Evidence map›Paper›PMID 26371191›Full record

ArticlePediatrics2015

Professionally Responsible Disclosure of Genomic Sequencing Results in Pediatric Practice.

Laurence B McCullough, Kyle B Brothers, Wendy K Chung, Steven Joffe, Barbara A Koenig, Benjamin Wilfond, Joon-Ho Yu, Clinical Sequencing Exploratory Research (CSER) Consortium Pediatrics Working Group

Abstract read
In one paragraph

Article in Pediatrics, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
18citing papers in PubMed, 1 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

18 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Trial
  3. Article
  4. Review
  5. Article
  6. Article
  7. Genomic tools for health: Secondary findings as findings to be shared.Genetics in medicine : official journal of the American College of Medical Genetics · 2022
    Article
  8. Review
  9. Rethinking the "open future" argument against predictive genetic testing of children.Genetics in medicine : official journal of the American College of Medical Genetics · 2019
    Article
  10. Article
  11. Ethical and Policy Considerations for Genomic Testing in Pediatric Research: The Path Toward Disclosing Individual Research Results.American journal of kidney diseases : the official journal of the National Kidney Foundation · 2019
    Article
  12. Giving adolescents a voice: the types of genetic information adolescents choose to learn and why.Genetics in medicine : official journal of the American College of Medical Genetics · 2019
    Article
  13. Ethics in genetic counselling.Journal of community genetics · 2019
    Review
  14. Article
  15. Article
  16. Article
  17. Article
  18. Article
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

8 authors.

Laurence B McCulloughCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas; laurence.mccullough@bcm.edu.
Kyle B BrothersDepartment of Pediatrics, University of Louisville, Louisville, Kentucky;
Wendy K ChungDepartment of Pediatrics, Columbia University, New York, New York;
Steven JoffeDepartment of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania;
Barbara A KoenigDepartment of Social and Behavioral Sciences University of California at San Francisco, San Francisco, California; and.
Benjamin WilfondDepartment of Pediatrics, University of Washington, Seattle, Washington.
Joon-Ho YuDepartment of Pediatrics, University of Washington, Seattle, Washington.
Clinical Sequencing Exploratory Research (CSER) Consortium Pediatrics Working Group

Funding

Measuring Perceptions of Utility of Clinical Genome Sequencing: Instrument Testing and ValidationU01HG006485 · NHGRI · BAYLOR COLLEGE OF MEDICINE · PI MCGUIRE, AMY L, PARSONS, DONALD W. · 2012 to 2021
$22.1M
Exome sequencing in Diverse Populations in Colorado & OregonU01HG007292 · NHGRI · KAISER FOUNDATION RESEARCH INSTITUTE · PI LEO, MICHAEL C, WILFOND, BENJAMIN SIMON · 2017 to 2021
$15.7M
South-seq: DNA sequencing for newborn nurseries in the SouthU01HG007301 · NHGRI · HUDSON-ALPHA INSTITUTE FOR BIOTECHNOLOGY · PI BARSH, GREGORY STEFAN, COOPER, GREGORY MICHAEL · 2017 to 2021
$11.9M
Clinical Implementation of Carrier Testing using NGSUM1HG007292 · NHGRI · KAISER FOUNDATION RESEARCH INSTITUTE · PI GODDARD, KATRINA A., WILFOND, BENJAMIN SIMON · 2013 to 2016
$8.2M
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
The Use of Whole-Exome Sequencing to Guide the Care of Cancer PatientsU01HG006492 · NHGRI · DANA-FARBER CANCER INST · PI JANNE, PASI A, VAN ALLEN, ELIEZER M · 2012 to 2016
$7.3M
Sequencing of Newborn Blood Spot DNA to Improve and Expand Newborn ScreeningU19HD077627 · NICHD · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI KOENIG, BARBARA A., KWOK, PUI-YAN · 2013 to 2018
$6.6M
CSER RoRC Centralized Support Coordinating CenterU01HG007307 · NHGRI · UNIVERSITY OF WASHINGTON · PI BURKE, WYLIE G., JARVIK, GAIL PAIRITZ · 2013 to 2016
$3.6M
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
Innovative Approaches to Returning Results in Exome and Genome Sequencing StudiesR01HG006618 · NHGRI · SEATTLE CHILDREN'S HOSPITAL · PI TABOR, HOLLY K · 2011 to 2013
$2.2M
Impact of return of incidental genetic test results to research participants in tR01HG006600 · NHGRI · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI CHUNG, WENDY K, PHELAN, JO C · 2011 to 2013
$2.1M
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
NCI NIH HHS R01 CA154517NHGRI NIH HHS P20 HG007243NHGRI NIH HHS PI U01 HG007307NHGRI NIH HHS R01 HG006600NHGRI NIH HHS R01 HG006618NHGRI NIH HHS U01 HG0006485NHGRI NIH HHS U01 HG006485NHGRI NIH HHS U01 HG006492NHGRI NIH HHS U01 HG006618NHGRI NIH HHS U01 HG007292NHGRI NIH HHS U01 HG007301NHGRI NIH HHS U01 HG007307NICHD NIH HHS U19 HD077627
6 · The paper itself

Abstract

Genomic sequencing is being rapidly introduced into pediatric clinical practice. The results of sequencing are distinctive for their complexity and subsequent challenges of interpretation for generalist and specialist pediatricians, parents, and patients. Pediatricians therefore need to prepare for the professionally responsible disclosure of sequencing results to parents and patients and guidance of parents and patients in the interpretation and use of these results, including managing uncertain data. This article provides an ethical framework to guide and evaluate the professionally responsible disclosure of the results of genomic sequencing in pediatric practice. The ethical framework comprises 3 core concepts of pediatric ethics: the best interests of the child standard, parental surrogate decision-making, and pediatric assent. When recommending sequencing, pediatricians should explain the nature of the proposed test, its scope and complexity, the categories of results, and the concept of a secondary or incidental finding. Pediatricians should obtain the informed permission of parents and the assent of mature adolescents about the scope of sequencing to be performed and the return of results.

Indexed as

AdolescentChildChild WelfareGenomicsHumansInformed Consent By MinorsParental ConsentPediatricsSequence Analysis, DNATruth Disclosure

Identifiers

PMID26371191
PMCPMC4586726

What OpenQuestion holds

Textmetadata
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.