Complying with the Genetic Information Nondiscrimination Act –acquisition, storage, disclosure, and social media
On November 9, 2010, the Equal Employment Opportunity Commission (“EEOC”) published its final regulations implementing Title II of the Genetic Information Nondiscrimination Act (commonly referred to as “GINA”). The regulations, which go into effect on January 10, 2011, provide detailed guidance regarding GINA’s restrictions on the acquisition, storage, and disclosure of genetic information. The regulations are unique in that they specifically address social media—the first known regulations to do so.
With the effective date fast-approaching, employers must quickly evaluate their policies and procedures to ensure that they are fully complying with GINA’s requirements. This alert summarizes GINA itself, the acquisition and disclosure restrictions of its regulations, and the steps that employers must take to ensure compliance by the effective date.
Who needs to comply with Title II of GINA?
Title II of GINA applies to employers with 15 or more employees, labor unions, and employment agencies, among other entities (referred to in this alert as “covered entities”).
What is Title II of GINA all about?
Title II of GINA prohibits certain employers and other entities from using genetic information of job applicants, current and former employees, labor union members, and apprentices and trainees (referred to in this alert as “covered persons”) to discriminate in connection with the terms, conditions, or privileges of employment.
Because GINA closely tracks and adds little to existing federal and state nondiscrimination laws, the “nondiscrimination” mandates of GINA do not represent a significant change in practice for most employers. However, GINA is not just about nondiscrimination, and the most significant adaptations that employers must make to their practices relate to obtaining, storing, and disclosing genetic information.
What is genetic information anyway?
“Genetic information” is broadly defined by GINA to mean information about: (1) genetic tests (tests that analyze human DNA, RNA, chromosomes, proteins, or metabolites that detect genotypes, mutations, or chromosome changes) of a covered person or their family members; (2) the manifestation of disease or disorder in family members of a covered person; (3) information concerning a covered person’s request for or receipt of genetic services, or participation in clinical research that includes genetic tests, genetic counseling, or genetic education by a covered person or their family members; (4) the genetics of a fetus carried by a covered person or their female family member; or (5) the genetics of an embryo legally held by a covered person or their family member using an assisted reproductive technology.
May a covered entity lawfully obtain genetic information?
Title II of GINA broadly prohibits covered entities from “requesting, requiring, or purchasing” genetic information of covered persons or their family members, unless certain exceptions, outlined below, apply. Importantly, the GINA regulations define “requesting” quite broadly, including ordinary acts such as searching the internet, listening to a third-party conversation, or searching an individual’s personal effects in a way that is likely to result in obtaining, or with the intent of discovering, genetic information. Because of this broad definition, the exceptions become critical, and employers should align their hiring and personnel practices with these exceptions:
- Lawful requests for medical information—GINA is not violated when a covered entity inadvertently obtains genetic information in response to a lawful request for medical information (e.g., request for documentation to support a reasonable accommodation request, a Family and Medical Leave Act (“FMLA”) request, or a “non-FMLA” request for leave). To ensure that the receipt of genetic information is deemed inadvertent, employers should inform the responding party to refrain from providing any genetic information when making such requests. GINA’s regulations suggest that employers use the following statement:
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.
- Inadvertent acquisition—GINA is not violated when a manager, supervisor, union representative, or employment agency representative learns a covered person’s genetic information inadvertently by:
- Overhearing a conversation in which the covered person discloses genetic information to others.
- Asking a general health inquiry such as “how are you?” and a covered person responds by revealing genetic information, so long as no follow up questions are asked that are likely to result in the acquisition of additional genetic information.
- Receiving unsolicited genetic information, such as through an e-mail.
- Entering a “social media platform” (this term is undefined) where access has been granted by the creator of the profile at issue. The regulations seem to imply that “access” means being “connected to” an individual on a social networking site.
- Public/commercial availability—GINA is generally not violated when a covered entity acquires genetic information about a covered person from documents that are publicly or commercially available in print or on the internet, so long as the covered entity did not seek access to the documents with the intent of obtaining genetic 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 this exception. The regulations make clear, however, that if a social networking or other media source does not fall within this exception, covered entities can still rely on the inadvertent disclosure exception, if applicable.
- Wellness program—GINA is not violated when a covered entity offers health or genetic services to a covered person (such as a wellness program), and such person voluntarily discloses genetic information after providing a GINA-compliant written authorization.
- Genetic monitoring—GINA is not violated when a covered entity acquires genetic information for use in the genetic monitoring of the biological effects of toxic substances in the workplace, so long as a GINA-compliant written notice of the monitoring is given, and the covered person is informed of the results.
- DNA testing—GINA is not violated when a covered entity conducts DNA analysis for law enforcement or human remains identification purposes, and requests or requires genetic information from covered persons to detect contamination.
If I lawfully obtain genetic information, how do I store it without violating GINA?
Lawfully obtained genetic information must be kept in confidential medical files that are maintained separately from personnel files. However, if you obtained genetic information and placed such information into personnel files prior to November 21, 2009, the storage requirements of GINA will not be enforced retroactively. Of course, even lawfully obtained genetic information cannot be used for discriminatory purposes.
Can I disclose lawfully obtained genetic information to anyone?
Yes. A covered entity can disclose lawfully obtained genetic information as follows:
- 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 Occupational Safety and Health Administration (“OSHA”) regulations;
- In response to a court order if such disclosure is expressly authorized by such order. However, if the court order is secured without the knowledge of the covered person to whom the information pertains, you must inform the person of the court order and any genetic information that was disclosed under the court order;
- To government officials investigating GINA compliance if the information is relevant to the investigation; and
- 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.
What do I need to do now to comply with GINA?
It is imperative for employers to take affirmative steps now to combat against claims of violation of GINA. Such steps should include, at a minimum: (1) adding language to EEO and discrimination policies to clearly state that you do not discriminate on the basis of genetic information; (2) ensuring that your federal EEO postings are updated to include language informing employees of their rights under GINA; (3) updating separation and severance agreements to include releases of GINA-related claims; (4) reviewing application forms to ensure that they do not directly or indirectly request information that could expose or reveal an applicant’s genetic information; (5) including disclaimers in your lawful requests for employees’ medical information; (6) ensuring that you are using GINA-compliant authorization forms when necessary in connection with wellness programs or OSHA monitoring; (7) ensuring that genetic information is kept in confidential medical files and that any genetic information that may have been placed in personnel files since November 21, 2009, is removed and placed in confidential medical files; (8) training supervisors and managers in GINA compliance; and (9) reviewing any hiring processes and practices that incorporate internet or social media searches for compliance with the social media and publicly-available information exceptions discussed above.
- Employers should be aware, however, that employees have begun taking action under GINA. For example, in April of this year, in the first widely-reported GINA discrimination case in the United States, 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. In May, the EEOC reported that is has received approximately 80 GINA-related claims since GINA’s passage.
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- A “family member” is defined by Title II of GINA to include a covered person’s parents, siblings, children (by birth or adoption), grandparents, grandchildren, uncles, aunts, nephews, nieces, half-siblings, great-grandparents, great grandchildren, great aunts and uncles, first cousins, great-great grandparents, great-great grandchildren, and first cousins once removed.
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The foregoing has been prepared for the general information of clients and friends of the firm. It is not meant to provide legal advice with respect to any specific matter and should not be acted upon without professional counsel. If you have any questions or require any further information regarding these or other related matters, please contact your regular Nixon Peabody LLP representative. This material may be considered advertising under certain rules of professional conduct.