Peer-reviewed article
Risks in a Trial of an Innovative Treatment of Duchenne Muscular Dystrophy
Studies of innovative therapies for muscular dystrophy raise unique ethical issues. The disease is currently untreatable and relentlessly progressive. A number of potentially efficacious treatments are being developed, but like all…
Studies of innovative therapies for muscular dystrophy raise unique ethical issues. The disease is currently untreatable and relentlessly progressive. A number of potentially efficacious treatments are being developed, but like all treatments, they may have unforeseen adverse effects. Nevertheless, patients and families, facing a bleak future, may be willing to take the gamble and try the treatments. Many doctors are eager to study them. But should institutional review boards approve them? This article discusses these issues and recounts the ways that one such study elicited different responses from different institutional review boards.
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About the author
John D. Lantos is a pediatrician and bioethicist writing on AI in medicine, neonatal intensive care, and end-of-life decisions. His essays appear in JAMA, JAMA Pediatrics, the Hastings Center Report, the New England Journal of Medicine, and Aeon. Read more about John.