A growing debate over gene-editing technologies is dividing scientists and disability rights advocates, as advances in CRISPR-Cas9 make it increasingly possible to prevent or eliminate genetic conditions before birth.

Technologies like CRISPR-Cas9 allow researchers to modify embryos in ways that could prevent inherited conditions, including some forms of deafness and muscular dystrophy. Supporters argue that the technology reduces suffering and gives future children a chance at healthier lives.

The Deaf community, however, has been among the most vocal critics. Deaf advocates argue that hearing loss is not simply a medical problem but also a cultural identity, one with its own language, art, and community. Editing deafness out, they say, could threaten an entire community of people who see sign language as central to who they are.

Some disability rights organizations have gone further, warning that CRISPR could function as a modern form of eugenics, systematically eliminating people deemed genetically “less worthy” and dismantling communities such as Deaf culture and dwarf culture.

Some scientists, on the other hand, maintain that preventing suffering is a moral responsibility. Dr. Neal Baer, co-director of Harvard’s Master of Science in Media, Medicine, and Health, acknowledges the technology’s promise but warns, “Who would decide what was passed on or what wasn’t passed on?”

Researchers are now calling on governments to develop stronger global guidelines, ones that include direct input from disability communities, before the technology advances further.

The debate raises a question that no laboratory can answer: Who gets to decide which lives need to be changed?

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