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The Genome Defense

Inside the Epic Legal Battle to Determine Who Owns Your DNA

Audiobook
1 of 1 copy available
1 of 1 copy available
In this riveting, behind-the-scenes courtroom drama, a brilliant legal team battles corporate greed and government overreach for our fundamental right to control our genes.
When attorney Chris Hansen learned that the U.S. government was issuing patents for human genes to biotech companies, his first thought was, How can a corporation own what makes us who we are? Then he discovered that women were being charged exorbitant fees to test for hereditary breast and ovarian cancers, tests they desperately needed—all because Myriad Genetics had patented the famous BRCA genes. So he sued them.
Jorge L. Contreras, one of the nation's foremost authorities on human genetics law, has devoted years to investigating the groundbreaking civil rights case known as AMP v. Myriad. In The Genome Defense Contreras gives us the view from inside as Hansen and his team of ACLU lawyers, along with a committed group of activists, scientists, and physicians, take their one-in-a-million case all the way to the U.S. Supreme Court. Contreras interviewed more than a hundred key players involved in all aspects of the case—from judges and policy makers to ethicists and genetic counselors, as well as cancer survivors and those whose lives would be impacted by the decision—expertly weaving together their stories into a fascinating narrative of this pivotal moment in history.

The Genome Defense
is a powerful and compelling story about how society must balance scientific discovery with corporate profits and the rights of all people.
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    • Publisher's Weekly

      Starred review from August 23, 2021
      In his eye-opening debut, law professor Contreras vividly tells the inside story of AMP v. Myriad, the 2013 Supreme Court case that took on the question “Are human genes patentable?” The case marked the ACLU’s first-ever patent case, an unlikely battle for the famed civil rights organization, and an unlikelier victory spurred by the long-standing but controversial patenting of human genes. Contreras describes how the ACLU mobilized a remarkable team and a powerful public campaign to bring the issue before the Supreme Court, challenging Myriad Genetics’ patent claims against its BRACAnalysis test (which was used to detect mutations linked to breast and ovarian cancer). Examining both sides of the legal battle, the author carefully explains the pertinent scientific as well as legal points: whether or not an isolated human gene is patentable, he explains, “hinges on whether it is more accurately described as a product of nature (not patentable) or a man-made substance (patentable).” Contreras brings the large cast of case-participants to life with vivid prose, and the exciting final spectacle before the Supreme Court is heart-pumping—of the packed courtroom, Contreras writes, “at precisely ten, a high-pitched chime sounded and the room quickly became quiet.” The result is a thorough page-turner.

    • Library Journal

      Starred review from December 10, 2021

      Contresas (law, Univ. of Utah) examines the epic courtroom battle to determine who owns human genetic material. He dives into the work of American Civil Liberties Union attorney Chris Hansen and his team, who sued Myriad Genetics after discovering that the company had received authorization to access genetic material from the U.S. government, which it used to develop and patent genetic testing for diseases. Over the years, one of the key drivers motivating the team of lawyers was the realization that breast and ovarian cancer patients were being charged for testing at exorbitant rates--because Myriad had patented the BRCA gene. The attorneys' work resulted in the landmark Supreme Court case Association for Molecular Pathology v. Myriad Genetics, Inc. In 2013, the court ruled that genetic material cannot be patented. Interviewing more than 100 people involved in the case, Contreras offers in-depth coverage of the legal battle and deftly explores the legal, medical, and corporate angles of the story. VERDICT Timely, relevant, and significant. Hand to readers of Rebecca Skloot's The Immortal Life of Henrietta Lacks.--Mattie Cook, Flat River Community Lib., MI

      Copyright 2021 Library Journal, LLC Used with permission.

    • Kirkus

      Starred review from September 15, 2021
      A superb lesson on patents in general and the grotesque American patent system in particular. Everyone agrees that patents are essential to allow inventors to profit from their inventions, but what is "patentable" remains a subject of fierce debate, notes Contreras, who teaches intellectual property, science policy, and the law and ethics of genetics at the University of Utah. New machines, methods, or materials qualify, but naturally occurring substances don't. As such, a botanist who discovers a previously unknown mushroom can't patent it because he only found it; he didn't invent it. Yet, somehow, genes qualify. During the 1970s and '80s, genetic engineering exploded when courts began approving patents for genetically modified organisms, and entrepreneurs pushed the envelope by asking for and receiving patents on sequences of human DNA. "By late 1996," writes Contreras, "the journal Nature reported that more than 350 new gene patent applications had been filed. Genes that could help to diagnose predispositions to more and more health conditions." There was no shortage of religious and scientific argument in opposition, but gene patents were legal, and changing a law requires legal arguments. Although it had never litigated a patent case, the ACLU decided in 2009 to take action and chose a target to maximize public interest. It focused on a woman who had a gene that put her at increased risk of developing breast or ovarian cancer, the test for which was in the hands of a company that owned the patent, monopolized the diagnostic test, and set a high price that insurance often did not cover. Having set the scene, Contreras assembles a large cast of lawyers, judges, activists, scientists, and patients and engagingly describes four years of tortuous legal action that saw victory in federal court, reversal on appeal, and a final triumph in the Supreme Court. A detailed account of patent law that, against all odds, turns out to be fascinating.

      COPYRIGHT(2021) Kirkus Reviews, ALL RIGHTS RESERVED.

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