New Federal Law Protects Employees’ Genetic Information
On May 21, 2008, President Bush signed the Genetic Information Nondiscrimination Act of 2008 (“GINA”). In the employment context, GINA imposes restrictions on employers with respect to collecting, using and disclosing employees’ “genetic information.” GINA defines “genetic information” as “with respect to any individual, information about — (i) such individual’s genetic tests; (ii) the genetic tests of family members of such individual; and (iii) the manifestation of a disease or disorder in family members of such individual.” All employers subject to Title VII of the Civil Rights Act of 1964 (i.e., employers with 15 or more employees) are required to comply with GINA.
Under GINA, employers are prohibited from:
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Discriminating against applicants and employees with respect to the compensation, terms, conditions or privileges of employment based upon genetic information concerning the applicant or employee;
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Limiting, segregating or classifying employees in a way that deprives or tends to deprive any employee of employment opportunities or otherwise adversely affects the status of the employee because of the employee’s genetic information;
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Retaliating against an employee for alleging violations of GINA or participating in the investigation of GINA violations;
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Collecting genetic information about an employee or an employee’s family members (which includes a spouse, dependent, parent, grandparent or great-grandparent). However, an employer may obtain genetic information to the extent required to comply with the Family and Medical Leave Act or similar state laws. Genetic information may also be provided to the employer when necessary to monitor the biological effects of toxic substances in the workplace provided certain conditions are met. Further, it is also not a violation of GINA if an employer “inadvertently” requests or requires an employee to disclose their family medical history or if the employer purchases commercially available documents that contain employees’ genetic information.
GINA also allows for the disclosure of genetic information when it is part of an employee benefit offered by an employer, e.g., genetic counseling as part of a wellness program. In such circumstances however, the employee must provide prior written authorization for the disclosure of genetic information to the service provider and the genetic information cannot be disclosed to the employer offering the benefit.
To the extent genetic information is properly in the possession of an employer, the employer must maintain its confidentiality to the same extent as other types of medical information concerning employees. An employer may disclose genetic information in its possession to third parties when the disclosure is necessary to comply with federal or state medical leave laws, is made to government agencies in connection with an investigation concerning compliance with GINA, is done in response to a court order and notice is provided to the employee, or is made to a public health agency and concerns a contagious disease that poses an imminent hazard of death or life-threatening illness and notice is provided to the employee.
With respect to the employment-related provisions of GINA, remedies available to employees for violations of the Act are the same as those set forth in Title VII of the Civil Rights Act of 1964.
The employment-related provisions of GINA do not take effect until November 21, 2009. However, employers should take steps now to ensure compliance with the Act including becoming familiar with its provisions, ensuring that employee handbooks and other policies and procedures prohibit discrimination based upon employees’ genetic information and confirming that information properly in the employer’s possession containing employees’ genetic information is maintained as confidential.
Additional information regarding GINA can be found at: www.genome.gov/24519851.