The lone volunteer in a unique study involving a CRISPR gene-editing technique has died, and those behind the trial are now trying to figure out what killed him.
This undated photo shows Terry Horgan. Horgan, a 27-year-old who had Duchenne muscular dystrophy, died last month, Oct. 2022, 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.
“This whole notion that we can do designer genetic therapies is, I would say, uncertain,” said Arthur Caplan, a medical ethicist at New York University who is not involved in the study. “We are out on the far edge of experimentation.” Linda Horgan of Montour Falls, N.Y., holds a photo of her three brothers, all of whom died of Duchenne muscular dystrophy. Her son Terry Horgan, a 27-year-old who had Duchenne muscular dystrophy, died last month, Oct. 2022, according to Cure Rare Disease, a Connecticut-based nonprofit founded by his brother, Rich, to try and save him.
Sarah Willey, spokeswoman for Chan Medical School, said scientists there provided data to the company for the report. She later emailed to say no one there would comment further; out of respect for the family’s wishes, all information would come from Cure Rare Disease. Monkol Lek, a Yale genetics expert who has been collaborating on the effort, did not respond to a request for comment.
Horgan’s recent death, he said, “may make us think whether we really do like studies that are just on one person, and do we want to say: ‘No, ethically, you’ve got to at least have a trial where you line up 5, 10, 20 people you learn from the data.’"On the company’s web site, Horgan was described as a “medical pioneer” who “will be remembered as a hero.”In 2020, the Montour Falls, New York resident blogged that he was diagnosed with Duchenne at age 3.
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