Thursday, June 26, 2008

Ethical Facelifts

Bit of a change in style. Now accepting applications for cool logos.

It's been a long time since I saw so many articles about scientific ethics in the news in so short a period. Well, since Vioxx, anyways. Not long ago, I alluded to the Swiss as having gone "bugf#$k nuts," by which I meant totally crazy. Since 2004, they have enforced a Gene Technology Law, which stipulates that in Swiss experiments, the dignity of [living things] needs to be considered in research. They are in the press these days because they have upheld the decision as it applies to plants, which of course made everyone go "wuh?"

The first effect of this law is to make science even less feasible economically - a Swiss study involving maternal separation in monkeys is going to court now to find out whether it can proceed or not. Making your scientists go to court is only diverting more funds from the state to fight these legal battles, making science that much more expensive to carry out. This is not a good thing for a country's biotech industry, or their "intellectual economy".

Another thing, as pointed out in this Nature editorial, is that dignity is a slippery concept. They cite an American governmental inquiry on dignity in bioethics, which the boys at Nature seem to think is self-contradictory. And they're probably right, but I don't have the time nor the inclination to go wallowing through a 577-page .pdf file written by various and sundry higly respected thinkers to find out that dignity is tough to talk about meaningfully, because it's tough to define, but nonetheless vitally important.

Don't get me wrong - I'm not getting down on dignity. I'm just saying if you ask a dozen people what it is, you'll get 12 different answers, and that this translates to an important point about how advances in the sciences are going to have to force progress in humanities. Development in science is outstripping the development of laws and ethics to control them.

As a direct result of this, you get what we have in California right now, which I also alluded to in an earlier post. California recently issued cease-and-desist letters to various companies that engage in direct-to-consumer genetic testing. Several companies now will sequence your genome (for a small fee) and compare it to known bits of code that predispose you to heart disease, Alzheimer's, whatever. California's decision to require a physician's consent for the tests seems to be an oddly reactionary biotech policy from a state that is known for creating $100 million funds for stem cell research under the nose of the Bush administration.

The legality of this question, assuming a class-action suit against the State by the companies involved, will hinge upon the legislature in this article. Essentially, the decision should be predicated on whether these tests are diagnostic or not. As the lawyers for the defense know, they are not. Diagnostic tools are predictive - a positive result indicates a medical condition and informs the appropriate treatment. What these companies do is associational - they can look at your bits of DNA code and then say "ooh, people with that bit have a 6-fold increased risk of getting the hoobajabbies after their 65th birthday! You'd better start taking antioxidants!" Which is why I agreed with the CEO of one of these companies in my last post when he implied that their industry was entertainment more than anything else.

I think that ethics would be better served by allowing the tests, and providing an option for subjects to make their anonymous genomes publicly available for research purposes. And instead of requiring a doctor's approval, send a Ph.D. to explain what the test results really mean - three studies found that people with this polymorphism have an increased risk of the hoobajabbies, but this more recent study found no association, and the effect size in the meta-analysis is weak; plus there's this editorial in Archives that just came out saying the stats in all these studies are bullcrap anyways. So it's inconclusive.

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