Evidence map›Paper›PMID 28190457›Full record

Trial reportAmerican journal of human genetics2017

Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.

Saskia C Sanderson, Kyle B Brothers, Nathaniel D Mercaldo, Ellen Wright Clayton, Armand H Matheny Antommaria, Sharon A Aufox, Murray H Brilliant, Diego Campos, David S Carrell, John Connolly and 19 more

Registry-linked trialAbstract readMulticenter StudyRandomized Controlled Trial
PubMed Full text at PMC Publisher
In one paragraph

Trial report in American journal of human genetics, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03394859 (Electronic Medical Records and Genomics), which is not on this map. Cited by 146 papers, 7 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
146citing papers in PubMed, 7 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.

NCT03394859 completednot on this map

Electronic Medical Records and Genomics (eMERGE) Phase III

TypeobservationalSponsorVanderbilt University Medical CenterRan2015 to 2020Enrolled25,380ConditionsCardiac Disease, Cancer, Hypercholesterolemia, Diabetes
3 · Its place in the literature

Who cites it

146 citing papers in PubMed, 7 syntheses or guidelines pooled it.

  1. Pooled it
  2. Pooled it
  3. Pooled it
  4. Pooled it
  5. Pooled it
  6. Pooled it
  7. Pooled it
  8. Expanding the boundaries of previously obtained informed consent in research: Views from participants in the Personalised Risk-based Mammascreening study.Health expectations : an international journal of public participation in health care and health policy · 2023
    Trial
  9. Trial
  10. Trial
  11. Trial
  12. Trial
  13. Trial
  14. Enhancing Autonomy in Biobank Decisions: Too Much of a Good Thing?Journal of empirical research on human research ethics : JERHRE · 2018
    Trial
  15. Trial
  16. Article
  17. Article
  18. Article
  19. Article
  20. Article

86 more citing papers are in PubMed but not listed here.

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

29 authors.

Saskia C SandersonDepartment of Behavioural Science and Health, University College London, London WC1E 6BT, UK; Great Ormond Street Hospital, London WC1N 3JH, UK; Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai, New York, NY 10029, USA. Electronic address: saskia.sanderson@ucl.ac.uk.
Kyle B BrothersDepartment of Pediatrics, University of Louisville, Louisville, KY 40202, USA. Electronic address: kyle.brothers@louisville.edu.
Nathaniel D MercaldoDepartment of Biostatistics, Vanderbilt University, Nashville, TN 37203, USA.
Ellen Wright ClaytonCenter for Biomedical Ethics and Society, Vanderbilt University, Nashville, TN 37203, USA.
Armand H Matheny AntommariaEthics Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH 45229, USA.
Sharon A AufoxCenter for Genetic Medicine, Northwestern University, Chicago, IL 60611, USA.
Murray H BrilliantCenter for Human Genetics, Marshfield Clinic Research Foundation, Marshfield, WI 54449, USA.
Diego CamposDepartment of Biomedical and Health Informatics, Children's Hospital of Philadelphia, Philadelphia, PA 19104, USA.
David S CarrellGroup Health Research Institute, Seattle, WA 98101, USA.
John ConnollyCenter for Applied Genomics, Children's Hospital of Philadelphia, Philadelphia, PA 19104, USA.
Pat ConwayEssentia Institute of Rural Health, Duluth, MN 55805, USA.
Stephanie M FullertonDepartment of Bioethics and Humanities, University of Washington, Seattle, WA 98195, USA.
Nanibaa' A GarrisonTreuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, WA 98101, USA; Department of Pediatrics, Division of Bioethics, University of Washington, Seattle, WA 98101, USA.
Carol R HorowitzDepartment of Population Health Science and Policy, Icahn School of Medicine at Mount Sinai, New York, NY 10029, USA.
Gail P JarvikDepartment of Genome Sciences, University of Washington, Seattle, WA 98195, USA.
David KaufmanDivision of Genomics and Society, National Human Genome Research Institute, Bethesda, MD 20892, USA.
Terrie E KitchnerCenter for Human Genetics, Marshfield Clinic Research Foundation, Marshfield, WI 54449, USA.
Rongling LiDivision of Genomic Medicine, National Human Genome Research Institute, Bethesda, MD 20892, USA.
Evette J LudmanGroup Health Research Institute, Seattle, WA 98101, USA.
Catherine A McCartyEssentia Institute of Rural Health, Duluth, MN 55805, USA.
Jennifer B McCormickBiomedical Ethics Program, Mayo Clinic, Rochester, MN 55905, USA.
Valerie D McManusBiomedical Informatics Research Center, Marshfield Clinic Research Foundation, Marshfield, WI 54449, USA.
Melanie F MyersGenetic Counseling Graduate Program, Cincinnati Children's Hospital Medical Center and University of Cincinnati, Cincinnati, OH 45229, USA.
Aaron ScrolGroup Health Research Institute, Seattle, WA 98101, USA.
Janet L WilliamsGenomic Medicine Institute, Geisinger Health System, Danville, PA 17822, USA.
Martha J ShrubsoleVanderbilt Epidemiology Center, Vanderbilt University Medical Center, Nashville, TN 37203, USA.
Jonathan S SchildcroutDepartment of Biostatistics, Vanderbilt University, Nashville, TN 37203, USA.
Maureen E SmithCenter for Genetic Medicine, Northwestern University, Chicago, IL 60611, USA.
Ingrid A HolmDivision of Genetics and Genomics and the Manton Center for Orphan Diseases Research, Boston Children's Hospital, Boston, MA 02115, USA.

