Gene patenting is in the news once again. This issue isn’t going away any time soon.
In my opinion, this debate boils down to one simple question.
Should one company, in this case, Myriad Genetics, be allowed to patent human genes when lives are at stake?
It seems as if there is a simple answer here and it’s no!
Of course many others do not agree with me. Not surprising, nothing is ever simple when there are millions of dollars at stake.
I don’t wish to rehash the entire history of this issue. If you’re interested in some background information, please take a look at my previous post on this topic: Monopolies & Gene Patents – Think You Own Your Genes? Think Again!
In a nutshell, 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 and therefore to dictate prices on tests for these mutations. Worth mentioning once again is this fact: Breast Cancer Action was and still is a plaintiff in this lawsuit, the only national breast cancer organization listed as such.
Where are the others?
The suit claims the patents inhibit scientific research as well as patients’ rights to receive potentially life-saving genetic testing.
As Daniel B. Ravicher, executive director of the Public Patent Foundation and co-counsel for the plaintiffs, says:
“Nobody ‘invents’ genes, so no one should be able to claim ownership of them. We are not talking about a new drug or a new tool to fight cancer. We are talking about a genetic marker that occurs naturally in the human body. That cannot, and should not, be patented.”
Again, I agree.
Genetic testing is crucial for those like me facing a cancer diagnosis. There is a strong family history for breast cancer in my family; hence genetic testing was called for at the time of my diagnosis. My oncologist almost insisted upon it. My entire treatment course depended upon my test results.
I want every woman and man with an obvious family history to have the same options I had before or after a cancer diagnosis.
Women who do not have cancer yet, but who are deemed to be at high risk 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. For the under-insured or uninsured, the cost of such testing is prohibitive. The initial test series in a family runs around $3,000.
Again, lives are at stake here.
The case has been batted around in the court system since 2009 and finally made its way to a federal appeals court in July 2011. The appeals court decision sided with Myriad. The ACLU appealed that decision to the Supreme Court.
That meant more “wait and see.”
This week the topic landed in the news arena once again and I’m feeling encouraged, but only slightly.
Why am I encouraged?
Because the Supreme Court “set aside” the July 2011 U.S. Court of Appeals decision I mentioned above. I’m not exactly certain what “set aside” means, but I think it means the case is being sent back for further consideration and hopefully a reversal in the decision.
This latest Supreme Court “setting aside” decision is thought to have something to do with another high court’s unanimous decision this week which determined a blood test developed by Prometheus Laboratories of California is ineligible for a patent because it was a “simple application of a law of nature.” This particular lawsuit was instigated by Mayo Clinic.
Things falling under the “laws of nature” category have typically not been eligible for patenting for obvious reasons, well, obvious to most anyway. This is a major component in the Myriad case as well.
Of course, Myriad strongly disagrees and will continue to fight hard to hold on to its BRCA1 and BRCA2 gene mutation patents. You can bet on that. Far too much money is on the table.
The thing I can’t figure out is this:
Why aren’t more people up in arms about this issue?
I understand that roughly only 10% of breast cancer cases are attributed to the BRCA mutations. I understand people like me are in a “BRCA breast cancer club minority.”
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. More and more medical decisions will be based on genetic test results.
Genetic testing possibilities and subsequent varying prevention and treatment options should be available to all, not just to those who can afford it.
Do we really want any company to have a monopoly on our genes?
Do we really want any company to have so much control over life and death issues?
I know I don’t.
What about you?
How do you feel about the issue of gene patenting?
Why do think more people are not “up in arms about this issue?
Would you have (or have you had) genetic testing?