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The Genome Defense: Inside the Epic Legal Battle to Determine Who Owns Your DNA
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.
432 pages, Paperback
Published October 18, 2022
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Displaying 1 - 30 of 85 reviews
October 1, 2021
Dense Yet Enlightening. If you're like me and don't like taking books across into a new month, I do *not* recommend trying to read this on the last day of the month while still working or having virtually any other obligation. Though its bibliography is a touch low at just 17% of this advanced copy (and it has numerous problems, at least in this form, of saying something like "the industry spent $ billions of dollars" without actually giving the number - a problem I've never noted before in any other such text), much of the reason for that is that the author himself conducted so many interviews and consulted the public court records so much, so at least there is that on that particular point. Beyond its sourcing though, this is truly a fascinating yet *dense* look at the particular issue of the AMP v Myriad patent lawsuit that eventually became a landmark Supreme Court of the United States case, detailing its full history and the personnel involved, at least insofar as their personal involvement with the case goes. (Vs other similar books looking at a particular issue like this, where full biographies of the personnel are given. Here, just enough biography is given to establish who this person is within context of this issue and their motivations surrounding it, without giving their full life stories outside of events connected to this exact case.) You may say to yourself "this is just 350 or so effective pages, that is an easy day's read". IT. IS. NOT. I cannot reiterate enough just how dense (yet truly readable and fascinating) this book is. Almost as though it seems to try to pack in double the amount of words of a book of similar length. Still, it is truly compelling, truly comprehensive, and truly well written, and for this it is very much recommended.
March 7, 2022
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...
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...
July 7, 2023
[28 May 2023]
It isn't very often that reading a nonfiction book keeps me up much past my normal bedtime. They're interesting, but not often that gripping or suspenseful. This book did. A book about a supreme court case. About patent law, which is generally considered one of the most arcane and boring legal practices, unless you're a scientist. And it wasn't even that it was that suspenseful. After all, I knew before reading it how the case turned out, generally.
I suppose this could be considered narrative nonfiction, since it tells a single story, in a progressive fashion. It is very well written. The author is a law professor and is very good at explaining the legal process and issues for the lay person. His style is relaxed, definitely more narrative than didactic. He introduces many characters, on both sides of the case, and does an excellent job of fleshing them out. I did occasionally lose track, but the main characters were always clear. One thing the author focused on was explaining how being involved in the case affected the principal parties, which of course increased the interest factor. And if you get truly confused, there is an appendix of parties at the end of the book.
Contreras is even able to build mild suspense as he tells the story. As the story of the case progresses through the various court levels, with different judges and even different lawyers on both sides, I was very engrossed. Although I knew the ultimate resolution, I did not know ahead of time how the case was argued or ruled on in any detail. The story kept me very successfully engaged. Of course, I'm interested in the law and genetics, but I am neither a lawyer or a scientist.
Speaking of the law and the science involved, the author did make frequent diversions to explain some aspect of either that was important to following what was happening. He was pretty successful at that without getting too far into the weeds. At least for the main text of the book. There is an appendix at the end in which the author discusses what he thinks the long term impacts of this case will be for patent law and the study of genetics. In that he gets pretty much into the weeds, but I still think it's worth reading even if I couldn't follow all of the specifics.
For the most part, this was an easy read. Very interesting. Highly recommended.
It isn't very often that reading a nonfiction book keeps me up much past my normal bedtime. They're interesting, but not often that gripping or suspenseful. This book did. A book about a supreme court case. About patent law, which is generally considered one of the most arcane and boring legal practices, unless you're a scientist. And it wasn't even that it was that suspenseful. After all, I knew before reading it how the case turned out, generally.
I suppose this could be considered narrative nonfiction, since it tells a single story, in a progressive fashion. It is very well written. The author is a law professor and is very good at explaining the legal process and issues for the lay person. His style is relaxed, definitely more narrative than didactic. He introduces many characters, on both sides of the case, and does an excellent job of fleshing them out. I did occasionally lose track, but the main characters were always clear. One thing the author focused on was explaining how being involved in the case affected the principal parties, which of course increased the interest factor. And if you get truly confused, there is an appendix of parties at the end of the book.
Contreras is even able to build mild suspense as he tells the story. As the story of the case progresses through the various court levels, with different judges and even different lawyers on both sides, I was very engrossed. Although I knew the ultimate resolution, I did not know ahead of time how the case was argued or ruled on in any detail. The story kept me very successfully engaged. Of course, I'm interested in the law and genetics, but I am neither a lawyer or a scientist.
Speaking of the law and the science involved, the author did make frequent diversions to explain some aspect of either that was important to following what was happening. He was pretty successful at that without getting too far into the weeds. At least for the main text of the book. There is an appendix at the end in which the author discusses what he thinks the long term impacts of this case will be for patent law and the study of genetics. In that he gets pretty much into the weeds, but I still think it's worth reading even if I couldn't follow all of the specifics.
For the most part, this was an easy read. Very interesting. Highly recommended.
December 14, 2021
This book was fascinating; I could not put it down. I have the science background but not any legal background, yet it was written to be very accessible to people without either background. (I do think people with no science may be a little confused by all the conflicting metaphors that were thrown around in the courtroom but that was the experience of many of the participants so maybe that's alright.) It was both fascinating and infuriating to see people making such important legal decisions with such little understanding of the science involved.
