Genetic Information Nondiscrimination Act regs are first to address social media

PBN Staff

11/27/2010

On Nov. 9, the Equal Employment Opportunity Commission published its final regulations implementing Title II of the year-old Genetic Information Nondiscrimination Act (GINA). The regulations, which go into effect on Jan. 10, provide more detailed guidance regarding GINA’s restrictions on the acquisition, storage and disclosure of genetic information.
The regulations are the first known regulations to specifically address social media.
Title II of GINA, which applies to, among other entities, employers with 15 or more employees, labor unions, and employment agencies (referred to in this article as “covered entities”), is best known for its prohibition against the use of “genetic information” of job applicants, current and former employees, labor union members, and apprentices and trainees (referred to in this article as “covered persons”) to discriminate in connection with the terms, conditions, or privileges of employment.
“Genetic information” is broadly defined by GINA, and includes information pertaining to genetic tests of a covered person or their family members or their requests for genetic services, the manifestation of disease or disorder in family members of a covered person, the genetics of a fetus carried by a covered person or their female family member, and even the genetics of an embryo legally held by a covered person or their family member using an assisted reproductive technology.
GINA does more than prohibit discrimination – with limited exceptions, it also broadly prohibits covered entities from “requesting, requiring, or purchasing” genetic information of covered persons or their family members. “Requesting” is defined quite broadly to include searching the Internet, overhearing third-party conversations, or searching an individual’s personal effects in a way that is likely or intended to result in obtaining genetic information. Exceptions to GINA include obtaining genetic information in the following circumstances:
• In connection with lawful requests for medical information – a covered entity may obtain genetic information.
To ensure that the receipt of genetic information is deemed inadvertent, however, the commission recommends that requests for medical information are accompanied by a statement requesting that the responding party refrain from providing any genetic information. GINA’s regulations suggest specific language to be used.
• Inadvertent acquisition – a covered entity will not be found to be in violation of GINA if a covered person’s genetic information is obtained inadvertently. Inadvertent acquisition includes overhearing genetic information, being given unsolicited genetic information, or even learning genetic information on a social media website, so long as access has been granted to the social media “profile” where the genetic information resides by the creator of the profile.
• Public/commercial availability – obtaining genetic information from publicly or commercially available sources in print or online is permissible under GINA so long as the sources were not accessed with the purpose of discovering such information. Notably, social networking sites and media sources that have limited access (e.g., access is granted by a specific individual, access is limited to membership in a particular group, or access requires more than simply obtaining a username and password) are not considered publicly available sources under GINA.
The new regulations also mandate that genetic information lawfully obtained after GINA’s effective date be kept in confidential medical files separate from personnel files. GINA’s storage rules will not be enforced retroactively, however. Once genetic information is obtained by covered entities, GINA permits its disclosure only in very narrow circumstances. Specifically, a covered entity may disclose genetic information only to the person to whom the information pertains, upon written request, in support of an employee’s compliance with the certification provisions of FMLA, to an occupational or other health researcher if the research is conducted in compliance with OSHA regulations, in response to a court order if such disclosure is expressly authorized by such order, to government officials investigating GINA compliance if the information is relevant to the investigation; or to a health agency if the manifestation of a disease or disorder concerns a contagious disease that prevents risk of imminent death or life-threatening illness, and only if the subject person is notified of the disclosure.
While GINA closely tracks and adds little to existing federal and state nondiscrimination laws and the “nondiscrimination” mandates of GINA do not represent a significant change in practice for most employers, employees and plaintiffs’ attorneys are filing GINA claims. In May, the commission reported approximately 80 GINA-related charges. As an example of how GINA claims are arising, a Connecticut woman claimed that her employer fired her after she voluntarily disclosed that she carried the BRCA2 gene, a genetic mutation indicating an increased risk for the development of breast cancer.
With the threat of GINA litigation becoming more mainstream, employers must ensure that genetic information plays no role in their decision-making processes. •

Stacie Boeniger Collier is a Providence-based partner in Nixon Peabody LLP’s labor and employment group. Erika M. Collins is an associate in the group.

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