Evidence map›Paper›PMID 24416062›Full record

ArticlePersonalized medicine2013

Patient awareness and approval for an opt-out genomic biorepository.

Kyle B Brothers, Mathew J Westbrook, M Frances Wright, John A Myers, Daniel R Morrison, Jennifer L Madison, Jill M Pulley, Ellen Wright Clayton

Registry-linked trialOpen access · greenAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Personalized medicine, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05277116 (The Electronic Medical Records and GEnomics), which is not on this map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
2.3field-weighted citation impact, top 12% of its field
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.

NCT05277116 naactive not recruitingnot on this mapstarted 2022, after this paper: background citation

The Electronic Medical Records and GEnomics (eMERGE) Network Genomic Risk Assessment

TypeinterventionalSponsorVanderbilt University Medical CenterRan2022 to 2030Enrolled26,877ConditionsGenetic DiseaseArmsGenome Informed Risk Assessment (GIRA) report
3 · Its place in the literature

Who cites it

5 citing papers in PubMed, 13 citations in OpenAlex.

  1. Article
  2. Article
  3. A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States.Genetics in medicine : official journal of the American College of Medical Genetics · 2016
    Article
  4. The MICHR Genomic DNA BioLibrary: An Empirical Study of the Ethics of Biorepository Development.Journal of empirical research on human research ethics : JERHRE · 2015
    Article
  5. Ethical and practical challenges to studying patients who opt out of large-scale biorepository research.Journal of the American Medical Informatics Association : JAMIA · 2013
    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

8 authors at 3 institutions in 1 country.

Kyle B BrothersCenter for Biomedical Ethics & Society, Vanderbilt University, Nashville, TN, USA ; Department of Pediatrics, Vanderbilt University & the Monroe Carell Jr.Children's Hospital at Vanderbilt, Nashville, TN, USA ; Kosair Charites Pediatric Clinical, Research Unit, Department of Pediatrics, University of Louisville, School of Medicine, Louisville, KY, USA.
Mathew J WestbrookCenter for Biomedical Ethics & Society, Vanderbilt University, Nashville, TN, USA.
M Frances WrightCenter for Biomedical Ethics & Society, Vanderbilt University, Nashville, TN, USA.
John A MyersChild Health Services Research Unit, Department of Pediatrics, University of Louisville School of Medicine, Louisville, KY, USA.
Daniel R MorrisonCenter for Biomedical Ethics & Society, Vanderbilt University, Nashville, TN, USA ; Social Science Division, Pepperdine University, Malibu, CA, USA.
Jennifer L MadisonOffice of Research, Vanderbilt University School of Medicine, Nashville, TN, USA.
Jill M PulleyOffice of Research, Vanderbilt University School of Medicine, Nashville, TN, USA.
Ellen Wright ClaytonCenter for Biomedical Ethics & Society, Vanderbilt University, Nashville, TN, USA ; Department of Pediatrics, Vanderbilt University & the Monroe Carell Jr.Children's Hospital at Vanderbilt, Nashville, TN, USA.
Vanderbilt University · USMonroe Carell Jr. Children's Hospital · USUniversity of Louisville · US

Funding

The Vanderbilt Institute for Clinical and Translational Research (VICTR)UL1TR000445 · NCATS · VANDERBILT UNIVERSITY MEDICAL CENTER · PI BERNARD, GORDON RAPHAEL · 2012 to 2016
$41.4M
Vanderbilt Genome Electronic Records ProjectU01HG006378 · NHGRI · VANDERBILT UNIVERSITY · PI RODEN, DAN M · 2011 to 2014
$4.0M
NCATS NIH HHS UL1 TR000445NHGRI NIH HHS U01 HG006378
6 · The paper itself

Abstract

aimIn this study, we sought to assess patient awareness and perceptions of an opt-out biorepository. MATERIALS &

methodsWe conducted exit interviews with adult patients and parents of pediatric patients having their blood drawn as part of their clinical care at Vanderbilt University Medical Center (TN, USA).

results32.9% of all patients and parents of pediatric patients report having heard of the opt-out biorepository, while 92.4% approve of this research effort based on a brief description. Awareness that leftover blood could be used for research increased among adult patients during the study period, from 34.3 to 50.0%.

conclusionThese findings will inform ongoing assessments of the suitability of opt-out and opt-in methods as alternatives to written informed consent for inclusion in a biorepository.

Indexed as

exit interviewshuman nonsubjects biorepositoryiorepositoryopt-out researchresearch ethics

Identifiers

PMID24416062
PMCPMC3882901
OpenAlexW2092368949

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.