This could have been very dense and boring or over-sensationalized and dramatic. I thought the author did a good job walking the line between the two. He didn't shy away from discussing technical details and including the many people involved. He also didn't vilify anyone just for the sake of a neat good vs evil drama. As science continues to progress into new intersections with society, the ethical questions are going to keep coming and I hope we continue to have books like this to explain how important resulting policy is.
The appendix was a nice touch as a way to get the author's personal opinion. Many of his opinions could be guessed from the writing but he did keep things fairly balanced in the main part of the book so it was good to have things clearly spelled out.
This could have been very dense and boring or over-sensationalized and dramatic. I thought the author did a good job walking the line between the two. He didn't shy away from discussing technical details and including the many people involved. He also didn't vilify anyone just for the sake of a neat good vs evil drama. As science continues to progress into new intersections with society, the ethical questions are going to keep coming and I hope we continue to have books like this to explain how important resulting policy is.
The appendix was a nice touch as a way to get the author's personal opinion. Many of his opinions could be guessed from the writing but he did keep things fairly balanced in the main part of the book so it was good to have things clearly spelled out.
January 26, 2025
It is quite a challenge to try and build a compelling book about a SCOTUS case let alone a case like Association for Molecular Pathology v. Myriad Genetics, Inc. Nonetheless, Contreras gives it a good effort. Fortunately, I'm someone who works in the industry of medical genetics, making me incidentally invested in the recondite portion of the law and its history.
Contreras tries to build a narrative in which various individuals are negatively affected by gene patent practices and other in the legal advocacy grow interested in the question of whether something of nature can be patented. These forces join together with the help of some figures from institutional science (Francis Collins and Eric Landers) to take on the narrowly interested Myriad Genetics. Subsequently, the narrative follows the trajectory of related litigation efforts (e.g. Laboratory Corporation of America Holdings [LabCorp] v. Metabolite Laboratories, Inc.), the science of molecular diagnostics, and the patent law jurisprudence. Contreras does his best to underscore the urgency for ending gene patenting and emphasizes the role of the ACLU throughout the process. Eventually, we get the ending we know is coming - an end to gene patenting. Weirdly, we don't get any details on SCOTUS' actual decision apart from their supposedly silly carve out for patenting cDNA.
The general content of the book was fine but could largely be gleaned from reporting and online resources fairly quickly. The book overlooks many of the important fundamentals of genetic testing, which seem to have largely been overlooked in the case. Generally, it all suggests our patenting system is fairly ad hoc, creating distortions and rents more often than fueling innovation. However, this isn't evaluated very closely in the work either, and the look at patent law itself is high-level rather than in the weeds. I would have preferred a work that dug more deeply into the scientific practices, the business practices, and the legal practices on the topic of gene patenting. Perhaps the value here is that it incidentally suggests America needs to really think heavily about reforming intellectual property law so as to best incentivize innovation and remain flexible as technology will change in ways that require business models to adjust. This is obviously the case with gene patents where the initial investment concerned actually mapping the gene in association with a medical condition of interest (in this case the BRCA genes and hereditary breast and ovarian cancer) but after the establishment and standardization of this research in an assay the entire value add becomes the accuracy and comprehensiveness of the assay and the speed of returning the results. Additionally, as DNA sequencing technology advanced it became increasingly easy to bundle the testing of multiple genes at once. All this of course occurs within the byzantine healthcare system in which insurer have to develop reimbursement policies for these tests and physicians have to learn when the should be ordered and how to communicate about the test results.
Contreras tries to build a narrative in which various individuals are negatively affected by gene patent practices and other in the legal advocacy grow interested in the question of whether something of nature can be patented. These forces join together with the help of some figures from institutional science (Francis Collins and Eric Landers) to take on the narrowly interested Myriad Genetics. Subsequently, the narrative follows the trajectory of related litigation efforts (e.g. Laboratory Corporation of America Holdings [LabCorp] v. Metabolite Laboratories, Inc.), the science of molecular diagnostics, and the patent law jurisprudence. Contreras does his best to underscore the urgency for ending gene patenting and emphasizes the role of the ACLU throughout the process. Eventually, we get the ending we know is coming - an end to gene patenting. Weirdly, we don't get any details on SCOTUS' actual decision apart from their supposedly silly carve out for patenting cDNA.
The general content of the book was fine but could largely be gleaned from reporting and online resources fairly quickly. The book overlooks many of the important fundamentals of genetic testing, which seem to have largely been overlooked in the case. Generally, it all suggests our patenting system is fairly ad hoc, creating distortions and rents more often than fueling innovation. However, this isn't evaluated very closely in the work either, and the look at patent law itself is high-level rather than in the weeds. I would have preferred a work that dug more deeply into the scientific practices, the business practices, and the legal practices on the topic of gene patenting. Perhaps the value here is that it incidentally suggests America needs to really think heavily about reforming intellectual property law so as to best incentivize innovation and remain flexible as technology will change in ways that require business models to adjust. This is obviously the case with gene patents where the initial investment concerned actually mapping the gene in association with a medical condition of interest (in this case the BRCA genes and hereditary breast and ovarian cancer) but after the establishment and standardization of this research in an assay the entire value add becomes the accuracy and comprehensiveness of the assay and the speed of returning the results. Additionally, as DNA sequencing technology advanced it became increasingly easy to bundle the testing of multiple genes at once. All this of course occurs within the byzantine healthcare system in which insurer have to develop reimbursement policies for these tests and physicians have to learn when the should be ordered and how to communicate about the test results.
