The legal definition of Genetic information under the Genetic Information Nondiscrimination Act (GINA) includes information about an individual’s genetic tests and the genetic tests of an individual’s family members; information about the manifestation of a disease or disorder in an individual’s family members (i.e. 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 discrimination is any adverse employment action or unfair treatment taken against an employee based solely on their genetic information. This can include refusal to hire, firing, limiting work schedules, denial of promotion opportunities, or any other action which would preclude an individual from receiving the same treatment and opportunities as other employees.

Genetic Information Nondiscrimination Act was passed May 21, 2008. The Act prohibits group health insurers from denying health coverage to a healthy individual or charging that person higher premiums bases solely on a genetic predisposition to developing a disease in the future. Title II of the ACT addresses genetic discrimination in employment. See the law for more information.

Some states have passed genetic information privacy laws related to employment that are similar to the Genetic Information Nondiscrimination Act. These laws restrict the collection and release of genetic information in the same way as the Genetic Information Nondiscrimination Act.

Consult an employment attorney in your state if you have questions about genetic information protection in your state.

GINA protect employees by barring employers from using an employee’s genetic information when making employment decisions, including: hiring, firing, job placement, or promotions. Even when genetic testing reveals that you are more likely than most employees to develop a specific disease, GINA prohibits your employer from making employment decisions (listed above) based on that information. The manifestation of a disease or disorder is also considered genetic information under GINA; your employer is therefore unable to use it against you when making employment decisions.

GINA also makes it unlawful for any employer to limit, segregate, or classify their employees based on their genetic information in any way which would deprive an employee of employment opportunities or otherwise affects their status as an employee.

While it is generally illegal for your employer to access your genetic information, there are six exceptions established by the Equal Employment Opportunity Commission.

• 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.

Yes, if certain requirements are met. An employer that wants to do genetic monitoring that is not required by law must provide written notice of the monitoring program and must obtain an individual’s prior, knowing, written, and voluntary authorization. If the monitoring is required by law, such as under standards issued by the Occupational Safety and Health Administration (OSHA), an employer must provide notice of the monitoring and otherwise comply with the requirements for conducting the monitoring program, but need not obtain the individual’s prior, knowing, written, and voluntary consent.

Furthermore, while individualized genetic information may be disclosed to the employee, and to the doctors and certified genetic counselors involved in the monitoring, the employer may only be given genetic information in aggregate form. As in the case of health or genetic services offered by an employer on a voluntary basis, if information provided in the aggregate makes identification of specific individuals’ genetic information possible because of the small number of participants in a monitoring program, the employer will not violate The Genetic Information Nondiscrimination Act.

Yes, labor unions are subject to the same genetic monitoring restrictions as other employers.

Yes, any genetic information gathered is required by law to be kept in a confidential medical record. Any employer, employment agency, or labor organization which possesses genetic information about an employee or member is required to maintain genetic information on separate forms and in separate medical files.

An employer, employment agency, or labor organization can only disclose genetic information to:

• the employee, or family member who is receiving genetic services, if the employee or family member requests the information in writing,
• An occupational or health researcher if the research is being conducted in compliance with Federal regulations,
• In response to a court order (but only the specific information in the court order and with notice to the employee),
• To government officials investigating Genetic Information Nondiscrimination Act compliance, if the information is relevant to the investigation.

Yes, the Genetic Information Nondiscrimination Act protects employees from workplace harassment. Under the Act it is illegal to harass a person on the basis of their genetic information. This includes making offensive or derogatory remarks about an applicant or employee’s genetic information or family medical history.

1. No. Under the Genectic Information Nondiscrimination Act it is illegal to fire, demote, harass, or retaliate in any other way against an applicant or employee who files a discrimination complaint.