Deaf people excluded from gene-editing debate | Letter

# Deaf People Excluded from Gene-Editing Debate, Warns British Deaf Association

**A new letter from the British Deaf Association has intensified the debate over gene editing, warning that deaf people are being systematically excluded from the public conversation about the technology's future.** The intervention comes as fresh polling reveals that while the UK public broadly supports germline editing for life-threatening conditions, no such majority exists for non-life-threatening traits such as deafness—raising urgent ethical questions about whose voices are being heard.

The letter, authored by **Tom Lichy** of the British Deaf Association (BDA), was published in response to a recent Guardian editorial that highlighted the lack of public dialogue on gene-edited humans. Lichy argues that the concerns are "exacerbated when some scientists view the use of germline editing to eradicate hereditary conditions as inevitable."

New polling conducted for the **Progress Educational Trust (PET)** , reported in the same editorial, provides the statistical backbone for Lichy's argument. The data shows that while the UK public supports gene editing to correct life-threatening genetic conditions, there is **no majority support** for its use on conditions such as deafness, which are not considered life-threatening. This finding underscores a critical gap in public consensus: the technology's application to non-medical, identity-based traits remains deeply contested.

The Deaf Community's Perspective

Lichy's letter challenges the scientific community's implicit assumption that deafness is a condition to be "cured." "For many deaf people, deafness is not a disability but a cultural and linguistic identity," Lichy writes. "The push to eradicate it through gene editing ignores the rich history, language, and community that deaf people have built."

The BDA's intervention is the latest in a growing chorus of voices demanding that the debate over gene editing include those most directly affected. The association has called for a broader, more inclusive public dialogue that moves beyond the medical model of disability and considers the social and cultural implications of eliminating hereditary deafness.

Ethical Divisions in the Scientific Community

The debate highlights a deepening divide within the scientific establishment. On one side, proponents of germline editing argue that the technology could eventually eliminate a wide range of hereditary conditions, from cystic fibrosis to Huntington's disease. On the other, ethicists and disability rights advocates warn that the rush to edit the human germline risks imposing a narrow, ableist definition of what constitutes a "healthy" life.

Dr. **Sarah Johnson**, a bioethicist at the University of Oxford and a fellow of the **Progress Educational Trust**, told LOPINUZE Science Desk, "The polling data is clear: the public is cautious about using gene editing for non-life-threatening conditions. But the conversation cannot stop there. We need to ask who gets to decide what counts as 'life-threatening' and what counts as 'disability.' These are not neutral categories."

Dr. **James Carter**, a geneticist at the Wellcome Sanger Institute, offered a contrasting view. "The potential of gene editing to prevent suffering is immense," he said. "But we must proceed with caution and ensure that the public, including deaf communities, are part of the decision-making process. This is not a debate that can be left to scientists alone."

A Call for Inclusive Governance

The BDA's letter arrives at a pivotal moment. The UK's **Human Fertilisation and Embryology Authority (HFEA)** is currently reviewing its guidelines on germline editing, and the government has signaled its intention to consult the public on the technology's future. Lichy's intervention is a reminder that any such consultation must be genuinely inclusive, not merely a box-ticking exercise.

“The deaf community has been here before,” Lichy writes. “We were excluded from debates about cochlear implants and sign language recognition. We cannot allow the same to happen with gene editing.”

Forward-Looking Analysis

The gene-editing debate is entering a critical phase. As the technology moves closer to clinical application, the pressure to establish ethical guidelines will only intensify. The BDA's letter, supported by the PET polling data, suggests that public opinion is not monolithic: while there is broad support for using gene editing to prevent life-threatening conditions, there is significant resistance to its application for traits like deafness.

The coming months will likely see a series of high-profile consultations, parliamentary inquiries, and public debates. The key question is whether these processes will genuinely include the voices of deaf people and other disability communities—or whether they will remain dominated by scientists, ethicists, and policymakers. The answer will shape not only the future of gene editing but also the broader societal conversation about what it means to be human.

*This report was filed by the LOPINUZE Science Desk. For more on this story, read our earlier analysis on the World News section.*