Lichy argues that this distinction is crucial and that the deaf community must be actively involved in decisions about therapies that affect them.
FDA Approval and Lack of Accessible Information
In April, the US Food and Drug Administration approved a specific gene therapy for deafness, praising itself for acting swiftly after research was published in the New England Journal of Medicine. Lichy notes that such information and the associated discussions in medical and scientific circles are rarely made accessible in signed languages. He warns that there is a clear and present risk that decisions about these therapies will be made without the informed and active participation of deaf signers.
Call for Inclusive Policy
Lichy implores those responsible for UK policy to work with the principle “nothing about us without us” consistently in mind. He emphasises the need for a national conversation that includes deaf signers and ensures that gene-editing debates are accessible to all. The BDA’s stance aligns with the Guardian editorial’s call for a public dialogue on the darker uses of gene editing alongside medical ones.
