Our Genes Belong to Us. For Now.

By Barbara A. Brenner, Executive Director, Breast Cancer Action

How can anyone own our genes? Up until now, no court has been asked that question. But last week, in a ground breaking decision, a federal judge in New York declared that Myriad Genetics’ patents on the breast cancer genes are invalid because they cannot patent a part of nature.

The background is that some time ago, Myriad obtained patents on two human genes implicated in breast cancer: BRCA1 and BRCA2. With the patents, Myriad controlled both the tests given to women to see if they carry mutations on these genes (which may predispose them to breast and ovarian cancer), as well as all the research related to the genes.

It may seem obvious to us that our genes are our own, however some members of the research community are up in arms about the decision, because they say not being able to patent genes will inhibit their ability to create new treatments. Don’t be fooled. These patents are more about making money than they are about making medicines for people who are sick.

Breast Cancer Action, an education and advocacy organization that carries the voices of people affected by breast cancer, and a proud grant partner of the Women’s Foundation of California, was a plaintiff in the lawsuit brought by the American Civil Liberties Union against Myriad over the patents. Because we don’t accept funding from Myriad or other companies that profit from breast cancer, we could stand up for  the interests of patients who either couldn’t afford the very expensive test that identifies mutations on the BRCA1 or BRCA2 genes, or who couldn’t learn what their “ambiguous” test results meant because the research wasn’t being done to find out. An ambiguous test results means that a mutation was found on one of the genes, but it’s unclear to scientists what the relationship is between that mutation and cancer risk.

Ambiguous gene test results are not uncommon, and they are most often found in women of non-European descent, including many women of color. So, once again, the worst impact of health policy – in this case, the policy to allow genes to be patented – fell on the people who were most likely to have the worst breast cancer outcomes.

Thanks to the ACLU, the Public Patent Foundation and a federal judge, the patents on the breast cancer genes are now invalid. That means that, once the decision becomes final, new tests will be on the market, and all researchers will be able to pursue a greater understanding of what mutations on the genes mean.

Myriad will appeal. The case will probably eventually end up in the US Supreme Court. Myriad might get a stay of the trial court ruling pending that appeal. If they do, we’ll have to wait for our genes to be returned once again to their rightful owners – us.

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