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

DOI: 10.1007/s13187-011-0286-z

Cite this article as:
Walsh, J., Arora, M., Hosenfeld, C. et al. J Canc Educ (2012) 27: 112. doi:10.1007/s13187-011-0286-z

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 screeningPreferencesFocus groups

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