ACLU lawsuit against gene patent holders

ACLU Challenges Patents on Breast Cancer Genes

On May 12, 2009, the ACLU and the Public Patent Foundation, a not-for-profit organization affiliated with Benjamin N. Cardozo School of Law (PUBPAT), filed a lawsuit charging that patents on two human genes associated with breast and ovarian cancer are unconstitutional and invalid. The lawsuit was filed on behalf of four scientific organizations representing more than 150,000 geneticists, pathologists, and laboratory professionals, as well as individual researchers, breast cancer and women’s health groups, genetic counselors and individual women. Individuals with certain mutations along these two genes, known as BRCA1 and BRCA2, are at a significantly higher risk for developing hereditary breast and ovarian cancers.

The U.S. Patent and Trademark Office (PTO) has granted thousands of patents on human genes – in fact, about 20 percent of our genes are patented. A gene patent holder has the right to prevent anyone from studying, testing or even looking at a gene. As a result, scientific research and genetic testing has been delayed, limited or even shut down due to concerns about gene patents.

As a result of the PTO granting patents on the BRCA genes to Myriad Genetics, Myriad’s lab is the only place in the country where diagnostic testing can be performed. Because only Myriad can test for the BRCA gene mutations, others are prevented from testing these genes or developing alternative tests. Myriad’s monopoly on the BRCA genes makes it impossible for women to access other tests or get a second opinion about their results, and allows Myriad to charge a high rate for their tests – over $3,000, which is too expensive for some women to afford.

The lawsuit, Association for Molecular Pathology, et al. v. United States Patent and Trademark Office, et al., was filed in the United States District Court for the Southern District of New York in Manhattan against the PTO, Myriad Genetics and the University of Utah Research Foundation, which hold the patents on the BRCA genes.

I had no idea this happens and I can not believe it is allowed. People can patent genes??? I can understand wanting to get the recognition when it comes to having discovered say, the gene that causes Parkinson’s or Alsheimer’s, but when this causes research and exploration to be limited, why would anyone want to do that. I find it to be incredibly irresponsible on the government’s part to allow this to happen.

I understand that America is the greatest country in the world, blah blah blah. I also understand that we have some of the best medical research in the world right here in the good ole USA. I know that if medicine was never turned into the business it is treated as, we would never be able to afford the research we can. At the same time, however, my family has a BRAC mutation. Every woman in my mother’s side of the family as far back as anyone can remember has died of “women trouble” and then Ovarian Cancer once we had the technology to identify it. My mother is the first woman to live to her age without being sick and this is because she had a hysterectomy as a result of our knowledge of this genetic mutation.

It takes so long to be tested for this gene, they need family records of other people with it, and it is so expensive. I had no idea this was because there was a patent on the gene. Why would anyone ever want to do something that affects people’s lives and could be essentially allowing thousands to die? I understand that research is a business and labs need funding and scientists, but what if lab A has the patent and there are scientists at lab B and lab C who went to school with lab A’s scientists, but graduated with better understanding and grades? I want lab B and C’s scientists researching cures for my potential cancer. Problem is, they can’t. I find something wrong with this. Morally, shouldn’t we be doing everything we possibly can to find cures to things? Doesn’t competition bring out the best in people? Wouldn’t competition challenge people to work harder and think better? We don’t allow monopolies in our country (technically), so why this?

Reading this article disgusted me and really, it made me want to cry. To learn something that so personally affects you and your well being is controlled by politics when the issue is health and life is disheartening. I suppose then you could start to argue about stem cell research and abortion, but I’m so not looking to get into those topics.


3 responses to “ACLU lawsuit against gene patent holders

  1. Stacie Gasser

    I’m a member of the Association of Molecular Pathology – one of the professional associations supporting the lawsuit. The link to their position statement is below.

    Here’s one excerpt which pretty much sums up my feelings on the situation:

    While attaching intellectual property rights to true acts of invention such as new therapeutics,
    diagnostics, or technology platforms is essential to encourage investment and reward
    innovation, a single gene or a sequence of the genome is a product of nature and should not
    be patentable.’

  2. I totally agree with and appreciate that statement.

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