Familial Cancer

, Volume 11, Issue 4, pp 637–644 | Cite as

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

  • Dawn C. Allain
  • Sue Friedman
  • Leigha SenterEmail author
Original Article


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.


GINA Genetic discrimination Insurance Awareness 



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.

Supplementary material

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


  1. 1.
    Hall MA, Rich SS (2000) Laws restricting health insurers’ use of genetic information: impact on genetic discrimination. Am J Hum Genet 66(1):293–307PubMedCrossRefGoogle Scholar
  2. 2.
    Leib J, Hoodfar E, Haidle J, Nagy R (2008) The new genetic privacy law. Community Oncol 5(6):351–354CrossRefGoogle Scholar
  3. 3.
    Hudson K, Javitt G, Burke W, Byers P (2007) ASHG Statement* on direct-to-consumer genetic testing in the United States. Obstet Gynecol 110(6):1392–1395PubMedCrossRefGoogle Scholar
  4. 4.
    Lapham EV, Kozma C, Weiss JO (1996) Genetic discrimination: perspectives of consumers. Science 274(5287):621–624PubMedCrossRefGoogle Scholar
  5. 5.
    Hall MA, McEwen JE, Barton JC et al (2005) Concerns in a primary care population about genetic discrimination by insurers. Genet Med 7(5):311–316PubMedCrossRefGoogle Scholar
  6. 6.
    Penziner E, Williams JK, Erwin C et al (2008) Perceptions of discrimination among persons who have undergone predictive testing for Huntington’s disease. Am J Med Genet B Neuropsychiatr Genet 147(3):320–325PubMedGoogle Scholar
  7. 7.
    Hadley DW, Jenkins J, Dimond E et al (2003) Genetic counseling and testing in families with hereditary nonpolyposis colorectal cancer. Arch Intern Med 163(5):573–582PubMedCrossRefGoogle Scholar
  8. 8.
    Apse KA, Biesecker BB, Giardiello FM, Fuller BP, Bernhardt BA (2004) Perceptions of genetic discrimination among at-risk relatives of colorectal cancer patients. Genet Med 6(6):510–516PubMedGoogle Scholar
  9. 9.
    Peterson EA, Milliron KJ, Lewis KE, Goold SD, Merajver SD (2002) Health insurance and discrimination concerns and BRCA1/2 testing in a clinic population. Cancer Epidemiol Biomarkers Prev 11(1):79–87PubMedGoogle Scholar
  10. 10.
    Lynch HT, Lemon SJ, Durham C et al (1997) A descriptive study of BRCA1 testing and reactions to disclosure of test results. Cancer 79(11):2219–2228PubMedCrossRefGoogle Scholar
  11. 11.
    Freedman AN, Wideroff L, Olson L et al (2003) US physicians’ attitudes toward genetic testing for cancer susceptibility. Am J Med Genet A 120A(1):63–71PubMedCrossRefGoogle Scholar
  12. 12.
    Nedelcu R, Blazer KR, Schwerin BU et al (2004) Genetic discrimination: the clinician perspective. Clin Genet 66(4):311–317PubMedCrossRefGoogle Scholar
  13. 13.
    Lowstuter KJ, Sand S, Blazer KR et al (2008) Influence of genetic discrimination perceptions and knowledge on cancer genetics referral practice among clinicians. Genet Med 10(9):691–698PubMedCrossRefGoogle Scholar
  14. 14.
    Matloff ET, Shappell H, Brierley K, Bernhardt BA, McKinnon W, Peshkin BN (2000) What would you do? Specialists’ perspectives on cancer genetic testing, prophylactic surgery, and insurance discrimination. J Clin Oncol 18(12):2484–2492PubMedGoogle Scholar
  15. 15.
    Hall MA, Rich SS (2000) Genetic privacy laws and patients’ fear of discrimination by health insurers: the view from genetic counselors. J Law Med Ethics 28(3):245–257PubMedCrossRefGoogle Scholar
  16. 16.
    Genetic Informaton Nondiscrimination Act of 2008.
  17. 17.
    Hudson KL (2007) Prohibiting genetic discrimination. N Engl J Med 356(20):2021–2023PubMedCrossRefGoogle Scholar
  18. 18.
    Terry SF (2009) Genetic information nondiscrimination act insurance protections issued. Genet Test Mol Biomarkers 13(6):709–710PubMedCrossRefGoogle Scholar
  19. 19.
    Clifton JM, VanBeuge SS, Mladenka C, Wosnik KK (2010) The Genetic Information Nondiscrimination Act 2008: what clinicians should understand. J Am Acad Nurse Pract 22(5):246–249PubMedCrossRefGoogle Scholar
  20. 20.
    Monsen RB (2009) The Genetic Information Nondiscrimination Act helps us all. J Pediatr Nurs 24(2):151–152PubMedCrossRefGoogle Scholar
  21. 21.
    Steck MB, Eggert JA (2011) The need to be aware and beware of the genetic information nondiscrimination act. Clin J Oncol Nurs 15(3):E34–E41Google Scholar
  22. 22.
    Dressler LG, Terry SF (2009) How will GINA influence participation in pharmacogenomics research and clinical testing? Clin Pharmacol Ther 86(5):472–475PubMedCrossRefGoogle Scholar
  23. 23.
    O’Donnell MP (2010) The Genetic Information Nondiscrimination Act—a wake-up call: great intentions, but a setback for health impact and cost-effectiveness of workplace health promotion. Am J Health Promot 24(3):iv–vGoogle Scholar
  24. 24.
    Payne PW Jr, Goldstein MM, Jarawan H, Rosenbaum S (2009) Health insurance and the Genetic Information Nondiscrimination Act of 2008: implications for public health policy and practice. Public Health Rep 124(2):328–331PubMedGoogle Scholar
  25. 25.
    Laedtke AL, O’Neill SM, Rubinstein WS, Vogel KJ (2011) Family Physicians’ Awareness and Knowledge of the Genetic Information Non-Discrimination Act (GINA). J Genet CounsGoogle Scholar
  26. 26.
    Huizenga CR, Lowstuter K, Banks KC, Lagos VI, Vandergon VO, Weitzel JN (2010) Evolving perspectives on genetic discrimination in health insurance among health care providers. Fam Cancer 9(2):253–260PubMedCrossRefGoogle Scholar
  27. 27.
    Klitzman R (2010) Exclusion of genetic information from the medical record: ethical and medical dilemmas. JAMA 304(10):1120–1121PubMedCrossRefGoogle Scholar
  28. 28.
    Dancyger C, Smith JA, Jacobs C, Wallace M, Michie S (2010) Comparing family members’ motivations and attitudes towards genetic testing for hereditary breast and ovarian cancer: a qualitative analysis. Eur J Hum Genet 18(12):1289–1295PubMedCrossRefGoogle Scholar
  29. 29.
    McInerney-Leo A, Biesecker BB, Hadley DW et al (2005) BRCA1/2 testing in hereditary breast and ovarian cancer families II: impact on relationships. Am J Med Genet A 133A(2):165–169PubMedCrossRefGoogle Scholar
  30. 30.
    Speice J, McDaniel SH, Rowley PT, Loader S (2002) Family issues in a psychoeducation group for women with a BRCA mutation. Clin Genet 62(2):121–127PubMedCrossRefGoogle Scholar
  31. 31.
    van Oostrom I, Meijers-Heijboer H, Duivenvoorden HJ et al (2007) A prospective study of the impact of genetic susceptibility testing for BRCA1/2 or HNPCC on family relationships. Psychooncology 16(4):320–328PubMedCrossRefGoogle Scholar

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

Personalised recommendations