Jul 20, 2012

Penn Expert Addresses Ethics of Testing for Alzheimer's Risk

Previous research has suggested that knowing biomarker results can be harmful to people at increased risk for Alzheimer's disease, potentially causing anxiety or depression.

Alzheimer's Reading Room

Jason Karlawish
Diagnostic tests are increasingly capable of identifying plaques and tangles present in Alzheimer's disease, yet the disease remains untreatable.

Questions remain about how these tests can be used in research studies examining potential interventions to treat and prevent Alzheimer's disease.

Experts are discussing ways to ethically disclose and provide information about test results to asymptomatic older adults.

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Penn expert addresses ethical implications of testing for Alzheimer's disease risk

Early diagnosis without treatment options creates individual, societal conundrum

In contrast to diseases like cancer - where tumor progression and genetic markers can be measured to determine appropriate preventative steps or targeted treatments - Alzheimer's disease tests has improved diagnosis and assessment of risk, but no treatments or preventative measures are available to alter the disease progression.

Previous research has suggested that knowing biomarker results can be harmful to people at increased risk for Alzheimer's disease, potentially causing anxiety or depression.
"It is important to track the impact of revealing biomarker results to asymptomatic individuals, so we can develop and disseminate best practices," notes panelist Jason Karlawish, MD, professor in Geriatric Medicine as well as Medical Ethics and Health Policy in the Perelman School of Medicine at the University of Pennsylvania.
Since an increased risk does not mean someone will definitively get the disease, safeguards are needed to ensure individuals aren't marginalized or mistreated. While having tests available to assess risk can be helpful in diagnosing or ruling out Alzheimer's disease, there is still no consensus on how the test results will be shared with individuals, with insurance companies, and even with employers. And for those with early stages of the disease or mild cognitive impairment, standards on workplace accommodations will need to be implemented.

As researchers look to intervene in the disease as early as possible, prevention trials will need to enroll people who are at high risk for developing AD but are not suffering from symptoms. One planned prevention study will select people found to be at high risk based on amyloid imaging tests, therefore revealing test results to eligible participants. The prevention trial will also include an ethics sub-study, to gauge the emotional impact on patients learning their positive or negative amyloid status.
"This prevention trial is an excellent opportunity to better understand how older adults make sense of biomarker results and how the results impact health and overall well-being," said Karlawish, associate director of the Penn Memory Center. "Methods used for revealing genetic test results provide a template to disclose risk information to asymptomatic individuals."
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Penn Medicine is one of the world's leading academic medical centers, dedicated to the related missions of medical education, biomedical research, and excellence in patient care. Penn Medicine consists of the Raymond and Ruth Perelman School of Medicine at the University of Pennsylvania (founded in 1765 as the nation's first medical school) and the University of Pennsylvania Health System, which together form a $4.3 billion enterprise.

The Perelman School of Medicine is currently ranked #2 in U.S. News & World Report's survey of research-oriented medical schools.

The University of Pennsylvania Health System's patient care facilities include: The Hospital of the University of Pennsylvania -- recognized as one of the nation's top 10 hospitals by U.S. News & World Report; Penn Presbyterian Medical Center; and Pennsylvania Hospital – the nation's first hospital, founded in 1751.


Original content Bob DeMarco, the Alzheimer's Reading Room