Evidence map›Paper›PMID 26505993›Full record

ArticlePediatric blood & cancer2016

Is Whole-Exome Sequencing an Ethically Disruptive Technology? Perspectives of Pediatric Oncologists and Parents of Pediatric Patients With Solid Tumors.

Laurence B McCullough, Melody J Slashinski, Amy L McGuire, Richard L Street, Christine M Eng, Richard A Gibbs, D William Parsons, Sharon E Plon

Abstract read
In one paragraph

Article in Pediatric blood & cancer, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
29citing papers in PubMed, 2 pooled it
2.3field-weighted citation impact, top 12% of its field
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

29 citing papers in PubMed, 2 syntheses or guidelines pooled it, 52 citations in OpenAlex.

  1. Pooled it
  2. Pooled it
  3. Article
  4. Article
  5. Pediatric Cancer Predisposition and Surveillance Update: Summary Perspective and Future Directions.Clinical cancer research : an official journal of the American Association for Cancer Research · 2025
    Review
  6. Review
  7. Article
  8. Article
  9. Review
  10. Article
  11. Article
  12. Article
  13. Cancer Genetic Counseling-Current Practice and Future Challenges.Cold Spring Harbor perspectives in medicine · 2020
    Review
  14. Article
  15. Article
  16. Responsibility, culpability, and parental views on genomic testing for seriously ill children.Genetics in medicine : official journal of the American College of Medical Genetics · 2019
    Article
  17. Article
  18. 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

8 authors at 3 institutions in 1 country.

Laurence B McCulloughCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas.
Melody J SlashinskiDepartment of Community Health Education, University of Massachusetts at Amherst, Amherst, Massachusetts.
Amy L McGuireCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas.
Richard L StreetDepartment of Communication, Texas A&M University, College Station, Texas.
Christine M EngDepartment of Molecular and Human Genetics, Baylor College of Medicine, Houston, Texas.
Richard A GibbsDepartment of Molecular and Human Genetics, Baylor College of Medicine, Houston, Texas.
D William ParsonsDepartment of Molecular and Human Genetics, Baylor College of Medicine, Houston, Texas.
Sharon E PlonDepartment of Molecular and Human Genetics, Baylor College of Medicine, Houston, Texas.
Baylor Genetics · USBaylor College of Medicine · USUniversity of Massachusetts Amherst · US

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
NHGRI NIH HHS 1U01HG006485NHGRI NIH HHS U01 HG006485
6 · The paper itself

Abstract

backgroundIt has been anticipated that physician and parents will be ill prepared or unprepared for the clinical introduction of genome sequencing, making it ethically disruptive. PROCEDURE: As a part of the Baylor Advancing Sequencing in Childhood Cancer Care study, we conducted semistructured interviews with 16 pediatric oncologists and 40 parents of pediatric patients with cancer prior to the return of sequencing results. We elicited expectations and attitudes concerning the impact of sequencing on clinical decision making, clinical utility, and treatment expectations from both groups. Using accepted methods of qualitative research to analyze interview transcripts, we completed a thematic analysis to provide inductive insights into their views of sequencing.

resultsOur major findings reveal that neither pediatric oncologists nor parents anticipate sequencing to be an ethically disruptive technology, because they expect to be prepared to integrate sequencing results into their existing approaches to learning and using new clinical information for care. Pediatric oncologists do not expect sequencing results to be more complex than other diagnostic information and plan simply to incorporate these data into their evidence-based approach to clinical practice, although they were concerned about impact on parents. For parents, there is an urgency to protect their child's health and in this context they expect genomic information to better prepare them to participate in decisions about their child's care.

conclusionsOur data do not support the concern that introducing genome sequencing into childhood cancer care will be ethically disruptive, that is, leave physicians or parents ill prepared or unprepared to make responsible decisions about patient care.

Indexed as

Ethics, MedicalExomeChildHumansInterview, PsychologicalMedical OncologyMolecular Sequence DataNeoplasmsPatientsPhysicianschildhood cancersdisruptive technologyqualitative researchwhole-exome sequencing

Identifiers

PMID26505993
PMCPMC4982513
OpenAlexW1872623063

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.