With no protections about how genetic information will be used and dispersed once it is obtained, genetic testing raises questions of privacy. Who in the organization will be allowed to see test results? Where will the results be kept? What other types of organizations may end up with the employee’s results? Privacy experts believe that results will be misused by targeting employees in hiring and insurance coverage decisions. Without specific privacy controls, the information gleaned by one employer could be given to an employee’s future employer, thus following the employee from one job to another. Since testing is already occurring, current legislation is behind in protecting employees.

Presently, protections for employees are coming from state legislatures and indirectly from interpretations of current law. The Health Insurance Portability and Accountability Act (HIPAA) prohibits health plans from using genetic information for denying coverage, limiting coverage, or charging higher premiums for those individuals who are found to be predisposed to medical conditions. HIPAA is the only federal law that prohibits genetic discrimination, and the protections apply only to insurance discrimination. Discrimination protection for employees comes from state legislatures. There is an increasing trend by states in passing laws preventing employers from discriminating based on genetic test results. More than half of the states have such legislation and, in some cases, even counties have stepped forward to create laws prohibiting discrimination. In December of 2000, Montgomery County, Maryland became the first local jurisdiction to enact an anti-genetic discrimination law. Additionally, in 2000, President Clinton signed a bill that prohibited discrimination by public employers.

Despite the lack of formal law from Congress, the federal government has started responding to the increasing use of genetic tests. In 2001, the Equal Employment Opportunities Commission (EEOC) imposed an injunction on the Burlington Northern Santa Fe Railway Company prohibiting the organization from performing genetic tests on employees. The organization had been testing employees for their predisposition to carpal tunnel syndrome, without the employees knowing why they were being tested. One employee’s wife believed the testing facilities were taking too much blood for a routine medical exam and the employee later discovered that the extra blood was being used for genetic testing purposes. He refused to take the test and was threatened with discharge if he did not submit a sample. This employee then went to the EEOC. In May of 2002, the EEOC and Burlington Northern were able to come to an agreement to stop genetic testing through mediation. Though this case does not set any legal precedent regarding genetic testing, it does demonstrate that the EEOC is beginning to support the idea that gathering genetic information could violate major laws (chiefly the Americans with Disabilities Act).

With regards to the Americans with Disabilities Act (ADA), the regulation only protects those employees with current disabilities. The issue with genetic testing is that it only indicates what may happen to an employee. Making employment decisions based on possibilities does not violate the ADA’s clause that a disability must be an employee’s current disability. If an employee had a predisposition to a certain disease, new questions are raised. Can the employer prevent an employee from working in a specific job that may aggravate a future condition? Even if there were a predisposition for a certain medical condition, would that medical condition even be considered a disability by the ADA? In the case of Burlington Northern, the organization was testing for carpal tunnel syndrome.

In the recent Ragsdale case (look at our legal update), carpal tunnel is not truly considered as impairing a major life function and not typically covered by the ADA. In addition to all these considerations, do employers even have the right to protect employees from themselves? Currently, all that is acceptable is keeping the workplace safe. If an employee were predisposed to a condition and “should not” work a job because it would increase the chances of the onset of a particular disease, organizations cannot paternalistically decide for the employee whether he/she stays in the position.

In addition, even if a disability may not be covered, what about the clause in the ADA that deals with a perceived disability? Though it has not been tested in court or been shown to be an issue, the ADA also protects those who are perceived to have a disability. The results of genetic testing could lead to an employer having the perception of an employee having a disability which could lead to that employee falling under the protection of this law. Though this is only a hypothesis, this idea leads to the conclusion that testing of this sort in any way could develop risks for an employer.