Evidence map›Paper›PMID 21749214›Full record

Trial reportGenetic testing and molecular biomarkers2011

Willingness to pay for genetic testing for Alzheimer's disease: a measure of personal utility.

Ilona M Kopits, Clara Chen, J Scott Roberts, Wendy Uhlmann, Robert C Green

Abstract readMulticenter StudyRandomized Controlled Trial
In one paragraph

Trial report in Genetic testing and molecular biomarkers, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 37 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
37citing 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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

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

  1. Pooled it
  2. Trial
  3. Trial
  4. Trial
  5. Article
  6. Article
  7. Apoe genotype knowledge and its impact on cognitive beliefs and performance.Neuropsychology, development, and cognition. Section B, Aging, neuropsychology and cognition · 2026
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  14. Private payer coverage policies for ApoE-e4 genetic testing.Genetics in medicine : official journal of the American College of Medical Genetics · 2021
    Article
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  17. Review
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  19. Article
  20. Integrating pharmacogenetic testing into primary care.Expert review of precision medicine and drug development · 2017
    Article
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

5 authors.

Ilona M KopitsBoston University School of Medicine, Boston, Massachusetts, USA.
Clara Chen
J Scott Roberts
Wendy Uhlmann
Robert 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
Characterizing Communicating Genetic Risk Alzheimer'sK24AG027841 · NIA · BRIGHAM AND WOMEN'S HOSPITAL · PI GREEN, ROBERT C. · 2006 to 2010
$914k
NHGRI NIH HHS R01 HG005092NHGRI NIH HHS R01-HG005092NHGRI NIH HHS R01-HG02213NIA NIH HHS K24 AG027841NIA NIH HHS K24-AG027841
6 · The paper itself

Abstract

backgroundThe increased availability of genetic tests for common, complex diseases, such as Alzheimer's disease (AD), raises questions about what people are willing to pay for these services.

methodsWe studied willingness-to-pay for genetic testing in a study of AD risk assessment that included APOE genotype disclosure among 276 first-degree relatives of persons with AD.

resultsSeventy-one percent reported that they would ask for such testing from their doctor if it were covered by health insurance, and 60% would ask for it even if it required self-pay. Forty-one percent were willing to pay more than $100 for testing, and more than half would have been willing to pay for the test out of pocket. Participants who learned that they were APOE ε4 positive and those who had higher education were less likely to want testing if covered by insurance, possibly to avoid discrimination.

conclusionThis is the first report to examine willingness to pay for susceptibility genetic testing in a sample of participants who had actually undergone such testing. These findings reveal that some participants find valuable personal utility in genetic risk information even when such information does not have proven clinical utility.

Indexed as

Attitude to HealthGenetic Predisposition to DiseaseHealth Care CostsAgedAlzheimer DiseaseApolipoproteins EDisclosureFamilyFemaleGenetic TestingHealth Care SurveysHumansMaleMiddle AgedRisk AssessmentApolipoproteins E

Identifiers

PMID21749214
PMCPMC3241735

What OpenQuestion holds

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Registered trials

None linked

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.