Summary: This Client Alert will provide an overview of the Genetic Information Nondiscrimination Act of 2008 (GINA), including examples of what is considered genetic information, and what changes were recently put into effect. Employers will learn how these changes affect their business and what actions they should to take to ensure that they are complying with the recent changes. Employees will learn how their genetic information is protected by GINA.


The most notable new anti-discrimination law in twenty years, the Genetic Information Nondiscrimination Act of 2008 (GINA), went into effect for health insurers in May of this year, and for employers on November 21, 2009. GINA protects Americans from being treated unfairly by health insurers and employers because of differences in their DNA that may affect their health.

GINA prohibits employers and health insurers, with some exceptions, from asking employees to provide their family medical histories. Also, insurers cannot require such testing or use genetic information to deny coverage or set premiums or deductibles. These recent changes also prohibit any employment decisions being made based on an employee's genetics. Health plans will also be prohibited from rewarding their members for giving family medical histories when completing health risk questionnaires.


What is Genetic Information?

Genetic information does not include information about a person's current health status. However, genetic information does include:

  • A person's genetic tests;
  • Genetic tests of family members;
  • The manifestation of a disease or disorder in a family member;
  • Participation of a person or family member in research that includes genetic testing, counseling or education.


What Will GINA Do?
GINA was enacted to enable individuals to take advantage of genetic testing that may reduce the chance of contracting certain disorders, without suffering any adverse employment or insurance related consequences. Some of these developments include tests for breast or colon cancer mutations, classifications of genetic properties of existing tumors to help determine a course of treatment, tests for Huntington's disease, as well as carrier screenings for fragile X syndrome, spinal muscular atrophy, and cystic fibrosis. GINA's purpose is to ensure that anyone who requests a genetic test for cancer will not be charged a higher rate for health insurance due to the presence of a positive genetic predictor for cancer, nor will their employment status be adversely affected by this type of health decision. The law also enables people to take part in research studies without fear that their DNA information might be used against them in health insurance or the workplace.

The bill may have only a small effect on what we do today, but its impact may grow with advances in biotechnology. It is comprehensive, requiring amendments to portions of the Title VII of the Civil Rights Act, the Employee Retirement Income Security Act (ERISA), the Health Insurance Portability and Accountability Act (HIPAA), the Internal Revenue Code, the Public Health Service Act and Title XVIII of the Social Security Act (Medicare). It is intended to be a federal baseline for discrimination, and does not preempt stricter state laws that may already be in effect.


What Won't GINA Do?
Although fairly broad in reach, GINA does not:

  • Prohibit the use of genetic information to make payment determinations, such as reimbursement for additional testing covered for those participants at a higher risk of a disease or disorder;
  • Prohibit health care providers from recommending genetic tests to their patients;
  • Mandate coverage for particular tests or treatments;
  • Affect underwriting based on current health status;
  • Prohibit certain types of research by insurers or employers.


What Actions Should Employers Take?

Employers should immediately post the mandatory "EEO is the Law" poster supplement next to their current version of the "EEO Is the Law" poster. A copy of the poster supplement may be obtained at the EEOC website.

We also recommend employers update their policies, handbooks and training to reflect these new changes. We are available to assist you with these updates and can provide additional counsel on the effects these rules may have on your business practices.

About the Authors
Valerie J. Walker
is an Associate attorney focusing her practice on litigation, and labor and employment. She has previously worked as a law clerk for both the Cook County Public Defender and the National Labor Relations Board in New York City. For more detailed information regarding these changes, please contact Valerie Walker at vwalker@jsslaw.com or 602.262.5844.

John J. Egbert is Chair of the firm's Labor & Employment Department. Mr. Egbert's practice focuses in the areas of discrimination, wrongful discharge, and wage and hour litigation. He represents both private and public clients in federal and state court litigation, as well as before the various administrative agencies. He frequently advises clients on employment policies and procedures and represents employers in labor arbitration. Mr. Egbert also practices extensively before the state and federal appellate courts. Contact John Egbert at jegbert@jsslaw.com or 602.262.5994.