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Journal of Genetic Counseling

, Volume 24, Issue 3, pp 512–521 | Cite as

Public Awareness of Genetic Nondiscrimination Laws in Four States and Perceived Importance of Life Insurance Protections

  • Alicia A. ParkmanEmail author
  • Joan Foland
  • Beth Anderson
  • Debra Duquette
  • Holly Sobotka
  • Mary Lynn
  • Shelley Nottingham
  • William David Dotson
  • Katherine Kolor
  • Summer L. Cox
PROFESSIONAL ISSUES
First Online:

Abstract

Genetic testing has grown dramatically in the past decade and is becoming an integral part of health care. Genetic nondiscrimination laws have been passed in many states, and the Genetic Information Nondiscrimination Act (GINA) was passed at the federal level in 2008. These laws generally protect individuals from discrimination by health insurers or employers based on genetic information, including test results. In 2010, Connecticut, Michigan, Ohio, and Oregon added four questions to their Behavioral Risk Factor Surveillance System (BRFSS) survey to assess interest in genetic testing, awareness of genetic nondiscrimination laws, concern about genetic discrimination in determining life insurance eligibility and cost, and perceived importance of genetic nondiscrimination laws that address life insurance. Survey results showed that awareness of genetic nondiscrimination laws was low (less than 20 % of the adult population), while perceived importance of these types of laws was high (over 80 % of respondents rated them as very or somewhat important). Over two-thirds of respondents indicated they were very or somewhat concerned about life insurance companies using genetic test results to determine life insurance coverage and costs. Results indicate a need for more public education to raise awareness of protections provided through current genetic nondiscrimination laws. The high rate of concern about life insurance discrimination indicates an additional need for continued dialogue regarding the extent of legal protections in genetic nondiscrimination laws.

Keywords

GINA Genetic discrimination Genetic privacy Insurance Regulation 
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Notes

Acknowledgments

This work was supported in part by the Centers for Disease Control and Prevention, Office of Public Health Genomics, which assisted with the creation of survey questions and provided financial assistance necessary for the questions to be added to the state surveys. The findings and conclusions in this report are those of the authors and do not necessarily represent the views of the funding agencies.

Conflict of Interest

The authors declare no conflicts of interest.

Animal or Human Studies

No animal or human studies were carried out by the authors for this article. All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all participants for being included in the study.