Funding

Northwestern University Clinical and Translational Science Institute (NUCATS)UL1TR001422 · NCATS · NORTHWESTERN UNIVERSITY AT CHICAGO · PI D'AQUILA, RICHARD · 2015 to 2023
$56.8M
Genomic Basis of Susceptibility to COVID-19 Infection and its ComplicationsU01HG006379 · NHGRI · MAYO CLINIC ROCHESTER · PI Richard R. Sharp · 2011 to 2026
$16.5M
Variation, Function, and Disease Supplement ProgramU01HG008657 · NHGRI · UNIVERSITY OF WASHINGTON · PI David Russell Crosslin, Gail Pairitz Jarvik · 2015 to 2026
$13.4M
The Electronic Medical Records and Genomics (eMERGE) Network Phase III Coordinating Center (U01)U01HG008701 · NHGRI · VANDERBILT UNIVERSITY MEDICAL CENTER · PI PETERSON, JOSEPH F. · 2015 to 2019
$7.1M
Genomic Medicine Pilot For Hypertension And Kidney Disease In Primary CareU01HG007278 · NHGRI · ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI · PI HOROWITZ, CAROL R · 2013 to 2018
$5.7M
eMERGE Coordinating Center - Administrative SupplementU01HG006385 · NHGRI · VANDERBILT UNIVERSITY · PI HARRIS, PAUL A. · 2011 to 2014
$5.4M
Biorepository for Genomic Medicine in diverse CommunitiesU01HG006380 · NHGRI · ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI · PI BOTTINGER, ERWIN P. · 2011 to 2015
$4.5M
Geisinger eGenonic Medicine (GeM) ProgramU01HG006382 · NHGRI · GEISINGER CLINIC · PI CAREY, DAVID J., WILLIAMS, MARC S. · 2011 to 2014
$4.3M
Better Outcomes for Children: Promoting Excellence in Healthcare Genomics to Inform PolicyU01HG008666 · NHGRI · CINCINNATI CHILDRENS HOSP MED CTR · PI HARLEY, JOHN BARKER · 2015 to 2019
$4.2M
A Personalized Genomic Medicine Pilot Program Using the NJgene eMERGE ExperienceU01HG006388 · NHGRI · NORTHWESTERN UNIVERSITY AT CHICAGO · PI CHISHOLM, REX L, SMITH, MAUREEN E · 2011 to 2014
$4.1M
Genetic Discovery and Application in a Clinical Setting Continuing a PartnershipU01HG006375 · NHGRI · KAISER FOUNDATION HEALTH PLAN OF WASHINGTON · PI JARVIK, GAIL PAIRITZ, LARSON, ERIC B · 2011 to 2014
$4.1M
Genomic Medicine at Northwestern: Discovery and ImplementationU01HG008673 · NHGRI · NORTHWESTERN UNIVERSITY AT CHICAGO · PI CHISHOLM, REX L, SMITH, MAUREEN E · 2015 to 2019
$4.1M
NCATS NIH HHS UL1 TR001422NHGRI NIH HHS U01 HG006375NHGRI NIH HHS U01 HG006378NHGRI NIH HHS U01 HG006379NHGRI NIH HHS U01 HG006380NHGRI NIH HHS U01 HG006382NHGRI NIH HHS U01 HG006385NHGRI NIH HHS U01 HG006388NHGRI NIH HHS U01 HG006830NHGRI NIH HHS U01 HG007278NHGRI NIH HHS U01 HG008657NHGRI NIH HHS U01 HG008666NHGRI NIH HHS U01 HG008673NHGRI NIH HHS U01 HG008701
6 · The paper itself

Abstract

Individuals participating in biobanks and other large research projects are increasingly asked to provide broad consent for open-ended research use and widespread sharing of their biosamples and data. We assessed willingness to participate in a biobank using different consent and data sharing models, hypothesizing that willingness would be higher under more restrictive scenarios. Perceived benefits, concerns, and information needs were also assessed. In this experimental survey, individuals from 11 US healthcare systems in the Electronic Medical Records and Genomics (eMERGE) Network were randomly allocated to one of three hypothetical scenarios: tiered consent and controlled data sharing; broad consent and controlled data sharing; or broad consent and open data sharing. Of 82,328 eligible individuals, exactly 13,000 (15.8%) completed the survey. Overall, 66% (95% CI: 63%-69%) of population-weighted respondents stated they would be willing to participate in a biobank; willingness and attitudes did not differ between respondents in the three scenarios. Willingness to participate was associated with self-identified white race, higher educational attainment, lower religiosity, perceiving more research benefits, fewer concerns, and fewer information needs. Most (86%, CI: 84%-87%) participants would want to know what would happen if a researcher misused their health information; fewer (51%, CI: 47%-55%) would worry about their privacy. The concern that the use of broad consent and open data sharing could adversely affect participant recruitment is not supported by these findings. Addressing potential participants' concerns and information needs and building trust and relationships with communities may increase acceptance of broad consent and wide data sharing in biobank research.

Indexed as

Public OpinionAdolescentAdultAgedBiological Specimen BanksBiomedical ResearchElectronic Health RecordsFemaleGenome, HumanGenomicsHumansInformation DisseminationInformed ConsentMaleMiddle AgedPrivacybiobank researchbiorepository researchbroad consentdata sharinginformed consenttiered consent

Identifiers

PMID28190457
PMCPMC5339111

What OpenQuestion holds

Textmetadata
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.