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Legal Updates

Employers Must Act To Comply With Genetic Information Nondiscrimination Regulations

The Equal Employment Opportunity Commission’s final regulations on the Genetic Information Nondiscrimination Act (“GINA”) require employers to take specific and  immediate steps to prevent discrimination on the basis of genetic information.

In particular, employers with 15 or more employees must ensure that their Equal Employment Opportunity (“EEO”) policies include genetic information as a protected category.  Additionally, such employers must refrain from requesting, requiring or purchasing genetic information concerning their employees.

Fortunately, the final regulations help to delineate what is permissible and impermissible under the statute—and provide certain “safe harbors” for employers.  We encourage employers to review and revise their applicable policies, practices and forms so as to avail themselves of these protections and thereby minimize their potential liability under this complex new law.

What Is Genetic Information?

Because GINA creates new obligations for employers relative to the genetic information of employees, and in some cases, the family members of employees, it is critical for employers to understand what “genetic information” is.  Genetic information is defined as:

(1) an employee’s genetic tests;

(2) the genetic tests of an employee’s family members (defined as dependents related to the employee through marriage, birth, adoption, or placement for adoption);

(3) family medical history (including information about any disease or disorder of family members, not just inheritable diseases);

(4) an employee’s request for, or receipt of, genetic services, or an employee’s (or an employee’s family member’s) participation in clinical research that includes genetic services; and

(5) genetic information of a fetus or embryo of an employee or member of an employee’s family.

GINA Prohibits Employment Discrimination Based On Genetic Information

GINA prohibits employment discrimination based on genetic information in a manner similar to how other federal statutes prohibit employment discrimination based on other protected characteristics (e.g., race, national origin, religion and gender).  In this regard, GINA prohibits employers from:

  • Discriminating against employees on the basis of genetic information in regard to hiring, discharge, compensation, terms, conditions, or privileges of employment;
  • Retaliating against employees who complain about the acquisition, use, or disclosure of genetic information;
  • Limiting, segregating, or classifying employees based on genetic conditions (however, employers may limit or restrict an employee’s job duties based on genetic information if the employer is required to do so by a law or regulation mandating genetic monitoring, such as regulations administered by the Occupational Safety and Health Administration); and
  • Harassing employees based on genetic information.

GINA, however, does not create a cause of action on a disparate impact theory .  Thus, employees who assert GINA claims must show that they were treated differently because of their genetic information.  They cannot base their claims on the theory that the employer’s policies or practices, while facially neutral, caused a disproportionate impact on employees with certain genetic characteristics.

GINA Prohibits Employers From Requesting, Requiring Or Purchasing Genetic Information

With certain important exceptions (discussed below), GINA also prohibits employers from requesting, requiring or purchasing an employee’s genetic information.  The prohibition on “requesting” genetic information merits particular attention, as “requesting” is defined broadly to include conduct other than making a formal request.

The final regulations clarify that “requesting” includes conducting internet searches likely to result in obtaining genetic information; actively listening to third-party conversations in order to obtain genetic information; searching a person’s personal effects in order to obtain genetic information; and requesting information about an individual’s current health status in a way that is likely to result in the employer obtaining genetic information.

Employers should carefully review their present policies and practices to ensure that their supervisors, managers and human-resources personnel avoid conduct that may arguably fall into GINA’s broad definition of “requesting.”  Corresponding training sessions are also recommended.

Exceptions And Safe Harbors To The GINA Prohibitions

Fortunately, GINA contains six exceptions to the prohibitions against requesting, requiring or purchasing employees’ genetic information, as well as certain corresponding safe harbors, as set forth below.