November 27, 2025
This book was a bit outside my comfort zone. The subtitle did say what the book was about, the legal battle, so this was very law focused. The law suite was brought on by the ACLU against the company Myriad who had a patent for a genetic test. This was the BRCA test for breast cancer. Can companies patent DNA or test for DNA? There's a bit of science involved in the book, but it's mostly the nitty gritty of a lawsuit. The author did try to make it readable, and it wasn't boring, but still my eyes glazed over more than once.
October 27, 2021
I still have to read the appendix, but I’m counting it done tonight. I’m reviewing this book for work, so will save the full review for then. Just to start: if you have any thoughts about capitalism and bodily autonomy and the ethics of big pharma, READ THIS BOOK.
It’s a well told, accessible and highly detailed story of how the ACLU waded into patent law for the first time ever and ended with the Supreme Court ending 30 years of the Patent Office granting patents on genes. You do not have to understand anything about patent law to read this, but if you do understand patent law you’ll find a lot of good stuff. I also just appreciated this look at the patent world before 101 chaos and Alice/Mayo was the norm. Invaluable context for my job.
Edit: final review here!
It’s a well told, accessible and highly detailed story of how the ACLU waded into patent law for the first time ever and ended with the Supreme Court ending 30 years of the Patent Office granting patents on genes. You do not have to understand anything about patent law to read this, but if you do understand patent law you’ll find a lot of good stuff. I also just appreciated this look at the patent world before 101 chaos and Alice/Mayo was the norm. Invaluable context for my job.
Edit: final review here!
December 6, 2021
A comprehensive and insightful reporting of the legal case for patenting human genes. Contreras presents difficult subjects, legal and scientific so that anyone can follow the proceedings. The amount of work and expertise that went into this case boggles the mind.
October 6, 2021
I won this book through a Goodreads Giveaway.
Interesting read. Well written. It is written for the average person to understand what the legal battle is about. It's not scholarly or complex science.
Each chapter has a clever title. There are photographs of key players discussed in the book.
Impressive list of sources.
Trivia tidbit for trivia players -- Chapter 4 states President Lincoln is the only US President to ever receive a patent. In 1849, Patent #6469.
On a personal note, the Genome Defense, reinforced my viewpoint to save my BRAC test results and my mother's results for future generations.
Interesting read. Well written. It is written for the average person to understand what the legal battle is about. It's not scholarly or complex science.
Each chapter has a clever title. There are photographs of key players discussed in the book.
Impressive list of sources.
Trivia tidbit for trivia players -- Chapter 4 states President Lincoln is the only US President to ever receive a patent. In 1849, Patent #6469.
On a personal note, the Genome Defense, reinforced my viewpoint to save my BRAC test results and my mother's results for future generations.
February 19, 2023
Where to begin with this book…. It is absolutely enraging and infuriating to consider that a company- any company-can patent pieces of human genome, and yet that is precisely what has happened for three decades until the Supreme Court ruling in 2013. The mental gymnastics that lawyers employ to convince the courts and the public that isolating exons out of a chromosome is somehow an “invention” and therefore patentable is beyond absurd and it has had ( as the author illustrates) devastating consequences for many people, especially women. What’s more, the discovery of BRCA 1 and BRCA 2 genes (and the mutations that lead to greater risks of breast and ovarian cancer) were funded in the beginning by federal grants, which we collectively paid for. Then Myriad (as many other biotech companies) took those discoveries and were able to carry them first through the finish line, and then patent them and subsequently earn billions of dollars. And to be clear, the parent office that has been granting gene patents for three decades is as much to blame for this. They fought on the side of Myriad because they thought it is a-ok to patent human genes. Just the notion that pieces of our very genome- the very essence of who we are as a species - can be patented is peak capitalism in its most rotten form. It’s mind boggling, absurd, and absolutely unbelievable that anyone, anywhere, can make any argument for patenting the essence of life.
Great and informative book, however angry and infuriated it made me. It hit close to home in so many ways.
Great and informative book, however angry and infuriated it made me. It hit close to home in so many ways.
September 10, 2023
The law often trails behind advances in science. This is a fascinating story of the legal battle between the Association for Molecular Biology (AMP) and a company called Myriad Genetics who held a patent for the BRCA genes which are genetically linked to breast cancer and ovarian cancer. The question came down to: Should a corporation be allowed to patent genes which are nature’s code for who we are? The fact is corporations had been legally patenting genes for over two decades when this case was filed. But should this really be legal?
I wasn’t sure if this book would contain too much legal detail that was over my head (I’m not a lawyer) but that was not the case at all. The author is a Harvard trained lawyer who teaches intellectual property, science policy and genetics law. The story he tells reads like a fascinating legal drama. The molecular genetics piece of this story was easy for me to understand as I taught molecular genetics in high school for many years. Besides the science and the law, there was a lot of politics, media involvement, and manipulation of the public, in an effort to bring this case forward.
