To reveal or not to reveal? New data on the question

As the Alzheimer’s disease (AD) field moves closer to using genetic and biomarker data to identify people at risk, researchers are urgently trying to tackle whether and how to disclose that information to people in both routine clinical care and research settings. This past February, the Alzheimer Research Forum, an online scientific knowledge base for Alzheimer’s disease, published a detailed account of the issues involved and ongoing studies aimed at these goals. At the 2012 Alzheimer’s Association International Conference in Vancouver, three of the featured researchers updated attendees on their projects at a plenary session dedicated to the topic.

One topic of discussion at the AAIC session was the questions of whether it is psychologically harmful to divulge ApoE4 carrier status, which is associated with a higher risk of Alzheimer’s disease, to cognitively normal people. Jason Karlawish, MD, explored perhaps an even more contentious issue of whether doctors or researchers should reveal plaque status to cognitively normal people, as research on whether cognitively normal people with plaque progress to Alzheimer’s disease is at an earlier stage. “We have great concern that it may cause despair,” said Dr. Karlawish.

Alzheimer Research Forum

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