The federal Genetic Information Nondiscrimination Act (GINA) took effect in 2009. Today, most employers have still never heard of the law, which makes it illegal to discriminate against employees and applicants because of genetic information. Those employers who have heard of GINA probably don’t understand how expansive its protections are.
First, the law defines “genetic information” extremely broadly. It’s not just the results of genetic tests.
Second, the law not only directly prohibits harassment and other discrimination, but also has strict rules against acquiring genetic information.
What Is Genetic Information?
“Genetic information” includes information about:
- An individual’s genetic tests;
- The genetic tests of that individual’s family members;
- The manifestation of disease or disorder in family members of the individual (family medical history);
- An individual’s request for, or receipt of, genetic services, or the participation in clinical research that includes genetic services by the individual or a family member of the individual; or
- The genetic information of a fetus carried by an individual or by a pregnant woman who is a family member of the individual and the genetic information of any embryo legally held by the individual or family member using an assisted reproductive technology.
Genetic information does not include information about the sex or age of the individual, the sex or age of family members, or information about the race or ethnicity of the individual or family members that is not derived from a genetic test.
GINA also defines “family member” broadly to include:
(1) A person who is a dependent of that individual as the result of marriage, birth, adoption, or placement for adoption; or
(2) A first-degree, second-degree, third-degree, or fourth-degree relative of the individual, or of a dependent of the individual.
In other words, family member includes the employee or applicant’s parents, siblings, children, (great) (great-great) grandparents, (great) (great-great) grandchildren, (great) uncles, (great) aunts, nephews, nieces, first cousins, and first cousins once-removed. And it also includes all of those relatives of the individual’s dependents, which could include step-children and adopted children. Hence, an employee’s genetic information could include information that has absolutely no genetic relationship to them personally!
GINA Prohibits Discrimination
GINA applies to all U.S. employers with 15 or more employees. It prohibits the use of genetic information in making employment decisions. This includes hiring, firing, promotions, compensation, and other terms and conditions of employment.
The law also prohibits harassment and retaliation related to genetic information.
Rules on Acquisition of Genetic Information
GINA also generally prohibits employers from requesting, requiring, or purchasing genetic information about applicants and employees.
These rules may be the biggest trap for the unwary under this law. While most employers aren’t trying to discriminate based on genetic information (even as broadly defined here), they might be acquiring genetic information, especially family medical history.
The EEOC’s GINA regulations indicate that:
“Request” includes conducting an Internet search on an individual in a way that is likely to result in a covered entity obtaining genetic information; actively listening to third-party conversations 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 a covered entity obtaining genetic information.
There are several exceptions to the rule against acquiring genetic information related to:
- Inadvertent requests
- An employer’s voluntary wellness program
- Family and Medical Leave Act (FMLA) certification
- Acquisition through commercially and publicly available sources (e.g., newspapers, magazines, books)
- Monitoring the biological effects of toxic substances in the workplace
- Contamination testing by an employer conducting DNA analysis as a forensic laboratory
These potential exceptions have nuanced parameters and require detailed analysis under the circumstances.
Of particular note, the EEOC regulations include specific safe-harbor language for requesting medical information about the employee. Using this language will protect the employer regarding receipt of any medical information that the provider discloses:
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 an individual or family member of the individual, except as specifically allowed by this 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 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.
GINA Confidentiality Requirements
GINA requires that employers maintain any genetic information they obtain about applicants and employees in medical files that are separate from personnel files and treat the information as a confidential medical record.
This is similar to the Americans with Disabilities Act (ADA) protections for an employee’s own medical information.
Learn More
Were you already familiar with GINA? Surprised to learn how much it covers? Want to make sure you’re on top of other important employment law compliance issues?