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.Electronic supplementary materialThe online version of this article (doi:10.1186/s13195-016-0212-z) contains supplementary material, which is available to authorized users.
Highlights
Current Alzheimer’s disease (AD) research initiatives focus on cognitively healthy individuals with biomarkers that are associated with the development of AD
Perception In one study, interviews were conducted with two groups of First-degree relative (FDR) of AD patients; the first group consisted of individuals who had undergone genetic testing (REVEAL participants), and the second contained people who had not received information on the genetics of AD [26]
The REVEAL participants included in this study considered genetic test results that corresponded with prior beliefs regarding their risk of AD based on family history to be “not new”, whereas if test results conflicted with prior beliefs family history was often more compelling in participants’ self-perception of risk
Summary
Current Alzheimer’s disease (AD) research initiatives focus on cognitively healthy individuals with biomarkers that are associated with the development of AD. Research initiatives have turned to people who are cognitively healthy but supposedly at increased risk of developing AD on the basis of AD-related biomarkers, in order to slow down or halt the pathological processes and prevent the onset of clinical AD symptoms [5, 6]. Examples of these biomarkers are low amyloid beta 42 and high total or phosphorylated tau levels in cerebrospinal fluid (CSF) [7], positive amyloid PET scans [8] and genetic markers such as the apolipoprotein E (APOE) ε4 genotype [9]. It is plausible that the disclosure of AD-related biomarkers is associated with an unfavorable balance of risks and benefits for some people
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