Thursday, May 16, 2013

My breasts. My genes.

Angelina Jolie wrote about her decision to have a double mastectomy after learning that she carries a version of the BRCA1 gene with mutations that are significantly associated with developing breast cancer, speaking with her doctor, and considering the risks and benefits to herself, and for her family.

Es Baluard Mallorca Spain 2008 14
By ILA-boy

Many people have reacted, but I particularly like this response from Judith Soal that introduces the complexity of understanding the genetic component of diseases. We still have quite a lot to learn about the relationship between genes, environment, and disease, but we do know that some genetic mutations increase susceptibility to disease, but also that people without known genetic mutants are often affected by diseases due to environment, to novel mutations, or, by chance.  Moreover, rarely is the culprit of a disease a single gene. But, for now, we'll leave this to others.

I want to focus on something else. Something that is relevant to every person. Something that both of these articles touch on. Let me highlight them for you.

From Jolie's article:
"The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women."
From Soal's article:
"Fortunately I live in the UK, where the NHS offers free genetic screening..."
Both of these articles mention the cost of the genetic screening. In the United Kingdom, this cost is covered, while in the United States, it is quite expensive, at least for health insurance plans in place prior to the passing of the Healthcare Law. But even if covered by insurance, someone is paying a lot of money for this testing.
BRCA1 en
BRCA1 is on chromosome 17
BRCA2 is on chromosome 13
Wikimedia Commons

Because a company called Myriad (and their BRCAnalysis) owns the right to know what the DNA sequence is of your (or mine, or anyone's) BRCA1 and BRCA2 genes.

Yes, they own it. Myriad holds a patent on the sequence of those genes. This means, even if you wanted to sequence your own BRCA1 and/or BRCA2 genes, you would have to pay a fee ($3,000-$4,000 to Myriad) because Myriad owns the right to know the sequence of every human BRCA1 and BRCA2 gene. All 7.1 Billion people (yes, we all have chromosome 17 an chromosome 13, and regardless of the genetic component are all susceptible to breast cancer, as well as many other associated cancers). This patent is currently being disputed in the Supreme Court.

If it's a patent, what did they develop?
Myriad did not develop the BRCA1 or BRCA2 genes. Myriad did not create the mutations in BRCA1 or BRCA2 that are associated with breast, or other cancers. Myriad has no right to prevent anyone from knowing what the sequence of our genes are.

This patent gives Myriad ownership of information about my body that has always been a part of me.  is akin to giving them the right to know (and to tell me, or not) what color my eyes are, even though I could use a mirror to figure it out. Using the mirror (doing it myself), would violate the patent unless I paid Myriad money. It is like allowing Myrad to to charge me thousands of dollars to know what my blood type is (even though I can order a couple, super-nifty, blood-typing cards for twenty bucks ).

Sure, Myriad can offer their test (which uses technology that is no different than thousands of labs around the world use daily). But, they have no right to prevent other people, or companies, or ourselves, from conducting tests to answer the same questions. Questions about ourselves.

Myriad does not own our genes.

A friend texted me the other day:
"What do you think about gene patenting? Seems douchey to me."
I couldn't agree more.


Anonymous said...

I was thinking exactly this the other day. Well, not about this particular gene(s), but how and why are can anybody have a patent on genes... that just does not make sense. The only way I see it possible is to built one from scratch... and I mean not even similar to anything that already exist in nature...

I can not believe this test is 3000... I do PCR's daily for a small fraction of this cost.

mathbionerd said...

I know! It doesn't make any sense at all.

I agree that it gets murky if someone synthesizes a totally new gene. I can understand owning a patent on that newly synthesized gene sequence, but then, what if it becomes part of a GMO that is wildly successful, and then that synthesized gene becomes incorporated into natural populations. Should the company prevent researchers for knowing what that sequence is?

Yes, the cost is outrageous.

Nahuel said...

Well, it's called capitalism.
That's why we are so f*cked up right now in terms of technology.
As long as the greed for profit rules over the seek for human evolution and social advancements, we have to deal with this type of crap.

MOCKBA said...

Anonymous, there is a good discussion of costs at Razib's blog. These genes are unusually long, and takes about 100 PCR reactions for a basic test. And the price of sequencing tests isn't affected by patents, as shown by studies.

The British NHS vs. capitalism is an interesting case study. In the UK, the tests are harshly rationed, and they are still in low tens thousands. In the US, it's a million women tested. Also it takes months to get a test result in the UK, but only days in the US, which makes a lot of difference for the women freshly Dx'd and waiting for surgery!

Ching Chang said...

Thanks for the post, informative even to a lay person. I think this test would be a great candidate for compulsory licenses abroad.

Under certain conditions, WTO rules allow governments to issue compulsory licenses against patent holders. To my knowledge it hasn't been invoked recently, but typically, when a government can demonstrate excessive profits and/or there is an epidemic or public health emergency, it can legally break patents.