Scientific and ethical features of English‐language online tests for Alzheimer's disease

Julie M. Robillard; Judy Illes; Marcel Arcand; B. Lynn Beattie; Sherri Hayden; Peter Lawrence; Joanna McGrenere; Peter B. Reiner; Dana Wittenberg; Claudia Jacova

doi:10.1016/j.dadm.2015.03.004

Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring (Sep 2015)

Scientific and ethical features of English‐language online tests for Alzheimer's disease

Julie M. Robillard,
Judy Illes,
Marcel Arcand,
B. Lynn Beattie,
Sherri Hayden,
Peter Lawrence,
Joanna McGrenere,
Peter B. Reiner,
Dana Wittenberg,
Claudia Jacova

Affiliations

Julie M. Robillard: National Core for Neuroethics, Division of Neurology, Department of Medicine, Faculty of MedicineUniversity of British ColumbiaDjavad Mowafaghian Centre for Brain HealthVancouverBCCanada
Judy Illes: National Core for Neuroethics, Division of Neurology, Department of Medicine, Faculty of MedicineUniversity of British Columbia, UBC HospitalVancouverBCCanada
Marcel Arcand: Department of Family Medicine, Faculty of Medicine and Health SciencesUniversity of SherbrookeSherbrookeQCCanada
B. Lynn Beattie: Division of Geriatric Medicine, Department of Medicine, Faculty of MedicineUniversity of British ColumbiaGordon and Leslie Diamond Health Care CentreVancouverBCCanada
Sherri Hayden: Division of Neurology, Department of Medicine, Faculty of MedicineUniversity of British Columbia, UBC HospitalVancouverBCCanada
Peter Lawrence: Department of Electrical and Computer EngineeringUniversity of British ColumbiaVancouverBCCanada
Joanna McGrenere: Department of Computer ScienceUniversity of British ColumbiaVancouverBCCanada
Peter B. Reiner: National Core for Neuroethics, Department of Psychiatry, Faculty of MedicineUniversity of British Columbia, UBC HospitalVancouverBCCanada
Dana Wittenberg: Division of Neurology, Department of Medicine, Faculty of MedicineUniversity of British ColumbiaVancouverBCCanada
Claudia Jacova: Division of Neurology, Department of Medicine, Faculty of MedicineUniversity of British Columbia HospitalVancouverBCCanada

DOI: https://doi.org/10.1016/j.dadm.2015.03.004
Journal volume & issue: Vol. 1, no. 3
pp. 281 – 288

Abstract

Read online

Abstract 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.

Published in Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring

ISSN: 2352-8729 (Online)
Publisher: Wiley
Country of publisher: United States
LCC subjects: Medicine: Internal medicine: Neurosciences. Biological psychiatry. Neuropsychiatry: Neurology. Diseases of the nervous system; Medicine: Internal medicine: Special situations and conditions: Geriatrics
Website: https://alz-journals.onlinelibrary.wiley.com/journal/23528729

About the journal

Abstract

Keywords