ACLU Letter to the Senate Urging Support of S. 358, the “Genetic Information Nondiscrimination Act of 2007”

April 23, 2008
Dear Senator,

On behalf of the ACLU, a non-partisan organization with hundreds of thousands of activists and members, and 53 affiliates nationwide, we urge you to support S. 358 the “Genetic Information Nondiscrimination Act of 2007.”  Its companion bill, H.R. 493, sponsored by Rep. Louise M. Slaughter, passed the House with overwhelming support last April.  This important legislation is a critical step toward securing civil liberties in the emerging field of medical technology.

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Genetic information may identify an individual’s predisposition to develop certain diseases, allowing for early diagnosis and treatment and ensuring that people can make informed decisions and retain maximum control over their health.  This information, however, can also be misused to deny individuals health care and employment.  Some cases of discrimination have already been documented.  For example, one woman from Kentucky was denied health care 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.  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.

In addition to denial of 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 or who fit some otherwise predetermined and biased profile of the “perfect employee”.  Similarly, such information can be used by insurers to cherry pick the best customers.  The relentless commercialization of health information through the health IT industry has allowed genetic information to become much more accessible.  As more health information reaches the hands of employers and insurers, individuals with genetic susceptibility to a debilitating disease could find that they, their children, and even their grandchildren are regarded as unemployable or uninsurable.

Currently, most states offer little or no protection against genetic discrimination.  This leaves most Americans unsure of how their private information will be protected.  Lacking any national framework on this issue, companies are left without direction on how to protect this extremely sensitive personal information.  National legislation needs to be implemented now, before genetic discrimination becomes more widespread as genetic testing comes into greater use.

Discrimination based on a person’s genetic information, just like that based on race or disability, should not be tolerated.  Genetic information, like other kinds of sensitive private information, needs robust protections with regulations specifying appropriate use and safeguards.  Congress needs to put in place a national framework now, before genetic discrimination becomes commonplace and more Americans are unfairly denied access to health care or face workplace discrimination.

For the above reasons, we urge you to support S. 358, the Genetic Information Nondiscrimination Act of 2007.

Sincerely,

Caroline Fredrickson
Director, Washington Legislative Office

Timothy Sparapani
Legislative Counsel

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