The ethics of Alzheimer's risk testing

Alzheimer's disease is a tragic and untreatable disorder--while there are drugs that can alleviate some of the symptoms, there is nothing yet on the market that can slow or stop the disease. Biomarker tests are being developed and used that can improve diagnosis and predict the chance of developing the disease. However, knowing the potential risk of Alzheimer's disease can lead to anxiety and depression in people who have not developed symptoms. So is their use ethical, when patients may not be able to do anything with the results other than wait for symptoms and wonder about the future?

Because increased risk means just that--an increased risk, not a certainty--it will be important to put safeguards in place as the expertise in and access to Alzheimer's disease biomarkers increases. These will have to include how the information affects employers and insurance providers, as well as individuals, both while they are asymptomatic and may not go on to develop the disease, and as they develop mild cognitive impairment but can still work.

Researchers are planning a trial of a preventive drug in asymptomatic people at high risk of developing Alzheimer's disease, so by its very nature, participants will need to know their status. This will include an ethics sub-study, to gauge the emotional impact on patients learning their positive or negative amyloid status.

"It is important to track the impact of revealing biomarker results to asymptomatic individuals, so we can develop and disseminate best practices," said Dr. Jason Karlawish, a professor in geriatric medicine and medical ethics and health policy in the Perelman School of Medicine at the University of Pennsylvania. Karlawish is a panelist In a discussion on this topic at the Alzheimer's Association International Conference 2012 (AAIC 2012).

In contrast to this concern, results of a study from Australia suggest that genetic testing for Alzheimer's disease can reduce anxiety for people, regardless of whether the test confirms a risk of developing the disease. -- Suzanne Elvidge (email)