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Scientific and ethical features of English-language online tests for Alzheimer's disease
Julie M Robillard1, Judy Illes2, Marcel Arcand3
1National Core for Neuroethics, Division of Neurology, Department of Medicine, Faculty of Medicine, University of British Columbia, Djavad Mowafaghian Centre for Brain Health, Vancouver, BC, Canada.
Introduction:
Freely accessible online tests for the diagnosis of Alzheimer's disease (AD) are widely available. The objective of this study was to evaluate these tests along three dimensions as follows: (1) scientific validity; (2) human-computer interaction (HCI) features; and (3) ethics features.
Methods:
A sample of 16 online tests was identified through a keyword search. A rating grid for the tests was developed, and all tests were evaluated by two expert panels.
Results:
Expert analysis revealed that (1) the validity of freely accessible online tests for AD is insufficient to provide useful diagnostic information; (2) HCI features of the tests are adequate for target users, and (3) the tests do not adhere to accepted ethical norms for medical interventions.
Discussion:
The most urgent concerns raised center on the ethics of collecting and evaluating responses from users. Physicians and other professionals will benefit from a heightened awareness of these tools and their limitations today.
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