The scientific studies could be done on a (comparably) very small portion of the population, but for the application of the results of those studies, it’d be best if as many people as possible and willing were scanned. Suppose, for instance, that you found that a certain gene led to a disease, but one which was easily, cheaply, and successfully treatable if the treatment is started before symptoms appear. In that case, the ideal situation would be for everyone with that gene to find out about it, so they can go get the cheap, easy treatment, rather than waiting for symptoms to show up and possibly needing a more expensive or less reliable treatment.
Now, if some folks don’t want to find out if they have a risk for some conditions, that’s their business: As I stated before, I’d like to see the entire program be completely voluntary.
Just as a side note, a very similar study will be done soon - but for dogs. A guide dog facility has tissue samples and breeding records of every dog they have bred since the late 1940s. They also have very extensive health records. When the dog genome is sequenced, they will be able to start matching various disorders with the genomes. I’d think that bloodline records would be important to human data also, though that increases the privacy concerns.
Another 23andMe sale offer today…zero cost for testing, just $9/mo. for the subscription. As much as I’d like to do it out of health & ancestry curiosity, I can’t get past the potential for unauthorized access to the data and resulting possibilities of genetic discrimination
It would be great for science, but I don’t trust the gov. to not hand the info over to law enforcement, employers or health insurance companies sooner or later.
Well, one idea I’ve heard of is that theoretically you might be able to see correlations between the effects of various medical treatments and particular genes, and give people more personalized treatments. If people with Gene Combination X tend to react badly to Drug Y but react better than average to the less commonly used Drug Z, then you might want to start out with Drug Z instead of Y. Although in that case you wouldn’t necessarily have everyone’s genetic history in some central bank, it could just become standard practice for your doctor to have your genes analyzed and it would go in your private medical records.
Absolutely not. There is zero chance of keeping your genome private, as you put it.
insurance corporations want to tie that information to you, and will do whatever it takes to get it done. That puts them in the role of predators. And you in the role of prey. They, being predators, will find ways around that “anonymity” and “privacy”. Or better yet they’ll come back later and brute force you by requiring you to surrender the information as part of a contract. If you don’t surrender the genome information, you don’t get any insurance. Basic contract law.
One the one hand, the idea of a Human Genome Project for everyone in America sounds great. It’s good for the nerds. Let us have a trillion for once. I mean, if you’re going to gut NASA, give us something else!
On the OTHER hand, look at what the Social Security number has become. I envision this world in which everyone’s genome is mapped and recorded in a database, where all of your information is stored on an electronic national ID card, cash doesn’t exist anymore, all of your steps are traceable and the Amish are the only free people left.
I hear that sort of thing a lot, but it doesn’t make any sense. An oppressive government doesn’t need to know your genes to be oppressive, nor does it take fancy hi-tech gene based tracking methods to be oppressive. Nor would low-tech people like the Amish be any safer from an oppressive government that just decided to send thugs over to beat them up. Any government powerful enough to do its job is powerful enough to be oppressive, it doesn’t need futuristic gadgetry to do so.
I didn’t say a high tech government was an oppressive one. I just said it would make it easier. I mentioned the Amish because I was thinking about how much more private they were (no SSNs, no internet, etc). I didn’t say anything about government thugs beating people up.
Speaking as a Cancer researcher who is struggling to effectively analyze the several hundred genomes he has at his disposal, I’m not sure how one would even begin to make sense of a three hundred million of them.
For data analysis purposes I would think a few thousand up to perhaps ten thousand “normal” controls would suffice to measure the background genetic diversity of the population. Beyond that studies targeting specific diseases would make more sense than a blanket sequencing. If the price becomes low enough I would definitely be in favor of genetic sequencing done on all patients that are part of a clinical trial. Doing so and making it public would provide ample data for any research needs.
As far as targeted therapy goes, this can likely be done with a non-comprehensive genetic test that will be much cheaper.
Now if the price goes way down, and if our understanding of the genome goes way up then we may reach the point that routine individual genetic sequencing makes sense in the same way that cholesterol screening does today. In that case it will be more the health care market than the government that will be behind it.
Wow I think this is the first time I sided with the free market over government on this board. I may have to turn in my yellow-dog liberal card.
Ironically, since there is a fair amount of inbreeding in Amish communities, the Amish are among the groups of people for which we have the most genetic data.
