By Petruniak, Mark; Krokosky, Alyson; Terry, Sharon F.
The Exceptional Parent , Vol. 41, No. 10
Imagine laboring with heavy machinery for long hours every day. Days become weeks and weeks fly by until the effects of 15 years of work leave your hands numb and your body constantly aching. Your livelihood decreases, and you're afraid you can't continue your job. Then, you notice co-workers experiencing the same nightmare. In 2001, that was the reality for Dave Escher and 35 employees of the Burlington Northern Santa Fe (BNSF) Railroad Company who were affected by symptoms of carpel tunnel syndrome.
Mr. Escher and his co-workers were denied benefits. The reason? The results of a genetic test they had been given without their knowledge. BNSF interpreted the law at the time to say that they had no obligation to compensate any employees for carpel tunnel syndrome if those employees carried mutations in a gene predictive for developing the disease. The employees sued, and the case added fuel to the fire that was raging toward legislation to combat genetic discrimination.
From 1996 throughout the 2000s, support for genetic nondiscrimination legislation grew. President George W. Bush issued two Statements of Administration Policy, and the Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS) released multiple publications and letters of support. Advocates banded together as the Coalition for Genetic Fairness (CGF)-a group of more than 500 organizations chaired by Genetic Alliance--and visited Capitol Hill to educate lawmakers about the need for this legislation. In 2008, twelve and a half years into the fight, President Bush officially signed the Genetic Information Nondiscrimination Act (GINA) into law. The late Senator Edward Kennedy (D-MA), in a historic speech on the floor of the Senate the day GINA passed that chamber, said that GINA was the "first major new civil rights bill of the new century."
The law prohibits employers from making adverse employment decisions based on a person's genetic information, including family health history. It also forbids insurance companies from discriminating against individuals by reducing their coverage or increasing premiums. In addition, employers and health insurers are not allowed to request or demand a genetic test under the law.
"Because of this legislation, Americans will be free to undergo genetic testing for diseases such as cancer, heart disease, diabetes, and Alzheimer's without fearing for their job or health insurance," said House speaker Nancy Pelosi (D-CA) in a statement following the bill's passage. …