Rep. Johnson Votes to Safeguard Citizens Against Improper Use of Genetic Data

Press Release

Congressman Hank Johnson voted today in support of H.R. 493, the Genetic Information Nondiscrimination Act, which provides federal privacy protection to citizens. Now that sequencing of the human genetic code is possible, modern science can identify genetic markers for several chronic health conditions. When identified in patients, opportunities for treatment and possibly prevention can begin. By outlawing misuse of this information, Rep. Johnson hopes to encourage more Americans to take advantage of genetic testing to cope more effectively with the conditions and associated costs.

"Our laws must keep pace with technology and medical advancements. This bill is one more opportunity to do that. We have the means to identify and address some serious potential health risks but people are afraid to take the tests," said Rep. Johnson. "This bill makes it clear that concerns about employment and the ability to get or keep health insurance based on genetic data are non-issues. It will be illegal for an employer or a health care provider to use this information against patients."

Johnson said that health plans would be restricted from requiring genetic testing and can not adjust premiums or base enrollment decisions on this information. Under the bill, the fetus of a pregnant patient is also protected. In the workplace, neither employers, unions nor their training programs can discriminate based on genetic information.

Proponents of the bill have been working toward its enactment for 13 years and according to a survey, 92% of Americans said they did not want employers to have access to their genetic information. H.R. 493 is also supported by more than 500 organizations, including the Coalition for Genetic Fairness, American Association for the Advancement of Science, American Medical Association, American Nurses Association, American Public Health Association, American Cancer Society, American Heart Association, American Diabetes Association, and the Personalized Medicine Coalition.

The bill passed 414 to 1.

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