By Nancy Stordahl, a breast cancer advocate, blogger, and BCAction member, shares her story about why she’s opposed to Myriad Genetics’ patents on our genes — and has been following the story closely. On April 15, 2013 the U.S. Supreme Court will hear our challenge to Myriad Genetics’ patents on the BRCA 1 and 2 genes.
On April 15, 2013, the U.S. Supreme Court will hear oral arguments in a landmark case challenging Myriad Genetics’ patents on the “breast cancer genes.” I’ll be watching closely as things unfold.
For me, this case is personal.
Breast cancer risk lurks in my family’s DNA; hence genetic testing was called for at the time of my breast cancer diagnosis in 2010. My entire treatment course depended upon my test results.
Knowing the results of my BRCA gene analysis test before making decisions about my course of treatment for breast cancer was crucial, perhaps even life-saving for me.
I want every other person in a situation similar to mine, to have affordable access to this life-altering information about their genes, to be able to get a second opinion if they want it, and to get definitive test results so they’re not left hanging in limbo.
When the resources are available, as they could be if not for Myriad’s patent, anything less is just wrong.
Equally important, women who do not have cancer yet, but who are deemed to be at high risk (or would be so deemed if they had the opportunity to be tested) for developing breast or ovarian cancer based on results of the BRCA1 or BRCA2 test, have preventative options they may or may not choose to take in an attempt to avoid getting cancer.
Lives are at stake here.
Here are just a few reasons why Myriad’s monopoly on the “breast cancer genes” is a bad idea:
- Myriad retains exclusive rights to all testing and research on BRCA1 and 2 genes. This means sharing of data and analysis is blocked, undermining further collaborative scientific research efforts.
- Myriad can keep testing costs high indefinitely. (And they have)
- Second opinions are impossible.
- The patents mean continued limited access/information for underserved populations.
- This monopoly creates a barrier standing in the way of further breast and ovarian cancer research.
- The idea that a human gene can be patented is flawed, sets a dangerous precedent and is just plain wrong.
Of course, Myriad strongly disagrees and continues to fight hard to hold on to its BRCA1 and BRCA2 gene patents. For them, far too much money is on the table to give up their patents.
Back in 2009 a lawsuit was initiated by the American Civil Liberties Union and the Public Patent Foundation on the behalf of 20 plaintiffs challenging Myriad’s right to patent the BRCA1 and BRCA2 genes. Breast Cancer Action is a plaintiff in this lawsuit, the only national breast cancer organization listed as such. What I want to know is: where are the others?
In a nutshell, the suit claims the patents inhibit scientific research as well as patients’ rights to receive potentially life-saving genetic testing.
It’s true that roughly only 10% of breast cancer cases are attributed to the BRCA mutations. I realize that people like me are in a BRCA-positive cancer risk minority club.
However, science is only at the tip of the iceberg here. Genetic testing is still in its infancy. More and more genes are going to be linked to diseases, conditions and who knows how many ailments.
In the future, more and more medical decisions and personalized courses of treatment will be based on genetic test results.
We are entering the age of more personalized medicine, are we not? Yet as Christopher E. Mason, of Weill Cornell Medical College, who recently co-authored a study showing that nearly the entire human genome is covered by patents, said: “Just as we enter the era of personalized medicine, we are ironically living in the most restrictive age of genomics. You have to ask, how is it possible that my doctor cannot look at my DNA without being concerned about patent infringement?”
That’s why this case matters to us all.
It’s really not all that complicated. Human genes never should have been and never should be patented.
It’s time for the Supreme Court to set things right.
This landmark case directly impacts my family now.
Someday it might affect yours, too.