On November 9, 2010, the Equal Employment Opportunity Commission (EEOC) issued its long-awaited final regulations implementing the employment-related provisions in Title II of the Genetic Information Non-Discrimination Act of 2008 (GINA). The regulations took effect on January 10, 2011. They address numerous questions that employers have had about GINA, including the extent to which employers can implement wellness programs that use genetic information. In addition, they detail significant limitations and prohibitions on the acquisition and use of genetic information, and further detail specific steps employers should take and safe harbors employers can employ to assist in compliance with GINA’s requirements.
GINA’s Principal Requirements and Prohibitions
Fundamentally, GINA prohibits employers from discriminating against or harassing current or former employees or applicants on the basis of genetic information, and from retaliating against an individual who has complained about genetic discrimination. GINA also strictly limits the ability of employers to obtain and disclose genetic information: employers may not request, require or purchase genetic information as defined under GINA.
GINA prohibits employers from requesting, requiring or purchasing “genetic information,” with several critical exceptions: (1) an inadvertent request for genetic information, (2) a request in the context of a voluntary wellness program, (3) a request for family medical history to comply with the certification provisions of the Family and Medical Leave Act (FMLA) or state or local leave laws, or (4) when genetic information is acquired from publicly available documents, such as newspapers or electronic media.
What is Genetic Information?
“Genetic Information” that employers may not “request, require or purchase” includes information regarding:
- genetic tests of the individual applicant or employee
- genetic tests of an applicant's or employee's family members
- the manifestation of a disease or disorder in the medical history of an employee's or applicant's family members
- request for or receipt of genetic services by the individual applicant or employee or family members
The regulations clarify that the "family members" about whom an employer cannot seek the information noted above include the employee’s children, spouse, grandparents, great-grandparents, parents, aunts and uncles, and first cousins once removed. Moreover, "family members" extend beyond blood relatives to include spouses and adopted children. Finally, a fetus is also considered to be a family member; "genetic information" includes information about tests on a developing fetus (which may reveal the employee's or applicant's propensity to develop a particular condition).
The difference in the scope of "genetic information" as to individuals and family members is based upon the purpose of the prohibition on acquiring and using genetic information in employment decisions. The purpose of GINA is to prohibit employers from basing employment decisions on an employee's or applicant's propensity or perceived propensity to develop a disease or condition in the future. Conditions that an employee or applicant currently has do not raise this concern, and are not considered genetic information. Of course, other laws, such as the ADA and the FMLA, prohibit discrimination against applicants or employees based on their current medical condition. However, conditions or diseases that an employee's or applicant's family members currently exhibit may suggest a propensity for the employee or applicant to develop that condition or disease. For that reason, the manifestation of a disease or disorder in a family member's medical history is genetic information regulated by GINA, while such information about the individual applicant or employee is not.
Inadvertent Request for Medical Information
Although GINA does not make unlawful an “inadvertent” request for, or the inadvertent receipt of, genetic information, the regulations specifically limit when the request or receipt of genetic information will be deemed inadvertent. The regulations explain that genetic information received in response to a lawful request for medical information is not received inadvertently, unless the employer specifically directs the applicant, employee and/or health care provider from whom it requests medical information not to provide genetic information (or can otherwise prove that the information was received inadvertently). The regulations contain model language that can be used to take advantage of this safe harbor:
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 services. 29 C.F.R. § 1635.8(b)(1)(i)(B).
This specific language should be included in all requests for medical information from an applicant, employee, or health care provider, including, but not limited to, requests for medical documentation to support a request for reasonable accommodation under the Americans with Disabilities Act, to support an employee’s request for leave for his or her own serious health condition under the Family and Medical Leave Act, or in connection with a workers’ compensation claim, among other situations. Note, however, that there is a separate exception for requests for medical certification of the need for an employee to take FMLA leave to care for a family member with a serious health condition.
Also, when an employer requires a medical examination related to employment, such as in connection with a request for an ADA accommodation or an FMLA leave, the employer must affirmatively advise the health care provider not to collect or disclose genetic information, including family medical history.
Other Inadvertent Acquisition of Genetic Information
The regulations provide further examples of situations that can be inadvertent acquisitions of genetic information. These include a manager learning about genetic information, particularly information about a family member's medical condition or medical history, during a casual conversation, such as in response to an ordinary expression of concern about how an employee or family member is feeling; when a manager overhears a conversation in which an employee’s genetic information is discussed (the “water cooler exception”); or when a manager inadvertently learns genetic information through email or social media. But an acquisition of genetic information can lose its “inadvertent” status if the manager asks follow-up questions or seeks additional information. For example, the supervisor or manager may not ask if other family members have a similar condition or ask whether the employee has been tested for the condition. Managers should be trained that, in such situations, they may not ask follow-up questions or attempt to obtain any additional genetic information in any manner.
