This article is part of the Arthritis Archives.
Dateline: February 28, 2001
Genetic Testing
By all accounts, genetic testing is regarded as significant progress in medical research. It's hard to imagine that genetic testing could be used in a negative way. But that's exactly what John Wiebelhaus and Harry Zanville are alleging. Who are Wiebelhaus and Zanville?
As reported in the February 19, 2001 U.S. News & World Report, John Wiebelhaus is a fourth generation railroad worker, specifically, a track maintenance foreman employed by Burlington Northern Sante Fe Railroad (BNSF). Harry Zanville is the attorney representing the railworkers union at BNSF. In a lawsuit filed in federal court, Wiebelhaus and Zanville have accused BNSF of covert genetic testing. The suit charges that 125 workers recently gave blood samples and at least 18 were unknowingly and without consent subjected to genetic testing. Why? Zanville claims the company is trying to wiggle out of paying millions of dollars for medical bills and disability to workers who develop carpal tunnel syndrome, using blood tests to prove predisposition to the disease.
Americans With Disabilities Act
The federal lawsuit is the first of its kind against a private company. The lawsuit charges that secret testing violates the ADA (Americans with Disabilities Act) as well as several state laws which prohibit genetic testing by employers, and wreaks of discrimination. The EEOC (Equal Employment Opportunity Commission) filed similar suit separately in a federal court in Iowa.
In actuality, the ADA bans workplace discrimination but does not mention privacy. Since neither the ADA nor state Human Rights Act specifically prohibit genetic testing or genetic discrimination, some employers continue to test the limits.
In February 2000, President Clinton signed an executive order which prohibited discrimination based on genetic testing for federal workers. In Congress, bills have been proposed to afford the same protections to the private sector. Rep. Louise Slaughter (D-NY) introduced H.R. 2457, the "Genetic Nondiscrimination in Health Insurance & Employment Act". The purpose of the bill was:
- to disallow insurers from using genetic information to restrict enrollment or alter fees
- to prevent genetic discrimination in all areas of employment
- to prohibit employers and insurers from requiring genetic testing
Similar proposed legislation is expected during the 107th Congress. Opponents to genetic testing in the workplace believe employment should be based on qualifications and performance, not predisposition to disease. On the other hand, proponents believe employers have a right to know if a prospective employee is susceptible to a particular disease.
Though certain genetic tests can predict predisposition to disease and likelihood, such tests do not account for when symptoms will develop or how severe the symptoms will be. If employers are allowed to hide from potential healthcare cost by using genetic testing, will only healthy individuals with no predisposition to disease be hired? Does such a scenario seem reasonable or equitable?
If you believe that genetic testing by employers should be made illegal, urge your senators and congressman to take a stand on genetic discrimination.
Related Resources
Sources: The dark side of genetic testing, by Dana Hawkins, US News & World Report, 2/19/01; Guard your genetic data from those prying eyes, by Dana Hawkins, US News & World Report, 3/5/01; The Genetic Surprise, The Wilson Quarterly, Fall 2000; The Controversy Over Genetic Discrimination; Gene Screen: Genetic tests by employers should be banned, The Michigan Daily, 7/6/99
First published: 2/28/2001
