EEOC Issues Final Regulations Implementing “GINA”

In the Press · November 23, 2010

On November 9, 2010, the Equal Employment Opportunity Commission (EEOC) issued final regulations implementing Title II of the Genetic Information Nondiscrimination Act of 2008 (GINA). The provisions in GINA prohibit employers from using genetic information in making employment decisions and restrict them from obtaining or disclosing their employees’ genetic information. The regulations, which become effective on January 10, 2011, expand upon and clarify the statute, which has been in effect since November 21, 2009. As described below, the regulations may also be useful in helping employers comply with a similar law in Massachusetts.

What is Genetic Information?

While there are slight differences in how the term is defined under federal and Massachusetts law, "genetic information" generally includes information about an individual’s and his or her family’s genetic tests, medical history, and similar information regarding an individual or his or her family member’s fetus or embryo. 

GINA defines "family member" to include up to fourth-degree relatives such as an individual’s great-great-grandparents or grandchildren and first cousins once removed (i.e., the children of an individual’s first cousins) and dependents by adoption or placement for adoption. "Family medical history" includes information about the manifestation of disease or disorder in family members of an individual. 

Who Must Comply With the Law?

GINA applies to employers with 15 or more employees. The parallel Massachusetts law applies to employers with 6 or more employees.             

Prohibited Practices

GINA makes it unlawful for an employer to discriminate against an individual on the basis of genetic information with regard to hiring, discharge, compensation, terms and conditions, or privileges of employment. GINA also makes it unlawful to retaliate against any individual for having opposed GINA discrimination or having participated in an investigation or hearing at the EEOC concerning discrimination under GINA. These prohibitions mirror those in Title VII of the Civil Rights Act of 1964, which bars discrimination and retaliation on the basis of race, gender, national origin, and other protected classes.

GINA imposes additional requirements that are more expansive than those found in the anti-discrimination laws generally. Employers need to pay special attention to the following GINA prohibitions:

Prohibition Against Acquiring Genetic Information

Employers cannot "request, require, or purchase" genetic information except in certain limited circumstances.  

NOTE:  A "request" includes not only a "deliberate" request, but also actions that are likely to result in obtaining information, such as conducting an Internet search directed to uncovering genetic information, actively listening to third-party conversations, or examining an individual’s personal effects for the purpose of obtaining genetic information, as well as searching in scientific or medical databases. The regulations differentiate between these unlawful acts and so-called "inadvertent" lawful requests, such as overhearing "water cooler" conversations, casual questions such as "how are you feeling," and coincidentally learning genetic information in newspapers and magazines, or on the Internet, television, and the like. With regard to accessing an employee’s social networking site, the employer must have prior permission from the employee. 

The narrow exceptions to the ban on acquiring genetic information include the following: 

  • Employers may obtain aggregate information about employees who are enrolled in voluntary wellness programs, provided the employees sign a GINA-compliant release 
  • Employers may engage in genetic monitoring of the biological effects of certain toxic substances in the workplace, subject to various requirements 
  • Law enforcement or forensic labs may request or require genetic information of employees, apprentices, or trainees to the extent necessary for use in quality control to detect sample contamination

Communications With Health Care Professionals

Communications with health care professionals pose special problems under GINA. Employers often need to obtain medical information in the course of processing requests under the Family Medical Leave Act, responding to reasonable accommodation requests under the Americans with Disabilities Act, or conducting medical examinations to assess fitness for the job after making a conditional job offer. In these cases, employers need to be careful to make sure that they are not unlawfully requesting genetic information. To avoid this problem, the regulations advise the following:

First, in situations where employers send employees or applicants (with a conditional job offer) to company-related health care professionals to assess fitness for duty or ability to perform, employers must advise the health care professionals not to collect genetic information, including family medical history. 

Second, in situations where employers request medical information, such as in processing FMLA requests or requests for accommodation, employers need to be careful in how they phrase their requests to avoid asking for genetic information. These scenarios can be difficult to navigate — some requests may inadvertently encompass genetic information and violate GINA. 

NOTE: The prohibition against obtaining genetic information about family members  does not apply where an employee is seeking time off to care for a sick family member and the employer requires all employees to provide documentation to substantiate such requests. 

EEOC’s new regulations have addressed this problem by providing a model warning that employers can use in communications with health care professionals. Use of this language, which explicitly informs health care professionals not to provide genetic information, shields employers from claims that they wrongly asked for protected information:   

The Genetic Information Nondiscrimination Act of 2009 (GINA) prohibits employers and other entities covered by GINA Title II from requesting or requiring genetic information of an individual or family member of an individual, except as specifically allowed by this law.  To comply with this law, we are asking that you not provide any genetic information when responding to this request for medical information. "Genetic information" as defined by GINA, includes an individual’s family medical history, the results of an individual’s or family member’s genetic tests, the fact that an individual or an individual’s family member sought or received genetic services, and genetic information of a fetus carried by an individual or an individual’s family member or an embryo held by an individual or family member receiving assistive reproductive services."

Prohibition Against Disclosure

GINA requires employers to keep genetic information confidential in the same way as they would other medical information. Written information needs to be kept in a separate medical folder, not in a regular personnel file. Employers need not go back and review old personnel files to remove data added to the files prior to GINA’s effective date, but must use caution not to disclose such data. 

Genetic information may be disclosed only under the following circumstances:

  • To the person to whom it relates, if the individual requests it in writing
  • To an occupational or health researcher if in compliance with applicable regulations
  • In compliance with a court order
  • To government officials investigating compliance with GINA
  • If consistent with FMLA or similar local laws
  • To federal, state, or local public health officials in connection with a contagious disease that presents an imminent hazard of death or life threatening illness

Recommended Action Steps for Employers

  • Incorporate GINA into anti-discrimination and retaliation personnel policies, training, and posters. Click here for an updated EEOC poster.
  • Train managers and supervisors concerning GINA’s strict prohibitions against the acquisition of genetic information and develop proper policies and procedures around activities that are likely to cause the disclosure of genetic information, even if not deliberate, such as applicant Internet searches.
  • Add GINA’s model safe harbor language to all requests for medical information from medical professionals. 
  • Ensure that any lawfully obtained genetic information is treated confidentially by keeping it in a separate medical file, not within the individual’s personnel records.