The Genome Defense: Inside the Epic Legal Battle to Determine Who Owns Your DNA

by Jorge L. Contreras

Overview

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.
 

Product Details

ISBN-13:	9781643753249
Publisher:	Algonquin Books of Chapel Hill
Publication date:	10/18/2022
Pages:	432
Sales rank:	660,580
Product dimensions:	5.40(w) x 8.20(h) x 1.00(d)

About the Author

Jorge L. Contreras received his law degree from Harvard and teaches intellectual property, science policy and the law and ethics of genetics at the University of Utah, and has served on high‑level governmental advisory committees. His articles have appeared in Science, Nature, Harvard Journal of Law and Technology, among others. He has been featured on NPR, PRI and BBC radio, and his opinions are cited in the New York Times, the Wall Street Journal, the Economist, andthe Washington Post. 
 

Table of Contents

Preface xi

Part I Building the Case

Chapter 1 Who Can We Sue? 3

Chapter 2 The World in the Helix 14

Chapter 3 The Gene Queen 19

Chapter 4 Mr. Lincoln's Boat 25

Chapter 5 The ACLU Way 32

Chapter 6 Product of Nature 43

Chapter 7 On the Hill 55

Chapter 8 Speaking of Patents 63

Chapter 9 The Power of Pink 69

Chapter 10 We've Got You Covered 86

Chapter 11 BART 97

Chapter 12 Patents and Plaintiffs 108

Chapter 13 Pulling the Trigger 133

Part II Litigation

Chapter 14 The Big Guns 145

Chapter 15 SDNY 159

Chapter 16 Chicken and Egg 165

Chapter 17 We're from the Government 187

Chapter 18 Splitting the Baby 202

Chapter 19 The Patent Court 214

Chapter 20 Magic Microscope 229

Chapter 21 Last Man Standing 240

Part III Highest Court in the Land

Chapter 22 Déjà Vu All Over Again 252

Chapter 23 Air Force 1 265

Chapter 24 With Friends like These 276

Chapter 25 Oyez, Oyez, Oyez! 286

Chapter 26 9-0 312

Chapter 27 Aftermath 320

Appendix: The (Legal) Meaning of Myriad 330

Principal Characters 361

A Note about Sources 365

Bibliography 367

Notes 372

Acknowledgments 405

Photo Credits 407

Index 408

Questions for Discussion 416

Editorial Reviews

★ 08/23/2021

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. (Oct.)

Publishers Weekly

A compelling and thoroughly researched narrative history of a seminal lawsuit.”
—The Wall Street Journal

“Ably and affectingly detailed . . . This story stands as a guide to the forces that shape an increasingly important industry—and to the vexed influence of patents.”
—Nature

“The Genome Defense provides an incomparable perspective on a landmark Supreme Court case, and it is a testament to the importance of intellectual property law to humanity’s prosperity.”
—Jessica Silbey, author of The Eureka Myth: Creators, Innovators, and Everyday Intellectual Property

"Jorge L. Contreras, a law professor at the University of Utah, interviewed nearly 100 lawyers, patients, scientists and policymakers in this behind-the-scenes history of Molecular Pathology vs. Myriad Genetics, a long-shot lawsuit that culminated in a landmark 2013 Supreme Court decision that opened the human genome to the benefit of researchers, cancer patients and everyday Americans."
—The New York Times Book Review ("11 New Works of Nonfiction to Read This Season")

"In this engaging legal history, Contreras chronicles how an unlikely lawsuit against private companies that have patented human genes led to a Supreme Court decision to open the human genome to researchers and everyday Americans."
—The New York Times Book Review (Paperback Row)

“Remarkable. Contreras manages to make a book about the lawsuit that ended gene patenting in America read like a thriller. This book will not only inform you and stir your moral outrage, it will keep you on the edge of your seat.”
—Ayelet Waldman, author of A Really Good Day  

“Fascinating . . . Contreras goes behind the scenes with many of the key participants, offering an inside look at the legal strategy and the potential consequences on either side of the final decision.”
—Salt Lake City Weekly

