The Honorable Michael B.
Ranking Member, Senate Health, Education, Labor and Pensions Committee
379A Russell Senate Office Building
Washington, DC 20510-2905
On behalf of the ACLU, a non-partisan organization with hundreds of thousands of activists and members, and 53 affiliates nation-wide, we commend your introduction of S. 358 the “Genetic Information Nondiscrimination Act of 2007.” Its companion bill, H.R. 493, introduced by Rep. Louise M. Slaughter, has over 150 co-sponsors on both sides of the aisle. This important legislation is a critical step towards securing civil liberties in the emerging field of medical technology.
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 healthcare and employment. Some cases of discrimination have already been documented for example, one woman was denied healthcare 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.
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 a widespread problem 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 regarding appropriate use and required safeguards. Congress needs to put in place a national framework now, before genetic discrimination becomes commonplace and more Americans are unfairly denied access to healthcare or face workplace discrimination.
We look foreword to working with you to pass S. 358, the Genetic Information Nondiscrimination Act of 2007.
Director, Washington Legislative Office