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Consumer awareness and attitudes about insurance discrimination post enactment of the Genetic Information Nondiscrimination Act

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Abstract

To examine the awareness and attitudes about the Genetic Information Nondiscrimination Act in individuals who made contact with a Hereditary Breast and Ovarian Cancer Syndrome advocacy group. This is a descriptive study of individuals (n = 1,699) who were invited via email and advertisements to complete an online questionnaire available from August 2009 through December 2010. Response distributions of relevant subgroups were compared using cross tabulation and Chi-squared tests were used. The majority of respondents (69.2 %) had undergone genetic testing (n = 1,156) and 30.2 % had not. Of those who did not undergo genetic testing, the most common reason given for declining testing was cost (28.8 %), followed by concerns about insurance discrimination (19.5 %). More than half (60.5 %) were worried about health insurance discrimination when they first considered genetic testing and 28.6 % were worried about employment discrimination. Slightly more individuals were worried about health insurance discrimination if they had no prior knowledge of GINA. While “cost” was cited most frequently as the reason not to test, “fear of insurance discrimination” was the second most common reason. Knowledge of GINA among consumers is still limited and public education may help promote reduction in fear.

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Acknowledgments

Thank you to the National Society of Genetic Counselors’ Cancer Special Interest Group for providing a grant to support the statistical analysis of our data.

Conflict of interest

The authors declare that they have no conflict of interest.

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Authors and Affiliations

  1. Division of Human Genetics, Comprehensive Cancer Center, The Ohio State University, 2001 Polaris Parkway, Columbus, OH, 43240, USA

    Dawn C. Allain & Leigha Senter

  2. FORCE: Facing Our Risk of Cancer Empowered, 16057 Tampa Palms Blvd. W. #373, Tampa, FL, 33647, USA

    Sue Friedman

Authors
  1. Dawn C. Allain
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  2. Sue Friedman
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  3. Leigha Senter
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Correspondence to Leigha Senter.

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Allain, D.C., Friedman, S. & Senter, L. Consumer awareness and attitudes about insurance discrimination post enactment of the Genetic Information Nondiscrimination Act. Familial Cancer 11, 637–644 (2012). https://doi.org/10.1007/s10689-012-9564-0

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