Title II of the Genetic Information Discrimination Act (GINA) prohibits discrimination on the basis of genetic information. The Equal Employment Opportunity Commission (EEOC) established implementing regulations for employers regarding the acquisition of genetic information (Code of Federal Regulations §1635.8). There are six specific exceptions in which the general prohibition against requesting, requiring, or purchasing genetic information does not apply. This updated final rule pertains to the second exception, “Where a covered entity (including private employers and state and local government employers with 15 or more employees, employment agencies, labor unions, joint labor-management training programs, Congress, federal executive branch agencies, and the Executive Office of the President) offers health or genetic services, including such services offered as part of a voluntary wellness program” (1635.8(b)(2)).
The original EEOC rules permitted employers to seek information about manifestation of diseases or disorders in employee’s family members who are receiving health or genetic services from the employer, but did not address whether inducements could be provided in exchange for such information.
This final rule (notified via 81 Federal Register 31143) clarifies “that an employer may, in certain circumstances, offer an employee limited inducements for the employee’s spouse to provide information about the spouse’s manifestation of disease or disorder as part of an HRA [health risk assessment] administered in connection with an employer-sponsored wellness program [ESWP], provided that GINA’s confidentiality requirments are observed and any information obtained is not used to discriminate again an employee.” This updated rule applies to all ESWPs that request genetic information. More specifically, the rule:
- Adds a new section (1635.8(b)(2)(i)(A)), which mandates that employers may request genetic information as part of health or genetic services only when those services are “reasonably designed to promote health or prevent disease.” Programs that would not qualify include those that:
- Capture data without providing results to employees, unless the collected information is used to design a program that addresses at least a subset of identified conditions;
- Condition rewards on overly burdensome participation requiements;
- Exist solely to 1) shift costs from the employer to employee or 2) use data to determine future health costs; or
- Penalize an employee because a spouse’s manifestation of disease or disorder prevents or inhibits the spouse from participating or from achieving a certain health outcome.
- Adds new language (1635.8(b)(2)(iii) through (v)), which:
- Clarifies that an employer may offer, as part of an ESWP, a limited inducement (in the form of a reward or penalty) to an employee whose spouse provides information about the spouse’s manifestation of disease or disorder as part of a HRA.
- Instructs that the inducement may not be offered in return for:
- The spouse providing his/her own genetic information; or
- Information about the employee’s children, including 1) manifestation of disease or disorder, and 2) genetic information.
- Limits the maximum inducement to 30 percent of self-only coverage and provides numerous detailed examples related to plan type.
- Explains that an employer may not condition participation in an ESWP or otherwise induce an employee, spouse, or dependent to permit disclosure of genetic information, or waive associated confidentiality rights.
- States that it is unlawful for an employer to deny access to health insurance to an employee and his/her family based on a spouse’s refusal to provide information about his or her manifestation of disease or disorder.
- Eliminates the term “financial” in relationship to inducements, in order to clarify that the term “inducements” includes both financial and in-kind inducements.
- Provides additional examples (1635.8(c)(2)) regarding situations in which an employer is not violating standards for acquiring genetic information.
The rule also adds necessary references to the Health Insurance Portability and Accountability Act (HIPAA) and the Affordable Care Act (ACA).