"As potential new therapies such as vaccines, gene therapy, and new drugs are being tested, the need for research must be balanced with the need to protect vulnerable adults," said Scott Y. H. Kim, MD, PhD, of the University of Michigan Medical School in Ann Arbor. "This continues to be an area with unsettled policy, and there is little data to guide policymakers. It doesn't seem ideal to leave these important ethical questions solely to politics. This study shows that it's possible to learn the views of key stakeholder groups, and they can provide important insights."
People at heightened risk for Alzheimer's disease 229 people who were over 70 and had at least one close relative with the disease took part in the study, which is published in the November 8, 2005, issue of Neurology, the scientific journal of the American Academy of Neurology.
The participants were given 10 research scenarios and asked if the research portrayed was acceptable when it involves people with Alzheimer's who cannot give their own informed consent and are enrolled with a family member's permission.
They were asked to consider three perspectives: whether the research was acceptable from a societal perspective, from their own perspective (whether the participants would want a loved one to make the decision for them), and from the perspective of a surrogate (how they would make a decision for a loved one).
The 10 scenarios ranged from low-risk studies involving observation or routine blood draws to higher-risk studies li
Contact: Marilee Tuite
American Academy of Neurology