Those most at risk of Alzheimer's would allow loved ones enroll them in research

Nov 8 2005

According to a new survey most people at high risk of Alzheimer's disease would be willing to have their loved ones enroll them in research studies when they could no longer give consent themselves.

The debate over the issue of who should offer consent for research on people who are incapable of making the decision themselves has rattled on for decades.

But now Dr. Scott Y. H. Kim of the University of Michigan Medical School in Ann Arbor says he and his team who surveyed 229 men and women, at high risk of Alzheimer's, found that over 90% of them would be comfortable with a relative enrolling them in low-risk studies such as clinical trials testing new Alzheimer's drugs.

This is apparently the most common type of research done on the disease.

The group who were all over 70 and had at least one close relative with Alzheimer's disease, which puts them at high risk of the disease themselves, were asked about their views on a variety of research scenarios.

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, but 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 were also 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.

Overall that acceptance was highest when the patient was involved, followed by society, followed by the relative.

Kim says it is understandable that most people will tend to be protective of their loved one when faced with such a situation, which is in itself reassuring in terms of protecting the vulnerable.

Kim says that the findings from this first extensive study on the topic provided "measured support" for the way such studies are currently done, but he does argue that much more research needs to be done.

The study also shows that getting laypeople involved in discussions of medical ethics makes sense as these are the ones who are affected by the policies and are able to give very informative answers that will help thinking about such policies.

He firmly believes difficult ethical dilemmas should not rely solely on the intuitions of professional ethicists.

The survey is published in Neurology, November 8, 2005.