The Genome Defense: Inside the Epic Legal Battle to Determine Who Owns Your DNA
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- Create Date：2022-11-15 16:21:35
- Update Date：2025-09-06
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- Author：Jorge L. Contreras
- ISBN：164375324X
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Summary
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。
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。
Reviews
CatReader
，
A very comprehensive， well-written look at the lawsuit （AMP v。 Myriad） that worked its way up to the US Supreme Court to strike down the decades-long practice of patenting human genes in the late 2000s/early 2010s。 I wish we could say the issue is now closed， but the threat of gene patents is still an issue in 2022！ I'm glad that at least in this case， the many judges who reviewed this case， despite most not being scientists themselves， were curious and determined enough to understand the issue A very comprehensive， well-written look at the lawsuit （AMP v。 Myriad） that worked its way up to the US Supreme Court to strike down the decades-long practice of patenting human genes in the late 2000s/early 2010s。 I wish we could say the issue is now closed， but the threat of gene patents is still an issue in 2022！ I'm glad that at least in this case， the many judges who reviewed this case， despite most not being scientists themselves， were curious and determined enough to understand the issue and rule correctly。 While the world of genomic medicine is familiar to me， I learned a lot about the inner workings of the US judicial system through this book。（I should disclose that I'm an AMP member and know many of the people mentioned in this book， so I am biased！） 。。。more
Daryia Dinkins
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In his acknowledgments， the author， Jorge Contreras， describes his book as "a story about real people engaged in a meaningful legal pursuit。" I'd go with that。 Although Contreras is both a lawyer and a professor， which my experience tells me stacks the odds against him being a good writer， he's overcome my prejudice big time。 The book is a case study of a legal case， "AMP v。 Myriad，" which went all the way to the top， to the Supremes （SCOTUS） in 2013 for a resolution of the question whether gene In his acknowledgments， the author， Jorge Contreras， describes his book as "a story about real people engaged in a meaningful legal pursuit。" I'd go with that。 Although Contreras is both a lawyer and a professor， which my experience tells me stacks the odds against him being a good writer， he's overcome my prejudice big time。 The book is a case study of a legal case， "AMP v。 Myriad，" which went all the way to the top， to the Supremes （SCOTUS） in 2013 for a resolution of the question whether genes may be patented。Contreras is eminently readable -- the book is a page turner。 The layperson might have a little difficulty with some of the genetics concepts， but that's not important。 We've got plenty of human interest， lessons about the practice of "big case" law， science， health and medicine， governmental bureaucracy， big business， economics 。 。 。 it's all there。All that having been said， I'd like to say the book is one that everyone should read， but， sadly， I know it's not going to be for everyone。 My wife said she wouldn't read it， so there's at least one not everyone。 。。。more
P D
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Super fascinating look at the Myriad genome patent case。 I learned a fair bit about how the ACLU operates as well。 My friend said one of the details about patent lawyers was off but I might’ve misrepresented it。 The one thing that does feel dated is describing the Supreme Court as venerable 😬
Palmer Hawkins
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I’m not a lawyer and have little exposure to life in the courtroom so I can’t comment much on that side of things。 But the author did a great job of helping the reader get to know the people in the book。 And that was the focus of f the case for the ACLU， they wanted everyone to realize there were real people behind all the controversy。 There were questions on patents， pricing， and processes， but ultimately it was about how people were impacted， sometimes in terrible ways。 It was also fun to get I’m not a lawyer and have little exposure to life in the courtroom so I can’t comment much on that side of things。 But the author did a great job of helping the reader get to know the people in the book。 And that was the focus of f the case for the ACLU， they wanted everyone to realize there were real people behind all the controversy。 There were questions on patents， pricing， and processes， but ultimately it was about how people were impacted， sometimes in terrible ways。 It was also fun to get a behind the scenes look at the legal process， which is complicated。 It was obvious how much work was put in by both sides。The author definitely had a side and didn’t hide that fact。 But there was effort to portray the motives and intentions of each person within the context of their situations。 Again， it made everyone look more human。I enjoyed the narrative， the science， the stories， and the look into the legal process behind a very controversial set of cases。 It was a fun read。 。。。more
Erica
