Evidence map›Paper›PMID 26479565›Full record

ArticleThe Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics2015

Disclosing Secondary Findings from Pediatric Sequencing to Families: Considering the "Benefit to Families".

Benjamin S Wilfond, Conrad V Fernandez, Robert C Green

Abstract read
In one paragraph

Article in The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 42 papers.

0numbers the graph read from it
0cells of the map it votes in
42citing 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.

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

42 citing papers in PubMed.

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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

3 authors.

Benjamin S WilfondDirector of the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital; Professor and Chief of the Division of Bioethics; Professor, Pulmonary and Sleep Medicine, Department of Pediatrics; and Adjunct Professor, Department of Bioethics and Humanities, at the University of Washington School of Medicine. He is Immediate Past President of the Association of Bioethics Program Directors, Chair of the Clinical Research Ethics Collaborative, and Co-Chair of the Pediatric Working Group for the NHGRI/NCI Clinical Sequencing Exploratory Research (CSER) Consortium. His scholarship focuses on ethical issues related to genetics, pediatrics, research, and their interrelationships.
Conrad V FernandezChief of the Division of Pediatric Hematology/Oncology at IWK Health Centre and Professor of Pediatrics and Bioethics at Dalhousie University. He obtained his Hon. B.Sc. at the University of Western Ontario, his medical degree at McMaster University, specialist certification in Pediatrics as a Fellow of the Royal College of Physicians and Surgeons of Canada at Dalhousie University, and completed specialty training in Pediatric Hematology/Oncology at the University of British Columbia.
Robert C GreenDirects the Genomes-2People Research Program and Translational Genomics and Health Outcomes within the Division of Genetics, Department of Medicine, Brigham and Women's Hospital, with appointments at the Broad Institute and Harvard Medical School. He is also Associate Director for Research, Partners HealthCare Personalized Medicine.

Funding

Genome Sequence-Based Screening for Childhood Risk and Newborn IllnessU19HD077671 · NICHD · BRIGHAM AND WOMEN'S HOSPITAL · PI BEGGS, ALAN H., GREEN, ROBERT C. · 2013 to 2018
$6.1M
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
NCI NIH HHS 1R01CA154517NCI NIH HHS R01 CA154517NICHD NIH HHS U19 HD077671
6 · The paper itself

Abstract

Secondary findings for adult-onset diseases in pediatric clinical sequencing can benefit parents or other family members. In the absence of data showing harm, it is ethically reasonable for parents to request such information, because in other types of medical decision-making, they are often given discretion unless their decisions clearly harm the child. Some parents might not want this information because it could distract them from focusing on the child's underlying condition that prompted sequencing. Collecting family impact data may improve future policy determinations.

Indexed as

FamilySequence AnalysisAdultChildCounselingDecision MakingDisclosureGenetic TestingHumans

Identifiers

PMID26479565
PMCPMC4617182

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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.