Familial Cancer

, Volume 11, Issue 4, pp 637–644

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

Original Article

DOI: 10.1007/s10689-012-9564-0

Cite this article as:
Allain, D.C., Friedman, S. & Senter, L. Familial Cancer (2012) 11: 637. doi:10.1007/s10689-012-9564-0


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.


GINAGenetic discriminationInsuranceAwareness

Supplementary material

10689_2012_9564_MOESM1_ESM.docx (12 kb)
Supplementary material 1 (DOCX 12 kb)

Copyright information

© Springer Science+Business Media B.V. 2012

Authors and Affiliations

  1. 1.Division of Human Genetics, Comprehensive Cancer CenterThe Ohio State UniversityColumbusUSA
  2. 2.FORCE: Facing Our Risk of Cancer EmpoweredTampaUSA