I found it so interesting how the ACLU looked for just the right case to bring a lawsuit to challenge the right to patent human genes. It couldn’t be a lawsuit dealing with a rare gene that would affect few people. It had to be a gene that affects many people and would attract both media attention and public attention. Breast cancer genes fit the criteria perfectly. ACLU lawyers and strategists usually file cases with respect to constitutional rights, not patent law. Many of the people, both lawyers and support people who worked in the ACLU did not have any background in molecular genetics and they needed a lot of tutoring on the intricate aspects of DNA, transcription, translation, mRNA, cDNA, introns and exons. The science part of this was explained very clearly with generous use of similes and metaphors that made this difficult material much easier to understand. It’s obvious that Contreras must be an excellent teacher.
The ACLU expectation was that whatever the outcome of this lawsuit in the lower courts, the case would ultimately go to the Supreme Court. The question was, if the case got that far, would the Supreme Court take it. The Supreme court only agrees to hear less than 5% of the cases that are appealed to the court. This case had to be one that captured the attention and interest of the public and the media in order to attract the attention of the nation’s highest court.
If you are interested in genetics and enjoy legal suspense, you will enjoy this one.
I wasn’t sure if this book would contain too much legal detail that was over my head (I’m not a lawyer) but that was not the case at all. The author is a Harvard trained lawyer who teaches intellectual property, science policy and genetics law. The story he tells reads like a fascinating legal drama. The molecular genetics piece of this story was easy for me to understand as I taught molecular genetics in high school for many years. Besides the science and the law, there was a lot of politics, media involvement, and manipulation of the public, in an effort to bring this case forward.
I found it so interesting how the ACLU looked for just the right case to bring a lawsuit to challenge the right to patent human genes. It couldn’t be a lawsuit dealing with a rare gene that would affect few people. It had to be a gene that affects many people and would attract both media attention and public attention. Breast cancer genes fit the criteria perfectly. ACLU lawyers and strategists usually file cases with respect to constitutional rights, not patent law. Many of the people, both lawyers and support people who worked in the ACLU did not have any background in molecular genetics and they needed a lot of tutoring on the intricate aspects of DNA, transcription, translation, mRNA, cDNA, introns and exons. The science part of this was explained very clearly with generous use of similes and metaphors that made this difficult material much easier to understand. It’s obvious that Contreras must be an excellent teacher.
The ACLU expectation was that whatever the outcome of this lawsuit in the lower courts, the case would ultimately go to the Supreme Court. The question was, if the case got that far, would the Supreme Court take it. The Supreme court only agrees to hear less than 5% of the cases that are appealed to the court. This case had to be one that captured the attention and interest of the public and the media in order to attract the attention of the nation’s highest court.
If you are interested in genetics and enjoy legal suspense, you will enjoy this one.
June 14, 2024
I love reading nonfiction books regularly. I usually do memoirs but decided to give this one a try as well since it sounded really interesting and important. It took me much longer to get through the entirety of this book than I would’ve liked though. I started it a while back but recently decided to start over again because I couldn’t remember the necessary details for where I had stopped. I’m really glad I did because there is just sooo much information here.
The whole book felt very well researched and went into a lot of detail. While I sometimes struggled with that because I don’t have a very good memory, it still was really interesting throughout. I did probably read too much of it in a day sometimes and should’ve taken my time with it a bit more because it did feel a bit dry after a while but nonetheless, I learned a lot and am glad I forged through it. I especially liked that there was a lot of info from both sides of the conflict and how it affected people in real life.
If you prefer nonfiction on audio, the narrator for this one felt like a really good fit as well.
The whole book felt very well researched and went into a lot of detail. While I sometimes struggled with that because I don’t have a very good memory, it still was really interesting throughout. I did probably read too much of it in a day sometimes and should’ve taken my time with it a bit more because it did feel a bit dry after a while but nonetheless, I learned a lot and am glad I forged through it. I especially liked that there was a lot of info from both sides of the conflict and how it affected people in real life.
If you prefer nonfiction on audio, the narrator for this one felt like a really good fit as well.
February 11, 2022
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.
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.
February 14, 2025
The Genome Defense is a fast paced, engaging account of AMP v Myriad, a fundamental case that struck down gene patents. Throughout the book, Contreras does a wonderful job at educating his readers without bogging them down. It’s clear that the author spent a lot of careful and thoughtful planning on how he wanted to present the scientific and legal concepts discussed in the book. I truly believe that anyone, regardless of background, can follow along with the content - and understand it. What you’ll find in this book is a wonderful telling of a case that changed parenting and the genetic testing industry!
March 28, 2022
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.)
(FYI, cDNA is still patentable in the US, and in many other countries, the practice of patenting gDNA is still widely allowed.)
November 14, 2023
Fascinating look at how patent law works and again how Capitalism profits off of people's suffering.
May 19, 2024
Highly recommend this book! I learned so much about the fight to free human genes from patents as well as patent law.
October 29, 2024
good news: i have finally identified my ideal legal job (at the aclu)
bad news: it is unattainable
bad news: it is unattainable
May 30, 2022
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: 5/5
Genre: Non-Fiction/Science/Law
Check it out on Instagram HERE!
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: 5/5
Genre: Non-Fiction/Science/Law
Check it out on Instagram HERE!
November 21, 2021
Very interesting, complex issues. Not a fast read.
October 26, 2021
I received a copy of this book from the publisher in exchange for an honest review.
