Evidence map›Paper›PMID 21696382›Full record

ReviewClinical genetics2011

Using Alzheimer's disease as a model for genetic risk disclosure: implications for personal genomics.

J S Roberts, K D Christensen, R C Green

2 registry-linked trialsAbstract readReview
In one paragraph

Review in Clinical genetics, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to 2 registered trials, which are not on this map. Cited by 56 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
56citing papers in PubMed, 1 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.

NCT00462917 nacompletednot on this map

Risk Evaluation and Education for Alzheimer's Disease

TypeinterventionalSponsorBrigham and Women's HospitalRan2007 to 2009Enrolled290ConditionsAlzheimer DiseaseArmsPleiotropic info, in-person disclosure, AD-only info, in-person disclosure, Pleiotropic info, phone disclosure, AD-only info, phone disclosure
NCT01434667 nacompletednot on this map

Risk Evaluation and Education for Alzheimer's Disease (REVEAL) IV

TypeinterventionalSponsorBrigham and Women's HospitalRan2010 to 2014Enrolled146ConditionsMild Cognitive ImpairmentArmsAPOE genotype and Alzheimer's disease risk disclosure, Alzheimer's disease risk disclosure
3 · Its place in the literature

Who cites it

56 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Trial
  3. Trial
  4. A randomized controlled trial of disclosing genetic risk information for Alzheimer disease via telephone.Genetics in medicine : official journal of the American College of Medical Genetics · 2018
    Trial
  5. Trial
  6. Trial
  7. Article
  8. Article
  9. Article
  10. Counseling and disclosure practices in predictive Alzheimer's disease diagnostics: A scoping review.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024
    Article
  11. Health care utilization and behavior changes after workplace genetic testing at a large US health care system.Genetics in medicine : official journal of the American College of Medical Genetics · 2024
    Article
  12. Article
  13. "And Does That Necessarily Mean Absolutely Alzheimer's?" An Analysis of Questions Raised Following Amyloid PET Results Disclosure.The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry · 2024
    Article
  14. Article
  15. Review
  16. Review
  17. Review
  18. Article
  19. Article
  20. Review
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

3 authors.

J S RobertsDepartment of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, 48109, USA. jscottr@umich.edu
K D Christensen
R C Green

Funding

Risk Evaluation and Education for Alzheimer's Disease (REVEAL IV)R01HG002213 · NHGRI · BRIGHAM AND WOMEN'S HOSPITAL · PI GREEN, ROBERT C. · 1999 to 2012
$7.6M
Impact of Direct to Consumer Genetic TestingR01HG005092 · NHGRI · BRIGHAM AND WOMEN'S HOSPITAL · PI GREEN, ROBERT C., ROBERTS, SCOTT · 2010 to 2012
$1.1M
Disclosure of Genetic Risk for Alzheimer's DiseaseR03AG025914 · NIA · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI ROBERTS, SCOTT · 2006 to 2007
$149k
NHGRI NIH HHS R01 HG002213NHGRI NIH HHS R01 HG005092NHGRI NIH HHS R01 HG02213NIA NIH HHS R03 AG025914
6 · The paper itself

Abstract

Susceptibility testing for common, complex adult-onset diseases is projected to become more commonplace as the rapid pace of genomic discoveries continues, and evidence regarding the potential benefits and harms of such testing is needed to inform medical practice and health policy. Apolipoprotein E (APOE) testing for risk of Alzheimer's disease (AD) provides a paradigm in which to examine the process and impact of disclosing genetic susceptibility for a prevalent, severe and incurable neurological condition. This review summarizes findings from a series of multi-site randomized clinical trials examining psychological and behavioral responses to various methods of genetic risk assessment for AD using APOE disclosure. We discuss challenges involved in disease risk estimation and communication and the extent to which participants comprehend and perceive utility in their genetic risk information. Findings on the psychological impact of test results are presented (e.g. distress), along with data on participants' health behavior and insurance purchasing responses (e.g. long-term care). Finally, we report comparisons of the safety and efficacy of intensive genetic counseling approaches to briefer models that emphasize streamlined processes and educational materials. The implications of these findings for the emerging field of personal genomics are discussed, with directions identified for future research.

Indexed as

Genetic Predisposition to DiseaseAdultAlzheimer DiseaseApolipoproteins EFemaleGenetic CounselingGenetic TestingHumansInsurance, Long-Term CareLife StyleMaleMental RecallRandomized Controlled Trials as TopicRisk AssessmentApolipoproteins E

Identifiers

PMID21696382
PMCPMC3191239

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

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.