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


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.


GINA Genetic discrimination Genetic privacy Insurance Regulation 



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.


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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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