Genetic Information Nondiscrimination Act (GINA)
The Genetic Information Nondiscrimination Act (commonly referred to as GINA) prohibits discrimation or harrassment based on genetic information when it comes to health insurance and any aspect of employment. Any genetic information which is obtained by an employer must be kept confidential. GINA is enforced by the Equal Employment Opportunity Commission (EEOC) .
Definition of “Genetic Information”
Genetic information includes information about:
- An individual’s genetic tests
- The genetic tests of an individual’s family members
- 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
- The genetic information of a fetus carried by an individual or by a pregnant woman who is a family member of the individual
- The genetic information of any embryo legally held by the individual or family member using an assisted reproductive technology.
Discrimination Because of Genetic Information
The law forbids discrimination on the basis of genetic information when it comes to any aspect of employment, including hiring, firing, pay, job assignments, promotions, layoffs, training, fringe benefits, or any other term or condition of employment.
Harassment Because of Genetic Information
Under GINA, it is also illegal to harass a person because of his or her genetic information.
Examples of harassment include:
- Making offensive or derogatory remarks about an applicant or employee’s genetic information,
- Making offensive or derogatory remarks about the genetic information of a relative of the applicant or employee.
Under GINA, it is illegal to fire, demote, harass, or otherwise “retaliate” against an applicant or employee for filing a charge of discrimination, participating in a discrimination proceeding (such as a discrimination investigation or lawsuit), or otherwise opposing discrimination. (NOTE: WHile a complaint to the EEOC is private, keep in mind that if you decide to go to court, a court action is a public record. Future employers will likely know about the lawsuit.)
Rules Against Acquiring Genetic Information
It will usually be unlawful for a covered entity to get genetic information. There are six narrow exceptions to this prohibition:
- Inadvertent acquisitions of genetic information do not violate GINA, such as in situations where a manager or supervisor overhears someone talking about a family member’s illness.
- Genetic information (such as family medical history) may be obtained as part of health or genetic services, including wellness programs, offered by the employer on a voluntary basis, if certain specific requirements are met.
- Family medical history may be acquired as part of the certification process for FMLA leave (or leave under similar state or local laws or pursuant to an employer policy), where an employee is asking for leave to care for a family member with a serious health condition.
- Genetic information may be acquired through commercially and publicly available documents like newspapers, as long as the employer is not searching those sources with the intent of finding genetic information or accessing sources from which they are likely to acquire genetic information (such as websites and on-line discussion groups that focus on issues such as genetic testing of individuals and genetic discrimination).
- Genetic information may be acquired through a genetic monitoring program that monitors the biological effects of toxic substances in the workplace where the monitoring is required by law or, under carefully defined conditions, where the program is voluntary.
- Acquisition of genetic information of employees by employers who engage in DNA testing for law enforcement purposes as a forensic lab or for purposes of human remains identification is permitted, but the genetic information may only be used for analysis of DNA markers for quality control to detect sample contamination.
Confidentiality of Genetic Information
It is also unlawful for a covered entity to disclose genetic information about applicants, employees or members. Covered entities must keep genetic information confidential and in a separate medical file. (Genetic information may be kept in the same file as other medical information in compliance with the Americans with Disabilities Act.) There are limited exceptions to this non-disclosure rule, such as exceptions that provide for the disclosure of relevant genetic information to government officials investigating compliance with Title II of GINA and for disclosures made pursuant to a court order.