References

  1. Ader, T., Susswein, L. R., Callanan, N. P., & Evans, J. P. (2009). Attitudes and practice of genetic counselors regarding anonymous testing for BRCA1/2. Journal of Genetic Counseling, 18(6), 606–617.CrossRefGoogle Scholar
  2. Allain, D. C., Friedman, S., & Senter, L. (2012). Consumer awareness and attitudes about insurance discrimination post enactment of the genetic information nondiscrimination Act. Familial Cancer, 11, 637–644.CrossRefGoogle Scholar
  3. Barlow-Stewart, K., Taylor, S. D., Treloar, S. A., Stranger, M., & Otlowski, M. (2009). Verification of consumers’ experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing. Genetics in Medicine, 11(3), 193–201.CrossRefGoogle Scholar
  4. Bernhardt, B. A., Zayac, C., & Pyeritz, R. E. (2011). Why is genetic screening for autosomal dominant disorders underused in families? The case of hereditary hemorrhagic telangiectasia. Genetics in Medicine, 13(9), 812–820.CrossRefGoogle Scholar
  5. Centers for Disease Control and Prevention. (2010). 2010 BRFSS Summary Data Quality Report, Version #1, Table 11: BRFSS Outcome Rates by State. ftp://ftp.cdc.gov/pub/data/brfss/2010_summary_data_quality_report.pdf. Accessed: December 5, 2013.
  6. Clyne, M., Schully, S.D., Dotson, W.D., Douglas, M.P., Gwinn, M., Kolor, K., et al. (2014). Horizon scanning for translational genomic research beyond bench to bedside. Genetics in Medicine.CrossRefGoogle Scholar
  7. Cogent Research. (2010). Cogent genomics, attitudes & trends study (5th ed.). Cambridge: Cogent Research.Google Scholar
  8. Connecticut General Statute § 46a-60: Discriminatory employment practices prohibited.Google Scholar
  9. Connecticut General Statutes § 38a-476: Preexisting condition coverage.Google Scholar
  10. Connecticut General Statutes § 38a-816: Unfair practice prohibited.Google Scholar
  11. Disability Rights Legal Center, Cancer Legal Resource Center. (2012). Regulation of Genetic Information in Life, Long Term Care, and Disability Insurances, 50 State Survey.Google Scholar
  12. Disability Rights Legal Center, Cancer Legal Resource Center. (2012). Definition of Genetic Information in State Laws.Google Scholar
  13. Dorsey, E. R., Darwin, K. C., Nichols, P. E., Kwok, J. H., Bennet, C., Rosenthal, L. S., et al. (2013). Knowledge of the genetic information nondiscrimination Act among individuals affected by Huntington disease. Clinical Genetics, 84(3), 251–257.CrossRefGoogle Scholar
  14. Genetic Information Nondiscrimination Act of 2008, H.R. 493, 110th Congress.Google Scholar
  15. Haga, S. B., Carrig, M. M., O’Daniel, J. M., Orlando, L. A., Killeya-Jones, L. A., Ginsburg, G. S., & Cho, A. (2011). Genomic risk profiling: attitudes and use in personal and clinical care of primary care physicians who offer risk profiling. Journal of General Internal Medicine, 26(8), 834–840. doi: 10.1007/s11606-011-1651-7. Epub 2011 Feb 11.CrossRefGoogle Scholar
  16. Health and Human Services. (2009). “GINA”, The Genetic Information Act of 2008, Information for Researchers and Health Care Professionals.Google Scholar
  17. Health Insurance Portability and Accountability Act of 1996, H.R. 3103, 104th Congress.Google Scholar
  18. Huizenga, C. R., Lowstuter, K., Banks, K. C., Lagos, V. I., Vandergon, V. O., & Weitzel, J. N. (2010). Evolving perspectives on genetic discrimination in health insurance among health care providers. Familial Cancer, 9(2), 253–260.CrossRefGoogle Scholar
  19. Iverson, E., Celious, A., Kennedy, C. R., Shehane, E., Eastman, A., Warren, V., et al. (2013). Perspectives of surrogate decision makers for critically ill patients regarding gene variation research. Genetics in Medicine, 15(5), 368–373.CrossRefGoogle Scholar
  20. Joly, Y., Burton, H., Knoppers, B.M., Feze, I.N., Dent, T., Pashayan, N., et al. (2013a). Life insurance: genomic stratification and risk classification. European Journal of Human Genetics.Google Scholar
  21. Joly, Y., Ngueng Feze, I., & Simard, J. (2013b). Genetic discrimination and life insurance: a systematic review of the evidence. BMC Medicine, 11, 25.CrossRefGoogle Scholar
  22. Kolor, K., Duquette, D., Zlot, A., Foland, J., Anderson, B., Giles, R., Wrathall, J., & Khoury, M. (2012). Public awareness and use of direct-to-consumer personal genomic tests from four state population-based surveys, and implications for clinical and public health practice. Genetics in Medicine, 14, 860–867.CrossRefGoogle Scholar
  23. Laedtke, A. L., O’Neill, S. M., Rubinstein, W. S., & Vogel, K. J. (2012). Family physicians’ awareness and knowledge of the Genetic Information Nondiscrimination Act (GINA). Journal of Genetic Counseling, 21(2), 345–352. doi: 10.1007/s10897-011-9405-6. Epub 2011 Sep 7.CrossRefGoogle Scholar
  24. Levy, D. E., Garber, J. E., & Shields, A. E. (2009). Guidelines for genetic risk assessment of hereditary breast and ovarian cancer: early disagreements and low utilization. Journal of General Internal Medicine, 24(7), 822–828.CrossRefGoogle Scholar
