Evidence map›Paper›PMID 24030434›Full record

ReviewGenetics in medicine : official journal of the American College of Medical Genetics2013

Ethical, legal, and social implications of incorporating genomic information into electronic health records.

Ribhi Hazin, Kyle B Brothers, Bradley A Malin, Barbara A Koenig, Saskia C Sanderson, Mark A Rothstein, Marc S Williams, Ellen W Clayton, Iftikhar J Kullo

Abstract readReview
In one paragraph

Review in Genetics in medicine : official journal of the American College of Medical Genetics, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 53 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
53citing papers in PubMed, 3 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

53 citing papers in PubMed, 3 syntheses or guidelines pooled it.

  1. Pooled it
  2. Pooled it
  3. Is there a duty to recontact in light of new genetic technologies? A systematic review of the literature.Genetics in medicine : official journal of the American College of Medical Genetics · 2015
    Pooled it
  4. Article
  5. Review
  6. Article
  7. Review
  8. Article
  9. Article
  10. A community jury study exploring the public acceptability of using risk stratification to determine eligibility for cancer screening.Health expectations : an international journal of public participation in health care and health policy · 2022
    Article
  11. Article
  12. Acceptability and potential impact on uptake of using different risk stratification approaches to determine eligibility for screening: A population-based survey.Health expectations : an international journal of public participation in health care and health policy · 2021
    Article
  13. Review
  14. Article
  15. Preferences for Accessing Electronic Health Records for Research Purposes: Views of Parents Who Have a Child With a Known or Suspected Genetic Condition.Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research · 2020
    Article
  16. Article
  17. Article
  18. How Can Artificial Intelligence Make Medicine More Preemptive?Journal of medical Internet research · 2020
    Article
  19. Review
  20. 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

9 authors.

Ribhi HazinDepartment of Internal Medicine, Wayne State University School of Medicine, Detroit, Michigan, USA.
Kyle B Brothers
Bradley A Malin
Barbara A Koenig
Saskia C Sanderson
Mark A Rothstein
Marc S Williams
Ellen W Clayton
Iftikhar J Kullo

Funding

Mayo Clinic Center for Translational Science ActivitiesUL1TR000135 · NCATS · MAYO CLINIC ROCHESTER · PI KHOSLA, SUNDEEP · 2012 to 2015
$41.2M
Genomic Basis of Susceptibility to COVID-19 Infection and its ComplicationsU01HG006379 · NHGRI · MAYO CLINIC ROCHESTER · PI Richard R. Sharp · 2011 to 2026
$16.5M
Genomic Diagnosis in Children with Developmental DelayUM1HG007301 · NHGRI · HUDSON-ALPHA INSTITUTE FOR BIOTECHNOLOGY · PI COOPER, GREGORY MICHAEL, MYERS, RICHARD M · 2013 to 2016
$7.5M
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
Vanderbilt Genome Electronic Records ProjectU01HG006378 · NHGRI · VANDERBILT UNIVERSITY · PI RODEN, DAN M · 2011 to 2014
$4.0M
Disclosing Genomic Incidental Findings in a Cancer Biobank: An ELSI ExperimentR01CA154517 · NCI · MAYO CLINIC ROCHESTER · PI KOENIG, BARBARA A., PETERSEN, GLORIA M. · 2011 to 2015
$2.7M
A Risk Management Framework for Identifiability in Genomics ResearchR01HG006844 · NHGRI · VANDERBILT UNIVERSITY MEDICAL CENTER · PI MALIN, BRADLEY A. · 2012 to 2019
$2.4M
Center for Transdisciplinary ELSI Research in Translational GenomicsP20HG007243 · NHGRI · KAISER FOUNDATION RESEARCH INSTITUTE · PI HARRIS-WAI, JULIE NOEL, KOENIG, BARBARA A. · 2013 to 2016
$958k
Returning Research Results of Pediatric Genomic Research to ParticipantsR21HG006612 · NHGRI · VANDERBILT UNIVERSITY · PI CLAYTON, ELLEN WRIGHT · 2011 to 2012
$389k
NCATS NIH HHS UL1 TR000135NCI NIH HHS R01 CA154517NCI NIH HHS R01CA154517NHGRI NIH HHS 1R21HG00612NHGRI NIH HHS P20 HG007243NHGRI NIH HHS R01 HG006844NHGRI NIH HHS R01HG006844NHGRI NIH HHS R21 HG006612NHGRI NIH HHS U01 HG006378NHGRI NIH HHS U01HG006378NHGRI NIH HHS U01 HG006379NHGRI NIH HHS U01HG006379NHGRI NIH HHS U01 HG006380NHGRI NIH HHS U01HG006380NHGRI NIH HHS U01 HG006382NHGRI NIH HHS U01HG006382-01NHGRI NIH HHS U01 HG006385NHGRI NIH HHS U01HG006385NHGRI NIH HHS UM1 HG007301
6 · The paper itself

Abstract

The inclusion of genomic data in the electronic health record raises important ethical, legal, and social issues. In this article, we highlight these challenges and discuss potential solutions. We provide a brief background on the current state of electronic health records in the context of genomic medicine, discuss the importance of equitable access to genome-enabled electronic health records, and consider the potential use of electronic health records for improving genomic literacy in patients and providers. We highlight the importance of privacy, access, and security, and of determining which genomic information is included in the electronic health record. Finally, we discuss the challenges of reporting incidental findings, storing and reinterpreting genomic data, and nondocumentation and duty to warn family members at potential genetic risk.

Indexed as

Computer SecurityConfidentialityDecision Support Systems, ClinicalElectronic Health RecordsGenetic PrivacyGenomicsHealth LiteracyHealth Records, PersonalHumansIncidental FindingsPatient Access to RecordsPrecision Medicine

Identifiers

PMID24030434
PMCPMC3926430

What OpenQuestion holds

Textmetadata
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Read underepoch 390

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.