EEOC Issues Final Regulations On Genetic Information Nondiscrimination Act (GINA)


By: Ben Mathis and Jonathan Kandel
The Equal Employment Opportunity Commission recently issued final rules related to the Genetic Information Nondiscrimination Act of 2008 (“GINA”).  Title II of GINA, which became effective on November 21, 2009, makes it unlawful for covered employers to discriminate on the basis of “genetic information.”  In addition, covered employers are prohibited from requesting, requiring, or purchasing “genetic information.”  Title II applies to private and public employers with 15 or more employees.
The regulations address several issues, such as defining “genetic information,” adopting standards for violations of Title II, explaining the applicable record keeping requirements, and clarifying permissible practices.  The new regulations are likely to impact multiple policies and practices, including record retention procedures, wellness programs, work-related medical examinations, and Equal Employment Opportunity Policies.  Employers subject to Title II should review their policies and procedures immediately to ensure compliance as the regulations went into effect on January 10, 2011.
“Genetic information” is broadly defined to include:

  • Information about an individual’s genetic tests;
  • Information about the genetic tests of a family member;
  • Family medical history;
  • Requests for or receipt of genetic services or participation in research that includes genetic services by an individual or a family member; and
  • Genetic information about a fetus or embryo carried by an individual or a pregnant family member.

Explicitly excluded from the definition of genetic information is information about age, sex, race, or ethnicity that is not derived from a genetic test.  “Genetic tests” are tests, such as an analysis of DNA or chromosomes, used to determine whether an individual has genes related to a specific disease or condition.  The regulations include examples of tests that are and are not “genetic tests.”  For instance, HIV tests, cholesterol tests, and drug and/or alcohol screenings are not genetic tests.
As stated, Title II prohibits covered employers from discriminating on the basis of “genetic information” and from requesting, requiring, or purchasing “genetic information.”  As for discrimination, the final regulations explain that Title II prohibits the same actions as other federal employment laws (i.e. Title VII of the Civil Rights Act of 1964, as amended, the Age Discrimination in Employment Act (ADEA), and the Americans with Disabilities Act (ADA)).  The regulations specifically adopt Title VII’s standards for “adverse employment actions,” harassment, and retaliation.
In regards to requesting, requiring, or purchasing “genetic information,” the regulations provide that a “request” includes not only a “deliberate” request, but also actions that are likely to result in obtaining such information, such as conducting an internet search directed to uncovering genetic information or examining an individual’s personal effects for the purpose of obtaining genetic information.  As discussed below, medical inquires and wellness programs may also implicate the prohibition on requesting and/or requiring “genetic information.”
Record Retention
Title II of GINA requires employers to keep “genetic information” confidential.  As such, employers are required to keep “genetic information” in a confidential medical file separate from an employee’s general personnel file.  Moreover, Title II generally prohibits employers from disclosing “genetic information.”
The regulations provide practical guidance on two related issues.  First, “genetic information” may be kept in the same file as medical information subject to the Americans with Disabilities Act (ADA).  Second, “genetic information” that was acquired before November 21, 2009 does not have to be removed from an employee’s personnel file.  However, removing such information would be best practice as removal would likely prevent inadvertent disclosure.
Wellness Programs
Wellness programs raise three potential issues with Title II’s prohibition on requesting or requiring “genetic information.”  First, the regulations make clear that employers may offer monetary incentives to employees for participating in wellness programs, but not for providing “genetic information.”  As a result, employers may offer incentives to employees for completing health risk assessments, even those that contain questions about “genetic information,” as long as those questions are clearly identified and the employer alerts the employee that they do not have to answer such questions to receive the incentive.
Second, employers also may offer financial incentives to employees for participating in disease management programs or other programs that encourage healthy lifestyles.  To avoid violating Title II, those programs and incentives must be made available to employees whose current health conditions or lifestyle risk factors put them at risk of acquiring a condition, not just those employees that voluntarily provide “genetic information.”
Third, an employer that offers a wellness program is prohibited from receiving individualized “genetic information.”  As such, an employer may only receive “genetic information” in aggregate form.  The final regulations, however, clarify that an employer does not violate Title II if identification of specific individuals’ “genetic information” is possible due to the small number of participants, as long as the “genetic information” is provided in aggregate form.  Therefore, employers should notify any wellness program administrators that “genetic information” should only be provided, if at all, in aggregate form.
Medical Inquiries
Medical inquiries of all types increase the likelihood that an employer may receive “genetic information.”  The most common uses of medical inquiries are post-offer or fitness-for-duty examinations, processing requests for an accommodation under the ADA or for sick leave, and processing requests for leave under the Family Medical Leave Act (FMLA).  The regulations provide that, any time an employer makes a request for health-related information, it should specifically warn the employee and/or the health care provider from whom the information is requested that it is not seeking “genetic information” and that such information should not be provided.  The regulations even provide a model warning, which if used will protect an employer if “genetic information” is provided.  See 75 Fed. Reg. 68912, 68934 (Nov. 9, 2010) (to be codified at 29 C.F.R. § 1635.8(b)(1)(i)(B)), available at (p.23).
The regulations also provide guidance in relation to post-offer medical examinations/inquiries and fitness-for-duty examinations.  While an employer may conduct such examinations and/or inquiries – consistent with the Americans with Disabilities Act (ADA) – the employer may not request “genetic information,” which includes family medical history.  As a result, all covered employers should review their post-offer medical inquiries and remove any questions that may solicit “genetic information.  In addition, all covered employers should notify all health care providers, which are used for such examinations, that they are not to collect “genetic information” during the examinations.
Finally, the regulations specifically address medical inquiries in connection with requests for leave under the Family Medical Leave Act (FMLA).  In this regard, an employer explicitly is permitted to obtain “genetic information” in the form of family medical history when an employee requests leave to care for a family member with a serious health condition.  The regulations make clear that the exception also applies to any policy that an employer may have regardless of FMLA or state or local law.
EEO Policies
As stated above, Title II prohibits discrimination, harassment, and retaliation on the basis of “genetic information.”  Accordingly, EEO policies should be updated so that “genetic information” is listed as an additional basis for which discrimination, harassment, and retaliation is prohibited. Related to EEO policies, the regulations also reiterate that GINA, like other federal employment laws, includes a posting of notices requirement.  The EEOC’s most recent update to the “Equal Employment is the Law” poster, which was released late in 2009, includes information about GINA.  Now is a good time for covered employers to confirm that they have the most recent poster.  Poster information:  Final Regulations effective Jan. 10, 2011 at