Evidence map›Paper›PMID 39908008›Full record

ArticlePublic health genomics2025

Pediatric DTC Genetic Testing for Adult-Onset Inherited Cancer Risk: The Perspectives of High-Risk Parents.

Madison K Kilbride, Beth N Peshkin, Jada G Hamilton, Jamie Brower, Hannah Ovadia, Lainie Friedman Ross, Rosalba Sacca, Beth Tarini, Susan M Domchek, Sarah Vittone and 7 more

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PubMed Full text at PMC Publisher
In one paragraph

Article in Public health genomics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. 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

17 authors.

Madison K KilbrideCollege of Humanities, University of Utah, Salt Lake City, Utah, USA.
Beth N PeshkinLombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, DC, USA.
Jada G HamiltonMemorial Sloan Kettering Cancer Center, New York, New York, USA.
Jamie BrowerAbramson Cancer Center, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Hannah OvadiaMemorial Sloan Kettering Cancer Center, New York, New York, USA.
Lainie Friedman RossDepartment of Health Humanities and Bioethics, University of Rochester, Rochester, New York, USA.
Rosalba SaccaMemorial Sloan Kettering Cancer Center, New York, New York, USA.
Beth TariniCenter for Translational Research, Children's National Research Institute, Washington, DC, USA.
Susan M DomchekAbramson Cancer Center, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Sarah VittoneSchool of Nursing, Georgetown University, Washington, DC, USA.
Marcelo M SleimanLombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, DC, USA.
Mary Rose YockelDepartment of Psychology, The Catholic University of America, Washington, DC, USA.
Caroline SalafiaMemorial Sloan Kettering Cancer Center, New York, New York, USA.
Claudine IsaacsLombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, DC, USA.
Benjamin S WilfondTreuman Katz Center for Pediatric Bioethics and Palliative Care, Seattle Children's Hospital, Seattle, Washington, USA.
Muriel R StatmanLombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, DC, USA.
Kenneth P TercyakLombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, DC, USA.

Funding

X-RAY CRYSTALLOGRAPHYP30CA008748 · NCI · SLOAN-KETTERING INSTITUTE FOR CANCER RES · PI Hongbiao Carl Lekaye · 1985 to 2026
$347.4M
UNIVERSITY OF PENNSYLVANIA CAN CTR SUPPORT GRANTP30CA016520 · NCI · UNIVERSITY OF PENNSYLVANIA · PI Robert H. Vonderheide · 1985 to 2026
$222.3M
Tissue Culture Shared ResourceP30CA051008 · NCI · GEORGETOWN UNIVERSITY · PI Louis M Weiner · 1990 to 2026
$71.5M
Improving Genetic Counseling for BRCA+ MothersR01CA246589 · NCI · GEORGETOWN UNIVERSITY · PI PESHKIN, BETH N, TERCYAK, KENNETH · 2020 to 2024
$2.0M
NCI NIH HHS P30 CA008748NCI NIH HHS P30 CA016520NCI NIH HHS P30 CA051008NCI NIH HHS R01 CA246589
6 · The paper itself

Abstract

introductionDespite guidelines discouraging pediatric genetic testing for adult-onset hereditary cancer risk, direct-to-consumer (DTC) companies make them available to children's parents. This study examined the perspectives of high-risk parents toward such testing.

methodsInterviews were conducted with N = 30 parents (children ages 10-21) carrying pathogenic variants in cancer-causing genes available for detection through DTC tests. Interviews were analyzed inductively using a standardized methodology to identify prominent themes.

resultsThree major themes were identified: (1) high-risk parents' motivations for pediatric genetic testing, (2) risks and benefits of pediatric genetic testing, and (3) parental involvement of children in decision-making about testing. Although only n = 5 parents (17% of the sample) reported that their children were genetically tested (n = 3 through a DTC company, n = 2 through a clinician), 73% endorsed pediatric genetic testing for general health reasons. Many parents (53%) expressed a preference for clinical testing over DTC testing. While parents recognized the limits of DTC testing, some (40%) expressed that it should remain available to high-risk parents for the purpose of identifying cancer risks in their children. Children's maturity (70%), interest in testing (77%), and anticipated responses to testing (43%) were cited as important decisional considerations.

conclusionFew high-risk parents utilized DTC testing for their children. Parents generally preferred the prospect of clinical testing, but some believed DTC testing should be an option available to families. Clinicians should discuss the risks and benefits of pediatric genetic testing, including DTC, with high-risk parents. This may facilitate more informed decision-making that minimizes potential harms.

Indexed as

Direct-To-Consumer Screening and TestingGenetic Predisposition to DiseaseGenetic TestingNeoplasmsParentsAdolescentAdultChildDecision MakingFemaleHumansMaleMiddle AgedYoung AdultCancerChildrenDirect-to-consumer genetic testingParents

Identifiers

PMID39908008
PMCPMC11867838

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.