Most at risk of Alzheimer’s would join research trial

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.