Evidence map›Paper›PMID 30879919›Full record

ArticleAmerican journal of kidney diseases : the official journal of the National Kidney Foundation2019

Ethical and Policy Considerations for Genomic Testing in Pediatric Research: The Path Toward Disclosing Individual Research Results.

Craig S Wong, Amy J Kogon, Bradley A Warady, Susan L Furth, John D Lantos, Benjamin S Wilfond

Registry-linked trialAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in American journal of kidney diseases : the official journal of the National Kidney Foundation, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT00327860 (Chronic Kidney Disease in Children Prospective Cohort Study), which is not on this map. Cited by 2 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
2citing 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.

NCT00327860 recruitingnot on this map

Chronic Kidney Disease in Children Prospective Cohort Study (CKiD)

TypeobservationalSponsorJohns Hopkins Bloomberg School of Public HealthRan2003 to 2028Enrolled1,300ConditionsChronic Kidney Disease
3 · Its place in the literature

Who cites it

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

  1. Pooled it
  2. Review
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

6 authors.

Craig S WongDivision of Nephrology, Department of Pediatrics, University of New Mexico Health Systems, Albuquerque, NM. Electronic address: cwong@salud.unm.edu.
Amy J KogonDivision of Nephrology, Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, PA.
Bradley A WaradyDivision of Nephrology, Department of Pediatrics, Children's Mercy Kansas City.
Susan L FurthDivision of Nephrology, Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, PA.
John D LantosDepartment of Pediatrics, Children's Mercy Hospital and Medical Center, Kansas City, MO.
Benjamin S WilfondTreuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, Department of Pediatrics, University of Washington School of Medicine, Seattle, WA.

Funding

Chronic Kidney Disease in Children Study (C-Kid)U01DK066174 · NIDDK · JOHNS HOPKINS UNIVERSITY · PI SUSAN L. FURTH · 2003 to 2026
$25.1M
CKiD Cardiovascular Testing Travel SupplementU01DK066143 · NIDDK · CHILDREN'S MERCY HOSP (KANSAS CITY, MO) · PI Bradley Alan Warady · 2003 to 2026
$24.2M
The Kidney Disease in Children Data Management and Analysis Center (KIDMAC)U01DK066116 · NIDDK · JOHNS HOPKINS UNIVERSITY · PI MUNOZ, ALVARO · 2003 to 2017
$17.9M
The Kidney Disease in Children Data Management and Analysis Center (KIDMAC)U24DK066116 · NIDDK · JOHNS HOPKINS UNIVERSITY · PI Derek K Ng · 2018 to 2026
$12.6M
Central Biochemistry Laboratory of the CKiD ConsortiumU01DK082194 · NIDDK · UNIVERSITY OF ROCHESTER · PI SCHWARTZ, GEORGE J · 2008 to 2017
$3.5M
Pediatric investigation for genetic factors linked to renal progression (PediGFR)R01DK082394 · NIDDK · UNIVERSITY OF NEW MEXICO HEALTH SCIS CTR · PI WONG, CRAIG S. · 2010 to 2013
$2.2M
NIDDK NIH HHS L40 DK065820NIDDK NIH HHS R01 DK082394NIDDK NIH HHS U01 DK066116NIDDK NIH HHS U01 DK066143NIDDK NIH HHS U01 DK066174NIDDK NIH HHS U01 DK082194NIDDK NIH HHS U24 DK066116
6 · The paper itself

Abstract

DNA is now commonly collected in clinical research either for immediate genomic analyses or stored for future studies. Many genomic studies were previously designed without awareness of the ethical issues that might arise regarding the disclosure of genomic test results. At the start of the Chronic Kidney Disease in Children (CKiD) Cohort Study in 2004, we did not foresee the advent of genomic technology or the associated ethical issues pertaining to genetic research in children. Recent genomic studies and ancillary proposals using genomic technology stimulated the CKiD investigators to reassess the current ethical and policy environment pertaining to genomic testing and results disclosure. We consider the issues pertaining to next generation sequencing and individual results disclosure that may guide current and future research practices.

Indexed as

Qualitative ResearchAdolescentChildChild, PreschoolFemaleForecastingGenetic TestingGenomicsHealth PolicyHigh-Throughput Nucleotide SequencingHumansInformed ConsentMalePediatricsPolicy MakingRenal Insufficiency, Chronicadolescentchildrenchronic kidney disease (CKD)disclosureDNA collectionethicsgenetic diseaseGenomicshuman subjects protectionsincidental findinginformed consentpediatricreview

Identifiers

PMID30879919
PMCPMC6548468

What OpenQuestion holds

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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.