$100 million dollars from a large philanthropy is about to be spent to map the individual genes of 20,000 people in order to find the genetic indicators of schizophrenia and bi-polar disorder. These disorders seem to be inherited, but apparently finding the specific genes is very hard compared to some other inherited diseases, hence their need for an extremely large sample of unprecented scope, consisting half of people with various forms of schizophrenia, and half “normal” people. The researchers claim the hope is to be able to diagnose a patient’s type of schiophrenia and better understand how to treat each case, as well as to predict a person’s risk.
They also plan to make all 20,000 individual’s genomes publicly available on the web in their entirity, which (with the exception of Craig Venter’s DNA) is also unprecented, and alarming.
Though these people will probably all be anonymous, and will surely consent, I’m not sure it is a good idea to be mapping so many people’s DNA and making it public, or, for that matter, doing these sorts of genetic determinism experiments to begin with.
Also, the article doesn’t mention it, but there are also scientists who believe that we should be actively pursuing germline genetic engineering, in other words, changing the genes before we pass them on to our children. There is very little protecting a person’s right to pass on their own genes to their children without subjecting them to a state sponsored eugenic enhancement process, other than marriage and every person’s right to marry. With that right being eroded by moonbats who claim that marriage no longer guarantees a right to conceive together with the couple’s own gametes, this sort of screening needs much more careful forethought and consideration. Or at least, if we let them go ahead with it their eugenic deterimism experiments, we need to make sure we protect marriage.
Ignore the ads and read the story I read on the front page, above the story about the moonbats.
raj says
…trying to determine DNA markers for diseases, well, maybe good.
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Trying to engineer the genome of a particular individual, definitely bad.
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As to the first, after a genetic pre-disposition for a particular condition has been determined, a reason for the condition for a particular zygote might be determined and the condition might be ameliorated.
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The second is more subtle. Evolution (the theory, not the fact) demands genetic variation before natural selection can occur. Unless we allow genetic variation to occur “naturally,” natural selection will not occur.
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As far as I can tell, making peoples’ DNA public over the Internet makes it available to researchers. I wouldn’t have an objection to that.
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And, as far as I can tell, this has absolutely nothing to do with marriage. If you were to get off that horse, you might have a bit of credibility among some of use who actually know something about science.
john-howard says
I’m not worried about researchers sharing this data, but the article states that the plan is to make the data available on the internet to the public, as if that is some great thing. I think that’s very bad, we shouldn’t make people’s DNA “public”, even if the person is not identified by name. It would be accompanied by lots of perhaps identifiable behavioral data, and people can be identified by other genes in the DNA. If a research group wants access, they should have to be approved and agree to keep the data private. If it is only a matter of the newspaper using the wrong term, saying “making it public” when they meant “sharing it with other researchers”, then they should use the right term so that people don’t get the idea that DNA is public. No one’s DNA should be public, it’s private.
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Obviously, the research has nothing to do with marriage, but once they start applying the findings and people start making procreative decisions based on it, it will become an issue. And if people’s DNA is made available to public authorities, as their sex, age, and parentage is, that could affect their right to conceive with someone. Skinner v Oklahoma said there we all have a basic civil right to use our own gametes to “marry and procreate”, but that case and that right are being eroded by neo “liberal eugenics” that forces people to make eugenic choices. There are lots of people on this site who think that marriages don’t all have a right to conceive children together, and if they have their way and are not corrected with a clear legal decision or legislation, then their incredible beliefs could become semi-true, and marriages could – in practice – lose their right to conceive together.
laurel says
but you never give one concrete reason why. “unprecedented” does not necessarily mean bad. antibiotics were unprecedented, for example. so, please state your concrete reasons. i’ll be watching to see if you can manage without straying into your green eggs ‘n ham schtick.
john-howard says
And people’s DNA is part of our medical records. Our DNA sequence should be our own private business. You surely agree with that, right? You must just be wondering why I object to these anonymous 20,000 records being “made public”. Well, for one thing, it makes people think that it’s totally normal and expected to post people’s genetic sequences, as if it were a civic duty or something. For another, they are real people and it wouldn’t be that hard to figure out who some of them are, as the sequences must come with associated behaviors and diagnosis too, and could be sortable by sex, hair color, . So the anonymity is not very strong. If they want to share anonymous medical records, they should do it through respectful research channels, not by posting it publicly on the web.
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Even if it is kept private, it’s $100 million to do something that is not particularly necessary, or particularly wise. Maybe it wouldn’t be so great to predict everyone’s genetic propensity for this or that illness.
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It ties into conception rights because public relationships can be prohibited from marrying. But because our medical records are private, we can all have an equal right to marry and procreate. But if we make our DNA “public” then the state could begin to prohibit two carriers of certain genes from conceiving, even if they are married.
laurel says
I am disappointed. You really can’t spend even one post not talking about green eggs & ham, so i know anything further I say on the supposedly true topic of your diary will just flow in one eye and out the…someting. What a pity.
john-howard says
Sorry, I came up with two good reasons, but that third reason is huge, and it’s been one of my points all along, so I couldn’t leave it out. I didn’t mention eggs or sperm.
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Another reason I thought of is that once information is released out into the internet, it can’t just be pulled back again, even if legal action is taken. The subjects might regret having made their dna public ten years from now, if that is truly what they are doing. When reputable research labs share samples for studies, they have procedures to protect privacy and rules about how to use and store the data that these subjects will surely value having.
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What is the idea behind making it “public”? That the next door neighbor is going to discover some overlooked comet in the data? Is that really likely?