The Genome Defense by Jorge Contreras provides a road map for how to leverage creativity, ingenuity and hard work to advance civil rights. This nonfiction story covers the origins of the American Civil Liberties Union’s (ACLU) unprecedented patent law case.
Historically, patent attorneys and civil rights attorneys operated in non-intersecting legal fields, but when the human genome was mapped and individual genes were discovered, companies and universities began to patent specific sequences of human genes.
However, patents only protect the owners of discoveries and inventions. No one can be issued a patent for something that occurs in nature. Genes themselves occur in nature: each of us has them in our bodies. And as the human genome was mapped, it was not just healthy genes that were mapped, but also variants that could indicate disease or potential disease. Among the most widely publicized were the BRCA genes, which could predict an increased likelihood of future ovarian and breast cancer. The BRCA genes, made famous by Angelina Jolie, were originally discovered by a collection of University researchers and scientists. However, patents for these genes were now owned by Myriad genetics. Myriad was not alone in owning patents on genes: this had become an accepted practice at the U.S. Patent Office. They used this patent to regulate the industry for BRCA testing, and to shut downother labs that used the gene sequence whether for research or to provide testing. If a woman wanted to know if she had a variation in her genes that could predispose her for breast or ovarian cancer, she would effectively need to get a test through Myriad. This book catalogues the years-long fight to invalidate the patenting of genes, using the BRCA genes as the flagship case to challenge.
With a series of heart-breaking turns, disappointments, and witnessing to unneeded death and cancer, Contreras makes patent law and the science of genomics accessible to a lay reader. And because the journey takes place across more than ten years, aspiring lawyers and health researchers have a rare opportunity to observe key players changing professional positions, moving from universities to the private sector to the government. Implicit in this story of a victory for open access to knowledge and science is a lesson: who you are and what you believe in matters deeply as you move through roles.
While ultimately the ACLU won its case before the Supreme Court, and succeeded in invalidating all patents of genes as they occur in the human body, this book also provides a lesson in perseverance. The United States patent office itself was in favor of continuing gene patents. Many patent attorneys and law firms were unwilling to take up the fight: they had clients who had patented genes. In the course of litigation, Judge Sweet quoted Goethe, describing the setbacks “Daring ideas are like chessmen moved forward; they may be beaten, but they may start winning a game.” (p. 250). And in this, he was right: what the ACLU had on its side was not just the law, but the commonsense notion that we shouldn’t be allowing women to die of foreseeable cancer when we had a test available to detect it. Social movements of survivors, breast cancer organizations, and even a rogue patent attorney or two is what transformed this unjust arrangement. Even more importantly, a coalition from across the civil rights and intellectual property legal aisles coalesced around a common cause.
This book is a manual for how to create social change, how to persevere in the face of difficulties and challenges, and emblematic of the best of movement lawyering. The cause and its champions consistently drew from the needs, goals and aspirations of the people harmed by the state of genetic patent law. At the same time, The Genome Defense provides a painstaking accounting of how groups in power, armed with the resources to maintain their strategic advantage can delay progress for just causes. The careful descriptions, the tight prose, and the clever one-liners that bookend most chapters provide a delightful way to see how government, corporations and universities work to protect their ongoing interests. But in true American fashion, David always beats Goliath; it’s only a matter of time.
If you are interested in learning more about Contreras’ work, please check out his 2020 article from the Michigan Technology Law Review.
Sandra Sulzer is an Associate Editor on the Michigan Technology Law Review.