C3 would like to thank President Bush for signing into law the Genetic Non-Discrimination Information Act (GINA) today. This monumental legislation will protect Americans from discrimination based on an individual’s genetic information in health insurance coverage and employment settings.
“This is a tremendous victory for every American not born with perfect genes – which means it’s a victory for every single one us,” said Representative Louise Slaughter (D-NY). “Since all of us are predisposed to at least a few genetic-based disorders, we are all potential victims of genetic discrimination.”
Earlier this month GINA passed both the House of Representatives and the Senate with overwhelming support. This is the first time ever this legislation passed both chambers in the same Congressional session.
“Now that GINA has been approved and signed into federal law by the President, American health care consumers and employees will no longer have to fear the adverse effects of being tested to determine their risk status for genetic diseases,” said Joann Boughman, Ph.D., executive vice president of the American Society of Human Genetics.
Specifically, the legislation protects against genetic discrimination by health insurers or employers by:
• Prohibiting group health plans and issuers offering coverage on the group or individual market from basing eligibility determinations or adjusting premiums or contributions on the basis of genetic information. They cannot request, require or purchase the results of genetic tests, or disclose genetic information.
• Prohibiting issuers of Medigap policies from adjusting pricing or conditioning eligibility on the basis of genetic information. They cannot request, require or purchase the results of genetic tests, or disclose genetic information.
• Prohibiting employers from firing, refusing to hire, or otherwise discriminating with respect to compensation, terms, conditions or privileges of employment. Employers may not request, require or purchase genetic information, and may not disclose genetic information. Similar provisions apply to employment agencies and labor organizations.
May 21, 2008 at 10:35 pm, drpatrick said:
These regulations are a good idea, but there still seems to be some holes in the new laws. For instance, health information is not the only thing you can get from your DNA:
http://dnatestingguides.com/2008/05/what-is-dna-testing/
For example with the wholesale collection of DNA the government, or any company that so wished, could compile a DNA fingerprint database or trace your ancestry.
It’s not clear how the new regulations would apply to this. Perhaps the best way to stop companies/governments abusing genetic information, is to not only protect the information, but not let them have it in the first place.