Congress Expected to Pass Health Privacy Protections

ACLU Urges President to Sign 1st Civil Rights Bill of 21st Century

FOR IMMEDIATE RELEASE
Contact: (202) 675-2312 or media@dcaclu.org

WASHINGTON DC – After more than a decade of debates, hearings and votes, Congress is expected to pass legislation referred to as the first civil rights bill of the 21st century that is a critical step toward securing civil liberties in the emerging field of medical technology.

The ACLU urges President Bush to live by his words in support of health privacy protections and sign the Genetic Information Nondiscrimination Act of 2007 – known as GINA, into law.

GINA would provide a national framework to direct companies and states on how to protect information acquired by genetic tests and protect against genetic discrimination. It will also regulate appropriate use of such information so employers and health insurers do not misuse it in a discriminatory way.

“I hope this president has the compassion and the foresight to see that enactment of this bill is critical for all American families. As information about individuals’ genetic predispositions to develop medical conditions becomes more available, GINA will enable us to keep information about our bodies to ourselves,” said Caroline Fredrickson, director of the ACLU Washington Legislative Office. “Decisions about how to handle genetic predispositions are intensely personal ones,” Fredrickson continued. “Discrimination based on a person’s genetic information, just like that based on race or disability, should not be tolerated.”

“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.”

Sparapani explained that genetic information may allow for early diagnosis and treatment. It can ensure that people can make informed decisions and retain maximum control over their health. This information can also be misused to deny individuals health care insurance and employment. 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.

Fredrickson added, “This law is needed because the occurrence of such cases is certain to increase as genetic testing becomes more common in the near future. Fear of such discrimination will also have a chilling effect, causing individuals to refuse potentially life-saving testing due to fear of how the results will be used by employers, insurers, or the government.”

“While the emerging field of medical technology brings great promise to help people prevent disease, it also has the potential to enable employers to discriminate, as some already apparently have,” said Sparapani. “The president needs to enact GINA now before Americans are unfairly denied access to health care or face workplace discrimination.”

In addition to health care benefits, employment discrimination and insurance misuse are very real concerns. Genetic information can be used by employers to weed out job candidates who are more likely to become an economic burden due to illness.

The Council for Responsible Genetics has reported on hundreds of genetic discrimination cases, including one involving “a social worker who lost her job within a week of mentioning that her mother had died of Huntington’s disease and that she had a 50 percent chance of developing it.”

As more health information reaches the hands of employers and insurers through electronic data systems, individuals with genetic susceptibility to a debilitating disease could find that they, their children, and even their grandchildren are regarded as unemployable or uninsurable.

To view the ACLU’s letter to the Senate urging support of S. 358, go to:
/privacy/gen/34993leg20080423.html

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