Take steps now to avoid running afoul of the Genetic Information Nondiscrimination Act (GINA), which prohibits discrimination in health coverage and employment on the basis of genetic information. Title II addresses discrimination in employment, and prohibits employers from acquiring genetic information about employees, and from using genetic information for hiring, firing or promotion decisions, and for any decisions regarding terms of employment.
Since the term “genetic information” is defined broadly, it’s important that employers understand the many situations in which GINA can apply. Final regulations from the Equal Employment Opportunity Commission provide guidance on this.
GINA applies to employers with 15 or more employees. Its definition of “genetic information” includes not only genetic tests, genetic services and genetic research involving an individual employee and/or family members, but also the manifestation of a disease or disorder in an individual’s family medical history. Specifically, GINA prohibits the use of genetic information in employment decision making, restricts an employer’s deliberate acquisition of an employee’s genetic information, requires employee genetic information to be maintained as confidential and strictly limits employers from disclosing such information.
The regulations create a number of exceptions, including situations in which genetic information is acquired “inadvertently.” So, for example, if an employee’s supervisor overhears a conversation in which genetic information is discussed (the “water cooler” exception), or learns genetic information during the course of a casual conversation with an employee, this would be considered “inadvertent” and not amount to a GINA violation. However, the exception would no longer apply if the supervisor pursued the conversation by asking follow-up questions.
Also, while a casual, general question about an employee’s health that elicits genetic information might be considered inadvertent, more pointed health inquiries that delve into an employee’s family history (such as, “does cancer run in your family?”) are not permissible under GINA.
There are situations in which an employer may need to solicit health-related information from or about an employee, such as when an employee seeks a leave of absence. GINA provides safe harbor language for such lawful requests for health-related information; this language specifies that the employee or other individual from whom information is sought (such as a health care provider) should not provide genetic information in response to the employer’s request for health-related information.
For employers that offer wellness programs, the EEOC guidance says that employers may acquire genetic information about an employee and/or family members for these programs, so long as participation in the program is voluntary, and employees must give prior, voluntary, knowing and written authorization. Any information acquired this way may be made available to the employer only in an aggregate format, and not be identifiable to any individual employees.
Also, employers may offer financial incentives to encourage participation in wellness programs, but they may not offer an inducement for individuals to provide genetic information.
For example, if a health risk assessment is part of program participation, and the assessment includes some questions about family medical history or other genetic information, those questions must be identified and it must be clearly stated that an employee need not answer them in order to receive the incentive. Disease management programs, and incentives for participation, must be available to all workers with the targeted health condition and those whose lifestyle choices put them at risk, and not only to those who voluntarily provide health and genetic information.
What type of tests would, and would not, be considered genetic tests? According to the EEOC, “tests used to determine whether an individual has a certain genetic variant associated with an increased risk of acquiring a disease in the future are genetic tests.” For example, a test to determine whether an individual has a predisposition to certain types of breast cancer is a genetic test. Other examples include a test for a genetic variant for Huntington’s Disease and carrier screenings of adults using genetic analysis to determine the risk of conditions such as cystic fibrosis, sickle cell anemia, spinal muscular atrophy, or fragile X syndrome in future offspring. Examples of tests that are not genetic tests include an HIV test, a cholesterol test and test for the presence of drugs or alcohol.
GINA provisions are complex and should be reviewed with a company’s human resources and legal advisers. However, the following are a few of the steps employers should now be taking to avoid running afoul of its prohibitions:
- Update Family and Medical Leave forms, fitness-for-duty forms and request for accommodation paperwork to include the safe harbor language.
- Train managers, supervisors and human resources personnel on GINA provisions, especially those involving casual conversations with employees about their health or the health of family members.
- Review and update employee handbooks and other communications to include genetic information in any appropriate references to employee protections. Obtain and post the revised EEOC “EEO is the Law” poster, which the agency has updated with information about GINA.
- Review wellness programs with the considerations noted above in mind.