Tuesday, November 8, 2011

More on 'owning' the genetic test

The other day I blogged about 'owning' the genetic breast cancer test. Now there is new outrage against Myriad Labs. They have developed another test, called the BART test, that can pick up further cancers and reduce risk additionally:

I completely agree with this argument. Myriad Labs is in the wrong here. But I do have a few comments:

- How the hell (pardon my language but its worthy here) did they get to 'own' the breast cancer gene? I have genes in my body - are we going to start selling them off to the highest bidder? This adds a really creepy touch to the Big Brother concept. This is the part that really gets me. I understand the basics of patent law but do not consider myself in anyway an expert. I just don't understand why they now own the gene. Maybe they own the test. But they certainly should not own a gene. Maybe this article has it slightly wrong. If they don't, we clearly need to have our laws catch up with genetic testing abilities.

- If you get the BRCA test, I think your insurance covers it. But now that this next test exists and it is a medical genetic test, shouldn't there be insurance coverage for it? Well, maybe not necessarily covered by insurance (insurance can't cover everything and this is actually for a small population but that's another discussion - perhaps tomorrow if I remember with my tiny chemobrain), but at a lower cost. $700 for a lab test that is done over and over again is a bit outrageous. From a business point of view, if your costs are that high that you can justify a $700 customer fee, you need to look at business efficiencies and cost reductions to be more competitive. Oh that's right, they own the gene so they don't need to compete.

- Why is the lab tech upselling the additional test? Are we going to start seeing sales people in the waiting rooms upselling additional tests? 'Excuse me, would you like to have a test to see if your grandchildren might have green eyes? It only takes 5 minutes.' Yeah, right.

- Genetic testing is optional and not required. Some people want it and some people don't - they simply don't want to know if they are more likely to get a specific ailment. Its a personal choice. I think the current recommendations are that women with breast cancer in their family get a BRCA test. Some women do, and some don't.

- The other thing about genetic testing is that just because there is cancer or whatever in your family doesn't mean you are going to get it. (Who was that scientist with the pea plants who looked at inherited traits that was part of a biology class decades ago?) You know what I mean. Two brown eyed parents can have blue eyed children even though it is a recessive trait. You can have a history of an ailment in your family but that doesn't mean you will get it. And a genetic abnormality can suddenly appear - you can be the mutant.

Genetics are going to tell us a lot in the future but our laws need to catch up so no one owns a gene or becomes a single source for a test at the risk of patient lives. And individuals still need to be the one to decide if they want a test or not. A technician should not become the sales person for the test. And no one should own my genes.

1 comment:

ButDoctorIHatePink said...

Did you ever read The Immortal Life of Henrietta Lacks. It's very interesting, and describes how companies come to own genes and cells. I have breast cancer and my mother had it, but I chose not to get the BRCA test because my sister said she wouldn't do anything prophylactically anyway. And, because two first degree members of her family have it, she'll be watched very closely anyway. We've already had our children (boys) so I don't think an expensive tests adds a lot of value for us. But for others, it can be vital. I tend to think those who do the R&D deserve the fruits of their labor though, but costs should be reasonable.

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