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Clearly， I didn't read the summary of this book because I went in thinking it was going to be about those DNA testing kits and whether or not they should be allowed to sell your data， but that's not what this is at all！ This is a story about patent law and whether companies have the right to patent individual genes。 Court books don't always keep my attention， but this one was really good and certainly did。 Clearly， I didn't read the summary of this book because I went in thinking it was going to be about those DNA testing kits and whether or not they should be allowed to sell your data， but that's not what this is at all！ This is a story about patent law and whether companies have the right to patent individual genes。 Court books don't always keep my attention， but this one was really good and certainly did。 。。。more
Madeline
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really gives you an appreciation for how long it actually takes to develop and bring high impact litigation — between the talks of whether or not to bring suit and developing case strategy， and actually getting this before it’s first judge， it took years and years， and of course many more years still before it made it to the Supreme Court。 also， recounting each ‘player’ in the ACLU group， the Myriad group， the various executive office and government groups， it’s impressive again how many people really gives you an appreciation for how long it actually takes to develop and bring high impact litigation — between the talks of whether or not to bring suit and developing case strategy， and actually getting this before it’s first judge， it took years and years， and of course many more years still before it made it to the Supreme Court。 also， recounting each ‘player’ in the ACLU group， the Myriad group， the various executive office and government groups， it’s impressive again how many people and how much combined experience and hard work it takes to develop something like this， not just at the case level but it crafting a PR narrative to consume what’s going on in the courts。 while it’s interesting theoretically around bodies and ownership and capitalism and spurring innovation， and I admire the author for presenting the alternative views of many parties， I also learned I just don’t find the technical intricacies of DNA or of patents all that interesting。 not a bad book， well researched， but personally a slog to get through。 。。。more
Julie
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Fascinating， but more than a little dry
Ana Villalba
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I enjoy reading this book。 I like how the author describes the implicated people （their career， job experience， and even personal life）。 Also， the science basics of the sue were pretty well explained！！！
BookStarRaven
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Quick Take: The ACLU fights big business for the rights to your genes。I never would have thought that genetics and patent law could make for such a nail-biting tale， but that's exactly what Jorge L。 Contreras does in The Genome Defense。 Should your genes be patented？ This was the core question asked by the ACLU as they brought a case against Myriad Genetics in 2009 eventually bringing the case before the Supreme Court in 2013。This story kept me on the edge of my seat。 I was on the side of the AC Quick Take: The ACLU fights big business for the rights to your genes。I never would have thought that genetics and patent law could make for such a nail-biting tale， but that's exactly what Jorge L。 Contreras does in The Genome Defense。 Should your genes be patented？ This was the core question asked by the ACLU as they brought a case against Myriad Genetics in 2009 eventually bringing the case before the Supreme Court in 2013。This story kept me on the edge of my seat。 I was on the side of the ACLU， believing that my genes should not be patented。 To me， the other side was all about profit and they had no reasonable argument that parts of the human gene could be patented。 Given that I’m not in a scientific field， I had never heard of this court case。 I appreciated the way the book talked about complicated genetics and legal terminology in such a way that anyone can understand。 I would recommend this book to anyone who has genes （ha ha） or anyone interested in genetics/patent law。 Rating: 5/5Genre: Non-Fiction/Science/LawCheck it out on Instagram HERE！ 。。。more
Cynthia
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Excellent， well written book。
Lori Yvette Fernandez Lopez
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It’s amazing how many things can be commercialized for profit， including our own genetic blueprints。 Additionally， it’s terrifying that the people responsible for making these decisions have so little scientific knowledge to support their decision making。
Mel Nguyen
