The Genetic Information Nondiscrimination Act (GINA), 42 U.S.C. § 2000ff, was enacted in 2008 to prevent discrimination on the basis of genetic information in employment and health insurance. Title I of the Act focuses on issues in health insurance, and is administered by several federal Departments, while Title II prohibits employers from using genetic information in employment decision-making and is administered by the Equal Employment Opportunity Commission. On November 9, 2010, the EEOC issued the final regulations implementing Title II, and these regulations went into effect on January 10, 2011. The regulations help to explain the GINA prohibitions, restrictions, and requirements for employers when dealing with genetic information about an employee, but also clarify several exceptions to the general prohibition on acquiring genetic information about employees and their family members. This article will provide a brief overview of some of those pertinent exceptions.
Acquisition of Genetic Information: GINA strictly prohibits an employer from “requesting, requiring, or purchasing genetic information.” According to the Act and the regulations, a request is any inquiry that “is likely to result” in an employer obtaining genetic information about an employee or an employee’s family member. Examples provided by the regulations are conducting internet-based research on an individual, actively listening to third — party conversations, searching an individual’s personal effects, and making requests about an individual’s current health status.
Inadvertent Disclosure in Request for Medical Information: Despite the strict prohibitions, the regulations recognize that, in certain instances, employers may inadvertently uncover genetic information about an employee, especially where the employer makes an otherwise lawful request for medical information. The regulations state that if genetic information is acquired in response to a lawful request for medical information, the acquisition will be considered inadvertent if the employer specifically directs the disclosing entity not to provide genetic information. The regulations provide language that can be used in requests for medical information that will deem any disclosure inadvertent:
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.
Notably, the failure to give notice or use of this or similar language will not prevent an employer from later asserting that the disclosure was inadvertent, such as instances where there was any overly broad disclosure in response to a tailored request, but the inclusion of this language is highly recommended, as it will deem any disclosure inadvertent. This language should be included in any requests for information where the employer requests documentation to support a request for a reasonable accommodation and for requests for leave under the FMLA.
Other Inadvertent Disclosure Situations: The regulations also expand upon certain scenarios in which the inadvertent disclosures may occur. These scenarios include, but are not limited to, a manager learns about genetic information by inadvertently overhearing a conversation; a manager receives information directly from the employee during casual conversation or following a general health inquiry (i.e., “How are you?” or “Did they catch it early?” asked of an employee who was just diagnosed with cancer). Another exception applies where the manager learns of genetic information without having solicited the information. A final example is where the manager learns of genetic information from a social media platform (e.g., Facebook) where the manager was given permission to access the individual’s profile.
Voluntary Wellness Programs: Voluntary wellness programs are also provided an exception from the general prohibition on obtaining genetic information. The primary condition to qualify for this exemption is that the wellness program must be voluntary, meaning that the employer cannot require “individual to provide genetic information nor penalizes those who chose not to provide it.” Significantly, while an employer may not offer a financial inducement for individuals to provide genetic information, the regulations state that an employer may offer financial inducements for completion of health risk assessments that include questions about family medical history or other genetic information, as long as the employer makes clear that the financial inducement is not contingent on the disclosure of genetic information. The regulations provide the following example:
A covered entity offers $150 to employees who complete a health risk assessment with 100 questions, the last 20 of them concerning family medical history and other genetic information. The instructions for completing the health risk assessment make clear that the inducement will be provided to all employees who respond to the first 80 questions, whether or not the remaining 20 questions concerning family medical history and other genetic information are answered. This health risk assessment does not violate Title II of GINA.
Employers may also offer financial inducements to encourage employees who have voluntarily provided genetic information to participate in disease management programs or other programs to promote a healthy lifestyle. For example, an employee who voluntarily disclosed a genetic predisposition to diabetes may be offered $150 to participate in a weight-loss program or employers may provide additional inducements to individuals who achieve certain health outcomes, such as meeting weight-loss goals.
Compliance with FMLA or State and local medical leave laws: The prohibition against obtaining genetic information does not apply where an employer requests family medical history to comply with the certification provisions of the FMLA or similar State and local laws, or pursuant to a policy that permits the use of leave to care for a sick family member and that requires all employees to provide information about the health condition of the family member to substantiate the need for leave.
Commercially and Publically Available Information: GINA is not violated where an employer acquires genetic information from documents that are commercially and publicly available for review or purchase, including newspapers, magazines, periodicals, or books, or through electronic media, such as information communicated through television, movies, or the Internet. Notably, this exception does not apply to medical databases, court records, scientific research databases, social networking and media sites with limited access, or where the employer accesses a commercially or publically available database with the intent to obtain information.
Biological Monitoring: The regulations also provide an exception where the employer acquires genetic information for use in monitoring the biological effects of toxic substances. The employer must provide written notice of the monitoring to the individual and inform the individual of monitoring results. The monitoring must be required by federal or state law or conducted with the individual’s voluntary consent.
DNA Testing: Another exception exists for employers that conduct DNA analysis for law enforcement purposes as a forensics lab or to identify human remains. These employers may request genetic information, but only to be used for quality control and to detect sample contamination.
Important Note on Maintenance of Genetic Information: Aside from the exceptions to the requests, it is important to note that the regulations contain certain record keeping requirements for genetic information. The regulations state that any genetic information in the employer’s possession must be stored in a confidential medical file separate from the employee’s human resources or personnel file.