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Most at risk of Alzheimer's would join research trial

Posted on: Monday, 7 November 2005, 16:39 CST

By Anne Harding

NEW YORK (Reuters Health) - Most people at high risk of Alzheimer's disease say they would be willing to have their loved ones enroll them in research studies when they could no longer give consent themselves, a new survey shows.

The issue of who should offer consent for research on people who are incapable of making the decision themselves has been debated for decades, Dr. Scott Y. H. Kim of the University of Michigan Medical School in Ann Arbor noted in an interview with Reuters Health.

"Is it ethical for you to volunteer somebody to do that? If it is OK, how much risk is it OK to expose the person to? Not surprisingly, we do not have a policy consensus on how to set limits if any on that kind of surrogate-based research," he said. "We almost never ask the people who might be affected by this."

Kim and his team surveyed 229 men and women, who were all over 70 and had at least one close relative with Alzheimer's disease -- putting them at high risk of the disease themselves, about their views on a variety of research scenarios.

Over 90% of the men and women surveyed said they would be comfortable with a relative enrolling them in low-risk studies such as clinical trials testing new Alzheimer's drugs, which is the most common type of research done on the disease.

The survey participants were presented with 10 different possible studies, ranging from very low-risk-such as observation only -- to higher risk, such as gene therapy or Alzheimer's disease vaccines, or tests requiring a brain biopsy or a spinal tap. The riskier the scenario, the less likely participants were to say they would want a relative to agree to it for them. However, even for the riskiest, just over half of the men and women surveyed said they would accept a relative's consent on their behalf.

Participants also were asked whether they themselves would permit a loved one to have the test, and whether they thought the test should be permitted from a societal perspective. Across the board, acceptance was highest when the patient him or herself was involved, followed by society, followed by the relative.

"Most people will tend to be protective of their loved one when faced with a situation like this, which is reassuring in terms of protecting the vulnerable," Kim said.

The findings from the first extensive study on the topic provide "measured support" for the way these sorts of studies are currently done, Kim said, but he argues that much more research needs to be done.

The study also shows that it makes sense to get laypeople involved in discussions of medical ethics, he added. "People who are affected by the policies who are non-researchers, lay people, are able to give very informative answers that will help us thinking about this policy," he explained.

"When we have these thorny ethical dilemmas, instead of relying on intuitions of professional ethicists, we should really talk to people and see what they think. I think that's a very important lesson from this study."

SOURCE: Neurology, November 8, 2005.

Source: REUTERS

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