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GINA Decoded: Breaking Down the New EEOC Regulations
December 31, 1969
It's been a long time coming, but the EEOC has finally published the official regulations for Title II of the Genetic Information Nondiscrimination Act (GINA). (Title I addresses non-discrimination in the context of health insurance, and regulations for that Title will be issued by the Departments of Labor, Health and Human Services, and Treasury.) GINA was originally  enacted on May 21, 2008, by, President George W. Bush, and became effective November 21, 2009.
The EEOC issued proposed regulations in March 2009, and asked for public comments. Forty-three comments were received, and, based on those responses, the EEOC issued Final Regulations on November 9, 2010 (29 C.F.R. §§ 1635 et seq., published in the Federal Register, Vol. 75, No. 216 beginning at 68912). What follow are some of the highlights of the new Regulations.
A GINA Primer
Broadly, GINA has three purposes: to prohibit discrimination on the basis of genetic information, to restrict employer requests for such information, and to limit the disclosure of genetic information by employers. The introductory comments recognize that medical advancements also give rise to "the potential misuse of genetic information to discriminate in health insurance and employment."
For terms such as "employee" and "employer," as well as others common in discrimination law, GINA adopts definitions found elsewhere in federal law. Four new terms – genetic information, genetic monitoring, genetic services, and genetic test – are defined without reference to other statutes.
Sections 202 through 205 prohibit employers, employment agencies, labor organizations and training programs, respectively, from discriminating on the basis of genetic information, and make it unlawful for them to request, require or purchase genetic information. Thereafter, GINA provides a series of exceptions to the "request, require, or purchase" prohibition, most of which are common to all of the sections.
Section 206 protects the confidentiality of genetic information, limiting employers and others from disclosing that information except in limited circumstances. Section 207 governs the remedies that are available for GINA violations, again electing to adopt most of those remedies from other statutes. It also includes an anti-retaliation provision. Finally, Section 210 excludes the use, acquisition or disclosure of non-genetic medical information from GINA coverage.
Definitions Finalized by the EEOC
"Covered Entity" Definition. The EEOC added a term, "covered entity," which encompasses employers, employment agencies, labor organizations and training programs. Since GINA contains several provisions common to each of the above entities, the phrase helps to streamline the Regulations. The EEOC dismissed some of the concerns raised by public comments that employers would confuse this phrase with its use in other statutes, such as the ADA or HIPPA.

"Manifestation" and "Manifested" Redefined. Information regarding "manifested" conditions is not genetic information, and is therefore excluded from GINA liability, under Section 210. Because genetic information is frequently used as part of a diagnosis for some illnesses, however, the line between genetic information and manifested conditions was vague. The EEOC defined "manifestation" and "manifested" to make clear that a "diagnosis" based solely on genetic information is not a manifested condition. Where genetic testing is combined with other symptoms or signs to result in a diagnosis, however, the condition is considered "manifested" under GINA and the employer is exempted under Section 210.
Good News for Employers
No individual liability for corporate employees. Although the Regulations do not specifically speak to this point, the EEOC concluded in its supplementary information that it was "not necessary" to explicitly eliminate individual liability. Rather, GINA's adoption of the "employer" definition from Title VII fulfills this purpose. As Title VII's "employer" definition has been repeatedly held to not extend to individual liability, GINA's definition of "employer" cannot encompass individual liability.
Inadvertence Exception Extended. The first exception to the "request, require or purchase" prohibition under GINA holds that no violation occurs when an employer "inadvertently requests or requires family medical history of the employer or family member of the employer."  As written, the "inadvertence" exception covered only family medical history. The EEOC determined, however, that "it is consistent with Congress's intent to extend the exception to any genetic information that an employer inadvertently acquires." Analogizing this to "water cooler" conversation, the EEOC acknowledged that employers may unwittingly learn about an individual's personal genetic testing in the same way it might learn about an employee's personal or familial health – in the course of casual conversation. Hence, it extended the statutory protections to such situations.
"Safe Harbor" Provision Added. In conjunction with the inadvertence exception discussed above, the EEOC provided language that employers can include when requesting medical information. If included, the language presumptively provides notice to those from whom information is sought that the employer is not requesting genetic information. If notice is given, but genetic information is still supplied, employers are protected from being charged with a GINA violation.
Health and Genetic Services. Recognizing that employers have a strong interest in encouraging employee participation in health and wellness programs, GINA includes an exception to the "request, require, or purchase" prohibition when employees participate in employer-offered programs. The EEOC Regulations conclude that, while written authorization to participate in the programs may be accomplished electronically, such authorization must be signed before an employee can provide any genetic or family medical history. Additionally, the wellness programs may provide employers with aggregate information collected for the studies, although they are still prohibited from accessing individual information. Finally, the EEOC clarified that these programs must be inclusive – not only must they be open to people regardless of genetic predispositions to certain problems, but also any incentives provided in conjunction with these programs cannot be tied to providing genetic information, and must be available to all.
Potential Problem Areas for Employers
No Specific Intent Requirement. The EEOC concluded that the specific intent to acquire genetic information is not necessary to violate GINA. Rather, employers can violate GINA simply by engaging in activities where there is a heightened risk of acquiring genetic information. Employers must therefore be very cautious to avoid situations in which such information is expected to be more readily available, and take proactive steps to avoid accidentally receiving genetic information, such as warning employees not to include genetic information when providing documentation of a manifested illness.
Former Employees Covered. GINA applies to both current and former employees. The Regulations borrow their definition of "employee" from Title VII, as interpreted by the Supreme Court in Robinson v. Shell Oil Co., and the EEOC therefore found that former employees are also to be protected from discrimination arising from the former employee relationship. As the purpose of GINA's Title II is to avoid discrimination on the basis of genetic information, extending protection beyond the end of employment would best further these means. The EEOC explicitly refused to add a temporal qualifier to the inclusion of "former employee," as the risk of discrimination on the basis of immutable genetic information continues indefinitely.
Harassment Claims Are Cognizable. In the Regulations, the EEOC affirmed that GINA's language and intent would allow employees to claim harassment on the basis of genetic information (as well as to a variety of other miscellaneous actions against labor unions, employment agencies and training programs). The decision was based on the expansive language used by Congress and adopted directly from Title VII, evidencing a desire to broadly prohibit discrimination.
Retaliation Standard Defined. GINA also contains a specific section preventing retaliation against an individual who opposes an action that GINA identifies as unlawful. Although no specific standard for retaliation is contained in GINA, the EEOC adopted the retaliation standard from Title VII, previously approved by the Supreme Court in Burlington Northern & Santa Fe Ry. v. White. Hence, the inquiry is whether a reasonable person would have found the action taken to be "materially adverse," or "well might have dissuaded a reasonable employee from making the charge of discrimination."
These new EEOC rules provide the first, but certainly not the last, word on the meaning and application of GINA to employers. In essence, GINA is a statute designed to plug holes in existing statutes as they relate to anticipated problems in the field of genetic information. Consequently, GINA adopts in large part definitions, remedies, and standards previously developed in other areas of discrimination law. Further, the EEOC was very careful in drafting its Regulations to avoid conflicts with the application of other statutes, such as the ADA, FMLA, Title VII, and others. Attorneys already familiar with these laws should have little difficulty in understanding and applying the new EEOC Regulations. Where ambiguities exist, reading GINA and the Regulations in line with the overarching purpose of these background statutes should guide counsel toward the proper interpretation.