Obtaining Genetic Information Through a Voluntary Wellness Program
Another exception to the prohibition against requesting genetic information applies if the employer offers health or genetic services as part of a voluntary wellness program. The final regulations clarify what constitutes a voluntary wellness program and, in particular, whether a program could be voluntary when an employer offers a financial reward for participation. The final regulations explain that to be considered voluntary, an employer may not require an individual to provide genetic information or penalize those who choose not to provide genetic information. Furthermore, the employer cannot obtain or view individually identifiable genetic information. Such information may be provided only to the individual and the health care professionals or genetic counselors involved in providing the services. The employer must also obtain the employee’s knowing, voluntary and written authorization to obtain the information, using a form that is understandable, describes the types of genetic information that will be obtained and how it will be used, and describes the restrictions on the disclosure of genetic information.
The EEOC reportedly tried to strike a balance between the benefits of wellness programs and its desire to narrowly construe exceptions to the prohibition on acquiring genetic information. The final regulations permit employers to offer financial incentives to encourage participation in wellness programs under certain circumstances, but prohibit employers from offering an inducement to provide genetic information. An employer may offer a financial inducement to employees who complete a health risk assessment, provided that the inducement is available to all employees who respond regardless of whether they answer questions seeking genetic information. Any health risk assessment formused in a wellness program must, therefore, identify which questions request genetic information and advise the individual that he or she need not answer those questions to receive the financial inducement. This approach means, though, that health risk assessments for employees who choose not to provide genetic information may not be as accurate or helpful to the extent that they are not based on a complete picture of an employee’s health.
If genetic information voluntarily provided indicates that an individual is at an increased risk of acquiring a health condition in the future, an employer may offer a financial inducement to encourage the individual to participate in a program that will assist the individual in meeting certain health goals. But those programs must also be offered to individuals who currently have the particular health conditions or have an increased risk of developing such conditions. For example, if an employee voluntarily discloses a family medical history of high blood pressure on the health risk assessment, an employer may offer the employee money to participate in a wellness program designed to encourage weight loss and a healthy lifestyle provided that the same incentive is offered to employees who have a current diagnosis of high blood pressure. Further, an employer may offer an additional incentive to individuals who are able to lower their blood pressure (or manage other conditions) in a particular year.
Employers must be aware that wellness programs that constitute group health plans may also have to comply with Title I of GINA, as well as with the Health Information Portability and Accountability Act (HIPAA). The HIPAA non-discrimination rules require that wellness programs that condition rewards on
the satisfaction of a health standard provide a reasonable alternative if it is unreasonably difficult due to a medical condition for an individual to satisfy the applicable standard.
Requesting Family Medical History to Comply with the FMLA or Similar Laws
The regulations contain another exception to the prohibition on requesting medical information in connection with requests for FMLA leave to care for a family member with a serious health condition. A separate exception is needed because such a request directly seeks genetic information – information about a medical condition or the medical history of a family member. This exception provides that if an employee requests leave to care for a sick family member and provides information about family medical history to his or her employer in connection with that request to comply with an employer’s requirement for certification of the need for family care leave, the employer’s request for or receipt of such information does not violate GINA. It is critical, however, that the employer seek only the information the FMLA regulations allow it to obtain in connection with the certification of the need to take FMLA leave to care for a family member. The employer should continue to use U.S. Department of Labor Form WH-381, Notice of Eligibility and Rights & Responsibilities (FMLA), to determine and communicate FMLA eligibility.
Acquisition of Genetic Information from Commercially/Publicly Available Documents
An employer does not violate GINA by inadvertently receiving genetic information about an employee or applicant in the course of reading material that is commercially or publicly available, such as in a newspaper or magazine, on the Internet and the like. But an employer may violate GINA if it searches for genetic information about applicants or employees from such public sources, or obtains genetic information from court records or medical databases.
Separate Files and Notice Posting Requirements
GINA requires that records containing genetic information be maintained in separate, confidential medical files, although it does allow genetic information that was placed in general personnel files before November 21, 2009 to remain in those files. Employers are also required to post the EEOC-issued notice describing rights under GINA in conspicuous places where other notices for employees and applicants are posted. The EEOC issued a revised poster when GINA was enacted that can be used for this purpose.
Coordination With/Effect on Other Federal and State Employment Laws
GINA does not preempt state or local laws that provide equal or greater protections than GINA, nor does it affect an employer’s obligations under the Americans with Disabilities Act or HIPAA.
Significance and Practical Pointers
If they have not done so already, employers should add genetic information as a protected class to all of their Equal Employment Opportunity (EEO) statements and should ensure that their EEO and anti-harassment policies include prohibitions against discrimination, harassment and retaliation based on genetic information.
To be able to take advantage of the safe harbor against the disclosure of genetic information in response to a request for medical documentation, employers should incorporate the model language into all requests for employee medical information, such as fitness for duty certifications and requests made in conjunction with an employee’s request for a reasonable accommodation, FMLA leave (except for leave to care for a family member's serious health condition) and workers’ compensation.
Employers that ask employees to complete health risk assessments as part of a wellness program should clearly identify those questions that seek genetic information and should specify that employees need not respond to those questions in order to receive any offered financial incentive.
Employers should train managers and human resources employees about GINA’s requirements, particularly regarding the prohibition against acquiring and disclosing genetic information.