Voices on Human Gene Patents: An Agonizing Decision Made More Difficult Because of Gene Patents

This is day two of our blog series on The Fight To Take Back Our Genes featuring voices on Human Genes. Today's guest blogger is a plaintiff in our case challenging the patent on two genes related to breast and ovarian cancers, BRCA1 and BRCA2.

My name is Runi Limary. I am 36 years old, Asian-American and live in Austin, Texas. I was only 28 when I was diagnosed with invasive breast cancer. My doctor recommended that I take the BRCA test. Those that test positive for the BRCA1 and BRCA2 gene mutation are at higher risk of having breast and ovarian cancer, and also have a higher risk of developing breast cancer in the other breast. Women are usually diagnosed at a younger age if they carry this genetic mutation. I agreed to have the test done because the test results would help me make the decision of whether or not I would need to have a single or a double mastectomy and whether or not to remove my ovaries.

My test results came back inconclusive. I tested positive for the BRCA1 with a "variant of uncertain significance." Basically it meant that the company could not determine whether it was a dangerous mutation or a benign, uncommon one. I was told that the variant in my genes has been seen in only two other Asian women. The sample test population was not large enough for me to feel as if I truly tested positive or negative for the BRCA1 genetic mutation. Regardless, I elected to be aggressive and have a bilateral mastectomy (the removal of both my breasts) to lower my chances of recurrence in the future.

I have completed all my treatment for breast cancer but now I have to make a difficult decision about whether or not to have an oophorectomy (removal of the ovaries.) I am in my 30's and do not have children. I want to be able to make an educated decision before I undergo a life changing surgery.

Gene patents give the patent holder control over whether other scientists can perform research to find out the meaning of different mutations along the patented genes. We need to make sure other researchers are free to test variants of uncertain significance and learn more about the genetic makeup of under-represented populations like the Asian population because we all have the right to know whether or not we truly have the BRCA mutation. The way it is now, I and other patients have to depend on the decisions made by a single company.

In 2009, 20 professional medical associations, geneticists, breast cancer and women's health groups, and patients filed a lawsuit charging that patents on BRCA1 and BRCA2 are invalid and unconstitutional. The ACLU and the Public Patent Foundation, which represents the plaintiffs, will argue this case before the Supreme Court in April 2013.

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I'm not clear on this.

So women send their samples to this Myriad company to find out if cancer is hereditary in their families, and so they can make more informed health decisions. Right?

The woman's doctor in the video hung her head as if the results the company provides have been consistently innacurate. Yes?

Does the company alter genes with an additive they produced in order to provide results?

My impression is that people send off samples of their genes, maybe get accurate results, and then if they want a second opinion, they can't have one because Myriad's secret formula will be revealed if another company gets a hold of the gene sample?

By the way, I don't know if it's just my old computer, but if I type something into this comment box, click somewhere else, and then click back inside the comment box, all the text disappears.

Katherine Horej...

The question of whether or not a corporation can patent gene sequences is a moral one, courts (even Supreme ones!) don't have a great track record on moral questions simply because morality is so subjective...and the Bench can be stacked one way or another according to political whim. Surely a more effective way for us to approach corporations such as Myriad is to neutralize any benefit they may experience from the granting of said patents. The women in your recorded pieces have been injured by Myriad's "invention" either directly or through negligence (Myriad knew of other Asian women with a similar genetic mutation and failed to modify testing practice or protocol to accommodate such a difference) at which point this becomes a personal injury suit rather than a moral crusade. I am not familiar with US convention but certainly in the UK and Australia, a negligence tort carries the potential for unlimited damages. Given Myriad's predilection for litigation, or at least the threat of it, this seems like an appropriate course of action for the injured women to take. Since such a suit is not reliant on the outcome of a Supreme Court decision (if they uphold the patent award Myriad is directly responsible for their invention, if they over turn the patent award Myriad is responsible for the prevention of effective testing in the case of these women) it surely offers the chance of a positive outcome for the victims.

Sheree Huntley,...

Very well-written letter, Runi. I came across it as I was searching for more information on this subject.

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