The Genetic Information Nondiscrimination Act of 2008 (GINA) prohibits employers and other entities covered by GINA Title II from requesting, requiring or purchasing genetic information of employees or their family members. Although it has been in effect for over a year the Federal Government just issued regulations about its application. The biggest clarification under the rules is what constitutes acquisition of genetic information.

According to new EEOC regulations, a request for genetic information even includes “conducting an Internet search in a way that is likely to result in obtaining genetic information, as well as ‘actively listening’ to third-party conversations or making requests for information about an individual’s current health status in a way that is likely to result genetic information.”

There are circumstances when an employer may legitimately come into possession of genetic information without violating GINA’s prohibition on requesting, requiring or purchasing genetic information. However, confidentiality and prohibitions on use remain. These circumstances include:

  • Where information is acquired inadvertently. For example, a casual reference overheard at a water cooler that an employee’s mother has breast cancer and that the employee herself has been tested for a gene related to that, will not be a violation. Similarly, employers who employ multiple family members will have a little more flexibility obtaining information from one family member without that being an offense against another family member (remember that one employee’s manifestation of disease or disorder could be the family medical history of the brother or sister or father, mother, uncle and so on who also works for the employer).
  • Where information is acquired as part of health or genetic services, including wellness programs. Employers are free to offer financial and other incentives to encourage employees to participate in wellness programs, though they cannot offer those incentives to provide genetic information. Employees may still be provided the questionnaires seeking the information, but must be told that they need not provide genetic information in order to receive the incentive, and in fact, a particular notice provided below is recommended.
  • Where information is acquired in the form of family medical history in order to comply with Family Medical Leave Act, or Nebraska or other local leave laws, or even certain employer leave policies requiring, for example, return to work certification.
  • When information comes from sources that are commercially or publically available, such as newspapers, books, magazines, and even electronic sources. This exception does not apply to court records, medical or research databases, or other sources with limited access such as social networking sites that require a creator’s permission to access. Similarly commercially available sites an employer intentionally accesses with intent to gather, or from which an employer is likely to gather such genetic information are prohibited.
  • Where information is gathered as part of a legitimate genetic monitoring program required by law or provided on a voluntary basis. For example, employers may be required to perform such tests to see if employees are being harmed by substances or energies in the workplace. If doing monitoring that is not required by law, proper notification and fully informed authorization of the employee must be obtained. Similarly, if required by OSHA or otherwise by law, certain notifications may be required. In either case, consultation with an attorney is likely critical before conducting such monitoring.
  • Where information is conducted by employers who do DNA testing for law enforcement purposes as a forensic lab, or for human remains identification. Any such employee genetic information can only be used for analysis of DNA markers for quality control, to detect sample contamination.

Whenever lawfully requesting information from an employee that may reveal genetic information, for example through a wellness program, to support an ADA accommodation request, request for sick leave, FMLA or similar certification, or otherwise, employers should include the following notification:

“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 employees or their family members. In order 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.”

Whenever the notice is properly given it will provide a safe-harbor for employers, and any such acquisition will be considered inadvertent, and therefore not a GINA violation.

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