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Journal of Genetic Counseling

, Volume 19, Issue 3, pp 269–279 | Cite as

Parental Attitudes, Beliefs, and Perceptions about Genetic Testing for FAP and Colorectal Cancer Surveillance in Minors

  • Fallon R. LevineEmail author
  • James E. Coxworth
  • David A. Stevenson
  • Thérèse Tuohy
  • Randall W. Burt
  • Anita Y. Kinney
Original Research

Abstract

Familial adenomatous polyposis (FAP) is the second most common hereditary colorectal cancer syndrome and confers a nearly 100% lifetime risk of developing colorectal cancer. Understanding factors that facilitate and inhibit genetic testing and cancer surveillance in children who are members of families affected by FAP will better equip clinicians to clarify misunderstandings and facilitate appropriate care. The aims of this study were to examine parental attitudes and beliefs regarding endoscopic surveillance and genetic testing in minors at risk for developing FAP. This cross-sectional study includes analyses of qualitative and quantitative interview data collected from parents of children with or at risk for FAP. This report includes data from 28 parents with a total of 51 biological children between 10–17 years of age. The parents had a clinical and/or genetic diagnosis of FAP. Most commonly reported facilitators included provider recommendation (surveillance) and personalized medical management (genetic testing). Most commonly reported barriers included lack of provider recommendation (surveillance) and cost (genetic testing).

Keywords

FAP Children Parental attitudes Endoscopic surveillance Genetic testing APC mutation 

Notes

Acknowledgements

This project was funded by a career development award (K07CA82121) and a University of Utah seed grant awarded to Dr. Kinney, as well as two National Cancer Institute grants awarded to Dr. Burt (R01-CA40641 and P01-CA73992) and a Cancer Center Support Grant (5P30CA042014). This project was also funded by the University of Utah Graduate Program in Genetic Counseling and the Huntsman Cancer Foundation. We appreciate the work of José Benuzillo for his assistance with the data analysis, and Susan Schulman for her assistance with manuscript preparation.

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Copyright information

© National Society of Genetic Counselors, Inc. 2010

Authors and Affiliations

  • Fallon R. Levine
    • 1
    • 6
    Email author
  • James E. Coxworth
    • 2
    • 3
  • David A. Stevenson
    • 1
  • Thérèse Tuohy
    • 2
  • Randall W. Burt
    • 2
    • 4
    • 5
  • Anita Y. Kinney
    • 2
    • 5
  1. 1.Division of Medical Genetics, Department of PediatricsUniversity of UtahSalt Lake CityUSA
  2. 2.Huntsman Cancer InstituteUniversity of UtahSalt Lake CityUSA
  3. 3.Department of AnthropologyUniversity of UtahSalt Lake CityUSA
  4. 4.Division of Gastroenterology, Department of Internal Medicine, School of MedicineUniversity of UtahSalt Lake CityUSA
  5. 5.Division of Clinical Epidemiology, Department of Internal Medicine, School of MedicineUniversity of UtahSalt Lake CityUSA
  6. 6.University of Alabama at BirminghamBirminghamUSA

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