Tuesday, June 23, 2009

I Don't Own My Genes? What?

I had hoped, in my heart of hearts, that people working in the forefront of medical technology would be more mature and altruistic than to do something as fucking stupid as patent a gene. The particular genes I'm so pissed off about are two which, when mutated, give a 60-90% chance of the person developing breast cancer. All up it seems that about 20% of our genes are patented already. What the fuck is with that?

In it's normal state, BRCA (1 and 2) is a cancer-suppressant. As mentioned a particular mutation can cause the opposite. There has been a test developed to see whether an individual carries this mutated gene or not. To me, this raises all sorts of moral quandaries but we'll get to them later. For now money is the target.

The patent for this gene is held by Myriad Genetics, preventing other groups from testing for the gene, studying, working with or even looking at it. In other words it's an intellectual monopoly with thousands of lives in the balance. They argued that because they extracted and isolated the gene it becomes liable to patent, rather than being called a discovery. Did the Curies patent radioactivity? Rutherford, the atom? Cook, Australia? I don't fucking think so. Not only were they not that outright stupid, or selfish, the patent office at the time would have hardly let such claims stay.

The gene itself occurs naturally, and to the best of my knowledge the methods of isolation are not some wonderful new invention either. So, in short, it's money grubbing. Both Myriad Genetics itself and the patent office seem to be scrabbling for cash and thinking through their pockets rather than through the medical profession. This kind of thing only hurts medicine, and the people who would otherwise benefit from the technology.

Of course the ability to identify high-risk genes like BRCA 1 and 2 raises issues of its own. Should having it affect health insurance? Should the availability of such tests be regulated? Should individuals be obliged to divulge the information to employers? Do people want to know? How should those with the gene conduct their lifestyles with that knowledge?

The health insurance question is, to me, a no-brainer. Such things are a shared rish within the community and as such one individual's susceptibility is cushioned by the people around them. My god, what a horribly communist idea! Yes, insurance companies are out to maximise their profits. This is where public health comes into play as a base-standard that should be upheld rather than the low class alternative. Unfortunate that the governing bodies run like corporations in the first place save the relative respect of shareholders.

Testing for this gene should be entirely up to the individual. Some will want it so they can know and act accordingly, others prefer ignorance. That's their call. If they do know then it's their business and right to divulge at choice. It's not something that employers need to make special workplace provision for, though psychological stress could be an issue. No doubt much of the resources in testing centres will go towards counselling and the like. If people wish to know let them.

In a similar fashion the actions of those who do know are up to them. One woman who had the test come back positive had her ovaries, fallopian tubes and breasts removed as a precautionary measure. Other options include stringent, regular checks such as screening mammograms. Or there's the option of ignoring it all together. More issues come into play with the idea of offspring crops up. I think that unless society is prepared to limit any number of other genetic distinctions in regards to giving birth (Let's not, okay?) they should leave this well enough alone, to the discretion of the parents. The offspring should be given the information for their health's sake, but what they do with that knowledge is up to them.

Unfortunately I doubt my ideas will have any impact upon government or corporations. I'm just a crazy teen after all.

The whole deal with medical corporations patenting genes is one which needs addressing. It's greed. It's harmful and disgusting. These patents represent but a part of the whole festering mess. The scientists and many individuals may have altruistic intentions but someone on the policy bench clearly doesn't.



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