 “Masterfully written.”
—Neo.Life

“An unflinching critique of the biotech industry's business practices . . . Contreras never presumes that his readers can't keep up, until suddenly a lay reader can likely understand the fundamentals of patent eligibility. That mix makes the book an incredibly accessible and engaging read, which . . . keeps readers from putting it down.”
—Law360
 
“Eye-opening . . . 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 . . . a thorough page-turner.”
—Publishers Weekly, starred review

“A superb lesson on patents in general and the grotesque American patent system in particular . . . 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 . . . Fascinating.”
—Kirkus Reviews, starred review

“A gripping and important tale of how corporations were patenting our own genes and selling them back to us. Contreras give us front-row-seat access, deft character sketches and crystal-clear explanations of law and science.”
—Jordan Fisher Smith, author of Engineering Eden

“A remarkable, fast-paced read. Contreras tells the behind-the-scenes story of how the Supreme Court stopped the patenting of the human genome. He does it in such an engaging style that it’s almost like reading a legal thriller.”
—Professor Mark A. Lemley, Director, Stanford Program in Law, Science, and Technology

“Both a page-turner full of colorful characters and a profound commentary about how corporate giants use the law to monopolize knowledge—and what we can do about it.”
—Orly Lobel, author of You Don't Own Me: The Court Battles that Exposed Barbie's Dark Side
 

“A compelling and thoroughly researched narrative history of a seminal lawsuit.”
—The Wall Street Journal

“Ably and affectingly detailed . . . This story stands as a guide to the forces that shape an increasingly important industry—and to the vexed influence of patents.”
—Nature

“The Genome Defense provides an incomparable perspective on a landmark Supreme Court case, and it is a testament to the importance of intellectual property law to humanity’s prosperity.”
—Jessica Silbey, author of The Eureka Myth: Creators, Innovators, and Everyday Intellectual Property

"Jorge L. Contreras, a law professor at the University of Utah, interviewed nearly 100 lawyers, patients, scientists and policymakers in this behind-the-scenes history of Molecular Pathology vs. Myriad Genetics, a long-shot lawsuit that culminated in a landmark 2013 Supreme Court decision that opened the human genome to the benefit of researchers, cancer patients and everyday Americans."
—The New York Times Book Review ("11 New Works of Nonfiction to Read This Season")

“Remarkable. Contreras manages to make a book about the lawsuit that ended gene patenting in America read like a thriller. This book will not only inform you and stir your moral outrage, it will keep you on the edge of your seat.”
—Ayelet Waldman, author of A Really Good Day  

“Fascinating . . . Contreras goes behind the scenes with many of the key participants, offering an inside look at the legal strategy and the potential consequences on either side of the final decision.”
—Salt Lake City Weekly

 “Masterfully written.”
—Neo.Life

“An unflinching critique of the biotech industry's business practices . . . Contreras never presumes that his readers can't keep up, until suddenly a lay reader can likely understand the fundamentals of patent eligibility. That mix makes the book an incredibly accessible and engaging read, which . . . keeps readers from putting it down.”
—Law360
 
“Eye-opening . . . 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 . . . a thorough page-turner.”
—Publishers Weekly, starred review

“A superb lesson on patents in general and the grotesque American patent system in particular . . . 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 . . . Fascinating.”
—Kirkus Reviews, starred review

“A gripping and important tale of how corporations were patenting our own genes and selling them back to us. Contreras give us front-row-seat access, deft character sketches and crystal-clear explanations of law and science.”
—Jordan Fisher Smith, author of Engineering Eden

“A remarkable, fast-paced read. Contreras tells the behind-the-scenes story of how the Supreme Court stopped the patenting of the human genome. He does it in such an engaging style that it’s almost like reading a legal thriller.”
—Professor Mark A. Lemley, Director, Stanford Program in Law, Science, and Technology

“Both a page-turner full of colorful characters and a profound commentary about how corporate giants use the law to monopolize knowledge—and what we can do about it.”
—Orly Lobel, author of You Don't Own Me: The Court Battles that Exposed Barbie's Dark Side
 

From the Publisher

★ 12/10/2021

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

Library Journal

★ 2021-08-25
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.

Kirkus Reviews