Earlier this week, the EEOC issued its final rule implementing Title II of the Genetic Information Nondiscrimination Act of 2008 (GINA), which was published in the Federal Register on Tuesday, November 9, 2010. As promised, we are following up with our analysis of the EEOC’s new rule.

The proposed regulations were issued in March 2009 for public comment. Title II took effect almost a year ago on November 21, 2009, before the regulations were finalized. GINA prohibits the use of genetic information in employment decisions and restricts employers and other entities from requesting, requiring or purchasing genetic information. Title II also requires that genetic information be maintained as a confidential medical record, and places strict limits on its disclosure. 

GINA applies to an individual’s status as an employee, member of a labor organization, or participant in an apprenticeship program. The final rule, like the proposed rule, includes applicants and former employees in the definition of employee. 

The regulations clarify that they do not apply to an employer’s actions that do not pertain to an individual’s status as an employee, such as a law enforcement agency investigating criminal conduct, even where the subject of the investigation is an employee, or a healthcare facility providing a medical examination to an employee for the purpose of diagnosis and treatment unrelated to employment. 


GINA prohibits retaliation against individuals who complain about the acquisition, use or disclosure of genetic discrimination and provides remedies for employees whose genetic information is acquired, used, or disclosed in violation of its protections. 


The EEOC’s preamble to the final rule also recognizes the viability of claims of harassment on the basis of genetic information.



Genetic information is defined as information about: (1) an employee’s genetic tests; (2) the genetic tests of that employee’s family members; (3) family medical history; (4) an employee’s request for, or receipt of, genetic services, or the participation in clinical research that includes genetic services by the employee or a family member of the employee; or (5) the genetic information of a fetus carried by an employee or by a pregnant woman who is a family member of the employee and the genetic information of any embryo legally held by the employee or family member using an assisted reproductive technology. A family member is defined as a person who becomes related to an individual through marriage, birth, adoption, or placement for adoption.


In the final regulations “family medical history” is not limited to inheritable diseases or disorders. Rather, family medical history is broader, defined as information about the manifestation of disease or disorder in family members of the individual. 


Specific Prohibitions & Exceptions

With regard to the prohibition on requesting genetic information, the final rule provides that “requesting” genetic information includes: (1) conducting an Internet search on an individual in a way that is likely to result in obtaining genetic information; (2) actively listening to third-party conversations or searching a person’s personal effects for the purpose of obtaining genetic information; and (3) making requests for information about an individual’s current health status in a way that is likely to result in the employer obtaining genetic information. 


Although GINA prohibits employers from limiting, segregating, or classifying employees based on genetic information, the final rule clarifies that an employer will not violate this prohibition by limiting or restricting an employee’s job duties based on genetic information because the employer is required to do so by a law or regulation mandating genetic monitoring.


All six of the exceptions that we previously addressed in our March 2009 post on the proposed rules, are included in the final rule, with certain caveats. These are exceptions to the general rule prohibiting requesting, requiring, or purchasing genetic information:

(1)   where the employer inadvertently obtains genetic information (referred to as the “water cooler” exception);

(2)   where the employer offers qualifying health or genetic services, including such services offered as part of a voluntary wellness program;

(3)   where the employer requests family medical history to comply with the certification provisions of the Family and Medical Leave Act (FMLA) or state or local family and medical leave laws;

(4)   where the employer acquires genetic information from documents that are commercially and publicly available, including print and internet publications, except that an employer may not research medical databases or court records for the purpose of obtaining genetic information about an individual;

(5)   where the employer acquires genetic information for use in the genetic monitoring of the biological effects of toxic substances in the workplace, provided that the employer complies with monitoring restrictions provided in the proposed regulation; and

(6)   where an employer that conducts DNA analysis for law enforcement purposes requires genetic information of its employees, apprentices, or trainees for quality control purposes to detect sample contamination.

Regarding the first exception, the final rule explains that an employer will not violate GINA if genetic information is inadvertently obtained in a casual conversation or in response to a general question such as “how are you?” Where an employer requests or requires genetic information of the employee or family member, the prohibition does not apply if the information is acquired in response to a lawful request for medical information and the employer directed the employee not to provide genetic information. The final rule includes safe-harbor language for employers to use on request forms to direct employees not to provide genetic information. Such a warning is mandatory when an employer requests a health care professional to conduct an employment-related medical examination.


            The EEOC’s safe-harbor language is as follows:


"The Genetic Information Nondiscrimination Act of 2008 (GINA) prohibits employers and other entities covered by GINA Title II from requesting or requiring genetic information of an individual or family member of the 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 lawfully held by an individual or family member receiving assistive reproductive services."


This safe harbor applies to employers’ lawful requests for documentation: (1) where an employee requests accommodation under the Americans with Disabilities Act (ADA) (requests are lawful if the disability and/or need for accommodation is not obvious); (2) where an employee requests FMLA leave; or (3) to comply with FMLA return to work certification requirements. Again, the EEOC adds that such requests for medical information should include the warning language discussed above in order to meet the exception. 


With regard to the second exception for employer-provided wellness programs, the EEOC specifically sought comments on what constitutes a “voluntary” wellness program. The final rule concludes that employers may offer certain kinds of financial inducements to encourage participation in health or genetic services, but they may not offer an inducement for individuals to provide genetic information. Again, it is important that employers offering incentives to employees who, for example, complete a health risk assessment that includes questions about family medical history or genetic information, identify that the employee need not respond to those questions in order to receive the incentive.


The second area in which the EEOC sought comments with respect to these exceptions focused on what should be included in the “commercially and publicly available” exception, particularly with respect to blogs and social networking sites. The final rule makes the determining factor whether access to media sources, such as a database or a website, requires permission for access from a specific individual, as opposed to a media source that just requires users to obtain a username and password. Or, if access is conditioned on membership in a particular group, such as a professional organization, then the acquisition of genetic information through these sites does not fall under the “publicly available” exception.  


Finally, despite requesting comments on how the law enforcement exception should apply, the EEOC did not add additional requirements. Several comments suggested that the genetic information acquired by this exception should be destroyed after a designated time period and that samples should not be entered into any law enforcement databases. The EEOC concluded it was unnecessary to add these further limitations.


Confidentiality Requirements

Employers may maintain genetic information about an employee or member in the same file in which it maintains confidential medical information subject to the ADA; separate from personnel files and treated as a confidential medical record. Employers are not required to remove genetic information placed in personnel files prior to November 21, 2009 and will not be liable under GINA for the existence of this information in the personnel files. However, the prohibition on use and disclosure of this information still applies. As set forth in the Act, there are a number of exceptions to the prohibition on the use and disclosure of this information, such as for disclosure to the employee or family member to whom the information relates, for disclosure to health researchers, or pursuant to a court order. The exception does not apply to disclosure pursuant to discovery in litigation, though. Thus, consistent with GINA, employers should refuse to provide genetic information in response to a discovery request, subpoena or court order that does not specify that genetic information must be disclosed.