Evidence map›Paper›PMID 31268575›Full record

ArticleThe Hastings Center report2019

Assessing the Psychological Impact of Genetic Susceptibility Testing.

J Scott Roberts

Abstract read
In one paragraph

Article in The Hastings Center report, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.

0numbers the graph read from it
0cells of the map it votes in
15citing papers in PubMed
–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

15 citing papers in PubMed.

  1. 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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  9. Editorial: Implications of Emerging Uses of Genetic Testing for Alzheimer's Disease.The journal of prevention of Alzheimer's disease · 2023
    Article
  10. Article
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  12. Polygenic risk scores: improving the prediction of future disease or added complexity?The British journal of general practice : the journal of the Royal College of General Practitioners · 2022
    Article
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  14. Review
  15. Article
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

1 author.

J Scott Roberts

Funding

Michigan Alzheimer's Disease Core CenterP30AG053760 · NIA · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI ALBIN, ROGER L · 2016 to 2020
$10.1M
Impact of Disclosing Amyloid Imaging Results to Cognitively Normal IndividualsRF1AG047866 · NIA · BRIGHAM AND WOMEN'S HOSPITAL · PI GREEN, ROBERT C., KARLAWISH, JASON H · 2015 to 2019
$6.0M
NIA NIH HHS P30 AG053760NIA NIH HHS RF1 AG047866
6 · The paper itself

Abstract

The expanded use of genetic testing raises key ethical and policy questions about possible benefits and harms for those receiving disease-risk information. As predictive testing for Huntington's was initiated in a clinical setting, survey research posing hypothetical test scenarios suggested that the vast majority of at-risk relatives wanted to know whether they carried a disease-causing mutation. However, only a small minority ultimately availed themselves of this opportunity. Many at-risk individuals concluded that a positive test result would be too psychologically overwhelming. A substantial literature suggests that individuals are often more resilient than anticipated in coping with many different health-related stresses. Much of my own work in the field has been through the Risk Evaluation & Education for Alzheimer's Disease study (REVEAL), a series of randomized clinical trials assessing the impact of genetic susceptibility testing on asymptomatic individuals at risk for Alzheimer's disease. Our experience in developing and implementing four successive, multisite trials provides some potentially useful lessons for the field. More people will be asking for their personal genetic information. Better understanding will help us decide when access is appropriate and how best to disclose results in a manner that supports adjustment to test findings and promotes use of genetic information to improve human health.

Indexed as

Adaptation, PsychologicalDisclosureGenetic CounselingGenetic PrivacyGenetic TestingHumansStress, Psychological

Identifiers

PMID31268575
PMCPMC7026861

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.