On November 9, 2010, the EEOC issued its final employment regulations for Title II of the Genetic Information Nondiscrimination Act (GINA). The Title II regulations apply to private and government employers and became effective January 10, 2011.
GINA prohibits health insurers and employers from discriminating on the basis of genetic information. Title II prohibits use of genetic information when making hiring, firing, job placement, or promotion decisions. It also prohibits harassment based on genetic information and retaliation for opposing discrimination. Moreover, GINA restricts employers and other covered entities from requesting, requiring, or purchasing genetic information, and strictly limits the disclosure of genetic information.
For employers, the inclusion of family medical history within the definition of “genetic information” is likely to create the most difficult problems. “Genetic information” includes information about an individual’s genetic tests and the tests of the individual’s family members; family medical history; an individual’s requests for and receipt of genetic services or participation in clinical research that includes genetic services by the individual or a family member; and the genetic information of a fetus carried by an individual or family member, or an embryo legally held by the individual or family member using assisted reproductive technology.
GINA provides six exceptions to the prohibition against obtaining genetic information:
- First, inadvertent acquisitions of genetic information do not violate GINA, such as a “water cooler” situation where a manager or supervisor overhears someone talking about a family member’s illness.
- Second, genetic information may be obtained as part of health services, such as wellness programs offered by the employer on a voluntary basis, even when the employer provides financial incentives for participation, as long as certain requirements are met.
- Third, information may be lawfully acquired as part of the certification process for FMLA leave or an Americans with Disabilities Act accommodation.
- Fourth, genetic information may be obtained through commercially and publicly available documents like newspapers. However, an employer is prohibited from searching these sources with the intent of finding genetic information or accessing sources where genetic information is likely to be acquired, like websites and on-line discussion groups that focus on issues such as genetic testing and genetic discrimination. Social networking sites that require permission from the creator of the profile to gain access to anything beyond basic information, or where access is limited to individuals in particular groups, are not considered commercially and publicly available.
- Fifth, genetic information may be acquired through a genetic monitoring program that monitors the biological effects of toxic substances in the workplace, where monitoring is required by law or, where the program is voluntary, if certain conditions are met.
- Sixth, acquisition of genetic information of employees by employers who engage in DNA testing for law enforcement purposes is not prohibited, but the information may only be used for analysis of DNA markers for quality control to detect sample contamination.
The final regulations also provide model language employers can use when requesting medical information from employees and their healthcare providers to avoid acquiring genetic information and provide a safe harbor if genetic information is inadvertently obtained. The safe harbor language reads as follows:
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.
While use of the safe harbor language is not mandatory, it will be helpful to use it when seeking medical information from an employee or employee’s healthcare provider to support a request for reasonable accommodation, to support a request for FMLA leave for the employee’s own serious health condition, to comply with FMLA return to work certification requirements, and to support non-FMLA leave requests.
The regulations require more than the safe harbor language if the employer arranges for its own healthcare professionals to examine an employee. Here, the employer must direct the healthcare professional not to collect genetic information, including family medical history, as part of a medical examination intended to determine the employee’s ability to perform a job (e.g., a post offer medical exam or fitness for duty exam). Moreover, the regulations suggest an employer may need to cease using the services of a healthcare professional who requests or requires genetic information during medical examinations after being informed not to do so. This approach will be very problematic for employers if it extends to workers’ compensation or similar examinations in which the healthcare professional may need family medical history to determine whether or not a condition or injury is likely one that occurred in the workplace. Unfortunately, neither the Title II regulations nor the explanatory notes in the Preamble to the regulations address workers’ compensation medical examinations.
Finally, GINA makes it unlawful for covered entities to disclose genetic information about applicants, employees, or members. Genetic information must be kept confidential and in a separate medical file, but may be kept in the same file as other confidential medical information in compliance with the Americans with Disabilities Act. The nondisclosure rule contains limited exceptions, such as disclosure to government officials investigating compliance with Title II of GINA and those made pursuant to a court order.
With these regulations, employers should now take the following steps:
- Post the revised EEOC non-discrimination poster that includes the information on genetics non-discrimination.
- Train HR personnel and supervisors regarding GINA.
- Review and revise forms to avoid gathering genetic information and supplement the forms with the safe harbor notice.
- Implement privacy practices to protect genetic information.
- Watch for developments concerning workers’ compensation medical examinations.