Your editorial (The Guardian view on gene-edited humans: darker uses must be acknowledged alongside medical ones, 5 July) offers welcome support to those expressing concern about the lack of public dialogue on gene-edited humans. These concerns are exacerbated when some scientists view the use of germline editing to eradicate hereditary conditions as inevitable.

The new polling for the Progress Educational Trust reported in your editorial indicates that the UK public agrees with the use of gene editing to correct life‑threatening genetic conditions. No such majority supports use for conditions such as deafness which are not remotely life-threatening.

Your editorial concludes that it is time to have a national conversation about what happens next. We agree. In April, the US Food and Drug Administration approved specific gene therapy for deafness, congratulating itself on “acting swiftly” after research was published in the New England Journal of Medicine. Such information, and the associated discussion in medical and scientific circles, is rarely if ever made accessible in signed languages. 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.

The familiar refrain “nothing about us without us” is highly relevant here. We implore those responsible for UK policy to work with it consistently in mind.
Tom Lichy
Head of policy and research, British Deaf Association