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The Surprising Breadth of GINA’s Protections

Publication: Employment Trends: Spring 2009 May 18, 2009 Author: David Ball

Nearly a year ago, on May 21, 2008, then-President Bush signed the Genetic Information Nondiscrimination Act of 2008 (GINA) into law. GINA does not take effect, however, until Nov. 21, 2009, 18 months after enactment. The challenge for employers is to not let the effective date arrive without first gaining a proper understanding of the Act and its potential impact in the workplace and then taking the steps necessary to minimize the liability risks that GINA presents. Part of this challenge is to understand that GINA defines "genetic information" very broadly.

In advance of GINA's November 2009 effective date, the Equal Employment Opportunity Commission (EEOC) has issued a proposed rule implementing the sections of GINA that apply to the workplace. The EEOC's proposed rule is out for public comment until May 1, 2009. The proposed rule notes that GINA includes six terms that are not found in any of the other employment discrimination statutes that the EEOC enforces. These six terms are:

  • "family member"
  • "family medical history"
  • "genetic information"
  • "genetic monitoring"
  • "genetic services"
  • "genetic test"

The meanings that the proposed rule ascribes to most of these terms seem fairly straight-forward. The term whose definition would seem to have the most potential for surprise is the broadly-defined term "genetic information." According to the proposed rule, and not surprisingly, genetic information includes information about an individual's genetic tests; information about the genetic tests of that individual's family members; and information about whether the individual has requested or received genetic services, including in the clinical research context.

In addition to these non-surprising definitions, however, the proposed rule adds that genetic information includes information about "the manifestation of disease or disorder in family members of the individual." Notice that the word "genetic" does not appear in this last definition of genetic information. This broadens considerably the scope of medical information that will meet GINA's definition of this term. If the employer comes to have information about how a particular disease or disorder has been manifested in an individual's family - even if that information is not in the form of a genetic test or a record of genetic treatment, but is simply information about a disease that is thought to have a genetic basis - it may still constitute genetic information for purposes of GINA. For example, if an employer comes to learn that breast cancer runs in a particular employee's family, that information - despite that the information itself is not directly about someone's genes, but because breast cancer can have a genetic basis - may trigger GINA's protections against discrimination in the workplace.

As more and more diseases are determined to have a genetic basis, it would seem that the proposed rule points us toward a situation in which just about any type of medical information could meet GINA's definition of genetic information. It will be important for employers to stay tuned as the proposed rule goes into effect, and to note any changes that may be made to this definition. If the proposed rule's interpretation of this definition remains unchanged, employers will need to reconsider their policies in terms of gathering and retaining medical information about diseases. Fortunately, GINA exempts employers for liability due to information that they inadvertently request or obtain, but as more and more diseases are found to have a genetic basis it could be nearly impossible to completely avoid obtaining genetic information in this broad sense.

At this point, according to the proposed rule, the scope of this definition means that employers need to refrain from asking individuals for their family medical history as part of a medical examination, due to the risk that they will be provided information about the manifestation of genetically-based disease in that individual's family in response. And while the Americans with Disabilities Act permits employers to obtain medical information, including genetic information, from post-offer job applicants, as the EEOC interprets GINA this will no longer be permitted. Further, in the EEOC's view employers will also be prohibited from obtaining genetic information, whether in the form of family medical history or in the more obvious forms of genetic test results and records of genetic services, in the course of requiring medical certification of fitness for duty.

For further information about the coverage and impact of the Genetic Information Nondiscrimination Act of 2008 in the workplace, please contact David Ball or any member of SZD's Labor and Employment Practice Group.

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