EEOC Issues Final Regulations On The Genetic Information Nondiscrimination Act
Time 6 Minute Read

The Genetic Information Nondiscrimination Act (GINA) prohibits discrimination in hiring and employment decisions based on an individual’s genetic information.  So, for example, a company cannot refuse to hire a woman because her mother had breast cancer.  The law also prohibits requesting, requiring and/or purchasing genetic information, with limited exceptions, and prohibits disclosure of genetic information.  There are many open questions about the law, such as whether companies can have wellness programs anymore (restricted genetic information is routinely gathered as part of such programs) or whether it is a violation of the law for a supervisor to learn about genetic information by accessing an employee’s page on a social networking site, or by asking innocent questions about the employee’s health, such as “How are you?.”  The EEOC issued final regulations last week in an attempt to answer these and other questions under the law.  A short discussion follows.

Voluntary Wellness Programs

The law does not prohibit wellness programs, but it places limits on them.  The law permits employers to acquire genetic information as part of a wellness program, so long as it is completely voluntary and employees cannot be penalized for failing to provide such information.  Employers are also prohibited from offering money for employees’ genetic information, but money can be offered for the completion of health risk assessments, which include questions involving genetic information.  This is permitted provided it is clear that the money will be paid regardless of whether the employees answer the genetic information questions.  For example, an employer could offer a $150 incentive to employees who complete a 100-question health risk assessment that includes 20 questions at the end about family medical history and other genetic information, so long as the employer specifies that the money will be paid to all employees who respond to the first 80 questions, regardless of whether or not they complete the remaining 20 questions on family medical history and genetic information. 

Inadvertently Acquired Genetic Information

GINA has an exception for the inadvertent receipt of “family medical history.”  The EEOC, in its commentary on the final rules, extends this exception to any genetic information an employer inadvertently receives.  Otherwise an employer could arguably be held liable for the acquisition of genetic information if, for example, it overhears a conversation where one employee tells another that her mother had a genetic test to determine whether she was at increased risk of getting breast cancer (which would constitute genetic information, but not family medical history, under the regulations).  The regulations outline a number of scenarios where this exception would be applicable, including, for example, where a supervisor learns genetic information by overhearing a conversation at the water cooler; where a supervisor receives genetic information in response to an ordinary expression of concern (e.g., “How are you?” or “Did they catch it early?” asked of an employee who was just diagnosed with cancer, provided the supervisor does not follow up with probing questions likely to result in the acquisition of genetic information); or where the supervisor inadvertently learns genetic information by accessing an employee’s page on a social networking site which the supervisor had been granted permission by the employee to access.  The EEOC also provides “safe harbor” language for use when requesting health information as part of the FMLA and/or ADA reasonable accommodation process.  If the language is used, any receipt of genetic information will be considered “inadvertent.” 

Confidential Treatment Of Genetic Information

The EEOC makes clear that, once genetic information about employees is acquired, employers that possess the information must maintain it in files that are separate from employee personnel files and treat it as confidential medical records.  Genetic information can only be disclosed in limited circumstances, such as upon receipt of an employee’s written request or in response to a court order.  Although the regulations provide that genetic information placed in personnel files prior to November 21, 2009 need not be removed, the regulations prohibit disclosure in the same manner. 

Clarification Of Definitions Used In GINA

The definitions in GINA left many open questions.  It was unclear whether former employees would be covered and/or whether persons who become dependents by adoption or placement would be covered, for example.  The EEOC has answered both questions in the affirmative.  The EEOC has made clear that former employees are covered by the law.  This will require employers to carefully protect genetic information about current and former employees.  The EEOC has also made clear that persons who become dependents by adoption or placement for adoption are considered “family members” whose genetic information falls under GINA.  While adoptees may not be genetically related to the covered employee, the EEOC reasons that “the acquisition of information about the occurrence of a disease or disorder in an applicant’s or employee’s adopted child could certainly result in the type of discrimination GINA was intended to prohibit.”

The regulations also attempt to explain more fully the term “genetic test,” providing several examples of tests that constitute genetic tests under the statute (for example, amniocentesis and other tests used to determine the presence of genetic abnormalities in a fetus during pregnancy, testing that reveals family relationships, such as paternity tests, and testing to determine whether an individual has the BRCA1 or BRCA2 variant indicating a predisposition to breast cancer), as well as several examples of tests that do not constitute genetic tests under the statute (for example, cholesterol tests, tests for the presence of drugs or alcohol, and HIV tests). 

Next Steps For Employers

Employers are advised to immediately take the following steps to ensure compliance with GINA and its implementing regulations: 

  • revise EEO policies to prohibit discrimination based on genetic information;
  • train supervisors, human resources, and other hiring personnel regarding GINA compliance;
  • conduct an audit of any voluntary wellness programs to ensure that their policies with respect to genetic information comply with GINA;
  • revise any form requests for medical information to include the “safe harbor” language provided in the regulations; and
  • remove any genetic information from personnel files and place it in confidential medical files.


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