Privacy and Ethics Challenges on Early Diagnosis of Alzheimer’s Disease

By | September 20, 2011

A timely article in the medical journal Neurology speaks to some impending issues that millions of patients and physicians will be facing over the next decade, namely the possible early diagnosis of Alzheimer’s Disease in the pre-clinical phase, before functional cognitive impairment is present.

New computerized cognitive testing tools and experimental biomarker tests are bringing us closer to having a standardized screening toolkit for Alzheimer’s that can be used in general practice settings, aka the doctor’s office.

In general, screening tests are a good, cost efficient method to catch chronic diseases early so that effective intervention and treatment can begin. (Hypertension and diabetes are good examples.)

Now comes the tricky part: Screening tools for early diagnosis of Alzheimer’s and other forms of dementia will probably be in place before there is an effective drug therapy or cure for the disease. In my view, early screening for Alzheimer’s can stand by itself for patient safety and quality of life reasons, but it does raise some big issues that need to be addressed:

1. What does “diagnosis” really mean for pre-clinical Alzheimer’s Disease?

In this case, a diagnosis for pre-clinical Alzheimer’s does not mean a 100% chance of developing the disease, it means an elevated risk profile based on still experimental biomarker tests. Biomarker testing for Alzheimer’s is still a few years away from a reliable set of tests, but there is value in continuing the research.

Computerized cognitive screening tools also can provide early warning of a subtle decline in cognitive skills, known as Mild Cognitive Impairment, or MCI. The new Medicare Annual Wellness Visit (AWV) benefit includes “detection of cognitive impairment”, so I expect physician practices with a large number of Medicare patients will begin looking for cognitive screening tools.

2. What are the ramifications for the person receiving a pre-clinical Alzheimer’s Disease or MCI diagnosis?

As a useful example, people diagnosed in the early stages of Mild Cognitive Impairment may or may not progress into Alzheimer’s Disease, based on a number of factors. They are typically functional enough to continue working, can handle their personal finances, and can live independent lives. Should their employer know about their MCI diagnosis? Does the diagnosis affect their ability to drive?

Bottom line: We need to build a legal, privacy, and ethics process to handle the millions of pre-clinical Alzheimer’s and MCI cases that will probably occur over the next few decades.

Authored by Jason Karlawish, MD, Professor of Medicine and Medical Ethics at the University of Pennsylvania, Perelman School of Medicine, the Neurology article raises some important and practical issues with diagnosis of pre-clinical Alzheimer’s and MCI. Stay tuned for more updates.