BACKGROUND

President George W. Bush signed the Genetic Information Nondiscrimination Act ("GINA") of 2008 into law on May 21, 2008. GINA's employment provisions took effect on November 21, 2009. The Equal Employment Opportunity Commission ("EEOC") published its final regulations implementing Title II of GINA on November 9, 2010. Generally, GINA prohibits employers from utilizing genetic information to make decisions regarding health insurance and employment, and it restricts both the acquisition and the disclosure of genetic information. GINA applies to public and private sector employers with 15 or more employees. It also covers applicants, employees, and, as the final regulations make clear, former employees. The EEOC's final regulations provide some clarity regarding the definitions and application of GINA, but not all is good news for employers.

DEFINITIONS

GINA defines genetic information as 1) an employee's genetic tests; 2) the genetic tests of the employee's family members; and 3) "the manifestations of a disease or disorder in family members of such individual." The regulations clarify that this includes family medical history. The provisions related to family members are problematic, given that "family members" includes dependents (persons who are or become related to an individual through marriage, birth, adoption or placement for adoption) and first, second-, third- and fourth-degree relatives. This is obviously very broad and includes an employee's parents, siblings, children, grandchildren, uncles, aunts, nephews, nieces, half-siblings, great-grandparents, great-grandchildren, great uncles, great aunts, first cousins, great-great grandparents and first cousins once removed (children of a first cousin).

It is notable that the EEOC removed the term "deliberate" from Section 1635.1 of the proposed regulations. The proposed regulations stated that one of the purposes of GINA was to prevent the "deliberate acquisition" of genetic information. The EEOC stated it agreed with commentators "that a covered entity may violate GINA without a specific intent to acquire genetic information." This makes clear that employers may be liable even if they obtain genetic information by accident.

ACQUIRING GENETIC INFORMATION

As noted, GINA prohibits employers from requesting, purchasing or acquiring genetic information about an employee or an employee's family member. The final regulations state the request of genetic information:

includes conducting an Internet search on an individual in a way that is likely to result in a covered entity obtaining genetic information; actively listening to third-party conversations or searching an individual's personal effects for the purpose of obtaining genetic information; and making requests for information about an individual's current health status in a way that is likely to result in a covered entity obtaining genetic information.

In today's world, individuals regularly disclose personal information via social media websites. What happens if an employer accidentally obtains genetic information from an employee's page on a social media website? Fortunately, the final regulations explain six exceptions that will not result in liability for an employer:

  1. Inadvertently Requesting or Requiring Genetic Information;  
  2. Health or Genetic Services;  
  3. Family Medical Leave Act;  
  4. Commercially and Publicly Available Information;  
  5. Genetic Monitoring; and,  
  6. DNA Testing for Law Enforcement or Human Remains Identification Purposes.

Inadvertently Requesting or Requiring Genetic Information

The so-called "water cooler" exception acknowledges that an employer may overhear employees discussing the health of a family member and prevent such instances from resulting in liability. This exception also applies to social media. The regulations state, "In other words, this exception applies where a manager, supervisor, union representative or employment agency representative inadvertently learns genetic information from a social media platform which he or she was given permission to access by the creator of the profile at issue (e.g., where a supervisor and employee are connected on a social networking site and the employee provides family medical history on his page)." An employer will not be liable if it inadvertently obtains genetic information under this exception; however, employers can still be found liable if they use that genetic information to discriminate against an employee, regardless of how the information was obtained. Now, if an employer overhears a conversation regarding the health of an employee's family member, the employer may not then ask follow-up questions, such as whether other family members are likely to have the condition or whether the employee has been tested for the condition.

Health or Genetic Services

GINA permits employers to acquire genetic information when health or genetic services are offered by the employer, such as with a wellness program, if the individual provides prior knowing, voluntary and written authorization. In other words, the employer must use an authorization form that is written in language reasonably likely to be understood by the individual from whom the information is sought; the employer describes the information being requested; and the employer describes the safeguards in place to protect against unlawful disclosure. Additionally, the genetic information received by the employer must be related to the program and must be "in aggregate terms that do not disclose the identity of specific [individuals]." The program offered by the employer must also be voluntary. Commentators raised the issue of whether an employer's financial incentives offered to employees to participate in a wellness program alters the voluntary nature of the program. The EEOC permits employers to offer financial inducements to participate in health or genetic services, as long as the financial inducement is not offered as an inducement to provide genetic information.

Family Medical Leave Act

GINA provides an exception when employers obtain family medical histories from an employee requesting leave to care for a family member. Unlike the prior exceptions, the disclosure of the genetic information is not inadvertent in such instances. This exception also applies to employers not covered by FMLA, but who have a policy allowing leave to care for ill family members, as long as the policy requires all employees seeking leave to provide documentation regarding the health of the family member.

