Meet GINA (the Genetic Information Nondiscrimination Act), the most recent civil rights law on the books. GINA makes it illegal for employers to make employment decisions based on genetic information about applicants, employees, or their families. It also generally prohibits employers from gathering genetic information and requires employers to keep confidential any genetic information they obtain through legal methods. Read on to learn more about GINA and the confidentiality of genetic information. (For more tips on protecting your privacy on the job, check out Nolo's Your Right to Privacy in the Workplace topic.)
Discrimination Is Prohibited Under GINA
The nondiscrimination part of GINA is fairly straightforward: Employers may not base employment decisions on an employee's or applicant's genetic information, including the genetic information of a family member. Genetic information includes the results of genetic tests or the manifestation of a particular disease or disorder in the employee's family. For example, an employer may not refuse to consider an applicant because she carries BRCA1 or BRCA2 (the genes thought responsible for most inherited breast cancers) or fire an employee because he carries the trait for sickle cell anemia. Whether the employer is motivated by stigma or stereotypes associated with the disease or by a desire to reduce health care costs, decisions like these are illegal.
Acquiring Genetic Information
With a few exceptions, GINA prohibits employers from requiring or asking employees to provide genetic information -- for example, by requiring genetic testing as a condition of employment. Employers also may not purchase genetic information about employees or their family members.
There are a handful of exceptions to this prohibition on the employer's acquisition of employees' genetic information. An employer may obtain genetic information legally if:
- The employer requests or acquires such information "inadvertently" (for example, through an overheard conversation, information volunteered by employees, or unsolicited email messages).
- The employer gets the information through health or genetic services it offers (as part of a wellness program, for example) in which participation is voluntary, the employer doesn't receive any individually identifiable information, and other requirements are met.
- The employer gets family medical information to comply with the certification requirements of the Family and Medical Leave Act or a similar state law. (For more information on the Family and Medical Leave Act, see Nolo's article Taking Family and Medical Leave.)
- The employer purchases documents that are commercially and public available and include family medical history. This exception applies to newspapers, magazines, and books, for example, but not to medical databases or court records.
- The employer conducts DNA analysis for law enforcement purposes as a forensic laboratory or to identify human remains, and requests or requires genetic information from employees only as a means of detecting sample contamination -- that is, to separate employee DNA from the DNA the lab is examining.
- The information is to be used for genetic monitoring of the biological effects of toxic substances in the workplace, if a number of safeguards are met.
(Note: Even if one of these exceptions applies and genetic information was obtained legally, the employer still may not use the genetic information and must keep it confidential.)
Confidentiality of Genetic Information
Employers that have genetic information about an employee must keep it on separate forms and in separate files and treat it as a confidential medical record. Genetic information may be revealed only in very limited circumstances and only to certain people, as follows:
- to the employee or family member, on written request
- to an occupation or health researcher for research conducted in compliance with part 46 of Title 45 of the Code of Federal Regulations (these are the Department of Health and Human Services' rules for the protection of human research subjects)
- in response to a court order (but the employer may disclose only the genetic information expressly authorized by that order)
- to government officials investigating compliance with GINA
- in connection with the employee's compliance with the certification requirements of the Family and Medical Leave Act or a similar state law, or
- the employer may disclose to a government health agency information about the manifestation of a disease or disorder in an employee's family member, if the information concerns a contagious disease that presents an imminent hazard of death or life-threatening illness.
To learn more about GINA and the steps to take if you believe an employer has discriminated against you, get Your Rights in the Workplace, by Barbara Kate Repa (Nolo).