On May 21, 2008, President George W. Bush signed into law the Genetic Information Nondiscrimination Act of 2008 (GINA). After years of considering different versions of the law, the Senate and House approved GINA with nearly unanimous support. The new law prohibits discrimination against individuals on the basis of their "genetic information" in both employment and in connection with health plans.

GINA'S PURPOSE

GINA's drafters primarily wanted to encourage Americans to take advantage of new medical therapies, technologies, and treatments involving genetic information. Because many Americans feared discrimination based on their genetic test results, GINA's provisions were drafted to allay these concerns by preventing health insurers and employers from adversely impacting health coverage and employment based on such results.

GINA has two main parts - Title I, which relates to health plans, and Title II, which relates to employment. The provisions affecting health plans become effective on May 21, 2009, while the employment provisions become effective on November 21, 2009.

HEALTH CARE-RELATED PROVISIONS

Title I prohibits group health plans and issuers of insurance offering health coverage from:

  • adjusting group premium or contribution amounts based on genetic information

  • using genetic information about an individual for underwriting purposes

  • requesting or requiring genetic testing

  • denying enrollment based on genetic information

  • requesting, requiring, or purchasing genetic information prior to enrollment and in connection with enrollment

In addition, Title I expands the Health Insurance Portability and Accountability Act (HIPAA) by adding the term "genetic information" to the definition of "health information" in the privacy regulations promulgated under HIPAA. This reduces any ambiguity in HIPAA regarding the confidentiality of such information.

EMPLOYMENT-RELATED PROVISIONS

Title II requires employers, employment agencies, labor organizations, and apprenticeship and training programs to refrain from:

  • hiring, firing, promoting, or making any employment decision, based on genetic information

  • disclosing genetic information about an individual, with certain exceptions

  • requesting or requiring genetic information, with certain exceptions

  • retaliating against those who assert their rights under the law

GINA further prohibits restriction, segregation, or classification of employees based on genetic information in any way that may "adversely affect" an employee's employment status or that would "deprive or tend to deprive" any employee of employment opportunities.

"GENETIC INFORMATION" DEFINED

GINA defines "genetic information" with respect to any individual, as: (1) genetic tests; (2) genetic tests of family members; and (3) the manifestation of a disease or disorder in a family member."Genetic test" is defined as "an analysis of human DNA, RNA, chromosomes, proteins, or metabolites, that detects genotypes,mutations, or chromosomal changes."

MONETARY PENALTIES AND REMEDIES

Penalties for non-compliance with GINA can be severe.With regard to plan sponsors and health insurance issuers, GINA provides the Secretary of Labor with the power to seek monetary fines that can reach up to $100 per day for each day of non-compliance. There are, however, the following exceptions to such penalties: (1) where "...failure during any period for which it is established to the satisfaction of the Secretary that the person otherwise liable for such penalty did not know, and exercising reasonable diligence would not have known, that such failure existed;" or (2) where the failure was "...due to a reasonable cause and not to willful neglect..." and it was "...corrected during the 30-day time period beginning on the first date the person otherwise liable for such penalty knew, or exercising reasonable diligence would have known, that such failure existed."

With respect to the employment-related provisions of GINA, the remedies parallel those provided under Title VII of the Civil Rights Act of 1964.Thus, employees may obtain compensatory and punitive damages, as well as attorneys' fees, against employers who violate the provisions of GINA.

GUIDANCE FOR EMPLOYERS

Despite the excitement over the recent passing of GINA, it is unlikely to have any significant immediate impact because genetic testing is not currently a very common practice. Additionally, there is considerable overlap between GINA, the Americans with Disabilities Act (ADA), and existing federal and state anti-discrimination laws. Furthermore, regulations pertinent to GINA have not yet been promulgated by any federal agency, although such regulations are mandated by the statute. If issues arise under GINA, employers should be advised to keep all information confidential and contact employment counsel immediately.

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