I love all books, movies, and TV shows that focus on any aspect of genetics (The Unfit Heiress, The Immortal Life of Henrietta Lacks, Orphan Black, etc.) In The Genome Defense, I learned so much about the history of laws surrounding genes and genetic testing in the United States. I also gained a new understanding into the gap between scientific advancements and the delayed creation and application of relevant laws. This is a book that I will likely buy a physical copy of for 2 reasons: #1 the review copy had empty spaces where I'm sure the final specific information for dates, monetary amounts, etc. will be included and #2 while I think this book is so cutting edge and current, it will be fascinating to revisit it in future years after further genetic and legal advancements.
Come chat with me about books here, too:
Blog | Instagram | Twitter | Pinterest
I love all books, movies, and TV shows that focus on any aspect of genetics (The Unfit Heiress, The Immortal Life of Henrietta Lacks, Orphan Black, etc.) In The Genome Defense, I learned so much about the history of laws surrounding genes and genetic testing in the United States. I also gained a new understanding into the gap between scientific advancements and the delayed creation and application of relevant laws. This is a book that I will likely buy a physical copy of for 2 reasons: #1 the review copy had empty spaces where I'm sure the final specific information for dates, monetary amounts, etc. will be included and #2 while I think this book is so cutting edge and current, it will be fascinating to revisit it in future years after further genetic and legal advancements.
Come chat with me about books here, too:
Blog | Instagram | Twitter | Pinterest
March 9, 2022
3.5 Stars
This 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.
This 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.
February 12, 2023
It was very interesting to learn about how ACLU cases work - the decisions about what matters to pursue, the way that cases are prepared and brought, the process of publicity and building public support and the actual litigation process. It was also interesting to see how the government becomes involved in litigation that affects the public interest, how the Solicitor General basically has final say on whether the government will intervene and on what terms but only after consulting with other affected government departments and trying to build a concensus. And it was particularly interesting in this case where the Justice Department disagreed with the Patent Office and took a position over Patent Office objections. I am a lawyer, but the things described in this book are a million miles from anything that I do in my work. This is a book that I would probably have loved when I was just going to law school because it is story about crusading lawyers taking action to make a difference on an important point of principle that affects basic rights. Now I'm more skeptical about the justice system and whether it is the right vehicle for this kind of thing, so that kept me from cheering as loudly as I might have for the ACLU when I was younger.
The basic issue in the case that is the subject of the book is whether human genes should be patentable. Intuitively they shouldn't be. The idea that you can't get a patent on something found in nature makes a lot of sense. And it shouldn't matter how clever you were in discovering it or how much money you spent. If it was already there and you just found it, no patent. If you came up with an innovative process for finding it or refining it, then fine, get patent on the process, but not on the thing you found. I was unpersuaded by all of the contrary arguments, and the Patent Office longstanding practice of granting gene patents struck me as being totally wrong. On the other hand, I did hesitate on the question of whether the courts had any business in deciding this question. The process of legal argument often seemed to me to miss the point, to obscure issues rather than clarifying them, and the questions and reasoning of the judges at all levels, particularly at the Supreme Court were frequently off target. Most of the Supreme Court justices seemed like smart people who were out of their depth in a technical area. And they had Clarence Thomas, the least intelligent and most extreme justice, write the opinion. Is this really how we should be deciding important issues like this? There has to be a better way. On the other hand, I guess this shows why we need to have the judiciary as the third arm of government because this was an issue that affected basic rights where the executive branch through the Patent Office had caved to the position of big pharma and big biotech and there was no movement in Congress to correct the problem. As flawed as the courts may be, they did right thing here, so maybe I should get over my scruples and celebrate this case as an example of separation of powers working in the way that the framers of the Constitution intended.
The basic issue in the case that is the subject of the book is whether human genes should be patentable. Intuitively they shouldn't be. The idea that you can't get a patent on something found in nature makes a lot of sense. And it shouldn't matter how clever you were in discovering it or how much money you spent. If it was already there and you just found it, no patent. If you came up with an innovative process for finding it or refining it, then fine, get patent on the process, but not on the thing you found. I was unpersuaded by all of the contrary arguments, and the Patent Office longstanding practice of granting gene patents struck me as being totally wrong. On the other hand, I did hesitate on the question of whether the courts had any business in deciding this question. The process of legal argument often seemed to me to miss the point, to obscure issues rather than clarifying them, and the questions and reasoning of the judges at all levels, particularly at the Supreme Court were frequently off target. Most of the Supreme Court justices seemed like smart people who were out of their depth in a technical area. And they had Clarence Thomas, the least intelligent and most extreme justice, write the opinion. Is this really how we should be deciding important issues like this? There has to be a better way. On the other hand, I guess this shows why we need to have the judiciary as the third arm of government because this was an issue that affected basic rights where the executive branch through the Patent Office had caved to the position of big pharma and big biotech and there was no movement in Congress to correct the problem. As flawed as the courts may be, they did right thing here, so maybe I should get over my scruples and celebrate this case as an example of separation of powers working in the way that the framers of the Constitution intended.
November 14, 2023
The author, an authority on human genetics law, has written a humdinger of a book blending the fascinating legal theater of a one-in-a-million patent case which eventually was decided in 2013 by the U.S. Supreme Court with hairy, though interesting human genetic science.
