Important Note: Please join us for Reed Group’s upcoming webinar on the new GINA regulations Thursday, March 10, 1 pm EST/10 am PST. We will provide further details here on the blog or you may email firstname.lastname@example.org for more info.
Employers must learn and comply with the requirements of the Genetic Information Nondiscrimination Act of 2008 (GINA), not only for general privacy concerns but when administering leave of absence management.
Among other things, GINA requires employers to:
- Refrain from requesting, requiring, or purchasing “Genetic Information” (as uniquely defined by GINA) of an employee or the employee’s family members, except in narrow circumstances
- Include special “safe harbor” language on permitted requests for medical information
- Direct healthcare providers not to solicit or provide Genetic Information for the purpose of fitness-for- duty certifications and other job-related medical examinations
- Delete Genetic Information from medical records produced in litigation, including responding to subpoenas and requests for production, unless specifically ordered by the court
- Segregate Genetic Information from other personnel records and files
GINA was passed during President George W. Bush’s last days in office and became effective on November 21, 2009. Initially, the majority of the focus fell on GINA’s employment-related provisions of Title I, which prohibit discrimination in employment based on Genetic Information. (Note: Title II, which relates to discrimination in health care coverage, is not addressed in detail in this article.)
The focus has now shifted to the provisions relating to the acquisition and confidentiality of “Genetic Information,” as that term is defined in GINA. The Equal Employment Opportunity Commission recently issued final regulations effective January 10, 2011, interpreting GINA.
The Act and the regulations (the “Final Rule”) will have a significant impact on employers’ management of leaves of absence due to the restrictions on obtaining and managing employees’ “Genetic Information.”
Unfortunately, there are several aspects of the application and interpretation of GINA’s requirements that are quite unclear or not addressed at all under the Act or the regulations. Reed Group will develop its opinion and best practices in these gray areas until further guidance is available in the form of EEOC interpretive statements, court opinions in lawsuits, or other sources.
GINA Provisions Relating to Acquisition of Medical Information
In leave of absence and disability management, medical information is crucial. However, under GINA the simple act of acquiring Genetic Information about employees or their family members may constitute a violation of the Act. 29 C.F.R. § 1635.8(a). With a few exceptions, GINA prohibits employers from requesting, requiring, or purchasing an applicant’s or employee’s Genetic Information, even if it is never used improperly or at all.
Familiarity with the definitions of certain terms unique to GINA is key to understanding and complying with the Act.
- The definition of “Genetic Information” is much broader than one would imagine. As defined in GINA, Genetic Information includes not only the results of genetic tests for an individual and/or his relatives, but also “family medical history,” which means “the manifestation of disease or disorder in family members of such individual.” 29 C.F.R. §1635.3(b). The disease or disorder that constitutes Genetic Information does not have to be hereditary.
- “Family members” is also defined very broadly to include obvious relatives such as parents, children, and siblings, but also adoptive relatives and dependents, and “any other individual who is a first-degree, second-degree, third-degree, or fourth-degree relative of such individual or of an individual” – such as uncles, great-great grandmothers, and first cousins once removed. 29 C.F.R. § 1635.3(a).
According to one commentator, taking these two definitions together, GINA prohibits acquisition of information about an adopted child’s chicken pox, a father’s deafness, a grandmother’s breast cancer, or a great-great-grandfather’s death from gangrene after being shot in the Spanish-American War. P. Gordon, Workplace Privacy Counsel, “10 Tips For Avoiding GINA Violations,” (November 29, 2010).
• Be aware of what constitutes a “request” for Genetic Information. Under the regulations, requests may include:
- An internet search on an individual with a query that is likely to reveal 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 obtaining Genetic Information
29 C.F.R. § 1635.8(a).
Exceptions to the Acquisition of Genetic Information as a GINA Violation: Employee Medical Information Requested for Leaves of Absence.
One critical exception to the rule prohibiting acquisition of an employee’s Genetic Information applies “where [an employer] inadvertently requests or requires Genetic Information of the individual or family member of the individual.” 29 C.F.R. §1635.8(b). This exception may apply to:
- A request for medical information pursuant to federal, state, or local law, such as leave requests under the FMLA to attend to the employee’s own serious health condition or to comply with a fitness-for-duty certification requirement. 29 C.F.R. § 1635.8(b)(1)(i)(D)(2).
- A request for documentation to support a request for a leave not governed by law, such as company leaves of absence, as long as the documentation required complies with the requirements of the ADA and other laws limiting an employer’s access to medical information. 29 C.F.R. § 1635.8(b)(1)(i) (D)(3).
