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

Alicia A. Parkman*, Joan Foland, Beth Anderson, Debra Duquette, Holly Sobotka, Mary Lynn, Shelley Nottingham, William David Dotson, Katherine Kolor, Summer L. Cox

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

42 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)512-521
Number of pages10
JournalJournal of Genetic Counseling
Issue number3
StatePublished - Jun 18 2015


  • GINA
  • Genetic discrimination
  • Genetic privacy
  • Insurance
  • Regulation

ASJC Scopus subject areas

  • Genetics(clinical)


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