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Days from now， I will most likely forget the details of the book。 But I will never forget that a group of humans had once fought very， very hard to free humanity from the ownership and monopoly of our own DNA。 The Genome Defense is a remarkably detailed story documenting the journey and the stories， from the very first seed of thought to the decision by the Supreme Court to reject all genomic DNA patenting in the US。 Not only did the decision undo years of monopoly genomic testing， but it paved Days from now， I will most likely forget the details of the book。 But I will never forget that a group of humans had once fought very， very hard to free humanity from the ownership and monopoly of our own DNA。 The Genome Defense is a remarkably detailed story documenting the journey and the stories， from the very first seed of thought to the decision by the Supreme Court to reject all genomic DNA patenting in the US。 Not only did the decision undo years of monopoly genomic testing， but it paved the way for a new era of genetic diagnostics and understanding。 This is only the beginning。 （FYI， cDNA is still patentable in the US， and in many other countries， the practice of patenting gDNA is still widely allowed。） 。。。more
Ron Ackerman
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Great legal thriller and history of the ACLU fight over Braca1
Kris
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3。5 StarsThis was really worth reading because the topic of ownership and understanding of our genes is so important。 Hearing about the details of the business side of medicine is always so eye-opening and infuriating。 That being said， this was hard to get into sometimes。 The author would meander sometimes with little or not so little personal scenes， often barely tying into the subject at hand。 I picked up this book to hear about the ethics and legal battle over gene patenting， not to hear how 3。5 StarsThis was really worth reading because the topic of ownership and understanding of our genes is so important。 Hearing about the details of the business side of medicine is always so eye-opening and infuriating。 That being said， this was hard to get into sometimes。 The author would meander sometimes with little or not so little personal scenes， often barely tying into the subject at hand。 I picked up this book to hear about the ethics and legal battle over gene patenting， not to hear how charming someone is or how cute their hobbies or how distinguished their manner。 I don't really need to know some guys exact thoughts one morning in his office and checked his email。 For such an important factual topic， it was odd to have these "narrative" sections。With so many moving parts， so many players， I feel more focus could have been put into explaining the court system and the meaning of the different outcomes。 The initial case and the final case were solidly handled， but the segment of time between them was kind of confusing。 I was unclear what options were still on the table， or what had precedent。 The book could have been streamlined a bit， but I still came away satisfied。 。。。more
Eric_W
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In a 1955 news show called See It Now Edward R。 Murrow asked the inventor of the polio vaccine， Jonas Salk， who owned the patent to the vaccine。 Salk replied， "Well， the people。 There is no patent。 Could you patent the sun？" This book is about a specific case， but it's also about much more， an indictment of the current patent system。 Myriad Genetics， a company held the patents on two key genes， BRCA1 and BRCA2。 Everyone has those genes， but women with certain mutations in their BRCA genes face m In a 1955 news show called See It Now Edward R。 Murrow asked the inventor of the polio vaccine， Jonas Salk， who owned the patent to the vaccine。 Salk replied， "Well， the people。 There is no patent。 Could you patent the sun？" This book is about a specific case， but it's also about much more， an indictment of the current patent system。 Myriad Genetics， a company held the patents on two key genes， BRCA1 and BRCA2。 Everyone has those genes， but women with certain mutations in their BRCA genes face much higher risks of breast or ovarian cancer。 Through its patents， Myriad had essentially cornered the market on BRCA testing。 The company charged more than $3，000 for a test， and insurers didn’t always cover it。 Some women weren’t able to get tested because they couldn’t afford it。 And the problem went beyond cost: One woman who joined the lawsuit as a plaintiff tested positive for a BRCA mutation but before undergoing surgical removal of her ovaries wanted a second opinion; because of Myriad’s patents， no other lab could confirm the diagnosis。 The Association for Molecular Pathology along with several other medical associations， doctors and patients sued the U。S。Patent and Trademark Office and Myriad Genetics to challenge several patents related to human genetics。 The suit also challenged several method patents covering diagnostic screening for the genes。 Myriad argued that once a gene is isolated， and therefore distinguishable from other genes， it could be patented。 By patenting the genes， Myriad had exclusive control over diagnostic testing and further scientific research for the BRCA genes。 Petitioners spearheaded by the ACLU， argued that patenting those genes violated the Patent Act because they were products of nature。 They also argued that the patents limit scientific progress。 Section §101 limits patents to "any new and useful process， machine， manufacture， or composition of matter， or any new and useful improvement thereof。" The district court granted summary judgment in favor of petitioners， holding that isolating a gene does not alter its naturally occurring fundamental qualities。 （Judge Robert Sweet was ably assisted by his clerk who had an advanced degree in the bio-sciences。 