On November 9, 2010, the U.S. Equal Employment Opportunity Commission (EEOC) issued final regulations implementing the employment provisions (Title II) of the Genetic Information Nondiscrimination Act of 2008 (GINA). GINA prohibits use of genetic information to make decisions about health insurance and employment, and restricts the acquisition and disclosure of genetic information.
Title II of GINA prohibits employment discrimination based on genetic information, and restricts the acquisition and disclosure of genetic information. Genetic information includes information about individuals’ genetic tests and the tests of their family members; family medical history; requests for and receipt of genetic services by an individual or a family member; and genetic information about a fetus carried by an individual or family member or of an embryo legally held by the individual or family member using assisted reproductive technology.
The final regulations include clarifications and refinements made in response to comments received during the notice and comment period. In addition, the regulations provide examples of genetic tests; more fully explain GINA’s prohibition against requesting, requiring, or purchasing genetic information; provide model language employers can use when requesting medical information from employees to avoid acquiring genetic information; and describe how GINA applies to genetic information obtained via electronic media, including websites and social networking sites.
Of particular interest to Mercer/ORC Networks members are the following three questions and answers from the Q&A document aimed at small employers (similar information is in the general Q&A document—but stated most clearly in the small business version):
9. May an employer ask for family medical history as part of a medical examination of a job applicant or employee?
No. Although an employer may conduct medical examinations after making a job offer or during employment as permitted by the Americans with Disabilities Act (ADA), the examination may not include collection of family medical history. An employer must tell its health care providers not to collect genetic information as part of an employment-related medical exam, and, if it finds out that family medical histories are being collected, the employer must take measures within its control (including not using the services of that health care provider) to prevent this from happening in the future.
12. What does GINA say about the acquisition of genetic information when an employer offers health or genetic services, like a wellness program?
GINA and the final rule say that an employer may acquire genetic information about an employee or his or her family members when it offers health or genetic services, including wellness programs, on a voluntary basis. The individual receiving the services must give prior, voluntary, knowing, and written authorization.
While individualized genetic information may be provided to the individual receiving the services and to his or her health or genetic service providers, genetic information may only be provided to the employer in aggregate form. However, if information provided in the aggregate makes identification of specific individuals’ genetic information possible because of the small number of participants in a wellness program, the employer will not violate GINA.
The proposed rule sought comments on the extent to which an employer could offer financial inducements to encourage participation in health or genetic services, particularly wellness programs. The final rule says that while employers may offer certain kinds of financial inducements to encourage participation in health or genetic services under certain circumstances, they may not offer an inducement for individuals to provide genetic information. Thus, it would not violate Title II of GINA for an employer to offer individuals an inducement for completing a health risk assessment that includes some questions about family medical history or other genetic information, as long as the employer specifically identifies those questions and makes clear, in language reasonably likely to be understood by those completing the health risk assessment, that the individual need not answer the questions that request genetic information to receive the inducement.
Title II allows employers to offer financial inducements for participation in disease management programs or other programs that encourage healthy lifestyles, such as programs that provide coaching to employees attempting to meet particular health goals (e.g., achieving a certain weight, cholesterol level, or blood pressure). To avoid a violation of Title II of GINA, however, employers who offer such programs and inducements to individuals based on their voluntarily provided genetic information must also offer the programs and inducements to individuals with current health conditions, and/or to individuals whose lifestyle choices put them at risk of acquiring a condition.
15. May an employer conduct genetic monitoring to see if employees are being affected by harmful substances in the workplace?
Yes, if certain requirements are met. An employer that wants to do genetic monitoring that is not required by law must provide written notice of the monitoring program and must obtain an individual’s prior, knowing, written, and voluntary authorization. If the monitoring is required by law, such as under standards issued by the Occupational Safety and Health Administration (OSHA), an employer must provide notice of the monitoring and otherwise comply with the requirements for conducting the monitoring program, but need not obtain the individual’s prior, knowing, written, and voluntary consent.
Furthermore, while individualized genetic information may be disclosed to the employee, and to the doctors and certified genetic counselors involved in the monitoring, the employer may only be given genetic information in aggregate form. As in the case of health or genetic services offered by an employer on a voluntary basis, if information provided in the aggregate makes identification of specific individuals’ genetic information possible because of the small number of participants in a monitoring program, the employer will not violate GINA.
The final rule clarifies that GINA prohibits an employer from retaliating or otherwise discriminating against an employee who refuses to participate in genetic monitoring that is not specifically required by law. An individual who refuses to participate in a voluntary genetic monitoring program should be informed of the potential dangers (e.g., the consequences that might result if the effects of certain toxins in the workplace are not identified), but the employer may not take any adverse action against the individual for refusing to participate. However, an employer does not violate Title II of GINA if it limits or restricts an employee’s job duties based on genetic information because it was required to do so by law or regulation, such as regulations administered by OSHA.