Well, we're still here, so the LHC hasn't destroyed the universe... yet. Good news.
Recently there was some not so good news for people who deposited their genetic information (not that way!) into public databases - there is some concern that this information can be tracked back to individuals. This doesn't seem like such a big deal, and it won't be until one day we apply for life insurance and they tell us, "Well, we found your genome online and it looks like you have a 10-fold elevation in your risk for contracting the hoobajabbies within the next 11.6 years, so we're going to need to increase your premiums." Seems a little science-fiction and Big Brother, until you find out that 23andMe (who I've talked about before) can now "sequence your genome" for the same price as a Playstation 3.
Now, I say sequence in quotation marks because they don't really sequence the whole thing, which so far only Craig Venter can really do, at the cost of tens of millions of US dollars. Before the currency started plummeting. Only two people have a data file containing their whole genomes at this point, and they are Dr. Venter and James Watson, and even what they have is a "best guess" from a computer-guided reassembly of their whole genomes from sequenced fragments.
The As, Cs, Ts, and Gs that make up your DNA are known as nucleotides, and there known places where there are differences in the population. These are known as single nucleotide polymorphisms (SNPs), and we have discovered thousands of them. Some of them are even associated with certain (real) diseases, although these studies represent correlations rather than causes. Still, insurance companies calculate premiums based on actuarial tables - statistical correlations - and I don't want them exploiting a $400 sequencing service to make a couple bucks by nailing people who happen to be born with a couple bad nucleotides.
I am seriously impressed that our legislators have already been thinking about this, but clicking on the government link for information about genetic discrimination legislation gets 404'd, which leads me to be believe that it's not exactly a hot issue these days. Like puffin poop.
Showing posts with label hoobajabbies. Show all posts
Showing posts with label hoobajabbies. Show all posts
Tuesday, September 9, 2008
Thursday, June 26, 2008
Ethical Facelifts
Bit of a change in style. Now accepting applications for cool logos.
It's been a long time since I saw so many articles about scientific ethics in the news in so short a period. Well, since Vioxx, anyways. Not long ago, I alluded to the Swiss as having gone "bugf#$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 $100 million funds for stem cell research under the nose of the Bush administration.
The legality of this question, assuming a class-action suit against the State by the companies involved, will hinge upon the legislature in this article. Essentially, the decision should be predicated on whether these tests are diagnostic or not. As the lawyers for the defense know, they are not. Diagnostic tools are predictive - a positive result indicates a medical condition and informs the appropriate treatment. What these companies do is associational - they can look at your bits of DNA code and then say "ooh, people with that bit have a 6-fold increased risk of getting the hoobajabbies after their 65th birthday! You'd better start taking antioxidants!" Which is why I agreed with the CEO of one of these companies in my last post when he implied that their industry was entertainment more than anything else.
I think that ethics would be better served by allowing the tests, and providing an option for subjects to make their anonymous genomes publicly available for research purposes. And instead of requiring a doctor's approval, send a Ph.D. to explain what the test results really mean - three studies found that people with this polymorphism have an increased risk of the hoobajabbies, but this more recent study found no association, and the effect size in the meta-analysis is weak; plus there's this editorial in Archives that just came out saying the stats in all these studies are bullcrap anyways. So it's inconclusive.
It's been a long time since I saw so many articles about scientific ethics in the news in so short a period. Well, since Vioxx, anyways. Not long ago, I alluded to the Swiss as having gone "bugf#$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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