Evidence map›Paper›PMID 27832826›Full record

SynthesisAlzheimer's research & therapy2016

Psychological, behavioral and social effects of disclosing Alzheimer's disease biomarkers to research participants: a systematic review.

S A S A Bemelmans, K Tromp, E M Bunnik, R J Milne, S Badger, C Brayne, M H Schermer, E Richard

Registry-linked trialAbstract readSystematic Review
PubMed Full text at PMC Publisher
In one paragraph

Synthesis in Alzheimer's research & therapy, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04471779 (The IDEAL Study), which is not on this map. Cited by 50 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
50citing papers in PubMed, 2 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT04471779 nacompletednot on this mapstarted 2021, after this paper: background citation

The IDEAL Study: Information About Alzheimer's Disease for Latinos in New York City

TypeinterventionalSponsorColumbia UniversityRan2021 to 2025Enrolled374ConditionsAlzheimer DiseaseArmsDisclosure of APOE genotype
3 · Its place in the literature

Who cites it

50 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
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  3. Psychological impacts of APOE genotype disclosure among Latinos in New York City: a randomized controlled trial.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

S A S A BemelmansDepartment of Neurology, Radboudumc, Geert Grooteplein-Zuid 10, 6525 GA, Nijmegen, The Netherlands.
K TrompDepartment of Medical Ethics and Philosophy of Medicine, Erasmus MC, Wytemaweg 80, 3015 CN, Rotterdam, The Netherlands.
E M BunnikDepartment of Medical Ethics and Philosophy of Medicine, Erasmus MC, Wytemaweg 80, 3015 CN, Rotterdam, The Netherlands.
R J MilneCambridge Institute of Public Health, University of Cambridge, Forvie Site, Robinson Way, Cambridge, CB2 0SR, UK.
S BadgerCambridge Institute of Public Health, University of Cambridge, Forvie Site, Robinson Way, Cambridge, CB2 0SR, UK.
C BrayneCambridge Institute of Public Health, University of Cambridge, Forvie Site, Robinson Way, Cambridge, CB2 0SR, UK.
M H SchermerDepartment of Medical Ethics and Philosophy of Medicine, Erasmus MC, Wytemaweg 80, 3015 CN, Rotterdam, The Netherlands.
E RichardDepartment of Neurology, Radboudumc, Geert Grooteplein-Zuid 10, 6525 GA, Nijmegen, The Netherlands. edo.richard@radboudumc.nl.

Funding

Medical Research Council MR/L023784/1Medical Research Council MR/L023784/2
6 · The paper itself

Abstract

backgroundCurrent 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.

methodsWe 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.

resultsFourteen 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.

conclusionIn 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.

trial registrationPROSPERO international prospective register for systematic reviews CRD42016035388 . Registered 19 February 2016.

Indexed as

Alzheimer DiseaseBiomedical ResearchDisclosureSocial BehaviorApolipoprotein E4BiomarkersCognition DisordersDatabases, FactualFemaleHumansMalePsychotic DisordersApolipoprotein E4BiomarkersAlzheimer’s diseaseBehavioral effectsBiomarkersClinical researchDisclosureEthicsPrevention studiesPsychological effectsRiskSocial effects

Identifiers

PMID27832826
PMCPMC5103503

What OpenQuestion holds

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Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.