Sweey's opinion is worth reading as a clear exposition of both the science and the legal aspects of the case。 You can read it here**。） The U。S。 Court of Appeals for the Federal Circuit （specializing in patent cases， it was known as the "nerd's" court） reversed， holding that isolated genes are chemically distinct from their natural state in the human body。 In March 2012， Petitioners sought certiorari; and in light of Mayo Collective Services v。 Prometheus Laboratories。 the U。S。 Supreme Court vacated the Federal Circuit judgment and remanded， i。e。， sent it back for further consideration On remand， the Federal Circuit again upheld the patentability of the BRCA genes。 Again appealed to the Supreme Court which ruled unanimously that genes were not patentable although cDNA was， as it was not a product of nature。 The case was unusual in that the Solicitor General's Office took a position in opposition to that of the Patent Office which had declared that since they had permitted patenting of genes already， to reverse that would just mess up previously decided cases。 That the SG's office did so， was the result of compromise worked out by many agencies brought together at the behest of Obama to determine what the position of the government should be。 （It's worth remembering that Obama's mother had died of ovarian cancer at 56， fighting insurance companies until her death， and his grandmother died of breast cancer。） The compromise was orchestrated by Mark Freeman who serves a gold star for bringing such disparate parties together。 It's also notable that Francis Collins， NIH director was adamantly opposed to gene patenting。 He had been a co-worker with Mary Kelly and Mark Skolnick in isolating and linking the BRCA1 and BRCA2 gene mutations to breast and ovarian cancers。 Skolnick had recognized the monetary potential in their discovery and founded Myriad genetics， over the opposition of Kelly and Collins， which monopolized BRCA testing and made lost of money。 There are some very appealing characters: Lori Andrews， the "Gene Queen" an attorney who was upset with the patenting of a test for Canavan Disease; Michael Crighton， whose book Next and NYT op-eds laid some of the public groundwork for the court cases; Dan Ravicher， a successful patent attorney who became disillusioned with the way patents were destroying innovation and who formed his own public interest firm to challenge patents; Tania Simoncelli， the individual most responsible for getting the ACLU interested in gene-patenting; and Chris Hansen， the ACLU attorney who argued the case before the court。 A very interesting read that raises all sorts of bioethical， medical， economic， and legal issues。**https://patentlyo。com/media/docs/2010。。。 。。。more
Colleen
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This was excellent！ Health care policy， science， biotech， law， Congress guest appearance。 Was a dense read - not a quick read。 But you don’t need a background in any of the subject matters to be drawn into the story。 Recommend！
Ellie Sheinwald
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This book is my favorite of 2022 so far。 Thought it would be dry， but told an incredibly compelling story。 Highly recommend！
Biggus
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Gave it four hours， that was enough。 Didn't entertain me， didn't educate me， failed to hold my interest， and I doubt another eight hours would have changed much。 Gave it four hours， that was enough。 Didn't entertain me， didn't educate me， failed to hold my interest， and I doubt another eight hours would have changed much。 。。。more
Jim Connelly
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Important view of biotech， human genes， patents， the law and the courts。 Very readable for the non-scientist and non-lawyers among us but imparts an understanding of these complex issues。 Who owns your genes？ This story describes the years long battle to resolve this point all the way to the US Supreme Court。
Harry
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Jorge Contreras presents a well researched summary of the ACLU bringing a lawsuit against Myriad Genetics and their patenting of the BRCA gene found in humans， which can accurately predict increased chances or breast/ovarian cancer in women。 I found the tagline "Inside the Epic Legal Battle to Determine Who Owns Your DNA" slightly dramatic， as Myriad was only looking to "own" a specific subsection of the human genome， but the larger ethical question this ownership raises were no doubt deserving Jorge Contreras presents a well researched summary of the ACLU bringing a lawsuit against Myriad Genetics and their patenting of the BRCA gene found in humans， which can accurately predict increased chances or breast/ovarian cancer in women。 I found the tagline "Inside the Epic Legal Battle to Determine Who Owns Your DNA" slightly dramatic， as Myriad was only looking to "own" a specific subsection of the human genome， but the larger ethical question this ownership raises were no doubt deserving of the impassioned language。 The law is clearly all about trekking forward based on past legal precedent， and the decisions in this case will no doubt affect human rights for many decades to come。 Contreras' greatest achievement here though is distilling the essential parts of a lawsuit and the litigation therein to readable， understandable， and interesting prose that captures the complexities and machinations of the American legal system。 。。。more
