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What to tell patients when trials go awry

The New York Times, August 24, 2010

Joel Ross, MD, the founder/CEO of the Memory Enhancement Centers of New Jersey, makes his living enrolling subjects in drug company clinical trials that are testing drugs for Alzheimer’s disease, among others. So when Eli Lilly announced last week that its promising Alzheimer’s drug was making patients worse and that it was halting two large clinical trials, it seemed likely that Ross would hear from family members of his patients. Are other experimental Alzheimer’s drugs safe? they might ask. Should they get their family members out of those Alzheimer’s studies? Not a single family member called. And Ross is not sure why. Whatever the reason, the silence of Alzheimer’s family members gives rise to an ethical question. Do families now need extra protection or warnings about the Lilly experience when they sign up Alzheimer’s patients for studies?