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.
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.
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:
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.
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:
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.
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:
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.
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.