Wednesday, May 28, 2008

Who is GINA? And What Does She Have To Do With Migraine Disease?

GINA is not a "who" but a "what". GINA is the Genetic Information Nondiscrimination Act of 2008. GINA was signed into law by President George W. Bush on May 21, 2008.

On April 24, 2008, the Senate passed this bill 95 - 0. It was sent back to the House of Representatives on May 1, 2008 and passed 414 - 16 - 1. Congressman Ron Paul (R-TX) was the only person to vote against this bill.

GINA makes it illegal for insurance companies and employers to discriminate against you because of your genetic makeup. A press release issued by Coalition for Genetic Fairness explains that this legislation protects against this discrimination by:
  • Prohibiting group health insurance plans and issuers offering coverage on the group or individual market from basing eligibility determinations or adjusting premiums or contributions on the basis of an individual's genetic information. Insurance companies cannot request, require or purchase the results of genetic tests, and they are prohibited from disclosing personal 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 they are also prohibited from disclosing personal genetic information. Similar provisions apply to employment agencies and labor organizations.
Congresswomen Louise Slaughter (D-NY), who first authored and introduced genetic nondiscrimination legislation thirteen years ago, issued this press release explaining the historical precedents for GINA:
  • In the 1970s, many African-Americans were denied jobs, educational opportunities, and insurance based on their carrier status for sickle cell anemia, despite the fact that a carrier lacked the two copies of a mutation necessary to get sick.
  • In 1998, Lawrence Livermore Laboratories in Berkeley was found to have been performing tests for syphilis, pregnancy, and sickle cell on employees without their knowledge or consent for years.
  • In 2000, the Burlington Northern Santa Fe Railroad performed genetic tests on employees without their knowledge or consent.
So, what does all this have to do with Migraine Disease?
Migraine is a hereditary condition. It is a genetic neurologically-based disease. The MAGNUM article, Migraines: Myth Vs. Reality explains:
Migraine is a genetically-based disease. We first learned this in the mid-90's, as it was specifically stated in correspondence with M.A.G.N.U.M. by Dr. Stephen J. Peroutka, M.D., Ph.D., President & CEO of Spectra Biomedical, Inc., a group of research physicians dedicated to understanding the genetic basis of Migraine and other illnesses, the "data are unequivocal: Migraine is a genetically-based illness. Individuals with a single parent having Migraine have approximately a 50% chance of having Migraine. This susceptibility is neither psychological nor induced by environmental causes."
Although Griffith University's Genomics Research Centre (GRC) in Australia is not the only one doing genetic research for Migraine disease, it is the home of the world's largest collection of DNA samples from migraine patients. The GRC has discovered different genetic regions on chromosomes 1, 19 and X where Migraine genes are found. Through genetic research, they have identified a link between hormones and Migraine and a link between Migraine genes and stroke saying:
There's a mutation in this gene that makes people more likely to suffer stroke and also increases the risk of migraine. We believe this to be a link between migraine and stroke.

It is possible for genetic testing to play a huge role in finding a cure for Migraine and other diseases and conditions. GINA will allow those of us with a genetic disease or condition to participate in testing without the fear that our insurance companies and employers find out. Those who may be predisposed to a specific genetic condition now have the opportunity to be proactive by monitoring their health and possibly preventing a genetic disease or condition.

For more information on genetic discrimination, you can read the 25-page report in pdf format: Faces of Genetic Discrimination: How Genetic Discrimination Affects Real People. (I did say it was 25-pages and in pdf format, right?)


rain gem said...

You go Pink!
Very X-Files like. Might even submit it to "Conspiracy Archive".

Seriously though, I do worry sometimes about how in the near future the whole new "eugenics" might see a rise, based on the most resent DNA research.

Who's to say what is normal? For all we know we, migraine people, are the next step in human evolution... (yah, I have some ideas that are out off the left field :P )

deborah said...

very interesting. thank you.

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