Genetic Information and Workplace Discrimination FAQ

Federal law prohibits employers from requesting, or making decisions based on, an employee’s genetic information.

The Genetic Information Nondiscrimination Act (GINA), signed in May 2008, is the most recent federal 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. GINA applies to all private employers in the U.S. with at least 15 employees, as well as federal and state government employers.

What Is Genetic Information Discrimination?

GINA prohibits employers from discriminating on the basis of genetic information of an employee, applicant, or family member of an employee or applicant. Although the name of the law includes the word "genetic," family members are not limited to biological relatives. Genetic information discrimination against an employee’s spouse or adopted child, for example, is also illegal.

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. Likewise, an employer cannot ask about family medical history (such as a history of lung cancer) or seek DNA samples from applicants, employees, or their family members.

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. An employer also may not retaliate against an employee or applicant who complains about a violation of GINA or participates in a hearing or investigation of such a violation.

Can Employers Ask for Genetic Information?

Under GINA, there are a handful of exceptions to the rule that employers cannot acquire genetic information. An employer may obtain genetic information legally under any of the following circumstances:

  • The employer acquires such information "inadvertently," for example, through an overheard conversation, information volunteered by employees, or unsolicited emails.
  • 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 requires family medical history from the employee to comply with the certification requirements of the Family and Medical Leave Act (FMLA) or a similar requirement under a state leave law. (For more information on these laws, see our article on taking family and medical leave.)
  • The employer purchases documents that are commercially and publicly available and include family medical history, such as newspapers, magazines, and books. This exception does not apply to medical databases or court records. It also doesn’t apply where the employer searches publicly available documents with the intent of locating genetic information (such as a Google search with the employee’s name and genetic information).
  • The employer is in the business of conducting DNA analysis for law enforcement purposes as a forensic laboratory or to identify human remains, and it needs genetic information from its employees to detect 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.

However, even if one of these exceptions applies and genetic information was obtained legally, the employer still may not use the genetic information as a basis for employment decisions and must keep it confidential.

What Are GINA’s Rules Regarding Confidentiality?

Employers that obtain 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 to whom it pertains, on written request
  • to an occupational or health researcher, for research conducted in compliance with 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
  • 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.

What Is the GINA Safe Harbor?

The Equal Employment Opportunity Commission (EEOC), in its final regulations interpreting GINA, created a safe harbor for employers that receive genetic information in response to a legitimate request for medical information (for example, an FMLA medical certification or documentation to support a request for reasonable accommodation under the Americans with Disabilities Act). To take advantage of the safe harbor, the employer must instruct the medical provider not to provide genetic information by using certain language approved by the EEOC. If the medical provider provides genetic information in spite of the warning, the employer will be considered to have acquired the information inadvertently. The exact safe harbor language to use is available at the EEOC’s small business GINA FAQ page.

Can an Employer Request Genetic Information as Part of a Wellness Program?

Although employers are generally not allowed to gather genetic information, there is a limited exception when it comes to wellness programs. A wellness program is used by employers to encourage healthy lifestyle choices and reduce overall healthcare costs of their employees and families. A wellness program might, for example, ask participants to fill out a health risk assessment questionnaire, undergo blood pressure tests or other biometric screenings, or participate in a weight loss or smoking cessation program.

Genetic testing can be part of a wellness program, subject to the following rules:

  • participation in the program must be voluntary
  • the employee must give written consent prior to testing
  • only the employee or the family member undergoing testing, and the medical professional or genetic counsel providing the services, may receive individually identifiable information about the results, and
  • the results of the test may be revealed to the employer only in aggregate terms that don’t reveal the identity of any individual participant.

Because participation in a wellness program must be voluntary, an employer cannot use punishments or rewards to get an employee to disclose genetic information. An employer may, however, offer a financial incentive for an employee to participate in a health risk assessment, but only if it’s made clear to the employee that the reward will be provided even if he or she refuses to answer questions about family medical history or other genetic information.

The EEOC has carved out a special rule when it comes to an employee’s spouse. An employer may offer a limited financial inducement for a spouse to participate in a wellness program and offer information about his or her past or current health status. The wellness program must be reasonably designed to promote health or prevent disease, and the financial inducement cannot be more than 30% of the cost of self-coverage under the employee’s group health plan. This exception does not apply to an employee’s children.

Can an Employee Be Fired Based on Genetic Information Revealed During a Fitness-for-Duty Exam?

Although GINA prohibits employers from gathering genetic information about employees and applicants, it creates some exceptions for situations in which information is learned accidentally or in the course of otherwise legitimate activities. If an employer receives genetic information in response to a lawful request for medical information (such as a fitness-for-duty exam), it will be considered inadvertent, and therefore not illegal. However, this exception applies only if the employer uses certain language instructing the doctor or other health care provider, ahead of time, not to reveal genetic information. (To learn more, see What Is the GINA Safe Harbor?, above.) As long as the employer does this, it has not violated GINA. However, just because an employer obtains genetic information legally doesn’t mean it can use it. Employers may not use genetic information as a basis for employment decisions period.

What Can an Employee Do If an Employer Violates GINA?

Employees may file a charge of discrimination with the EEOC within 180 days of the GINA violation. This deadline is extended to 300 days if there is a state (or local) agency that enforces a state (or local) law prohibiting discrimination on the basis of genetic information. The EEOC will investigate and try to help the parties reach a resolution. If that’s not possible, the EEOC will issue a letter authorizing the employee to file a lawsuit against the employer in court. To learn more, see our article on how to file an EEOC charge.

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