This is the book about the ground-breaking civil rights case of AMP vs Myriad. AMP is an acronym for the Association for Molecular Pathology (one of the numerous listed plaintiffs). Myriad Genetics, a Utah based corporation, owned patents on the human genes BRCA1 (i.e., BReast CAncer gene 1) and BRCA2 used for identifying people with elevated risk of developing breast cancer disease. The case was brought to the courts by lawyers at the American Civil Liberties Union (ACLU). Prior to this case the ACLU had never been involved with patent or human genetics law. It was Tania Simoncelli, a non lawyer, and I believe, at the time, ACLU's only science advisor who first raised the idea of a lawsuit challenging gene patents.
Examples, among numerous others, of major gene patents in 2008, prior to this human gene patent lawsuit (besides those for BRCA1 and BRCA2) include: gene APC (Colon cancer) owned by Johns Hopkins University, Utah; genes APOE, PSEN1, PSEN2, APP (Alzheimer's disease) owned by Duke University; and gene CFTR (Cystic fibrosis) owned by University of Michigan and Johns Hopkins.
As you will learn in this book, all the patents listed above no longer exist. You might not be surprised that the unexpected outcome of this lawsuit raised up a little dust in the world where patent law, political big shots, medicine, and corporations intersect.
Despite the loss of its patents, Myriad Genetics continues to lead the BRCA testing market. Moreover, Myriad has added numerous additional genes and disease indications to its test offerings, expanding well beyond BRCA.
A significant factor that limited access to Myriad's BRCA test was pricing. "Admittedly, Myriad's list price for BRACAnalysis, which rose from $2,400 in 1996 to about $4,000 today (including $700 for the BART, BRACAnalysis Rearrangement Test, component), is not pocket change for most people. Yet these sums pale in comparison to the staggering figures that are being charged for the latest gene therapies..." The book identifies numerous roadblocks caused by the monopoly once given to the patent owners of human genes.
Read this book to stay up-to-date with how our court system works, human genetics medicine, what the ACLU is about, and the benefits / negative impacts of patents.
This is the book about the ground-breaking civil rights case of AMP vs Myriad. AMP is an acronym for the Association for Molecular Pathology (one of the numerous listed plaintiffs). Myriad Genetics, a Utah based corporation, owned patents on the human genes BRCA1 (i.e., BReast CAncer gene 1) and BRCA2 used for identifying people with elevated risk of developing breast cancer disease. The case was brought to the courts by lawyers at the American Civil Liberties Union (ACLU). Prior to this case the ACLU had never been involved with patent or human genetics law. It was Tania Simoncelli, a non lawyer, and I believe, at the time, ACLU's only science advisor who first raised the idea of a lawsuit challenging gene patents.
Examples, among numerous others, of major gene patents in 2008, prior to this human gene patent lawsuit (besides those for BRCA1 and BRCA2) include: gene APC (Colon cancer) owned by Johns Hopkins University, Utah; genes APOE, PSEN1, PSEN2, APP (Alzheimer's disease) owned by Duke University; and gene CFTR (Cystic fibrosis) owned by University of Michigan and Johns Hopkins.
As you will learn in this book, all the patents listed above no longer exist. You might not be surprised that the unexpected outcome of this lawsuit raised up a little dust in the world where patent law, political big shots, medicine, and corporations intersect.
Despite the loss of its patents, Myriad Genetics continues to lead the BRCA testing market. Moreover, Myriad has added numerous additional genes and disease indications to its test offerings, expanding well beyond BRCA.
A significant factor that limited access to Myriad's BRCA test was pricing. "Admittedly, Myriad's list price for BRACAnalysis, which rose from $2,400 in 1996 to about $4,000 today (including $700 for the BART, BRACAnalysis Rearrangement Test, component), is not pocket change for most people. Yet these sums pale in comparison to the staggering figures that are being charged for the latest gene therapies..." The book identifies numerous roadblocks caused by the monopoly once given to the patent owners of human genes.
Read this book to stay up-to-date with how our court system works, human genetics medicine, what the ACLU is about, and the benefits / negative impacts of patents.
November 9, 2021
Contreras somehow turns this legal battle into a page-turner. I was consistently surprised at the basic scientific ignorance of lawyers at the ACLU, and of Supreme Court justices (maybe that shouldn't be surprising). To understand the implications of an issue, they consistently turn to speculative analogies, and this is probably a useful strategy in most of their cases. In this case, though, their analogies showed a profound ignorance of elementary science, of the kind that can't be fixed by looking up the definition of a chromosome the day before arguments.
> Hansen reserved a workroom at the ACLU to go over the patents and pick the exact claims that they would challenge. Despite the fact that they had been talking about gene patents for the last four years, until now Hansen had never actually read a patent cover to cover. In theory he knew what a patent was, but he envisioned the document itself as something akin to a car title or the deed to a house—a fancy legal document embossed with a seal that laid out the claims awarded by the Patent Office in a page or two.
> Going into that meeting, Hansen didn’t know the difference between a chromosome and a gene.
> One claim was particularly egregious—it gave Myriad the rights to a strand of DNA anywhere in the human body that shared a sequence of just fifteen base pairs (called a 15-mer) with the BRCA genes. That was outrageous—the human genome had 3.2 billion base pairs and the BRCA genes between them had about 200,000.
