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Washington, DC – The ACLU today commended Congress and the president for enacting the Genetic Information Nondiscrimination Act (GINA), which will stem a growing tide of employer and health insurer bias.


“We are heartened that a dark cloud has been lifted by enactment of the Genetic Information Nondiscrimination Act.” said Caroline Fredrickson, director of the ACLU Washington Legislative Office. “GINA will enable Americans to use genetic tests to illuminate their health care decisions without fear of workplace retribution.”


Signed by President Bush today, it is a groundbreaking step toward securing civil liberties in the emerging field of medical technology as well as a landmark victory for those fighting to ensure civil rights in American workplaces. By providing national guidelines for health insurers, employers and states about how to use information about potential illnesses or medical conditions acquired by genetic tests, the new law safeguards workers from discrimination.


“Doctors have testified that genetic tests reveal the most intimate and personal health-related information that exists about any individual,” said ACLU Senior Legislative Counsel Timothy Sparapani. “While all medical information should be treated as private, genetic information is uniquely sensitive because it reveals potential, but not certain, health concerns, such as a family tendency to have breast cancer.”


“Decisions about how to handle genetic predispositions are intensely personal ones,” continued Caroline Fredrickson. “Discrimination based on a person’s genetic information, just like that based on race or disability, should not be tolerated. 


“Fear of discrimination has had a chilling effect. Fear has caused individuals to refuse potentially life-saving testing as they worried that results would be used to harm them or their families. Now they can regain control over their health.”


Some cases of discrimination have already been documented. For example, one woman from Kentucky was denied health care coverage for her children because they carry a gene for alpha-1 antitrypsin deficiency (AAT), even though her sons are merely carriers and will never develop the condition.


GINA protects Americans from being discriminated against by employers for possible future illness or disability, but ironically it does not protect them from employment discrimination based on current illnesses or disabilities.


“While it’s commendable that the president and Congress championed GINA,” said Fredrickson, “we urge them to complete their job so that all workers with disabilities are protected from unlawful discrimination in the workplace.”


The ACLU urges enactment of the restoration of the Americans with Disabilities Act as well as the Lily Ledbetter Fair Pay Act.


For more information on the Genetic Information Nondiscrimination Act



For more information on issues affecting people with disabilities /disability/index.html


For more information on medical privacy issues /privacy/medical/index.html


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