The Breast Cancer Gene and Control of Women’s Bodies

BRCA1When it comes to women’s health, corporate interests and profits have been driving the agenda for far too long. There’s no better example than breast cancer, where companies make billions selling pink ribbon products in the name of the disease, and yet we have too little to show for this money.

The commodification of breast cancer goes all the way to our genes. Most people are shocked and puzzled to learn that one company, Myriad Genetics, holds a patent on the human BRCA1 and BRCA2 genes—often known as “the breast cancer genes”.

How does a corporation hold a patent on a human gene that exists in every single person? How can a company claim to own a naturally occurring part of your and my genetic code?

I believe they can’t. And next week, the U.S. Supreme Court will hear oral arguments in a landmark lawsuit challenging Myriad Genetics’ patent on the BRCA genes, taking up the fundamental question: Can human genes be patented?

Myriad Genetics’ claim on our very DNA creates a profitable corporate monopoly for them, generating approximately half a billion dollars a year in revenue. In the last fiscal quarter alone, Myriad made $126 million off genetic testing for breast cancer—a full 85 percent of their total revenue. But while Myriad is making billions, human gene patents stifle desperately needed research and innovation in breast cancer and create real harm for women at risk of and living with breast cancer. We cannot afford to let corporate profits come before patients. Not when nearly a quarter of a million women will be diagnosed with breast cancer this year. Not when around 40,000 women will die in the coming year.

Through its patent, Myriad controls all variations of the BRCA genes and all possible uses of those genes. No researcher or doctor can provide testing, conduct research or develop new treatments using the BRCA genes without permission from Myriad. And Myriad is extremely protective of its profitable patent, routinely blocking other researchers and clinicians from work which could benefit women living with and at risk of breast cancer.

Myriad’s strict patent enforcement means its test is the only available one to determine whether someone has a genetic variant that increases their risk of breast and ovarian cancer. Other researchers say they could provide a more complete test for around one-fifth of the cost. Currently, Myriad sets the price at more than $3,000, an often prohibitively high cost—all for an outdated test! Too many women cannot afford the test or their insurance will not cover it.

Myriad’s monopoly means there is little to no incentive for the company to identify the significance of rare mutations of the BRCA genes—and other researchers are blocked from studying these rare mutations. Women of color, including African Americans, Latinas and Asian Americans, receive ambiguous test results in disproportionate numbers. Women are told they have a mutation on one or both of their BRCA genes, but Myriad cannot tell them if this mutation is linked to an increased risk of cancer or not—putting these women in an impossible position when considering increased cancer surveillance or even the removal of healthy organs to reduce their risk of cancer. Meanwhile, no one can try to get better answers for them.

Furthermore, Myriad’s patent makes it impossible for women to get a second opinion. Thanks to Myriad’s monopoly, women have no way to verify their genetic test results or get a second opinion about them. This is especially infuriating for women making a decision about whether to remove their healthy breasts and ovaries in an effort to reduce their risk of cancer.

At a time when we desperately need new insights into cancer prevention, diagnosis and treatment, the human BRCA patents stops vital scientific research and medical care connected to breast and ovarian cancer. One company serves as a gatekeeper for all research into these genes and therefore sets the research agenda—which is driven by corporate earnings from testing as well as future earnings based on all the bio-data they collect (and hoard) from women’s bodies.

The upcoming case against Myriad, which has been winding through the courts since 2009, is tremendously important for women at risk of and living with breast cancer. It’s also important for all of us who think it’s time to rein in corporations profiting from a monopoly on our health.

Women’s health activists from across the country will be rallying with Breast Cancer Action to outlaw human gene patents on April 15 at the Supreme Court during oral arguments. I hope you will join us in standing strong for all our health. Human genes are for human beings, not corporations.

Karuna Jaggar is the executive director of Breast Cancer Action. Breast Cancer Action is hosting the rally with support from Center for Genetics and Society, Council for Responsible Genetics, Friends of the Earth, International Center for Technology Assessment, Knowledge Ecology International, National Women’s Health Network, Our Bodies Ourselves and Pro-Choice Alliance for Responsible Research.

 Photo of BRCA1 from Wikimedia Commons

Comments

  1. Deloris Iburg says:

    Am a 22 year survivor from this awful disease. I am blessed to be here. But patent our genes? How horrible to hear that anyone could patent my genes just to use it to make money. I took the test cause cancer runs in my family. But, if I had know this, I would not have taken it. I just don’t agree with this and should never be allowed.

  2. I truly appreciate Ms. Magazine’s coverage on this topic. Thank you for looking out for me, my sisters, my nieces, friends and all other women.

  3. Angela Stark says:

    I am sure they also have cures in cancer that they will never let us know……….It is nothing but a big money maker and these corporations should be destroyed……….

  4. I agree with this article that the patenting of genes is a terrible thing. However BRCA1 is a gene found in all humans and mutations in it lead to cancers in both men and women (http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA). So to file this under the “control of women’s bodies” is incorrect. And I can’t help but feel by labelling it as something that only effects woman damages the survival chances of men that have the disease.

  5. I agree with Liam that to label this as a strictly women problem is incorrect. I am a male prostate cancer surivor who has tested positive for BRCA2. I lost my sister (herself an MD) to breast cancer two years ago. She had a son and a daughter, both of whom have tested positve for the mutation. I have two daughters who have also tested positive. (They say the odds are 50-50 about inheriting the mutation but we are six for six!). Men with the mutation have approximately 80 times the chances of getting breast cancer than men without it (80 in a 1,000 compared to less than 1 in a 1,000). Prostate cancer is often more aggressive in men with the mutation. In addition, both genders face higher rates of pancreatic and skin cancers. To classify this as PURELY a “woman’s problem” is indeed misleading, though it is definetly that. It is a human problem, and for people of eastern european Jewish descent it is particularly troubesome. In this population the chances of having the mutation are 1 in 40, as opposed to 1 in 400 in the general population.

  6. Helene Puccini says:

    Health care is big business in the United States. Apparently, researchers can patent medical procedures, there, and charge a royalty each time a doctors uses the procedure, in for example, an operation. The profit-motive is de-humanizing the western world. How do we rebuild core values of ethics, compassion and humanity before it is too late?

  7. Bob Smith says:

    This picture is of a protein – the BRCA1- the protein directly created from the mutated gene…just as an FYI

  8. Dr. Jas says:

    This is so so ridiculous!
    How could they patent a gene?
    The question I ask myself is WHO GRANTED THEM A PATENT?

  9. Dr. Jas says:

    One can get his whole genome decoded for 1000 $ n they charge 3000 $ for brca1/2 testing?
    How bad can mnc’s go for making money!!!

  10. The Supreme Court’s landmark ruling that human genes are not patentable has set the stage for a new era of access to genetic information. Next, we must fill the information gap left by restricted data access and free our data! Free the Data! is a grass-roots campaign that will create an open, searchable database of genetic information allowing for better diagnosis and care, while protecting patient privacy. Share your BRCA test results or join the campaign to support data access at http://www.free-the-data.org

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