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Rep. Louise Slaughter Headshot

Genetic Discrimination: Not Just Science Fiction

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You might have caught the article in the Sunday New York Times or today's segments on CNN highlighting a serious form of discrimination, the improper use of genetic information by a person's employer or insurer.

The article in the Times and the pieces of cable news each referenced legislation that I authored, H.R. 493, the Genetic Information Nondiscrimination Act (GINA). GINA prohibits insurers and employers from discriminating based solely on a person's genetic information. I first introduced a bill to protect a person's genetic information 13 years ago.

GINA would prohibit health insurers from denying coverage or charging higher premiums to a healthy individual because of a genetic predisposition to develop a disease in the future. It also bars employers from using genetic information for hiring, firing, job placement, or promotion decisions.

This is incredibly important because no one is born with perfect genes. Therefore, genetic discrimination is something that affects every single person on the planet.

Only with comprehensive federal legislation will we be able to deter further discrimination, encourage people to participate in genetic testing and research, and reduce long-term health costs. GINA does more than stamp out a relatively new form of discrimination. It would ensure that our country continues to lead in a field of scientific research that holds as much promise as any other in history.

Since I introduced the first version of this legislation over a decade ago, scientific research has advanced very quickly, making the need for protection against discrimination even more pressing. We simply cannot afford to wait any longer.

I would like to commend the Times and CNN for recognizing the seriousness of the issue and necessity for a fix.

However, they both missed a key reason of why this legislation has not been enacted into law, even though the legislation has received significant bipartisan support in Congress. GINA passed the House last April by an overwhelming margin of 420-3 and unanimously passed the U.S. Senate by votes of 95-0 and 98-0 respectively during the 108th and 109th Congresses. GINA even received three White House statements of support.

However, Oklahoma Senator Tom Coburn (R) has single-handedly been able to put a hold on the bill, not allowing a vote in the Senate in the 110th Congress.

Even though he voted for the legislation in 2005, Senator Coburn is holding the bill hostage, halting Senate consideration and preventing GINA from becoming law.

The threat of genetic discrimination is too real for these kinds of political games. Much like those reported in the Times article, we heard stories from far too many victims of both employer and health insurer discrimination while GINA was being considered in the House. This does not even include the testimony of genetic discrimination victims taken by the U.S. Department of Health and Human Services' Secretary's Advisory Committee on Genetics, Health, and Society.

This problem is real and people's health is on the line.

We need to stand up for the future health of both our citizens and one of medicine's most promising fields. The Genetic Information Nondiscrimination Act allows us to realize the tremendous potential of genetic research without jeopardizing one of the most fundamental privacies that can be imagined.