Study Shows Strong Public Interest in Genetic Testing for Alzheimer?s Disease
For immediate release: September 06, 2001
Boston, MA—Approximately 80 percent of adults responding to a random telephone survey would be willing to take a test to determine if they are genetically predisposed to developing Alzheimer’s disease if they were sure the test was accurate. But willingness to take the test falls to 45 percent if the test has a one in 10 chance of being wrong. The findings come in a study by Peter Neumann, Sc.D. and James Hammitt, Ph.D. at the Harvard Center for Risk Analysis, part of the Harvard School of Public Health, as well as Kenneth Kosik, M.D. of Harvard Medical School, and Howard Fillit, M.D. and colleagues at the Institute for the Study of Aging. The study appears in the current issue of the journal, Health Affairs (www.healthaffairs.org).
Importantly, tests of this sort remain hypothetical at this time, but the ability of physicians to predict Alzheimer’s disease is improving.
Among 314 people interviewed in a nationwide telephone survey, inclination to take the test was strongest among those with a family history of Alzheimer’s and among people with experience caring for someone with the disease.
Willingness to take an accurate test was strong across all age groups. Those with less education and people with lower incomes were somewhat more inclined to take the test.
When asked what they would do if they tested positive, respondents said:
- sign advanced directives (84 percent)
- spend more time with family (80 percent)
- get finances in order (74 percent)
- purchase long-term care insurance (69 percent)
- seek mental health counseling (46 percent)
- travel more (42 percent)
- change jobs (14 percent)
Only 32 percent of the sample said they were either worried or very worried that insurers or employers could get access to test information. Of those unwilling to take the test, approximately two thirds said they didn’t want to face living with the knowledge they might get the disease, or that there are currently no preventive treatments.
Neumann and his co-authors caution that, "While people may claim on surveys that they would obtain a genetic test, in reality they may not actually do so, and those who said they would purchase long-term care insurance might not do so. Nonetheless, the data suggest that people may value this knowledge for both personal and economic reasons, even though there is currently no way to prevent the disease."
The study was funded by a grant from the Institute for the Study of Aging, a non-profit research institute established by the Estee Lauder Trust and dedicated to research on cognitive aging and Alzheimer’s disease. Further information on the Institute is available at www.aging-institute.org or by contacting Howard Fillit, M.D. at (212) 572-4086.
For further information, please contact:
Assistant Professor of Policy and Decision Sciences
Harvard Center for Risk Analysis
(617) 432-1312, email@example.com
Kenneth Kosik, M.D., Professor of Neurology and Neurosciences
Harvard Medical School
(617) 525-5230, firstname.lastname@example.org
Harvard School of Public Health
(617) 432-6052, email@example.com
Howard Fillit, M.D., Executive Director
The Institute for the Study of Aging
(215) 572-4086 firstname.lastname@example.org