Workplace Fairness

Is genetic discrimination in the workplace affecting you? The ability to conduct genetic testing is one of the great benefits of medical research in the modern age. Today we can have access to information about our genetic predisposition for specific diseases or health problems and take action, if needed, to give ourselves and our children the best chance for a healthy and long life. But along with the benefits of progress come risks, including genetic discrimination in the workplace. If you participate in a genetic research trial, or get information from a genetic test about your risk of disease, does your employer have access to that information? Can your employer even deny you a promotion or otherwise discriminate against you because of it? There are laws that protect you and your genetic information from discrimination. Find out more about genetic discrimination in the workplace below.

This page will answer the following questions:

1. What is genetic information?
2. What is genetic information discrimination?
3. What federal law covers genetic information discrimination?
4. Do State employment discrimination laws protect workers from genetic information discrimination?
5. How does GINA protect employees?
6. When can an employer ask for my genetic information?
7. When can an employer use genetic monitoring?
8. Are labor unions subject to the same genetic monitoring restrictions as other employers?
9. Is my genetic information kept confidential?
10. Can an employer ever disclose my genetic information?
11. Does GINA protect me against workplace harassment?
12. Can I be retaliated against if I file a complaint for genetic information discrimination?

1. What is genetic information?

   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.

2. What is genetic information discrimination?

   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.

3. What federal law covers genetic information discrimination?

   GINA 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 GINA addresses genetic discrimination in employment.

4. Do State employment discrimination laws protect workers against genetic information discrimination?
   
   Currently 35 states have enacted legislation that protect employees from genetic discrimination in the workplace (including Arizona, Arkansas, California, Connecticut, Delaware, D.C., Hawaii,  Illinois, Iowa, Kansas, Louisiana, Maryland, Massachusetts, Michigan, Minnesota, Missouri, Nebraska, Nevada, New Hampshire, New Jersey, New Mexico, New York, North Carolina, Oklahoma, Oregon, Rhode Island, South Dakota, Texas, Utah, Vermont, Virginia, Washington, and Wisconsin).
   
   
5. How does GINA protect employees?

   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.

6. When can an employer ask for my genetic information?

   While it is generally illegal for your employer to access your genetic information, there are six narrow exceptions as listed by the EEOC. (http://www.eeoc.gov/laws/types/genetic.cfm)

   • 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.
7. When can an employer use genetic monitoring?

   Employers can use genetic monitoring to measure the biological effects of toxic substances in the workplace only if the employer satisfies all of the following conditions:

   • The employer provides employees written notice of the monitoring;
   • The employee gives prior written, knowing, and voluntary consent, or the monitoring is required by Federal or State law;
   • The employee is informed of their individual monitoring results;
   • The monitoring is in compliance with any Federal genetic monitoring regulations through either the Secretary of Labor, OSHA, the Federal Mine Safety and Health Act of 1977, the Atomic Energy Act, or State genetic monitoring regulations;
   • And the employer receives the results of the monitoring in terms that do not identify any specific employee; unless the employer conducts DNA analysis for law enforcement purposes.
8. Are labor unions subject to the same genetic monitoring restrictions as other employers?

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

9. Is my genetic information kept confidential?

   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.

10. Can an employer ever disclose my genetic information?

    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 GINA compliance, if the information is relevant to the investigation.
11. Does GINA protect me against workplace harassment?

    Yes, GINA protects employees from workplace harassment. Under GINA 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.

12. Can I be retaliated against if I file a complaint for genetic information discrimination?

    No. Under GINA it is illegal to fire, demote, harass, or retaliate in any other way against an applicant or employee who files a discrimination complaint.

Additional Resources

• NHGRI Genome Statute and Legislation Database