Commercially and Publicly Available Information

GINA provides an exception for commercially and publicly available information. This exception applies to information obtained from newspapers, magazines, periodicals, books, the Internet, television and movies. The example used by the EEOC is of an employer that learns an employee has the breast cancer gene by reading a newspaper article profiling several women living with the knowledge they have the gene. This exception does not apply to genetic information contained in medical databases or court records and does not apply to media sources where access is limited to individuals granted permission or to individuals in a particular group. This exception also does not apply if an employer accesses a commercially and publicly available source with the intent of obtaining genetic information.

Genetic Monitoring

Subject to limitations, employers may engage in the genetic monitoring of the biological effects of toxic substances in the workplace. In order to qualify for this exception, an employer must provide written notice of the monitoring and, where the monitoring is not specifically required by federal or state law or regulation, must obtain an individual's prior knowing, written and voluntary authorization. All monitoring must also comply with the applicable provisions of the law and the implementing regulations, including those enacted subsequent to the Occupational Safety and Health Act, the Federal Mine Safety and Health Act, and the Atomic Energy Act of 1954. The results of any monitoring must be provided to the individuals, and the employer is only permitted to receive results in aggregate terms that do not disclose the identity of specific individuals.

DNA Testing for Law Enforcement or Human Remains Identification

A narrow exception applies to employers that engage in DNA testing for law enforcement purposes, such as with a forensic lab, or for human remains identification. GINA allows these entities to request or require genetic information of their employees, apprentices or trainees, "but only to the extent that such genetic information is used for analysis of DNA identification markers for quality control to detect sample contamination."

SAFE HARBOR AND WARNINGS

The EEOC added language to the final regulations that provides a "safe harbor" for the employer when genetic information is received in response to a lawful request for medical information. If, for example, an employer requesting health-related information from an employee provides a warning not to provide genetic information, the employer may take advantage of the inadvertent disclosure exception if it nevertheless receives genetic information.

The final regulations recommend the following language for an employer to use to provide such notice:

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 employees or their family members. In order 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.

Alternative language may also be used as long as individuals and health care providers are informed that genetic information should not be provided. For small business that do not utilize forms when requesting medical information, this warning may be conveyed verbally. Of course, written documentation is always preferred.

The proposed warning offered by the EEOC is not mandatory unless an employer wishes to take advantage of the safe harbor provisions. A warning is, however, mandatory in all cases where an employer requests a health care professional to conduct an employment-related medical examination on the employer's behalf. Further, it is recommended that employers use the warning when requesting medical documentation as part of the reasonable accommodation process under the Americans with Disabilities Act ("ADA").

DISCLOSURE OF GENETIC INFORMATION

Even if genetic information is lawfully obtained, GINA still restricts its disclosure. Employers are required to keep genetic information confidential, and if the information is in writing, it must be kept separate from other personnel information. Generally, the requirements for storing medical information under the ADA are applicable to GINA. There are, of course, exceptions to the non-disclosure of genetic information.

An employer may disclose genetic information to the individual employee if the employee requests such disclosure in writing. Genetic information may be provided to an occupation or health researcher if the research is conducted in compliance with federal regulations. Employers may also disclose genetic information pursuant to a court order, but if the employee is unaware of the court order, then the employer must inform the employee of the court order and of what information was disclosed. This exception does not apply to discovery requests and subpoenas that are not subject to an order specifically stating that genetic information must be disclosed. This provision can cause difficulty for employers when the individual assigned to respond to subpoenas and discovery requests is not familiar with GINA. Not surprisingly, employers are permitted to disclose genetic information to federal investigators who are investigating compliance with GINA. Disclosure consistent with the requirements of FMLA is also permitted. The last exception permits employers to disclose family or medical history 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.

DISCRIMINATION BASED ON GENETIC INFORMATION

GINA prohibits an employer from making employment decisions based on genetic information. The familiar analysis employed by courts to construe claims brought under Title VII is applicable to claims brought pursuant to GINA, with the exception that employers cannot avail themselves of the bona fide occupational qualifications defense and that disparate impact claims are not available under GINA. Similar to Title VII, violations of GINA can result in compensatory and punitive damages.

CONCLUSION

When enacting GINA, Congress noted, "New knowledge about genetics may allow for the development of better therapies that are more effective against disease or have fewer side effects than current treatments. These advances give rise to the potential misuse of genetic information to discriminate in health insurance and employment." As science and medicine evolve, so too will the application of GINA. Courts have not had many opportunities to address claims brought pursuant to GINA, but this law was enacted with an eye toward the future. It would be wise for employers to amend their handbooks, policies and procedures to ensure compliance with GINA. Language should be included stating that the employer prohibits both discrimination related to genetic information and retaliation related to actions taken in accordance with GINA. Additionally, utilizing the warning recommended by the EEOC is strongly encouraged in order to take advantage of the safe harbor provisions. Most importantly, train your supervisors and human resource personnel to insure compliance with GINA.