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

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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.

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Authors and Affiliations

  1. Division of General Internal Medicine, Department of Medicine, University of California, San Francisco, CA, USA

    Judith Walsh & Millie Arora

  2. Department of Pharmacy, University of California, San Francisco, CA, USA

    Christina Hosenfeld

  3. Division of Gastroenterology, Stanford University, Palo Alto, CA, USA

    Uri Ladabaum

  4. Departments of Obstetrics, Gynecology and Reproductive Sciences, and Epidemiology and Biostatistics, University of California, San Francisco, CA, USA

    Miriam Kuppermann

  5. San Francisco VA Medical Center, San Francisco, CA, USA

    Sara J. Knight

  6. Department of Psychiatry, University of California, San Francisco, CA, USA

    Sara J. Knight

  7. Department of Urology, University of California, San Francisco, CA, USA

    Sara J. Knight

  8. UCSF Women’s Health Clinical Research Center, 1635 Divisadero Suite 600, San Francisco, CA, 94115, USA

    Judith Walsh

Authors
  1. Judith Walsh
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  2. Millie Arora
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  3. Christina Hosenfeld
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  4. Uri Ladabaum
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  5. Miriam Kuppermann
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  6. Sara J. Knight
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Correspondence to Judith Walsh.

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Walsh, J., Arora, M., Hosenfeld, C. et al. Preferences for Genetic Testing to Identify Hereditary Colorectal Cancer: Perspectives of High-Risk Patients, Community Members, and Clinicians. J Canc Educ 27, 112–119 (2012). https://doi.org/10.1007/s13187-011-0286-z

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  • DOI: https://doi.org/10.1007/s13187-011-0286-z

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