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The Genetic Information Nondiscrimination Act (GINA): a civil rights victory: the law prohibits employers from making adverse employment decisions based on a person's genetic information, including family health history.

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.

How does this impact you? With GINA's protections, you can feel more comfortable sharing your family health history with your relatives and healthcare providers. You may also choose to use genetic testing and other services to learn about health risks without fear of genetic discrimination.

If you feel you've been discriminated against by your employer as a result of genetic testing, first file a claim with the Equal Employment Opportunity Commission (EEOC). The EEOC will assign an investigator to your case, contact your employer, and attempt to resolve the situation through mediation or a lawsuit if necessary.

GINA is a cornerstone in today's world of healthcare; U.S. scientific discovery and medicine would have been at risk had genetic discrimination remained permissible under law. As more people undergo genetic testing, it becomes more likely that researchers will come up with early, lifesaving therapies for a wide range of diseases with hereditary links. Genetic testing also helps doctors catch problems early, leading to preventive treatment and lower overall healthcare costs. Moreover, life science companies are developing new genetic tests that could help physicians identify which drugs will work in which patients, increasing the probability that individuals who take a drug will have a positive outcome.

Simply put, after more than a decade of legislative development and raising awareness, the era of personalized medicine, scientific discoveries and preventative care can now be fully realized without fear of genetic discrimination.

It is important that Americans understand what protections the law offers as well as its limitations. GINA is not applicable to members of the military, federal employees enrolled in the Federal Employees Health Benefits program (FEHB), veterans obtaining healthcare through the Veteran's Administration and individuals covered under the Indian Health Service, although many of these individuals have similar protections under other laws and policies. In addition, employers with fewer than 15 employees are exempt. Finally, although GINA applies to health insurance, its protections do not currently extend to life, long-term care, or disability insurance.

Our hope is that the protections afforded by GINA enable healthier lives in a more just society. Visit for more information.

By: Mark Petruniak, Alyson Krokosky, MS, CGC, and Sharon F. Terry, MA
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Title Annotation:employment
Author:Petruniak, Mark; Krokosky, Alyson; Terry, Sharon F.
Publication:The Exceptional Parent
Geographic Code:1USA
Date:Oct 1, 2011
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