  1. It is not a violation of GINA if an employer inadvertently obtains genetic information, as illustrated in the following examples:
  • It is not a violation of GINA when an employer obtains genetic information by accident, such as when a manager asks an employee “how are you,” and the employee’s response includes family medical history (e.g., “not so good, because I just learned that my mother has breast cancer”).
  • It is not a violation of GINA when an employer receives genetic information as part of: (1) a request for accommodation under the ADA; (2) a request for leave under the Family and Medical Leave Act (“FMLA”), state or local family and medical leave law, or a voluntary family and medical leave policy; and (3) a return to work certification under the FMLA, state or local family and medical leave law, or a voluntary family and medical leave policy, provided that the employer directs the employee not to include family medical history or other genetic information in making such requests or providing such documentation (see model safe-harbor language below).
  • It is not a violation of GINA when an employer receives genetic information in response to a request for medical information from the employee, or pursuant to a physical examination of the employee, provided that the employer directs the employee and/or the medical provider not to provide genetic information in responding to the request or reporting the results of the examination (see model safe-harbor language below).
  • Model Safe-Harbor Language:  As noted, the final regulations provide model safe-harbor language that employers should include on any request for medical information and on any form that might otherwise elicit medical information (such as a form provided to employees for purposes of requesting a reasonable accommodation under the ADA).  The 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.

  1. It is not a violation of GINA when an employer requests family medical history in connection with an employee’s request for leave to care for a sick family member as part of the certification provisions of the Family and Medical Leave Act (“FMLA”), state or local family and medical leave laws, or a voluntary family and medical leave policy.  Thus, an employer may continue to request a medical certification showing that the employee’s family member has a “serious health condition” or “serious injury or illness,” without violating GINA, even though the employer will necessarily receive “family medical history.”
  2. It is not a violation of GINA when an employer obtains genetic information in connection with the administration of qualifying health or genetic services, such as a voluntary wellness program, provided that the employer institutes certain safeguards.  In this regard, an employer may request genetic information, including family medical history, as part of a qualifying health or wellness program, but may not require an employee to disclose such information.  As to this point, the final regulations provide the following guidance:
  • An employer may use a questionnaire or assessment that includes questions regarding family medical history or other genetic information, but (a) the employer must inform the employee, in easily understandable language, that he or she may provide genetic information but is not required to disclose that information in order to participate in the program and receive any related incentives from the employer; (b) the employer must obtain a voluntary, written authorization from the employee, prior to the employee providing the genetic information, that describes the genetic information requested, the purpose for which it will be used, and the restrictions on disclosure of genetic information; and (c) the genetic information should be disclosed only to a “licensed health care professional or board certified genetic counselor involved in providing such [qualifying health or wellness] services.”
  • Similarly, any genetic information obtained by a provider pursuant to a voluntary wellness program should not be shared with the employer, except in the aggregate.
  1. It is not a violation of GINA when an employer acquires genetic information from documents that are commercially and publicly available, including print and internet publications, provided that an employer may not specifically research medical or court databases for the purposes of obtaining an employee’s genetic information.  Notably, the final regulations differentiate between publicly available documents (which may simply require the input of a username and password) and documents that cannot be accessed without permission from a specific individual or membership in a particular group.  For example, an article on WSJ.com is considered to be publicly available, even if access requires the input of a username and password, but a document available only to the members of a trade association is not considered to be publicly available.
  2. It is not a violation of GINA when an 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 certain monitoring restrictions.
  3. It is not a violation of GINA when an employer requires genetic information from its employees, apprentices, or trainees for quality control of DNA analysis for law enforcement purposes.

Please note that any genetic information that an employer lawfully obtains must be maintained as a confidential medical record, separate from personnel files.  

Recommendations For Employers

We recommend that employers revise policies, practices, and related employee forms to ensure compliance with GINA.  Generally, employers should:

  • Revise EEO policies to inform employees that discrimination and harassment based on genetic information is prohibited;
  • Include genetic information discrimination in training seminars about discrimination and harassment;
  • Ensure that precautions are taken when requesting family medical history or other genetic information as part of a voluntary wellness program, including making the required disclosures and obtaining the required authorizations;
  • Revise forms requesting or likely to elicit medical information (such as forms concerning requests for accommodations, family and medical leaves, and pre-employment or annual physical examinations) to include the safe-harbor language contained in the final regulations; and
  • Provide training to human resources professionals and other employees who could inadvertently request genetic information.

As always, please contact the Firm if you have questions or if we can assist in helping your organization achieve compliance.