The lone volunteer in a unique study involving a gene-editing technique has died, and those behind the trial are now trying to figure out what killed him. Terry Horgan, a 27-year-old who had Duchenne muscular dystrophy, died last month, according to Cure Rare Disease, a Connecticut-based nonprofit founded by his brother, Rich, to try and save him. Although it’s still unclear what killed him, his death is raising questions about the experiment and the overall prospect of what one ethicist calls designer genetic therapies. The hope for this study was to use a gene-editing tool called CRISPR to treat Horgan’s particular form of Duchenne Muscular Dystrophy.
Death in US gene therapy study sparks search for answers
