Journal of Cancer Education

, Volume 27, Issue 1, pp 112–119

Preferences for Genetic Testing to Identify Hereditary Colorectal Cancer: Perspectives of High-Risk Patients, Community Members, and Clinicians

  • Judith Walsh
  • Millie Arora
  • Christina Hosenfeld
  • Uri Ladabaum
  • Miriam Kuppermann
  • Sara J. Knight
Article

Abstract

The aim of this study was to establish key characteristics that patients, consumers, and health professionals value regarding genetic testing (GT) and personalized medicine using the example of GT for hereditary Lynch syndrome. We conducted a series of focus groups with individuals recruited from a clinic that follows those at high risk for hereditary cancer, individuals recruited from the community, physicians, and genetic counselors. Participants were presented with clinical scenarios about Lynch syndrome testing and asked to identify characteristics that they perceived as important in making decisions about GT. Forty-two participants (19 community members, 8 high-risk and cancer patients, 3 genetic counselors, and 8 physicians) participated. Among community members and patients, the most frequently discussed considerations were the personal impact of GT and family impact, respectively. Among physicians, the most frequently discussed topic was the characteristics of genomic services (e.g., test invasiveness); among genetic counselors, the most frequently discussed topic was evidence and recommendations. A variety of test characteristics were important in decision making about GT. High-risk patients, community members, and health care providers had different priorities. Health care professionals should be aware of differences between their own considerations about GT and those that are important to patients.

