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The Genome Defense

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Member Reviews

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.

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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. 👏🏻👏🏻👏🏻

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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.]

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Incredibly readable - a nonfiction book about a complex legal case that reads like a courtroom thriller. Thank you to the publisher for early access to this title. This is perfect for anyone who enjoyed reading The Gene by Siddhartha Mukherjee.

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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.

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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.

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