Addressing the ethical, policy, and social challenges of preclinical Alzheimer disease
Abstract
Research suggests that Alzheimer disease (AD) pathophysiology begins prior to the clinical expression of the disease and that biomarker measures may provide direct evidence of this process. As a result, it may be possible to uncouple the diagnosis of AD from the clinical expression of the disease. The shifting boundaries between normal brain aging and disease present 3 challenges: 1) establishing guidelines for researchers and clinicians to safely and effectively communicate the diagnosis of preclinical AD, 2) setting up a process that effectively translates this diagnosis into practice and policy, and 3) adapting laws, regulations, and professional practices to the diagnosis of preclinical AD. The field of genetic testing for AD suggests how to balance a patient's desire to know his or her risk of developing dementia with a clinician's desire to mitigate the potential harms of that information. The development of diagnostic and treatment guidelines for other diseases of aging, such as cardiovascular disease, suggests the need for a National Alzheimer's Education Program to develop policies and procedures to translate preclinical AD into both clinical practice and policy. Revisions are needed to laws, regulations, and professional practices governing driving, financial management and planning, and privacy and confidentiality.
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Copyright © 2011 by AAN Enterprises, Inc.
Publication History
Received: April 22, 2011
Accepted: July 6, 2011
Published online: September 14, 2011
Published in print: October 11, 2011
Disclosure
Dr. Karlawish serves on the Professional Advisory Board for and holds stock in SeniorBridge, Inc.; is a co-holder of a license of an Integrated NeuroDegenerative Disease Database developed at the University of Pennsylvania; serves as an Associate Editor of the Journal of the American Geriatrics Society; receives publishing royalties for Treating Dementia: Do We Have a Pill for It? (Johns Hopkins University Press, 2009) and Open Wound: The Tragic Obsession of Dr. William Beaumont (University of Michigan Press, 2011); and receives research support from Pfizer Inc, the NIH (NIA, NINDS, NIMH), and the Robert Wood Johnson Foundation.
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