Pediatric DTC Genetic Testing for Adult-Onset Inherited Cancer Risk: The Perspectives of High-Risk Parents
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Le résumé fourni par la source
INTRODUCTION: Despite 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. METHODS: Interviews 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. RESULTS: Three 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. CONCLUSION: Few 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.
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Le contrôle bibliographique ouvert
DOI retrouvé dans Crossref DOI retrouvé ; titre concordant.
- Titre Crossref
- Pediatric DTC Genetic Testing for Adult-Onset Inherited Cancer Risk: The Perspectives of High-Risk Parents
- Date Crossref
- 05/02/2025
- Éditeur
- S. Karger AG
- Type
- journal-article
Ce recoupement confirme des métadonnées liées au DOI. Il ne confirme ni la méthode ni les conclusions de l’étude, et il ne compte pas comme une seconde source scientifique indépendante.
Où se fait cette recherche
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University of Utah pays non établi dans la noticeUniversité ou école supérieure
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Georgetown University Lombardi Comprehensive Cancer Center pays non établi dans la noticeUniversité ou école supérieure
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Georgetown University Medical Center pays non établi dans la noticeÉtablissement de santé
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Memorial Sloan Kettering Cancer Center pays non établi dans la noticeÉtablissement de santé
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University of Pennsylvania Abramson Cancer Center pays non établi dans la noticeUniversité ou école supérieure
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University of Rochester Medicine Department of Health Humanities and Bioethics pays non établi dans la noticeÉtablissement de santé
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University of Rochester MD Center for Bioethics pays non établi dans la noticeUniversité ou école supérieure
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Children's National Center for Translational Research pays non établi dans la noticeÉtablissement de santé
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University of America Department of Psychology pays non établi dans la noticeUniversité ou école supérieure
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Catholic University of America pays non établi dans la noticeUniversité ou école supérieure
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Seattle Children's Hospital Treuman Katz Center for Pediatric Bioethics and Palliative Care pays non établi dans la noticeÉtablissement de santé
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Treuman Katz Center for Pediatric Bioethics and Palliative Care pays non établi dans la noticeUniversité ou école supérieure
University of Utah, Lombardi Comprehensive Cancer Center — Georgetown University et Georgetown University Medical Center, avec 9 autres affiliations.
Une affiliation ne permet pas de déduire la nationalité d’un auteur.