- A request for documentation to support a request for a reasonable accommodation under federal, state, or local law, as long as the need for accommodation is not obvious, the documentation is limited to content sufficient for the purpose, and the documentation relates only to the impairment at issue. 29 C.F.R. § 1635.8(b)(1)(i)(D)(1).
GINA Warning Required
However, for the acquisition of Genetic Information under these circumstances to be considered “inadvertent,” the request for medical information must be accompanied by a warning to the employee and to any health care provider(s) from whom the employer is requesting medical information not to provide Genetic Information. 29 C.F.R. §§ 1635.8(b) (1)(A) and (B). The following “safe harbor” language is provided by the regulations, which may be included in requests for medical information:
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.
29 C.F.R. § 1635.8(b)(1)(B).
The warning may be in writing or oral if the employer typically does not make such requests in writing. This specific language is not mandatory as long as another similar statement accomplishes GINA’s purpose. 29 C.F.R. §§ 1635.8(b)(1)(A) and (B).
Information for Employee Leave to Care for a Family Member
Another key exception to the prohibition on acquisition of Genetic Information applies to information requested to support a leave of absence to care for an ill family member. This includes an FMLA or similar leave to care for a family member with a serious health condition, or company time-off policies that allow use to care for a sick family member. 29 C.F.R. § 1635.8(b)(3).
Other exceptions include: 29 C.F.R. § 1635.8(b)(1)(ii)
A. Where a manager or supervisor inadvertently overhears a conversation between the employee and others (contrasted with actively listening to others’ conversations). 29 C.F.R. § 1635.8(b)(1)(ii) (A)
B. Where the information is acquired in response to an ordinary expression of concern for the employee’s well-being (e.g., an extensive response to a simple question such as “how are you?” or
“how is your mother doing?”) as compared to active probing for information. 29 C.F.R. § 1635.8(b)(1)(ii) (B)
C. As part of health or genetic services and wellness programs provided on a voluntary basis. (Note that extensive conditions apply to this exception.) 29 C.F.R. § 1635.8(b)(2)
D. Information obtained from commercially and publicly available sources such as newspapers, magazines, and electronic sources (as long as the acquisition is not a violation of privacy or ownership rules, and the acquisition is not the result of a purposeful search for Genetic Information). 29 C.F.R. § 1635.8(b)(4)
E. As part of genetic monitoring that is required by law or provided on a voluntary basis. 29 C.F.R. §1635.8(b)(5)
F. Employers who conduct DNA testing for law enforcement purposes as a forensic lab or for human remains identification. 29 C.F.R. § 1635.8(b)(6)
Special Requirements for Job-Related Medical Examinations
The prohibition on acquisition of Genetic Information, including family medical history, applies to medical examinations related to employment, such as fitness-for-duty certifications, post-offer examinations,
or requests for medical information to support an ADA accommodation request. The employer must specifically tell health care providers not to collect Genetic Information as part of a job-related examination. If an employer learns that Genetic Information is being requested by the health care provider the employer must take measures to discourage this practice, including perhaps declining to use the services of the health care provider further. 29 C.F.R. § 1635.8(d).
Limitations on Disclosure of Genetic Information
Once Genetic Information is acquired by an employer, there are several provisions of GINA relating to maintaining or disclosing such information.
- Genetic Information must be regarded and handled as a confidential medical record and filed separately from regular personnel files. For example, it may be filed in the same files where an employer keeps information obtained pursuant to the ADA. 29 C.F.R. § 1635.9(a)(1), (2).
- Genetic Information acquired by the employer may not be disclosed except as provided in the regulations, including the following:
– To the employee (or to a family member receiving genetic services) if requested in writing by the employee or family member; 29 C.F.R. §
– In response to a court order, but only to the extent expressly identified by the order. (If the order was obtained without the employee’s knowledge, the employer must notify the employee of the court order and identify the Genetic Information that was disclosed). 29 C.F.R. § 1635.9(b)(3);
– To government officials investigating compliance with GINA. 29 C.F.R. § 1635.9(b)(4);
– To support an employee’s compliance with the requirements for a medical leave of absence, as discussed above. 29 C.F.R. § 1635.9(5); and
– To a public health agency regarding the manifestation of a contagious disease that presents an imminent hazard of death or life- threatening illness. 29 C.F.R. § 1635.9(b)(6).
For additional information and guidance, see the EEOC GINA Website.