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Who Owns Your Genes?

Selene Kaye,
Director, Liberty Division,
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May 12, 2009

Today the ACLU and the Public Patent Foundation filed a lawsuit challenging the U.S. government’s practice of granting patents on human genes – specifically, the BRCA1 and BRCA2 genes, which are associated with breast and ovarian cancer. That’s right: the U.S. Patent and Trademark Office issues patents on human genes – the segments of DNA that we all have in our cells – giving private corporations, individuals, and universities the exclusive rights to those genetic sequences, their usage, and their chemical composition. Although many people are unaware of this practice, it has been going on for roughly 20 years, and at this point 20 percent of the human genome has been patented.

This raises serious civil liberties concerns because the government is essentially giving patent holders a monopoly over the patented genes and all of the information contained within them. Patent holders have the right to prevent anyone else from testing, studying, or even looking at the genes. That means that if you or your doctor were to remove your genes from your cells in order to examine them, you would be committing patent infringement and could be sued by the patent holder.

We believe this is a gross violation of First Amendment rights: individuals’ rights to know about their own genetic makeup, doctors’ rights to provide their patients with crucial medical information, and scientists’ rights to study the human genome and develop new treatments and genetic tests. Anthony D. Romero, Executive Director of the ACLU, said in a statement:

Knowledge about our own bodies and the ability to make decisions about our health care are some of our most personal and fundamental rights. The government should not be granting private entities control over something as personal and basic to who we are as our genes. Moreover, granting patents that limit scientific research, learning and the free flow of information violates the First Amendment.

Our lawsuit challenges the patents on two genes in particular – the BRCA1 and BRCA2 genes – which are controlled by Myriad Genetics, a private biotechnology company based in Utah. Mutations along the BRCA genes are responsible for most cases of hereditary breast and ovarian cancers. Genetic tests can detect these mutations and tell women if they are at increased risk of cancer, which in turn informs their decisions about screening, prevention and treatment options.

Myriad is aggressive in enforcing its patents against other scientists and labs who wish to conduct clinical testing and research on the BRCA genes. This has meant that researchers cannot develop new genetic tests without permission, some women cannot access testing because of the high price Myriad charges (currently over $3,000), no one can get a second opinion, and women who receive ambiguous test results have no recourse. Women of color are disproportionately likely to receive ambiguous test results. Less research has been done on their genetics in part because Myriad has the sole power to determine what to do with the data it collects from people who are tested.

The patent system was created to foster innovation by rewarding inventors for their work. But genes are naturally-occurring parts of our bodies, not inventions, and the reality is that gene patents hinder scientific advancement.

Many individuals and organizations have spoken out against the practice of gene patenting over the years, but our lawsuit – which brings together breast cancer and women’s health groups, individual women, and scientific associations representing approximately 150,000 researchers, pathologists and laboratory professionals – is the first to challenge gene patents on First Amendment grounds. Because we are challenging the whole notion of gene patenting, this case could have far-reaching effects beyond the BRCA genes. Other patented genes include those associated with Alzheimer’s disease, muscular dystrophy, colon cancer, and asthma.

To read the press release, complaint, plaintiff statements, and to sign a statement of support, visit

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