> “Are human genes patentable?” That was it. Only four words. Hansen thought it was probably the shortest question presented for certiorari in the history of the Court. But he liked it.
> called out the Court and counsel for their excessive use of bad analogies, writing that “Isolated human DNA is not a tree (Justice Kagan); sap from a tree (Justice Breyer); a chocolate chip cookie (Justice Sotomayor); a baseball bat (Greg Castanias); or a liver or kidney (Chris Hansen).”
> Genomic DNA in the form in which it exists in the human body is an unpatentable product of nature. Complementary DNA that is created in the laboratory is a patentable construct of humankind.
> We, therefore, conclude that merely finding the location of the BRCA1 and BRCA2 genes does not render the genes patent eligible as new compositions of matter … Consequently Myriad’s patents on the BRCA genes are invalid.”
> Hansen reserved a workroom at the ACLU to go over the patents and pick the exact claims that they would challenge. Despite the fact that they had been talking about gene patents for the last four years, until now Hansen had never actually read a patent cover to cover. In theory he knew what a patent was, but he envisioned the document itself as something akin to a car title or the deed to a house—a fancy legal document embossed with a seal that laid out the claims awarded by the Patent Office in a page or two.
> Going into that meeting, Hansen didn’t know the difference between a chromosome and a gene.
> One claim was particularly egregious—it gave Myriad the rights to a strand of DNA anywhere in the human body that shared a sequence of just fifteen base pairs (called a 15-mer) with the BRCA genes. That was outrageous—the human genome had 3.2 billion base pairs and the BRCA genes between them had about 200,000.
> “Are human genes patentable?” That was it. Only four words. Hansen thought it was probably the shortest question presented for certiorari in the history of the Court. But he liked it.
> called out the Court and counsel for their excessive use of bad analogies, writing that “Isolated human DNA is not a tree (Justice Kagan); sap from a tree (Justice Breyer); a chocolate chip cookie (Justice Sotomayor); a baseball bat (Greg Castanias); or a liver or kidney (Chris Hansen).”
> Genomic DNA in the form in which it exists in the human body is an unpatentable product of nature. Complementary DNA that is created in the laboratory is a patentable construct of humankind.
> We, therefore, conclude that merely finding the location of the BRCA1 and BRCA2 genes does not render the genes patent eligible as new compositions of matter … Consequently Myriad’s patents on the BRCA genes are invalid.”
November 22, 2022
Go patent that new engine. Go patent that new way to deliver medicine. Stop trying to monetize my and everyone else’s building block. Contreras explained AMP vs Myriad case on holding patent on BRAC1 and BRAC2 in such a clear and exciting way, he made a law case enjoyable. I loved how he put what I thought on paper: “ The simple fact that something had been done for a long time didn't make it right. After all, we had segregated schools for forty years, but that was no reason to keep schools segregated. If something was broken, it should be fixed. The fact that a bad practice had been going on for a long time made it even more pressing to end it now.” Let’s keep science and law dynamic; let’s stop them from turning into religious dogmas. Let’s establish facts but also keep in mind that new evidence or technology can require us to “amend” the facts.
My eyes bulged when I read the following passage: “ team-many of them students from nearby Cardozo School of Law-to understand the complex chemical structures described in pharmaceutical patents, and Ravicher gave Mason a hand with legal issues-like writing a letter to the New York City Transit Authority when it threatened to ban Mason and his research assistants from scraping DNA samples off the floors and walls of its subway stations.” WHAT?! I don’t want to know where the hair that I constantly shed ended up?!
And my blood boiled when I read the following: “ several of the large organizations, led by the National Breast Cancer Coalition, had taken positions in the 1990s against predictive genetic testing, citing concerns that low-risk individuals would seek unnecessary testing and the traditional fear that women receiving positive test results might not be able to handle them emotionally.” Excuse me but you wouldn’t make this comment if it was prostate cancer. I’m sure I rather take that emotional bullet that is a test result knowing that I could do something to avoid cancer than watch my body getting destroyed by something that could have been caught early on.
You can read this book in one sitting. It’s amazing. It’s interesting. And it pays enormous respect to those who fight to win that case. 👏🏻👏🏻👏🏻
My eyes bulged when I read the following passage: “ team-many of them students from nearby Cardozo School of Law-to understand the complex chemical structures described in pharmaceutical patents, and Ravicher gave Mason a hand with legal issues-like writing a letter to the New York City Transit Authority when it threatened to ban Mason and his research assistants from scraping DNA samples off the floors and walls of its subway stations.” WHAT?! I don’t want to know where the hair that I constantly shed ended up?!
And my blood boiled when I read the following: “ several of the large organizations, led by the National Breast Cancer Coalition, had taken positions in the 1990s against predictive genetic testing, citing concerns that low-risk individuals would seek unnecessary testing and the traditional fear that women receiving positive test results might not be able to handle them emotionally.” Excuse me but you wouldn’t make this comment if it was prostate cancer. I’m sure I rather take that emotional bullet that is a test result knowing that I could do something to avoid cancer than watch my body getting destroyed by something that could have been caught early on.
