On November 9, 2010, the Equal Employment Opportunity Commission (EEOC) published its final regulations implementing Title II of the Genetic Information Nondiscrimination Act of 2008 (GINA). The final regulations are scheduled to take effect on January 10, 2011.

President George W. Bush signed GINA into law on May 21, 2008. GINA was founded on the concern that advancements in the field of genetics and the decoding of the human genome could lead to the misuse of genetic information to discriminate against individuals in health insurance and employment.

To this end, Title I of GINA generally prohibits discrimination in group premiums and places limits on the use of genetic testing and collection of genetic information in group health plan coverage. Title II of GINA, in contrast, prohibits the acquisition and use of genetic information in the employment context.

The EEOC issued proposed GINA Title II regulations on March 2, 2009 and sought public comments. After receiving and considering comments by 43 individuals, groups and organizations, and coordinating with other agencies, the EEOC unanimously approved the final GINA Title II regulations on October 29, 2010.

The new regulations contain several, key changes to the proposed regulations and clarify the circumstances in which employers may be liable for acquiring “genetic information.” Genetic information broadly includes information about an individual or his or her family member’s genetic tests, “family medical history,” requests for or receipt of genetic services, or the genetic information of a fetus or embryo of an individual or the individual’s family member.

Exceptions to Prohibition against Acquiring Genetic Information

GINA prohibits employers from requesting, requiring, or purchasing the genetic information of an individual or an individual’s family member. The final regulations outline six exceptions to the general prohibition, some of the more important of which include the following:

Requests for Medical Information

Under the final regulations, employers that inadvertently acquire genetic information pursuant to lawful requests for medical information will not violate Title II if they direct the health care provider not to provide genetic information. To assist employers in meeting this exception, the final regulations offer specific language for employers to use in demonstrating that the acquisition of genetic information was inadvertent:

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 serves.

An employer’s failure to use this “safe harbor” language will not automatically prevent an employer from establishing that the receipt of genetic information was inadvertent (for example, when an employer’s request for medical information was specifically tailored but the health care provider’s response was overly broad).

The “Water Cooler” Problem

The final regulations also outline the “water cooler exception.” In enacting GINA, Congress was concerned that casual conversation between co-workers regarding health could unnecessarily lead to federal litigation. To this end, the final regulations confirm that an employer will not violate Title II where a manager or supervisor overhears a conversation about genetic information between the individual and others. Likewise, if a manager or supervisor learns of genetic information in casual conversation directly with the individual or a third party, the employer will not violate Title II. The final regulations warn, however, that if the manager probes further and asks the individual questions likely to result in the acquisition of genetic information, the inadvertent acquisition exception will no longer apply.

GINA and Social Media

With the social media explosion, many commentators were concerned about GINA liability based on managers learning of genetic information about individuals from social networking sites, such as where a manager and employee are “friends” on Facebook. The final regulations confirm that an employer will not be liable under Title II where a manager or supervisor inadvertently learns of genetic information from a social media platform to which he or she was given access by the creator of the profile at issue (typically the employee).

Voluntary Wellness Programs

Many employers offer employees wellness programs designed to enhance the health of employees. The acquisition of genetic information pursuant to a voluntary wellness program will not violate Title II if: (a) genetic information is provided voluntarily by the individual; (b) the individual provides prior knowing, voluntary and written authorization; and (c) individually identifiable genetic information is provided only to the individual or qualified health personnel, as applicable, and not to the employer. Furthermore, although an employer may not offer a financial inducement to employees to provide genetic information, it may offer such inducements for health risk assessments that include questions about family medical history so long as the employer makes clear that the inducement is available irrespective of whether the questions about family medical history are answered.

Medical Examinations Relating to Employment

One of the key pronouncements in the final regulations relates to employer requests for medical examinations. The final rule makes clear that the prohibition against acquiring family medical history applies to medical examinations related to employment. Thus, employers are required to specifically advise health care providers not to collect genetic information, including family medical history, as part of a medical examination intended to determine the individual’s ability to perform a job. As a result, employer forms used in requesting medical information should expressly advise health care providers that genetic information is not requested by the employer.

Practical Implications for Employers

Violations of Title II may be costly. Remedies available for GINA violations include compensatory and punitive damages, reasonable attorneys’ (and expert) fees, and injunctive relief (e.g., reinstatement, hiring, and back pay). As a result, employers should take proactive steps to avoid GINA liability. Recommended steps include reviewing and revising policies and procedures to ensure compliance with GINA, revising medical request forms to include the Title II “safe harbor” language for requests for medical information, and training managers and supervisors on the vast scope of, and dangers of violating, GINA.


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