Poking and prodding
Jan. 26th, 2009 04:26 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
trixtahPart of the reason last week was so speshul for me was that I went to get my lovely lady parts checked up by the doctor. Possibly not the best time to do it, but it was a bit overdue, and I specifically wanted to get screened for HPV, and get the vaccine if I'm negative (the vaccine only covers a few HPV strains, but vaccinating against some of the more virulent kind is better than nothing, and it would be really annoying to develop cervical cancer later on if I was clear up to now). The doc reckons my risk is low - his method of asking was, "Has there ever been PEEN in here?", heh, and while there has, there hasn't been much - but it's good to know one way or the other.
The other thing I wanted to find out about was getting a genetic test for the two genes that have been associated with increased risk of breast cancer (BRCA1 and BRCA2). My mother's sister has had breast cancer twice, when she was under 50, and my grandmother died of cancer (I don't know where it started, but she was apparently riddled with it when she died). And, of course, I don't know anything about my paternal side. This puts me in either a "moderately increased" or "high risk" category. I need to find out what kind of cancer my grandmother died of.
The doctor would have been delighted to refer me for it, but it would cost up to $3000. Fucking jesus christ hell. He says that while most genetic testing comes in at less than $200, the BRCA test has not reduced in price since it was first developed. I bumped into![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
saluqi at lunchtime afterwards and grizzled about this fact, and she observed that it's probably due to the procedure still being patented. Of course, and if I hadn't been so discombulated by the morning's events, I might have twigged myself.
Now, on doing some research, it turns out the licencee of the BRCA tests (licensed from Myriad Technologies in the US) in Australia and NZ, GTG Technologies, was planning to assert its patent rights, but backed down because of the uproar that took place over it. Prices still haven't dropped, though. And this epitomises what is fucked up about the patent system. I certainly understand granting a patent for developing a new genetic assay method (although I think 20 years is excessive - 10 would be more than enough). What I strongly disagree with is patenting a diagnostic system based on a specific gene (or set of genes). They didn't invent the fucking genes, and any genetic researcher, on knowing the association, would be able to test for exactly the same thing. It's like patenting a business method, or thought process, neither of which are legally patentable in many jurisdictions. Or software patents, but we won't get into that one (because I naturally disagree with such things - should I patent every regular expression I write to filter a log?) What's even more galling is that in Europe, the patent for the BRCA1 test was revoked years ago by the EU Patent Office.
So, what does this all mean for me? If I was an Ashkenazi Jew, there would be no question of my running into the genetic testing clinic and demanding a test. Of course, I don't know what half my family background is. The other thing is that 8% of women will develop breast cancer in their lifetimes, but only 0.4% of women will develop a breast cancer associated with either of the BRCA genes (I don't know how much that number will change as more women get genetically tested - I don't even know if it's routine these days for any women with breast cancer). So what I'll do is find out from my mother what kind of cancer my grandmother died of, and ask my aunt whether she was ever genetically tested after developing breast cancer in both breasts. And maybe during the next few years, the price of the test will reduce.
If I did have such a test, and it was found to be postive for either of the mutated genes, I think I'd have prophylactic surgery. I initally thought that such a measure was pretty extreme, but I'm not exactly attached to my breasts (although I feel fonder of them than I used to), and better to get rid of most of them before trouble arises. Well, we'll see - I'm not exactly looking forward to either of those conversations with my mother or my auntie.
The other thing I wanted to find out about was getting a genetic test for the two genes that have been associated with increased risk of breast cancer (BRCA1 and BRCA2). My mother's sister has had breast cancer twice, when she was under 50, and my grandmother died of cancer (I don't know where it started, but she was apparently riddled with it when she died). And, of course, I don't know anything about my paternal side. This puts me in either a "moderately increased" or "high risk" category. I need to find out what kind of cancer my grandmother died of.
The doctor would have been delighted to refer me for it, but it would cost up to $3000. Fucking jesus christ hell. He says that while most genetic testing comes in at less than $200, the BRCA test has not reduced in price since it was first developed. I bumped into
saluqi at lunchtime afterwards and grizzled about this fact, and she observed that it's probably due to the procedure still being patented. Of course, and if I hadn't been so discombulated by the morning's events, I might have twigged myself.Now, on doing some research, it turns out the licencee of the BRCA tests (licensed from Myriad Technologies in the US) in Australia and NZ, GTG Technologies, was planning to assert its patent rights, but backed down because of the uproar that took place over it. Prices still haven't dropped, though. And this epitomises what is fucked up about the patent system. I certainly understand granting a patent for developing a new genetic assay method (although I think 20 years is excessive - 10 would be more than enough). What I strongly disagree with is patenting a diagnostic system based on a specific gene (or set of genes). They didn't invent the fucking genes, and any genetic researcher, on knowing the association, would be able to test for exactly the same thing. It's like patenting a business method, or thought process, neither of which are legally patentable in many jurisdictions. Or software patents, but we won't get into that one (because I naturally disagree with such things - should I patent every regular expression I write to filter a log?) What's even more galling is that in Europe, the patent for the BRCA1 test was revoked years ago by the EU Patent Office.
So, what does this all mean for me? If I was an Ashkenazi Jew, there would be no question of my running into the genetic testing clinic and demanding a test. Of course, I don't know what half my family background is. The other thing is that 8% of women will develop breast cancer in their lifetimes, but only 0.4% of women will develop a breast cancer associated with either of the BRCA genes (I don't know how much that number will change as more women get genetically tested - I don't even know if it's routine these days for any women with breast cancer). So what I'll do is find out from my mother what kind of cancer my grandmother died of, and ask my aunt whether she was ever genetically tested after developing breast cancer in both breasts. And maybe during the next few years, the price of the test will reduce.
If I did have such a test, and it was found to be postive for either of the mutated genes, I think I'd have prophylactic surgery. I initally thought that such a measure was pretty extreme, but I'm not exactly attached to my breasts (although I feel fonder of them than I used to), and better to get rid of most of them before trouble arises. Well, we'll see - I'm not exactly looking forward to either of those conversations with my mother or my auntie.
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Date: 2009-01-27 08:34 am (UTC)