The Genetic Information Nondiscrimination Act (GINA), signed in May 2008, prohibits health insurers from using genetic information to deny insurance coverage or determine premiums. It also prohibits employers from making employment decisions based on an applicant's or employee's genetic information and requires employers to keep employee genetic information confidential. GINA applies to federal and state governments, as well as to private employers with at least 15 employees. Read on to learn more about compliance with GINA. (For general information on avoiding workplace discrimination, check out Nolo's Preventing Employment Discrimination FAQ.)
Prohibited Discrimination Under GINA
Employers may not make employment decisions based on genetic information about an employee, an applicant, or a 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.) However, disparate impact claims -- in which an employee alleges that a seemingly neutral employment practice has a disproportionately negative effect on a protected group -- are not allowed under GINA. 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.
Limits on Acquiring or Requesting Genetic Information
GINA prohibits employers from requiring or asking workers to provide genetic information about themselves or a family member. Employers also may not purchase genetic information about employees or their family members. There are a handful of exceptions to these rules (set out below) but, even if an exception applies, employers must keep the information confidential and may not use it as the basis for employment decisions.
Exceptions. It isn't illegal for an employer to obtain genetic information on an employee or family member if one of these exceptions applies:
- The employer inadvertently requests or requires family medical history from an employee or family member.
- The employer offers health or genetic services (as part of a workplace wellness program, for example) and all three of the following are true: 1) the employee provides prior, knowing, voluntary, and written authorization; 2) only the employee or family member receiving services, along with the health care professional or genetic counselor involved in providing the services, receive individually identifiable information about the results; and 3) any individually identifiable genetic information resulting from such services is available only for the purpose of those services and is not disclosed to the employer except in aggregate terms that don't reveal the identity of any individual employee.
- 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.
- The employer purchases documents that are commercially and publicly available and include family medical history. This exception applies to information from newspapers, magazines, and books, for example, but not to medical databases or court records.
- The information acquired is to be used for genetic monitoring of the biological effects of toxic substances in the workplace (only if a number of safeguards are met).
- The employer conducts DNA analysis for law enforcement purposes as a forensic laboratory or to identity human remains and requests or requires genetic information from its employees only for analysis of DNA identification markers as a means of detecting sample contamination.
Confidentiality of Genetic Information
Employers that have genetic information about an employee must keep it on separate forms, in separate files, and treat it as a confidential medical record. It may be revealed only in these circumstances:
- to the employee or family member, upon 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, the employer may disclose only the genetic information expressly authorized by that order (if the court order was obtained without the family member's or employee's knowledge, the employer must notify the employee or family member of the order and of any genetic information disclosed as a result)
- to government officials investigating compliance with GINA, if the information is relevant to the investigation
- in connection with the employee's compliance with the certification requirements of the FMLA or a similar state law, or
- to a federal, state, or local public health agency, an employer may disclose only information about the manifestation of a disease or disorder in an employee's family member if that information concerns a contagious disease that presents an imminent hazard of death or life-threatening illness. The employer must notify the employee of the disclosure.
For more information on the Genetic Information Nondiscrimination Act, see Nolo's upcoming book The Essential HR Desk Reference, due out in April 2011. Or, to locate an employment law attorney in your area, visit Nolo's Lawyer Directory, where you can view information about each lawyer's experience, education, and fees -- and, perhaps most importantly, the lawyer's general philosophy of practicing law. By using Nolo's directory, you can narrow down candidates before calling them for a phone or face-to-face interview.