Keywords

Colorectal cancer screening Preferences Focus groups 

References

  1. 1.
    Sanderson SC, Wardle J, Jarvis MJ, Humphries SE (2004) Public interest in genetic testing for susceptibility to heart disease and cancer: a population-based survey in the UK. Prev Med 39:458–464PubMedCrossRefGoogle Scholar
  2. 2.
    Ramsey SD, Wilson S, Spencer A, Geidzinska A, Newcomb P (2003) Attitudes towards genetic screening for predisposition to colon cancer among cancer patients, their relatives and members of the community. Results of focus group interviews. Community Genet 6:29–36PubMedCrossRefGoogle Scholar
  3. 3.
    Rose A, Peters N, Shea JA, Armstrong K (2005) The association between knowledge and attitudes about genetic testing for cancer risk in the United States. J Health Commun 10:309–321PubMedCrossRefGoogle Scholar
  4. 4.
    Peters N, Rose A, Armstrong K (2004) The association between race and attitudes about predictive genetic testing. Cancer Epidemiol Biomarkers Prev 13:361–365PubMedGoogle Scholar
  5. 5.
    Graham ID, Logan DM, Hughes-Benzie R, Evans WK, Perras H, McAuley LM, Laupacis A, Stern H (1998) How interested is the public in genetic testing for colon cancer susceptibility? Report of a cross-sectional population survey. Cancer Prev Control 2:167–172PubMedGoogle Scholar
  6. 6.
    Croyle RT, Lerman C (1993) Interest in genetic testing for colon cancer susceptibility: cognitive and emotional correlates. Prev Med 22:284–292PubMedCrossRefGoogle Scholar
  7. 7.
    Vuckovic N, Harris EL, Valanis B, Stewart B (2003) Consumer knowledge and opinions of genetic testing for breast cancer risk. Am J Obstet Gynecol 189:S48–S53PubMedCrossRefGoogle Scholar
  8. 8.
    Bluman LG, Rimer BK, Berry DA, Borstelmann N, Iglehart JD, Regan K, Schildkraut J, Winer EP (1999) Attitudes, knowledge, and risk perceptions of women with breast and/or ovarian cancer considering testing for BRCA1 and BRCA2. J Clin Oncol 17:1040–1046PubMedGoogle Scholar
  9. 9.
    Press NA, Yasui Y, Reynolds S, Durfy SJ, Burke W (2001) Women's interest in genetic testing for breast cancer susceptibility may be based on unrealistic expectations. Am J Med Genet 99:99–110PubMedCrossRefGoogle Scholar
  10. 10.
    Peters N, Armstrong K (2005) Racial differences in prostate cancer treatment outcomes: a systematic review. Cancer Nurs 28:108–118PubMedCrossRefGoogle Scholar
  11. 11.
    Peters N, Domchek SM, Rose A, Polis R, Stopfer J, Armstrong K (2005) Knowledge, attitudes, and utilization of BRCA1/2 testing among women with early-onset breast cancer. Genet Test 9:48–53PubMedCrossRefGoogle Scholar
  12. 12.
    Thompson HS, Valdimarsdottir HB, Jandorf L, Redd W (2003) Perceived disadvantages and concerns about abuses of genetic testing for cancer risk: differences across African American, Latina and Caucasian women. Patient Educ Couns 51:217–227PubMedCrossRefGoogle Scholar
  13. 13.
    Andrykowski MA, Munn RK, Studts JL (1996) Interest in learning of personal genetic risk for cancer: a general population survey. Prev Med 25:527–536PubMedCrossRefGoogle Scholar
  14. 14.
    Bosompra K, Flynn BS, Ashikaga T, Rairikar CJ, Worden JK, Solomon LJ (2000) Likelihood of undergoing genetic testing for cancer risk: a population-based study. Prev Med 30:155–166PubMedCrossRefGoogle Scholar
  15. 15.
    Glanz K, Grove J, Lerman C, Gotay C, Le Marchand L (1999) Correlates of intentions to obtain genetic counseling and colorectal cancer gene testing among at-risk relatives from three ethnic groups. Cancer Epidemiol Biomarkers Prev 8:329–336PubMedGoogle Scholar
  16. 16.
    Smith KR, Croyle RT (1995) Attitudes toward genetic testing for colon cancer risk. Am J Public Health 85:1435–1438PubMedCrossRefGoogle Scholar
  17. 17.
    Kinney AY, DeVellis BM, Skrzynia C, Millikan R (2001) Genetic testing for colorectal carcinoma susceptibility: focus group responses of individuals with colorectal carcinoma and first-degree relatives. Cancer 91:57–65PubMedCrossRefGoogle Scholar
  18. 18.
    Brain K, Sivell S, Bennert K, Howell L, France L, Jordan S, Rogers MT, Gray J, Sampson J (2005) An exploratory comparison of genetic counselling protocols for HNPCC predictive testing. Clin Genet 68:255–261PubMedCrossRefGoogle Scholar
  19. 19.
    Schroy PC 3rd, Heeren TC (2005) Patient perceptions of stool-based DNA testing for colorectal cancer screening. Am J Prev Med 28:208–214PubMedCrossRefGoogle Scholar
  20. 20.
    Gritz ER, Peterson SK, Vernon SW, Marani SK, Baile WF, Watts BG, Amos CI, Frazier ML, Lynch PM (2005) Psychological impact of genetic testing for hereditary nonpolyposis colorectal cancer. J Clin Oncol 23:1902–1910PubMedCrossRefGoogle Scholar
  21. 21.
    Manne SL, Chung DC, Weinberg DS, Vig HS, Catts Z, Cabral MK, Shannon K, Meropol NJ (2007) Knowledge and attitudes about microsatellite instability testing among high-risk individuals diagnosed with colorectal cancer. Cancer Epidemiol Biomarkers Prev 16:2110–2117PubMedCrossRefGoogle Scholar
  22. 22.
    Pentz RD, Peterson SK, Watts B, Vernon SW, Lynch PM, Koehly LM, Gritz ER (2005) Hereditary nonpolyposis colorectal cancer family members' perceptions about the duty to inform and health professionals' role in disseminating genetic information. Genet Test 9:261–268PubMedCrossRefGoogle Scholar
  23. 23.
    Peterson SK, Watts BG, Koehly LM, Vernon SW, Baile WF, Kohlmann WK, Gritz ER (2003) How families communicate about HNPCC genetic testing: findings from a qualitative study. Am J Med Genet C Semin Med Genet 119C:78–86PubMedCrossRefGoogle Scholar
  24. 24.
    Vernon SW, Gritz ER, Peterson SK, Perz CA, Marani S, Amos CI, Baile WF (1999) Intention to learn results of genetic testing for hereditary colon cancer. Cancer Epidemiol Biomarkers Prev 8:353–360PubMedGoogle Scholar
  25. 25.
    Hadley DW, Jenkins J, Dimond E, Nakahara K, Grogan L, Liewehr DJ, Steinberg SM, Kirsch I (2003) Genetic counseling and testing in families with hereditary nonpolyposis colorectal cancer. Arch Intern Med 163:573–582PubMedCrossRefGoogle Scholar
  26. 26.
    Miller FA, Carroll JC, Wilson BJ, Bytautas JP, Allanson J, Cappelli M, de Laat S, Saibil F (2010) The primary care physician role in cancer genetics: a qualitative study of patient experience. Fam Pract 27:563–569PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2011

Authors and Affiliations

  • Judith Walsh
    • 1
    • 8
  • Millie Arora
    • 1
  • Christina Hosenfeld
    • 2
  • Uri Ladabaum
    • 3
  • Miriam Kuppermann
    • 4
  • Sara J. Knight
    • 5
    • 6
    • 7
  1. 1.Division of General Internal Medicine, Department of MedicineUniversity of CaliforniaSan FranciscoUSA
  2. 2.Department of PharmacyUniversity of CaliforniaSan FranciscoUSA
  3. 3.Division of GastroenterologyStanford UniversityPalo AltoUSA
  4. 4.Departments of Obstetrics, Gynecology and Reproductive Sciences, and Epidemiology and BiostatisticsUniversity of CaliforniaSan FranciscoUSA
  5. 5.San Francisco VA Medical CenterSan FranciscoUSA
  6. 6.Department of PsychiatryUniversity of CaliforniaSan FranciscoUSA
  7. 7.Department of UrologyUniversity of CaliforniaSan FranciscoUSA
  8. 8.UCSF Women’s Health Clinical Research CenterSan FranciscoUSA

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