Evidence map›Paper›PMID 26186621›Full record

ArticlePloS one2015

Characterizing Participants in the ClinSeq Genome Sequencing Cohort as Early Adopters of a New Health Technology.

Katie L Lewis, Paul K J Han, Gillian W Hooker, William M P Klein, Leslie G Biesecker, Barbara B Biesecker

Registry-linked trialAbstract read
In one paragraph

Article in PloS one, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06441981 (Closing the Gap in Public Perception and Policy for SARS-CoV-2 Whole Genome Sequencing and Genomics for All), which is not on this map. Cited by 35 papers.

0numbers the graph read from it
0cells of the map it votes in
35citing 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.

NCT06441981 naunknown statusnot on this mapstarted 2023, after this paper: background citation

Closing the Gap in Public Perception and Policy for SARS-CoV-2 Whole Genome Sequencing and Genomics for All

TypeinterventionalSponsorIndonesia UniversityRan2023 to 2024Enrolled800ConditionsKnowledge, Attitudes, PracticeArmsEducation
3 · Its place in the literature

Who cites it

35 citing papers in PubMed.

  1. Trial
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  5. Article
  6. Elective genomic sequencing for adults in research, clinical and commercial contexts.medRxiv : the preprint server for health sciences · 2026
    Article
  7. The ACMG SF v3.0 gene list increases returnable variant detection by 22% when compared with v2.0 in the ClinSeq cohort.Genetics in medicine : official journal of the American College of Medical Genetics · 2022
    Article
  8. Article
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  16. Review
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4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

6 authors.

Katie L LewisMedical Genomics and Metabolic Genetics Branch, National Human Genome Research Institute, Bethesda, Maryland, United States of America.
Paul K J HanMaine Medical Center Research Institute, Center for Outcomes Research and Evaluation, Scarborough, Maine, United States of America.
Gillian W HookerSocial and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, Maryland, United States of America; NextGxDx, Franklin, Tennessee, United States of America.
William M P KleinDivision of Cancer Control and Population Sciences, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, United States of America.
Leslie G BieseckerMedical Genomics and Metabolic Genetics Branch, National Human Genome Research Institute, Bethesda, Maryland, United States of America.
Barbara B BieseckerMedical Genomics and Metabolic Genetics Branch, National Human Genome Research Institute, Bethesda, Maryland, United States of America; Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, Maryland, United States of America.

Funding

Genomic Ascertainment - Clinical and Behavioral AspectsZIAHG200387 · NHGRI · NATIONAL HUMAN GENOME RESEARCH INSTITUTE · PI BIESECKER, LESLIE · 2013 to 2025
$15.5M
Interventions in Genetic CounselingZIAHG200317 · NHGRI · NATIONAL HUMAN GENOME RESEARCH INSTITUTE · PI BIESECKER, BARBARA BOWLES · 2009 to 2018
$7.6M
Intramural NIH HHS
6 · The paper itself

Abstract

Genome sequencing is a novel clinical tool that has the potential to identify genetic origins of disease. However, the complexities of this new technology are significant and little is known about its integration into clinical care, and its potential adoption by patients. Expectations of its promise for personalized medicine are high and it is important to properly match expectations to the realities of the test. The NIH ClinSeq cohort study pilots the integration of genome sequencing into clinical research and care to assess the technical, medical and socio-behavioral aspects of implementing this technology. Over 950 adults ages 45-65 have been enrolled and clinically phenotyped. As an initial study, we describe the personality traits of ClinSeq participants, and explore how these traits compare to those that characterize early adopters of other new technologies. Our analysis was conducted on responses from 630 members of the cohort who completed a baseline survey on health cognitions, affect, health-related behaviors and personality traits, prior to receipt of any genome sequencing results. The majority of participants were white (90.5%), had at least a college degree (86.5%), and had at least one biological child (74.6%). Members of this ClinSeq sample were found to be high in dispositional optimism and resilience. Their high SES paralleled that of other early adopters of new technology. These attributes may contribute to participants' expectations for favorable outcomes and willingness to take higher risks when compared to the general population. These characteristics may distinguish those who are most likely to pursue genome sequencing and be indicative of their psychological resources to manage returned results.

Indexed as

Genome, HumanAgedBiomedical TechnologyCohort StudiesDemographyFemaleGenomicsHumansMaleMiddle AgedPersonalitySequence Analysis, DNA

Identifiers

PMID26186621
PMCPMC4506048

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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.