GINA or the Genetic Information Non-discrimination Act has been around for well over 14 years. It prohibits discrimination by an employer against employees or applicants because of genetic information. It also prohibits employers from using genetic information when making employment decisions and restricts them from requesting, requiring, or even purchasing genetic information as well as limiting disclosure of such information if they obtain it.
Genetic information includes information about an individual’s genetic tests and the genetic tests of an individual’s family members. It also includes information about the manifestation of a disease or disorder in an applicants or employee’s family.
The prevalence of employers doing “genetic testing” of employees or applicants is almost zero, but that is not where the problem and risk of GINA violation really is. Where problems arise is when the employer obtains family medical history acquired by “request”. This includes:
- Conducting an internet search on an individual in a way that is likely to result in the employer obtaining genetic information
- Actively listening to a third-party conversation or searching an individual’s personal effects for the purpose of obtaining genetic information; and
- Making requests for information about an individual's current health status in a way that is likely to result in an employer obtaining genetic information.
Most potential GINA violations could arise quite innocently if not careful.
First, employers generally may not ask for family medical history, and they should check with their health care providers to ensure they are not collecting genetic information as part of an employment related medical exam. There are six exceptions to this rule:
- If the employer obtains it as part of a health or genetic service, that may be part of say a wellness program and is provided on a voluntary basis;
- In the form of family medical history, to comply with the certification requirements of the Family and Medical Leave Act and state or local leave laws;
- When the sources are from commercially and publicly available sources such as newspapers, books, or even electronic sources;
- As part of genetic monitoring required by law or provided on a voluntary basis;
- When obtained in the course of a legal investigation for purposes of forensic testing as ordered for law enforcement purposes and;
- Where the information is acquired inadvertently.
This last exception could get employers in some trouble. What is “inadvertent”?
The Equal Employment Opportunity Commission has posited several situations where obtaining family medical information could be done inadvertently.
For example, questioning the employee’s general wellbeing when a condition is brought to the attention of the employer. Also inadvertent are questions about the employee's family if being asked about a family member that was diagnosed with say cancer.
This is where employers need to watch out and know that the information they obtain in this fashion is now covered and protected by GINA.
It is recommended that if an employer is handling health related information for lawful purposes such as responding to a request for a reasonable accommodation under the Americans With Disabilities Act or a request for sick leave, employers should advise the employee or the health care provider that is requesting such info to not disclose such genetic information. This warning may be written or verbal.
The GINA regulations suggest using language that states:
The Genetic Information Non-discrimination 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 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 members 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 and individual or an individual’s family member or an embryo lawfully held by and individual or family member receiving assistive reproductive services.
This can be used in an employee handbook’s GINA policy with some modification. Handbooks should include a generic GINA policy.
The EEOC advises using this type of warning. If any genetic information is obtained this would be considered inadvertent.
For more information about GINA and other employment compliance information ASE members can login to the ASE Member Dashboard and access the Zywave HR Services Suite or CCH HRAnswers Now.
Source: HR Compliance Overview. HR Q & A GINA Zywave Library