On Wednesday, the media were all over the amazing story of the breast cancer patients, pathologists and genetic researchers who are suing the Patent Office and Myriad Genetics over the breast cancer gene.

The lawsuit was organized by the American Civil Liberties Union, and filed in federal court in New York.

Ten years ago the Patent Office let Myriad Genetics patent not only the test for the BRCA 1 and BRCA 2 gene mutations but the actual genes themselves. As a result, they are the only laboratory in this country that can perform the test. The lack of competition means that they can charge whatever they want—right now, more than $3,000—and that there is no way for a patient to get a second opinion from another lab.

Researchers in the U.S. also have been limited by what they can do with the genes. That’s why much of the new research on BRCA1 and BRCA2 genetic mutations has come from Europe, where there is no monopoly.

As someone who has started companies and invented devices, I realize the benefits of being able to patent your ideas. But this is more than patenting an idea; it is patenting the gene itself. In fact, it wasn’t until this story was reported that I learned that 20% of the human genome has been patented in this country. That is outrageous! There has to be a balance between benefitting a company for its development and safe guarding what should belong in the public trust.

I think it is terrific that this suit has been filed. Genes should not be owned! On Wednesday, my friend Dr. Nancy Snyderman said on the Today Show, “This will probably go all the way to the Supreme Court.” I think she’s right! Stay tuned!

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3 Responses to Who Owns Your Genes?

  1. Christine says:

    Wow! I had no idea about this. I had to be tested for both of these, as well as Li Fraumeni. It was $6,000.00. I appreciate the posting.

  2. Danielle D says:

    My mother was diagnosed with metastatic breast cancer when she was 38 and my maternal grandmother also had breast cancer although she was in her 80s at the time of diagnosis, and I have tried several times to find a Gene Specialist to test me for BRCA1 and BRCA2 mutations and there is no one who will test me. I am 24 yrs old and many use this as their excuse and others have told me that I do not have enough 1st degree relatives to qualify for the test because I am not high risk enough. This sounds to me like the insurance companies do not want to pay for testing Are you serious? BOTH MY MOM & GRANDMOTHER HAD BREAST CANCER AND I DON’T QUALIFY FOR TESTING!

  3. It’s great webpage, I was looking for something like this

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