In 2006, Michael Crichton finished his last novel, the one before he passed away in 2008. The book was called Next and it took place in the present time where government and private corporations spend a lot of money on genetic research and patenting the human genome. Sound familiar?
In the backstory, Frank Burnet contracted an aggressive form of leukemia and underwent intensive treatment and four years of semiannual checkups. He later learned that the checkups were a pretext for researching the genetic basis of Frank’s unusually successful response to treatment, and that the physician’s university had sold the rights in Frank’s cells to BioGen, a biotechnology startup company. As the book opens Frank is suing the university for unauthorized misuse of his cells, but the trial judge rules that the cells were “waste” that the university could dispose of as it wished. Frank’s lawyers advise that, even if he wins an appeal, the university as a tax-funded organization can still claim the rights to the cells under the doctrine of eminent domain.
BioGen consults lawyers, who advise that under United States law they have the rights to all of Frank’s cell line and thus the right to extract replacement cells, by force if necessary, from Frank or any of his descendants.
When I read this I had chills, it was Michael Crichton’s last work after all but something felt all too familiar. The thought passed and it’s been six years since I had thought of that book, then my husband came home from one of his class lectures in BioEthics where they were discussing the case of Genae Girard vs. Myriad and the Patent Office.
When Genae Girard received a diagnosis of breast cancer in 2006, she knew she would be facing medical challenges and high expenses. But she did not expect to run into patent problems. Ms. Girard took a genetic test to see if her genes also put her at increased risk for ovarian cancer, which might require the removal of her ovaries. The test came back positive, so she wanted a second opinion from another test. But there can be no second opinion. A decision by the government more than 10 years ago allowed a single company, Myriad Genetics, to own the patent on two genes that are closely associated with increased risk for breast cancer and ovarian cancer, and on the testing that measures that risk.
On Tuesday, Ms. Girard, 39, who lives in the Austin, Tex., area, filed a lawsuit against Myriad and the Patent Office, challenging the decision to grant a patent on a gene to Myriad and companies like it. She was joined by four other cancer patients, by professional organizations of pathologists with more than 100,000 members and by several individual pathologists and genetic researchers. (written in 2009)
There was a newspaper snippet that his teacher had that showed that this case was overturned in favor of Myriad and that now it is going to the U.S. Supreme Court.
What struck me as odd was that the book and her story began during the same year and the case was one year after he passed away. Would he have guessed that his story held more truth than he realized? Perhaps not as far as the story goes, but with these laws it is entirely possible that a company could use their patents to say that they own parts of our bodies. If they own the majority of the human genome (our DNA) wouldn’t it suffice to say that they own all of our cells, or the ones that they had patented that “include DNA sequences that encode instructions for making particular proteins for regulating the way a gene is expressed, but they also encompass variants of normal genes associated with diseases.”
This very much unsettled me. I even saw the book today laying out on a table at Garden Ridge staring at me as if it were trying to say something and so I finally decided to write this. I’m sure most of you are unaware of most of this, the case of Genae Girard and also that the human genome is patented by various companies. It is fairly interesting and also incredibly frightening. When looking at the future I cannot help but see something akin to Michael Crichton’s story. I do so hope that the case that Genae Girard is bringing to the U.S. Supreme Court is strong and that she wins because if she doesn’t I think it will be more than a few breast cancer genes that we’ll be losing rights too.