Mary Agnes Joens
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A compelling， comprehensive look at one of the most important patent cases in recent memory。 Contreras does an excellent job breaking down the details of the scientific and legal issues in the case in a way that's comprehensible to a lay reader， and manages to turn what could otherwise be dull or confusing subject matter into an engaging page-turner。 A compelling， comprehensive look at one of the most important patent cases in recent memory。 Contreras does an excellent job breaking down the details of the scientific and legal issues in the case in a way that's comprehensible to a lay reader， and manages to turn what could otherwise be dull or confusing subject matter into an engaging page-turner。 。。。more
Lauren Lee
，
With no law or science background， The Genome Defense kept me engaged in the epic legal battle around who has ownership to our genes！ Starting 1910， a patent case around adrenaline came before the federal court where it ruled that a product of nature could be patented。 Fast forward to 2000’s， almost 1/4th of the human genome was patented。 This meant that 1 company could hold exclusive access to a life changing diagnostic test。 In this case， Myriad Genetics held exclusive access to a targeted dia With no law or science background， The Genome Defense kept me engaged in the epic legal battle around who has ownership to our genes！ Starting 1910， a patent case around adrenaline came before the federal court where it ruled that a product of nature could be patented。 Fast forward to 2000’s， almost 1/4th of the human genome was patented。 This meant that 1 company could hold exclusive access to a life changing diagnostic test。 In this case， Myriad Genetics held exclusive access to a targeted diagnostic test for breast and ovarian cancer patients… charging $3，600 a pop！The Genome Defense follows the lawsuit brought on by ACLU against Myriad Genetics for their exclusive access to BRCA1 and BRCA2 testing that ultimately made its way all the way up to the Supreme Court to end all patents on genomic DNA。 Read if you’re interested in learning more about this fascinating case。 You’re introduced to all the players， the trials， genomics and patent law。 。。。more
Susan Dietz
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Riveting- a must read for anyone interested in science， health policy， law or innovation。 Masterly written and readable whatever your background。
Barry
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A real 'inside baseball' look at the legal battle of the ACLU lawsuit against Myriad's BRCA patents， Contreras does an excellent job making the science and legalese accessible to laypeople。 Would love to see a follow-up or maybe a predecessor really focussing on how gene patents were issued in the first place within the Patent Office。 A real 'inside baseball' look at the legal battle of the ACLU lawsuit against Myriad's BRCA patents， Contreras does an excellent job making the science and legalese accessible to laypeople。 Would love to see a follow-up or maybe a predecessor really focussing on how gene patents were issued in the first place within the Patent Office。 。。。more
PottWab Regional Library
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SM
Juby
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Fascinating！ A deep dive into the AMP vs Myriad case that went before the Supreme Court。 I got a little lost on all the different players but enjoyed the insights into patents， what constitutes an invention vs composition of nature， and the inner working of the legal system and Supreme Court。
Aaron
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This review has been hidden because it contains spoilers。 To view it， click here。 I found the topic very fascinating and the text was very informative。 But the structure of the book （chronological order with all the characters introduced in blocks） made it less engaging for me。 The story also felt like it lost steam in the last third and began to drag。 Rather than being riveted and enthused when the supreme court ruling was announced， I simply closed the book and thought "next"。 The outcome seemed inevitable from about half way through。 I found the topic very fascinating and the text was very informative。 But the structure of the book （chronological order with all the characters introduced in blocks） made it less engaging for me。 The story also felt like it lost steam in the last third and began to drag。 Rather than being riveted and enthused when the supreme court ruling was announced， I simply closed the book and thought "next"。 The outcome seemed inevitable from about half way through。 。。。more
Armen Shirvanian
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My interview with Professor Jorge L。 Contreras about The Genome Defense for The Armen Show Podcast:http://www。armenshirvanian。com/podcas。。。 My interview with Professor Jorge L。 Contreras about The Genome Defense for The Armen Show Podcast:http://www。armenshirvanian。com/podcas。。。 。。。more
David Meyer
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This took a subject that could be really dry and kept it captivating throughout the book。 As an unexpected bonus， the description of the case as presented in the Supreme Court was fascinating and fun。
Chloe Kirk
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