In the fall of 2009, I sat in an apartment in Center City Philadelphia with a dozen or so ACLU donors and staff members, and a handful of area Intellectual Property attorneys as ACLU attorney Chris Hansen outlined the organization’s strategy in a new lawsuit challenging the patenting of human genetic material. Earlier that same year, I was with a group of ACLU staff gathered in New York as we learned about a groundbreaking new effort by the organization. For decades, medical treatment and research had been limited by laws granting patent rights to the companies and corporations who isolated and identified human genetic sequences. Experts had long opposed such patent protections, but the ACLU thought they had an answer. We had a coalition of researchers, geneticists, cancer survivors, and health advocates, and we had a strategy to challenge the patents on two genes linked with breast cancer.
The ACLU’s argument, first dreamed up by Hansen and his team, was radical. The IP lawyers gathered in that Philadelphia apartment treated Many had argued that naturally occurring products like genes should not be patented. To grant a patent to the scientist responsible for its identification is like granting a patent on coal to the first man to dig a chunk from a mountain. Patents are meant to protect the invention of a product or process, not to grant proprietary ownership of a natural resource. Many had argued that the first gene patent was an error, made by a patent office who didn’t understand the new science they faced. What no one had ever argued was that the Constitution protects an individual’s right to own the genes in his or her body–that ownership of one’s body was a civil liberty.
Even for the lawyers in the room, it was hard to understand the argument. It was crazy. More than that, it was destructive. In the decades since that first erroneous gene patent, an entire industry had grown up around isolating and patenting genes–corporations had engaged in a race to identify, a race to patent, so that IP law would grant them the exclusive right to experiment, test, and license the genes they found.
The ACLU’s case challenged Myriad Genetics, who held the patent on BRCA1 and BRCA2, two genes closely linked with breast cancer–so closely linked that their presence is often treated by preventative mastectomy. Thanks to their patent, Myriad owned the only test available for these two genes. Any woman seeking to learn if she carried these genes had no choice but to take Myriad’s test, whatever the fee. Other companies were prohibited not only from creating their own tests, but from performing any research involving BRCA1 or BRCA2 without explicit permission from Myriad. The result was to put one corporation in charge of how rapidly research involving these two genes did or did not advance–and this is just one example of the consequences of gene patenting. With so much of the human genome now sequenced, most if not all genes were in the control of their respective patent holders.
That is, until today. Today, the Supreme Court validated the radical argument Chris Hansen and the ACLU presented against gene patenting. To quote the court’s majority opinion, written by Justice Thomas, “A naturally occurring DNA segment is a product of nature and not patent eligible merely because it has been isolated, but cDNA is patent eligible because it is not naturally occurring.” To paraphrase: corporations may still patent new manmade genes they create, and any associate tests or methods, but the genes themselves are not patentable. They are available to any researcher who wants to conduct research or testing.
While I’m excited and proud for my former colleagues, I’m even more excited by what this means for medical science. Certainly this is a victory first and foremost for women, especially for those whose lives are impacted by breast cancer–whether they themselves are afflicted, or they’ve lost family members, or they fret for their future children. To learn that some private corporation owns the truth about your own genes is sickening. This is an even bigger win than just that, however: This is an enormous win for science in general.
Since geneticists first began mapping the human genome, the power of such knowledge has been limited by legal restrictions on research and study. Critics will say that gene patents allow companies to recoup their investment in research, and that this decision will hurt research. Don’t believe them. Putting ownership of genes in the hands of individual corporations only incentivizes the limitation of research to keep their products viable–making them available to everyone, whether corporations or universities or individuals–means research is limited only by the ambitions of the scientific world. It means the advance of science is no longer bound by the profit motive. It means, ultimately, the free exchange of information–exactly the thing supporters like me rely on the ACLU, above all other organizations, to protect.
First PRISM, now this. If the last two weeks haven’t convinced you to donate to the ACLU….well, I guess you must be watching Fox News.