Familial Cancer

, Volume 9, Issue 2, pp 253–260 | Cite as

Evolving perspectives on genetic discrimination in health insurance among health care providers

  • Carin R. Huizenga
  • Katrina Lowstuter
  • Kimberly C. Banks
  • Veronica I. Lagos
  • Virginia O. Vandergon
  • Jeffrey N. Weitzel


Previous studies have documented that concerns about genetic discrimination (GD) may influence access to and participation in medically necessary care. We sought to characterize how GD issues influence current cancer genetics professional (CGP) practice, determine if their attitudes regarding GD have changed over time, and compare their knowledge and attitudes regarding laws prohibiting GD to a contemporary cohort of non-genetics clinicians. Members of the National Society of Genetic Counselors Familial Cancer Special Interest Group were invited to complete a 39 item online survey, adapted from previously published instruments. The resulting data were compared to a survey of CGPs published in 2000 and to a contemporary cohort of non-genetics clinicians (n = 1,181). There were 153 qualified respondents. Compared to the historical CGP cohort (n = 163), a significantly greater proportion said they would bill insurance for the cost of genetic testing for themselves (P < 0.0001). Most CGPs (94%) considered the risk of GD to be low to theoretical, concordant with 64% who expressed confidence in existing federal laws prohibiting GD. The mean knowledge score of CGPs regarding GD protective laws was significantly greater than that of non-genetics clinicians (P < 0.001). As barometers of change, CGPs show a migration in opinion over the past 8 years, with decreased fear of GD and greater knowledge of laws prohibiting GD compared to non-genetics clinicians. Better knowledge of GD and protective legislation, may facilitate non-genetics clinician utilization of genetics and personalized medicine.


Genetic discrimination Cancer genetics Genetic testing Health insurance Cancer genetics professional 



We acknowledge Dr. Gwen Uman for her assistance with data analysis, Dr. Cindy Malone for her contributions to this project, and Janelle Hilario and Shawntel Payton for their assistance with preparation of the manuscript. This project was funded in part by the State of California, Department of Health Services, Cancer Research Program, NHGRI grant number R03 HG002846-01, and the California State University, Northridge Thesis Support Program.


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Copyright information

© Springer Science+Business Media B.V. 2009

Authors and Affiliations

  • Carin R. Huizenga
    • 1
  • Katrina Lowstuter
    • 1
  • Kimberly C. Banks
    • 2
  • Veronica I. Lagos
    • 1
  • Virginia O. Vandergon
    • 3
  • Jeffrey N. Weitzel
    • 1
  1. 1.Division of Clinical Cancer GeneticsCity of HopeDuarteUSA
  2. 2.St. Joseph Hospital Cancer Genetics ProgramOrangeUSA
  3. 3.California State University, NorthridgeNorthridgeUSA

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