I love a good turn of narrative non-fiction. Back in the early years of my PhD—which was in genetics—the topic of gene ownership and gene patents was a huge deal. If you were working in the field, there was no way you could have avoided getting dragged into the discussion; whether you were hearing about it from a medical perspective, an agricultural perspective or a ‘shit, I was broke doing my degree all those years ago so you’ll never guess what I did*’ perspective, you knew someone—or several someone’s—who’d tangled with it.
This is what drew me so much to Jorge L. Contreras’ The Genome Defense: Inside the Epic Legal Battle to Determine Who Owns Your DNA, because the case it deals with was one of the most well known and reported case of them all: Association for Molecular Pathology v. Myriad Genetics, Inc. (AMP vs Myriad.)
Or, to the general public: That breast cancer gene case.
The exact targets of the case were the BRCA genes. The products of these genes are involved in the process of DNA repair; copies of these genes that give rise to products with impaired function give carriers a considerably higher rate of breast, ovarian, and prostate cancers. Myriad Genetics isolated the relevant genes back in the 1990’s and then patented the genes. They then went on to develop tests that could help determine if women were at high risk for breast cancer. But this quickly became a monopoly, and Myriad Genetics enforced their intellectually property rights forcefully.
Digging into this case requires both a strong knowledge of genetics and an even stronger backing in law. I think I have the former sorted, but can’t say the same for the second. Especially since this is an American case, so most of what little knowledge I have is a touch out of place. Jorge Contreras is a Professor of Law at the University of Utah, and thankfully he does know how to make the legal ins-and-outs understandable for laypeople such as myself. This is no mean feat—patents are tricky by design, it seems! He also does a wonderful job of explaining the motivation and the impacts of each of the parties involved, which is essential for understanding how this case—above others—gained such a high media profile.
Contreras is also fantastic at sewing together a narrative in a non fiction setting, especially when he sets the stage. The gene patent issue was first brought to the attention of the American Civil Liberties Union (ACLU) by one of their interns, Tania Simoncelli. She had mentioned the concept gene patenting to Chris Hansen, a veteran ACLU litigator, whose initial reaction was just disbelief that such a thing existed. But soon his feelings of incredulity were replaced with push of “Who can we sue?”, and the wheels were in motion.
As I mentioned above, I’m thankful Contreras has a good background in both biology and the law, because if one thing made itself clear time and time again, this was as rare occurrence. Sometimes we would be introduced to people like Herman Yue, who not only was interning for a district judge at the time, but had a PhD in biology, which made him one of the rare sounds who understood the broad scope of the case. But more often or not we would run into people who had knowledge in one area, and huge gaps in the other. Some of these people—including one member of the Supreme Court—were also not really open to learn.
Which was excruciating to read about!
One of the two biggest things I learnt about from this book was exactly how this case ended up all over the media. Because patent law is not really seen as ’sexy.’ Part of this was the personal stories of the women who needed testing, and of those that were suffering cancer. The emotive pull is huge—most adults know someone who has been diagnosed—and the personal has a tendency of rocketing itself up in importance. Celebrity was also important: Angelina Jolie’s mother died of cancer , and she herself had recently tested positive for the BRCA1 variant that put her at risk. When the New York Times published Jolie’s personal essay on the subject, the public were suddenly very aware. Another powerful player also had their mother die of cancer: then-president Barack Obama.
The other big thing for me was something that I’m going to dub the cDNA compromise. This bamboozled the hell out of most people who decided the follow the case back in the day. It’s probably a bit too much to explain here what distinction is without getting bogged in detail—and hey, Contreras actually lays it out pretty well in the book!—but when the ruling was announced, the Supreme Court made a sort of compromise decision that made no sense to those of us who understand the biology. It didn’t even make sense at the innovative level either. (Our confusion was also compounded in part by us being Australians who mostly only had knowledge of our own system and not the US one. And to this day, this is one of the big differences between our system and theirs.)
Now, I had previously thought this was just a case of a bunch of law folks not really understanding what’s going on and trying to make arbitrary distinctions on their own steam. But that’s not correct: instead it was a deliberate attempt at compromise in order to keep the Patent Office and the NIH happy. And it still got a bit messy, because what are you going to do when folks from two different federal agencies are at loggerheads?
Most interesting for me though was a lot of the follow up questions this book raises. By the time a ruling was made in AMP vs Myriad, the patents were due to expire in a few short years anyhow, and more complex diagnostics were starting to take the place of single gene tests. And it will be very interesting to see how well the cDNA compromise hold up in the future; this compromise was made nearly 10 years ago and technology always marches on. And then on top of that, we really need to remind ourselves that the US patent system is not universal, and it could be that this disharmony between different systems could cause problems in the future.
The Genome Defense is a highly readable history of a very impactful court case. It it really gave me a lot to mentally chew on, and I would recommend it to anyone with even a tangental interest in the subjects at hand. And I’m glad it cleared up the weird compromise in the ruling for me—although I have to say I still disagree with it. That much hasn’t changed!
For CBR15Bingo, this is Bodies, Bodies; This is your DNA in your body and who owns you at the end of the day?