Psychological, behavioral and social effects of disclosing Alzheimer's disease biomarkers to research participants: a systematic review.
Current Alzheimer's disease (AD) research initiatives focus on cognitively healthy individuals with biomarkers that are associated with the development of AD. It is unclear whether biomarker results should be returned to research participants and what the psychological, behavioral and social effects of disclosure are. This systematic review therefore examines the psychological, behavioral and social effects of disclosing genetic and nongenetic AD-related biomarkers to cognitively healthy research participants.



We performed a systematic literature search in eight scientific databases. Three independent reviewers screened the identified records and selected relevant articles. Results extracted from the included articles were aggregated and presented per effect group.



Fourteen studies met the inclusion criteria and were included in the data synthesis. None of the identified studies examined the effects of disclosing nongenetic biomarkers. All studies but one concerned the disclosure of APOE genotype and were conducted in the USA. Study populations consisted largely of cognitively healthy first-degree relatives of AD patients. In this group, disclosure of an increased risk was not associated with anxiety, depression or changes in perceived risk in relation to family history. Disclosure of an increased risk did lead to an increase in specific test-related distress levels, health-related behavior changes and long-term care insurance uptake and possibly diminished memory functioning.



In cognitively healthy research participants with a first-degree relative with AD, disclosure of APOE ε4-positivity does not lead to elevated anxiety and depression levels, but does increase test-related distress and results in behavior changes concerning insurance and health. We did not find studies reporting the effects of disclosing nongenetic biomarkers and only one study included people without a family history of AD. Empirical studies on the effects of disclosing nongenetic biomarkers and of disclosure to persons without a family history of AD are urgently needed.



PROSPERO international prospective register for systematic reviews CRD42016035388 . Registered 19 February 2016.
Department of Neurology, Radboudumc, Geert Grooteplein-Zuid 10, 6525 GA, Nijmegen, The Netherlands.
S A S A
SA
Bemelmans
Department of Medical Ethics and Philosophy of Medicine, Erasmus MC, Wytemaweg 80, 3015 CN, Rotterdam, The Netherlands.
K
K
Tromp
Department of Medical Ethics and Philosophy of Medicine, Erasmus MC, Wytemaweg 80, 3015 CN, Rotterdam, The Netherlands.
E M
EM
Bunnik
Cambridge Institute of Public Health, University of Cambridge, Forvie Site, Robinson Way, Cambridge, CB2 0SR, UK.
R J
RJ
Milne
Cambridge Institute of Public Health, University of Cambridge, Forvie Site, Robinson Way, Cambridge, CB2 0SR, UK.
S
S
Badger
Cambridge Institute of Public Health, University of Cambridge, Forvie Site, Robinson Way, Cambridge, CB2 0SR, UK.
C
C
Brayne
Department of Medical Ethics and Philosophy of Medicine, Erasmus MC, Wytemaweg 80, 3015 CN, Rotterdam, The Netherlands.
M H
MH
Schermer
Department of Neurology, Radboudumc, Geert Grooteplein-Zuid 10, 6525 GA, Nijmegen, The Netherlands. edo.richard@radboudumc.nl.
E
E
Richard
D000544:Alzheimer Disease / Q000150:complications / Q000235:genetics / Q000378:metabolism / Q000523:psychology; D053327:Apolipoprotein E4 / Q000235:genetics; D015415:Biomarkers / Q000378:metabolism; D035843:Biomedical Research; D003072:Cognition Disorders / Q000209:etiology; D016208:Databases, Factual / Q000706:statistics & numerical data; D030881:Disclosure; D005260:Female; D006801:Humans; D008297:Male; D011618:Psychotic Disorders / Q000209:etiology*; D012919:Social Behavior
D053327:Apolipoprotein E4; D015415:Biomarkers
Alzheimer’s disease; Behavioral effects; Biomarkers; Clinical research; Disclosure; Ethics; Prevention studies; Psychological effects; Risk; Social effects