Friday, June 28, 2013

A Small Break Through

In early May a Face Book friend privately asked me about how I got tested for the BRCA gene mutation, if I got a second opinion and if Myriad was the only company testing for it. He was taking a class that required him to listen to a New York Public radio show in which the Company Myriad Genetics was part of the topic of conversation.  I was more than happy to reply which included, "no- this is the only company that does this test- so no I couldn't get a second opinion."  I personally wasn't concerned about the second opinion since my family had been tested and were getting positive results as well but it did make me question why this was the only company testing for the BRCA 1 and 2 gene mutation.  Myriad Genetics, a private biotechnology company based in Utah, controlled the patents on these genes. I found this strange because how can someone patent a human gene,  they didn't invent it, it's part of the human body. Apparently nearly 20% of human genes are patented. It gives "rights to the inventors for their inventions in order to reward and encourage human ingenuity", says the American Civil Liberties Union. What I found to be interesting is that many researchers around the world were involved in identifying the BRCA1 and BRCA2 genes; most of them did not seek patents or did not enforce any patents obtained by their universities because they wanted research and testing to continue openly without exclusive monopoly rights.
This topic of conversation went all the way to the U.S. Supreme Court. Just two weeks ago on June 13th the U.S. Supreme Court unanimously ruled that the Myriad Genetics patent in the BRCA1 and 2 genes were invalid.  The court stated "in this case...Myriad did not create anything.  To be sure, it found an important and useful gene, but separating that gene from its surrounding genetic material is not an act of invention."
What this means is that other companies can now test for the mutation. This will not only lower costs for the test but give people the option to have a second opinion and will possibly even give faster test results which in return saves lives.
Thank you to the people that made their voice heard and fought for this small human rights issue. It can be intimidating going up against "the big fish in the pond" especially if it is the unpopular vote in the room. Sometimes its about asking the right questions to spark the conversation to make a change.  I myself am trying to be more aware of when to question and speak up and when to just let the current take me down the river for a nice ride. 

1 comment:

  1. Thank you sharing your experience. I am brca1 positive. The ladies of force are amazing. I had a prophylactic mastectomy with reconstruction on October 3rd 2011 (My rebirthday!) Had my tubes and ovaries removed 3/2/12. How amazing it is not to have to worry every time you go for a mammogram. I hope you are feeling better each day. It will begin to feel more normal. A small price to pay for peace of mind I feel. I am Julie from College Park MD e-mail jsahadeo@hotmail.com You are great!

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