Number 43: The Genetic Information Nondiscrimination Act of 2008
As momentous as it was, the passage of the Civil Rights Act of 1964 was, in many ways, an incremental, evolutionary response to centuries of racial, gender, and other types of discrimination. This is not unusual in the business of making law: there is a problem that goes on for some time (and often, way too long) that is finally addressed. On rare occasions, however, the law looks as much to the future as it does to the past. The Genetic Information Nondiscrimination Act of 2008 (GINA) falls in this latter category, as it attempts to address problems, present and ostensibly future, arising from the revolutionary mapping of the human genome.
Background: In 2008, after an 11 year lobbying effort by a coalition of biotech and public interest groups, and based in part upon stem cell research concerns as well as the discovery of genetic markers for health conditions specific to certain ethnic groups, GINA was signed into law. The stated goal of the legislation was to outlaw discrimination in health insurance and employment based upon genetic information. Although GINA is a standalone act and does not modify Title VII, GINA employment discrimination provisions are modeled upon, and are positioned as an adjunct to, Title VII claims.
What It Does: GINA prohibits the use of genetic information in making decisions related to any terms, conditions, or privileges of employment, including hiring, firing, and opportunities for advancement; restricts employers and other entities from requesting, requiring, or purchasing genetic information (with limited exceptions); generally requires covered entities to keep any genetic information they have about applicants or employees confidential; and prohibits retaliation. Since the GINA employment provisions were modeled upon Title VII, it appears that the theories of recovery under Title VII, including harassment, also apply to GINA claims.
What is “Genetic Information”: “Genetic information” includes information about an individual’s genetic tests; information about the genetic tests of a family member; family medical history; requests for and receipt of genetic services by an individual or a family member; and genetic information about a fetus carried by an individual or family member or of an embryo legally held by the individual or family member using assisted reproductive technology.
Tests used to determine whether an individual has a certain genetic variant associated with predisposition to a disease are considered a genetic test, such as a test to determine whether an individual has the genetic variants associated with a predisposition to breast cancer. Other examples of genetic tests include those using genetic analysis to determine the risk of conditions such as cystic fibrosis, sickle cell anemia, spinal muscular atrophy, a variant of Huntington’s Disease, or fragile X syndrome in future offspring. On the other hand, a test for the presence of drugs or alcohol, an HIV test, and a cholesterol test are not considered “genetic tests.”
Where does the ADA end and GINA begin? Without more, GINA does not protect individuals discriminated against on the basis of impairments that have a genetic basis, such as certain forms of breast cancer. One can think of this as a sort of division between the present and the future. Discrimination based upon present ailments and health issues would be covered under the ADA (assuming the condition qualifies as a disability). GINA is concerned primarily with protecting those individuals who may be discriminated against because an employer thinks they are at increased risk of acquiring a condition in the future.
Exceptions: The prohibition on the use of genetic information in employment decision-making is quite broad, based upon the logic that an employee’s chance of developing a disease or disorder in the future is unrelated to his or her current ability to perform a job. This prohibition aside, there are six narrowly-defined situations in which a covered entity may acquire genetic information.
- Where the information is acquired inadvertently;
- As part of health or genetic services (including a wellness program) that a covered entity provides on a voluntary basis;
- In the form of family medical history to comply with the certification requirements of the Family and Medical Leave Act, state or local leave laws, or certain employer leave policies;
- From sources that are commercially and publicly available, such as newspapers, books, magazines, and certain electronic sources;
- As part of genetic monitoring that is either required by law or provided on a voluntary basis; and
- By employers who conduct DNA testing for law enforcement purposes as a forensic lab, or for human remains identification.
The acquisition of genetic information would be considered inadvertent, for example, in a situation in which a manager or supervisor acquires genetic information by overhearing a discussion between co-workers that one employee has an increased genetic risk for breast cancer. Likewise, an employer is not liable under GINA for acquiring genetic information from sources that are commercially and publicly available, such as newspapers, books, magazines, periodicals, television shows, movies, or the Internet. This exception would not apply to information obtained from medical databases, court records, or research databases available to scientists on a restricted basis.
Where Things Stand: To date, although several lower courts have discussed GINA, there have not been many appellate judicial opinions to interpret and provide guidance upon this statute. What does seem clear at this point is that there must be a specific link between the collection of genetic information and a change in the terms or conditions of an employee’s employment.
What is also clear is that employers must be very careful regarding what information they collect about employees. The collection of pre-employment medical histories, which before may have seemed innocuous (and may or may not be important to the relevant job requirements) can set the stage for a GINA claim. Employers should carefully examine such practices, in conjunction with counsel, to determine if such practices should be modified or even abandoned.