Decide for Me When I Can't, Most People Say
WEDNESDAY Jan. 21, 2009 -- Older Americans support having their family members enroll them in disease research studies should they become incapable of making the decision themselves, a new study says.
The findings, based on a University of Michigan study, would prove especially helpful in studying people with Alzheimer's disease, which often impairs decision-making ability, making people unable to give proper consent for scientists to study their condition.
The survey of people age 51 and older found that at least 68 percent believed family surrogates should be able to grant consent for a mentally incapacitated loved one to participate in a research study. About three in five said they would want their own loved ones to give the OK for them to participate in some aspect of research if they could not make that decision themselves.
Federal law allows legally authorized representatives of adults to make such decisions (called "surrogate consent") when necessary. Who qualifies as such a representative, however, is left up to the states, and state policies often are murky.
These uncertainties have caused some institutions to not allow surrogate consent at all, halting valuable research, lead author Dr. Scott Y. H. Kim, an associate professor in the department of psychiatry at the University of Michigan Medical School, said in a news release issued by the university.
"We wring our hands about this issue in ethics circles," Kim said, "but people seem to understand that we need to do this kind of research to find ways of treating Alzheimer's."
Some research has been stopped and others not allowed to begin, Kim said, because of confusion about surrogate consent. But he noted that a U.S. Department of Health and Human Services advisory committee is researching the issue.
The study was published in the Jan. 13 issue of Neurology.
The U.S. National Institute on Aging has more about Alzheimer's disease.
Posted: January 2009