April is the Health Activist Writers’ Month Challenge to write 30 health related posts in 30 days. Today’s post reflects my taking on this challenge of not only posting 30 health-related items in 30 days but to incorporate some activism into my blog.
Last spring, like many younger than average breast cancer patients, I had my blood drawn and sent to Myriad Laboratories for genetic testing. The purpose of the test was to determine whether my BRCA 1 or BRCA 2 genes were mutated. As most of you know, BRCA 1 and 2 protect against breast and ovarian cancer, so if one or more of them are mutated, you lose some of that protection. One of them protects men against prostate cancer. My understanding is that although most breast cancer is not due to BRCA mutations and that only an estimated 5% of breast cancers are believed to be genetic, the risk of breast cancer for women with 1 or more of the mutations is 90% and the risk of ovarian cancer is 40%. Furthermore, BRCA 1 and 2 mutations are highly heritable.
Fortunately, I did not have either genetic mutation and further, there is a relatively low incidence of breast cancer in my extended family history. But the stakes for individuals with these mutations is high. Women who test positively for the mutation/s are often advised to 1) get a bilateral mastectomy or get annual MRI’s and diagnostic mammograms and 2) have their ovaries removed. (The reasoning being that ovarian cancer is difficult to detect until it is advanced.) These recommendations are also often given to women who test positive for the genes but who do not have breast cancer.
BRCA testing is very expensive and is not covered by all insurance companies. Further, many people in this country do not have adequate health insurance. My wonderful genetics counselor told me that there is only one lab in the country, Myriad Labs, that does this testing. I thought this was curious but didn’t give it much thought at the time because I was busy freaking out about having just been told that I had breast cancer.
The reason that Myriad is the only laboratory that performs the tests is because the U.S. Patent Office granted them a patent on the BRCA 1 and BRCA 2 genes! So a company has patented human genes! They are the only lab that is allowed to do the test. I’m no patent attorney, but this is more than a little alarming to me. What does it mean to patent a gene? A gene is an actual physical thing. If old college and grad school memories are correct, genes are just particular sequences of amino acids that have a particular location on a chromosome. (Okay, I just looked it up and it is the sequence of nucleotides, not amino acids, and I’m not going to start over because my brain just exploded.) I thought patents deal with intellectual property. What is the intellectual property at stake here? Do they own the right to examine and glean information from these particular genes? I’m confused.
So whose DNA is it, anyway? This question, in respect to the BRCA 1 and 2 tests, is being examined by the U.S. Supreme Court starting on April 15th. I for one, will be following this decision closely.
I first learned about this issue through my involvement with the Empowered Doctor website. Their article can be found here. Another good article can be found on the New York Times Book Review website.
Hey Myriad, if Watson and Crick could share credit for their independent discoveries of DNA, why can’t you share with other labs? (Image from Wikipedia)
My Eyes Are Up Here 
Looking forward to reading your blogs each day for 30 days.. I am quite sure that by the end I will have a new perspective on Breast Cancer.. Good Luck.. 🙂
Helen, I am going to try to keep it up and as is my nature these days, to follow the spirit rather than the letter of the law.
I heard about this a few years ago. 60 minutes or a similar show had a segment on them. It’s very disturbing to think a company can patent gene analysis/therapy.
Robin, it’s not even patenting a gene therapy or analysis. That would actually make more sense because those things would be intellectual products and patent law protects intellectual property. From what I understand, there is nothing new about the analytic methods. They’ve patented the actual genes themselves!
Thanks for summarizing these issues so concisely!!
Thanks, JoAnn. I don’t often get complimented on concise writing plus I just added a few sentences to the post! Heh.
You have a talent for explanations that even I can understand (almost). Great blog.
Thanks, Mom. Being able to explain stuff is good for my business!
Right. I thought it was just for me.
eyes, yes, yess for
how accurate are the stats if they are cherry picking the subjects (which they are, I was rejected when i volunteered form the BRCA 3 & 4 research. The Brca results are not real numbers since they don’t test those who cannot afford the test and they cherry pick their test subjects for 3&4. It is no secret I question the usefulness of BRCA tests
When you say “cherry picked the subjects” what criteria were they using to exclude participants? Nearly all researchers have inclusion criteria for research participants. You are right in that the criteria could be used to bias study results. However, in my experience as an academic researcher, the purpose of using inclusion criteria is make interpreting the research results clearer and therefore more accurately. There is disagreement regarding where to draw the line because the more you exclude, the less your study sample will reflect the general population. So that is an ongoing argument and folks on all sides of the argument can have nothing but good intentions.
My niece participated in a study of BRCA 1 and 2 when she was working on breast cancer research at the Fred Hutchinson Cancer Institute, which is part of the University of Washington. Myriad does not have sole rights to researching BRCA 1 and 2. Anyway, you raise an important question. I will ask my niece if she remembers the inclusion criteria for the particular study on which she worked.