You can read this book in one sitting. It’s amazing. It’s interesting. And it pays enormous respect to those who fight to win that case. 👏🏻👏🏻👏🏻
November 16, 2022
The Genome Defense is a phenomenal work of narrative non-fiction that delves into AMP vs Myriad gene patenting lawsuit brought forward by the ACLU. Contreras skillfully peels back each layer of the onion that was the AMP vs Myriad lawsuit and delivers it to the reader in a readable, relatable, and enthralling work of non-fiction. Contreras clearly put an enormous amount of research into this book. This story has so many intersecting themes: ethical considerations with new scientific discoveries, economic impact of advancements in biotech, timely access to healthcare, politics and resulting policy implementation (to name a few). Contreras navigates these themes adeptly, teasing out the important issues and presenting them in a thought-provoking manor. I appreciate the way he weaves the story of the key players together with the case itself, making the story interesting without over sensationalizing the details. Overall, I would consider this a must read for anyone who is interested in science, law, medicine, genetics, biotech, women’s health, public policy… and the list could go on.
5 stars and a standing ovation to you, Mr. Contreras.
[An aside: I previously worked as a nurse in an Ob-Gyn clinic for 5 years, and one of my roles was to meet with reps to see if our clinic would be interested in what they had to offer. When I first started out at the clinic, I had, at the time, a puzzling experience with a lab rep from Myriad. I hadn’t worked with Myriad previously and had no previous knowledge about the outcome of the AMP vs Myriad lawsuit that had probably transpired a year or so before this meeting. When the rep came by to discuss their BRACAnalysis test, they went through a spiel about how Myriad created BRCA testing, and everyone else on the market copied what they created, so our clinic would be wise to go with the lab that understood the test the best. They also mentioned that everyone needed to stop vilifying Myriad. I left the meeting scratching my head at this outpouring of frustration, but ultimately I moved on and didn’t think much about it until now. This book helped me put that experience into perspective.]
5 stars and a standing ovation to you, Mr. Contreras.
[An aside: I previously worked as a nurse in an Ob-Gyn clinic for 5 years, and one of my roles was to meet with reps to see if our clinic would be interested in what they had to offer. When I first started out at the clinic, I had, at the time, a puzzling experience with a lab rep from Myriad. I hadn’t worked with Myriad previously and had no previous knowledge about the outcome of the AMP vs Myriad lawsuit that had probably transpired a year or so before this meeting. When the rep came by to discuss their BRACAnalysis test, they went through a spiel about how Myriad created BRCA testing, and everyone else on the market copied what they created, so our clinic would be wise to go with the lab that understood the test the best. They also mentioned that everyone needed to stop vilifying Myriad. I left the meeting scratching my head at this outpouring of frustration, but ultimately I moved on and didn’t think much about it until now. This book helped me put that experience into perspective.]
June 28, 2023
Genome Defense shines a light on what feels like a fictional court case: can biotech companies patent genes? Not lab created sequences or manipulated sections of genes, but the ones inside the human body. Told from the perspective of ACLU staff and related experts, plaintiffs, and the occasional glimpse of the defense's process, the author makes no effort to appear neutral. That doesn't bother me, and I think it won't shock many readers. It's an interesting read, and the reality of what a gene patent meant in terms of healthcare provision is well demonstrated through examples of individuals who were not able to receive testing in enough time to act proactively and reduce cancer risks. This is at times frustrating, as is the constant hand wringing from the biotech companies who stated that the inability to patent genes would destroy the industry (it hasn’t, as far as I can tell). If you missed this Supreme Court decision while it was actually happening, or if you’d like an overview that highlights details of the legal arguments, it's worth the effort.
I received this book from the publisher via NetGalley for an honest review.
I received this book from the publisher via NetGalley for an honest review.
August 6, 2024
It sparked my interest in true minutia of the law (again)! Very thought provoking, I found myself pausing just to think about the points offered throughout the book. It was well written and didnt seem like a court case but more like a compelling story.
Also:
“God can make a tree .. but man can make a baseball bat”
Although stated by myriad, this supports the government’s position that gDNA isn’t patentable and cDNA is. cDNA would be the bat - manufactured by scientists, and therefore sufficiently transformed so as to be patentable. But gDNA wouldn’t be the bat - it would be a branch of the tree you broke off. Just because you isolated the branch from the tree does NOT make it patentable. That branch would be gDNA - isolated but not transformed nor created by any molecular biologist.
Sometimes the absurdity of the case (and the pain felt by those highlighted in the book) made me frustrated even though it happened a decade ago. And at other times I found myself confused about what I believed, like when Alito asks if a branch shaped by the ocean into the shape of a baseball bat disallows a patent on baseball bats just like fragmented DNA would disallow a patent on lab isolated DNA
Also:
“God can make a tree .. but man can make a baseball bat”
Although stated by myriad, this supports the government’s position that gDNA isn’t patentable and cDNA is. cDNA would be the bat - manufactured by scientists, and therefore sufficiently transformed so as to be patentable. But gDNA wouldn’t be the bat - it would be a branch of the tree you broke off. Just because you isolated the branch from the tree does NOT make it patentable. That branch would be gDNA - isolated but not transformed nor created by any molecular biologist.
Sometimes the absurdity of the case (and the pain felt by those highlighted in the book) made me frustrated even though it happened a decade ago. And at other times I found myself confused about what I believed, like when Alito asks if a branch shaped by the ocean into the shape of a baseball bat disallows a patent on baseball bats just like fragmented DNA would disallow a patent on lab isolated DNA
June 23, 2022
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.
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.
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