Evidence map›Paper›PMID 26479562›Full record

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

Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject.

Sarah Scollon, Katie Bergstrom, Laurence B McCullough, Amy L McGuire, Stephanie Gutierrez, Robin Kerstein, D Williams Parsons, Sharon E Plon

Abstract read
PubMed Full text at PMC Publisher
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 4 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
4citing 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

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

  1. Pooled it
  2. Using genomics to define pediatric blood cancers and inform practice.Hematology. American Society of Hematology. Education Program · 2018
    Review
  3. Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2018
    Article
  4. 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

8 authors.

Sarah ScollonBoard-certified genetic counselor at Baylor College of Medicine. She received her M.S. in Genetic Counseling from University of Michigan, Ann Arbor, MI.
Katie BergstromBoard certified genetic counselor at Baylor College of Medicine. She received her M.S. in Genetic Counseling from the University of Utah in Salt Lake City, UT.
Laurence B McCulloughProfessor of Medicine and Medical Ethics and the Associate Director for Education and holder of the Dalton Tomlin Chair in Medical Ethics and Health Policy in the Center for Medical Ethics and Health Policy, Baylor College of Medicine. He received his Ph.D. from University of Texas, Austin, TX.
Amy L McGuireLeon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy and a member of the Human Genome Sequencing Center at Baylor College of Medicine. She received her J.D. from the University of Houston, Houston, TX and her Ph.D. from the Institute for Medical Humanities at University of Texas Medical Branch.
Stephanie GutierrezProject manager at Baylor College of Medicine. She received her B.S. from Texas State University in San Marcos, TX.
Robin KersteinProject coordinator for the Baylor College of Medicine Advancing Sequencing in Childhood Cancer Care (BASIC3) study at Baylor College of Medicine. She received her M.T. from Baylor University, Waco, TX. She holds ASCP and CCRA certifications.
D Williams ParsonsBoard-certified pediatric hematologist-oncologist who studies the clinical application of genomic technologies in pediatric cancer care. He is the Director of the Center for Personal Cancer Genomics and Therapeutics and the Co-Director of the Cancer Genetics & Genomics Program at Texas Children's Cancer and Hematology Centers, Baylor College of Medicine. He received his M.D. and Ph.D. from Ohio State University College of Medicine, Columbus, OH.
Sharon E PlonBoard-certified medical geneticist who focuses on laboratory and clinical research related to cancer susceptibility. She is a Professor in the departments of Pediatrics and Molecular and Human Genetics at Baylor College of Medicine. She is the Director of the Cancer Genetics and Genomics Program at Texas Children's Cancer and Hematology Centers. She received her M.D. and Ph.D. from Harvard University, Boston, MA.

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
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
Return of Research Results from samples obtained for Newborn ScreeningR21HG006594 · NHGRI · JOHNS HOPKINS UNIVERSITY · PI LEWIS, MICHELLE HUCKABY · 2011 to 2012
$239k
NCI NIH HHS 1-R01-CA154517NCI NIH HHS R01 CA154517NHGRI NIH HHS 1U01HG006485NHGRI NIH HHS R21 HG006594NHGRI NIH HHS R21HG006594-01NHGRI NIH HHS U01 HG006485
6 · The paper itself

Abstract

The return of genetic research results after death in the pediatric setting comes with unique complexities. Researchers must determine which results and through which processes results are returned. This paper discusses the experience over 15 years in pediatric cancer genetics research of returning research results after the death of a child and proposes a preventive ethics approach to protocol development in order to improve the quality of return of results in pediatric genomic settings.

Indexed as

DeathResearch SubjectsAdultChildChild, PreschoolDisclosureGenetic ResearchGenomicsHumansNeoplasms

Identifiers

PMID26479562
PMCPMC4617204

What OpenQuestion holds

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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.