  25. Matloff ET, Bonadies DC, Moyer A, Brierley KL. (2013). Changes in specialists’ perspectives on cancer genetic testing, prophylactic surgery and insurance discrimination: then and now. Journal of Genetic Counseling. Google Scholar
  26. Michigan Compiled Laws § 333.17020, Michigan Public Act 29 of 2000.Google Scholar
  27. Michigan Compiled Laws § 37.1201, Michigan Public Act 32 of 2000.Google Scholar
  28. Michigan Compiled Laws § 550.1401, Michigan Public Act 26 of 2000.Google Scholar
  29. National Conference of State Legislatures. (2008). Genetic Privacy Laws. http://ncsl.org/research/health/genetic-privacy-laws.aspx.
  30. National Human Genome Research Institute. (2012). Existing Federal Anti-Discrimination Laws and How They Apply to Genetics. http://www.genome.gov/12513979#al-2.
  31. Nwulia, E. A., Hipolito, M. M., Aamir, S., Lawson, W. B., Nurnberger, J. I., Jr., & Consortium, B. G. S. (2011). Ethnic disparities in the perception of ethical risks from psychiatric genetic studies. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics, 156B(5), 569–580.CrossRefGoogle Scholar
  32. Ohio Revised Code §§ 1751.64 and 1751.65.Google Scholar
  33. Ohio Revised Code § 3901.491.Google Scholar
  34. Ohio Revised Code § 3901.501.Google Scholar
  35. Oregon Revised Statute § 192.531-192.549.Google Scholar
  36. Oregon Revised Statute §§ 659a.300 and 659a.303Google Scholar
  37. Oregon Revised Statute § 743.730.Google Scholar
  38. Oregon Revised Statute § 746.135-746.136.Google Scholar
  39. Otlowski, M., Taylor, S., & Bombard, Y. (2012). Genetic discrimination: international perspectives. Annual Review of Genomics and Human Genetics, 13, 433–434. doi: 10.1146/annurev-genom-090711-163800.CrossRefGoogle Scholar
  40. Parmarti, AK. (2011). Genetic Information Nondiscrimination Act (GINA) and Its Affect on Genetic Counseling Practice: A Survey of Genetic Counselors. (Master’s thesis). Retrieved from https://bir.brandeis.edu/bitstream/handle/10192/24364/Parmarti_thesis_GINA%20survey.pdf?sequence=1.
  41. Patient Protection and Affordable Care Act of 2010, H.R. 3590, 111th Congress.Google Scholar
  42. Quillin, J. M., Krist, A. H., Gyure, M., Corona, R., Rodriguez, V., Borzelleca, J., & Bodurtha, J. N. (2014). Patient-reported hereditary breast and ovarian cancer in a primary care practice. Journal of Community Genetics, 5(2), 179–183.CrossRefGoogle Scholar
  43. Ready, K., Arun, B. K., Schmeler, K. M., Uyei, A., Litton, J. K., Lu, K. H., Suc, C. C., & Peterson, S. K. (2011). Communication of BRCA1 and BRCA2 genetic test results to health care providers following genetic testing at a tertiary care center. Familial Cancer, 10(4), 673–679.CrossRefGoogle Scholar
  44. Sheppard, V.B., Graves, K.D., Christopher, J., Hurtado-de-Mendoza, A., Talley, C., Williams, K.P. (2013). African American Women’s Limited Knowledge and Experience with Genetic Counseling for Hereditary Breast Cancer. Journal of Genetic Counseling.Google Scholar
  45. Shostak, S., Zarhin, D., & Ottman, R. (2011). What’s at stake? Genetic information from the perspective of people with epilepsy and their family members. Social Science and Medicine, 73(5), 645–654.PubMedGoogle Scholar
  46. Simon, M. S., & Petrucelli, N. (2009). Hereditary breast and ovarian cancer syndrome: the impact of race on uptake of genetic counseling and testing. Methods in Molecular Biology, 471, 487–500.CrossRefGoogle Scholar
  47. U.S. Congressional Research Service. The Genetic Information Nondiscrimination Act of 2008 and the Patient Protection and Affordable Care Act of 2010: Overview and Legal Analysis of Potential Interactions (R41314: Dec 21, 2011), by Sarata AK, DeBergh JV, Staman J. http://www.genome.gov/Pages/PolicyEthics/GeneticDiscrimination/CRS_GINA_and_ACA.pdf. Accessed: November 27, 2013.

Copyright information

© National Society of Genetic Counselors, Inc. 2014

Authors and Affiliations

  • Alicia A. Parkman
    • 1
    Email author
  • Joan Foland
    • 2
  • Beth Anderson
    • 3
  • Debra Duquette
    • 3
  • Holly Sobotka
    • 4
  • Mary Lynn
    • 5
  • Shelley Nottingham
    • 6
  • William David Dotson
    • 7
  • Katherine Kolor
    • 7
  • Summer L. Cox
    • 1
  1. 1.Genetics ProgramOregon Public Health DivisionPortlandUSA
  2. 2.Genomics Office, Connecticut Department of Public HealthHartfordUSA
  3. 3.Cancer Genomics, Michigan Department of Community HealthLansingUSA
  4. 4.Chronic Disease and Behavioral Epidemiology Program, Ohio Department of HealthColumbusUSA
  5. 5.Comprehensive Cancer Control Program, Ohio Department of HealthColumbusUSA
  6. 6.Genetics Program, Ohio Department of HealthColumbusUSA
  7. 7.Office of Public Health Genomics, Centers for Disease Control and PreventionAtlantaUSA

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