And how do you suppose those researchers would pay for the data in the first place? Most likely, via a government grant. Supporting pure research is much too large a scope to be practically done via the private sector, and it benefits society as a whole, so it’s a perfect match for governmental support. That’s why we have the NSF, and NIH, and NASA, and so on.
And the government could spend that $ 1.5t on feeding and housing the homeless or on building a space station, or on troops for Afghanistan. The Government isn’t an unlimited font of money designed to simply put companies out of business for some nebulous greater good.
People could willingly donate their sequence to some kind of open-source database if they so chose.
Basically what you are arguing here is that the government should have complete and total control of industry. Because people will say, ‘If the genome why not…’ This is a complete and total abuse of government resources it is not the role of the government to advance every whiz bang technology that could potentially advance the human condition, particularly not at the expense of private industry.
I don’t want to hijack your thread. For the system you propose, I like that it gives people the right to opt out from genetic testing. I think the “why not” of testing for incurable genetic diseases is a very personal decision. It’s an imperfect analogy, but a friend of mine who is an oncologist has explained to me that some patients who receive a cancer diagnosis do not want to know anything about their prognosis. I can imagine that some people would not want to know that they have a small probability of getting a terrible incurable disease. I think it should be their right to refuse testing if that’s what they want.
HIV testing makes sense, for the reasons you mention - it allows a carrier to protect others from harm, and treatment is available if patients want it.
Name one private company which is accomplishing the same goals that this government program would accomplish.
Sure if you tell me what part of the budget you’d hack to pieces to get the $ 1.5 trillion to pay for the proposal.
What, really, does sequencing my genome give me that a detailed family history doesn’t? I could see a situation where someone who was adopted and knows nothing of their family’s medical history might find this very useful, but I know my family’s history already. We do have a hereditary heart problem, but you either have it or you don’t, and it’s easily detectable at a young age with a blood test, no need for gene testing. Rinse and repeat for many diseases. I can see situations where gene sequencing is truly useful, but is it really something applicable to hundreds of millions of people?
Yes. Identifying disorders based on their symptoms is easy. Showing they have a hereditary component is harder, but still pretty easy. Finding the molecular underpinnings of them is really, really hard. You are looking for a needle in a haystack. The human genome contains 3 billion base pairs and 23,000 coding genes with various splice isoforms (this means that each gene can make multiple protein products). Complicating the problem even further is the fact that disorders are frequently caused by a concordance of genetic factors–multiple genes might be altered. Or maybe they’re not altered at all, they just have slight variations in regulatory regions.
Now, imagine you’re a researcher. You are presented with one or two patients that have a specific heart problem that is heritable. How will you find the handful of nucleotide changes that cause the disease, amongst the 3 billion possibilities? Also, keep in mind that up until recently, whole genome sequencing was not really an option. Furthermore, EVERYONE has naturally occurring benign sequence variations–they are what make us unique. How do you determine which ones are relevant to study?
The progress we’ve made in identifying genetic disorders given these circumstances is downright miraculous.
It would certainly teach us a lot about genetics just in general. There would probably be much that you can learn that you didn’t know about. What about all those mild pathologies that people just live with that go undiagnosed? You might be able to identify much of that.
<liberal>Defense?</liberal>
In all seriousness though, there’s been a number of good proposals here–a more limited opt-in program to start, for example, or some measure of corporate sponsorship. I do think that some federal nudge would be necessary to kick-start the whole initiative, however. The original Human Genome Project was such a success because it involved the contributions of both public and private entities. I don’t think it would have been done as fast or as well if both parties weren’t involved.
That’s a pretty hefty budget you’d take out of defense. So in addition to ruining the shareholdings of private corporations that are sequencing the genome for a profit you’d also put tens and possibly hundreds of thousands of military support personnel out of work. Would you provide for some kind of unemployment benefits for them? Which states economies would you gut in order to shut bases down? You could destroy the New Mexico economy by shutting down several bases there.
I really don’t see why it needs to be done. People are working on it in the private sector and much of the research is being done by universities. I am sure there is public money going into grants for these programs. A friend of our family is a researcher at the University of Utah and he’s done quite a bit of work on this from his private sector perch.
Dear me, I was only joking! Sort of. Mostly.
Universities largely do their research on the public’s dime anyway, so that aspect of your reply is moot IMO. And are they working on it in the private sector? Really? On this scale? Are they providing the data to the people who need it but have difficulty affording it? No, they’re currently providing it to themselves (e.g. Craig Ventner, James Watson, Stephen Quake).
Sometimes government can do what the private sector will not. Let’s consider the Apollo program for a moment. Do you think in all honesty that this nation would have put a man on the moon in 1969 if the government had kept out of it? I suspect not–where is the profit motive in doing so? And yet, that was a huge national accomplishment that indisputably drove innovation and technological advancement. Hell, I don’t think private companies can even put a man into space now.
I guess where we disagree is that I don’t think the Government can do this either. We just had a major stimulus that we probably cannot afford, state governments everywhere are going bankrupt and the Federal government likely will too. I don’t know where you get your optimism that the government could afford 1.5t for such a program.
It is disputable, and has been disputed frequently over the past 40 years. If you just mean the trivial “Tang was invented for the space program” then I guess it’s true. If you use any more substantial standard for driving innovation it is very, very doubtful if the moon landings provided any more technological advancement than would have occurred without the program. The only difference would have been the fields of advancement. There was already plenty of private sector interest ion satellite technology in 1960 for example.
So yeah, the claim is disputable in the case of the moon missions and it’s disputable here. Governments are generally not good at deciding what is worth investing in and what is a good direction to push research. The moon landing are probably the best example of this, since after 40 years they have given us almost nothing of practical value. IMO the money would have been far better spent on satellite or unmanned lander technology.
To apply that to the current suggestion, if the government decides to do this then we will sequence a large population with no discrimination. However if the private sector doe sit then presumably they will concentrate on sequencing populations of interest, where the chances of getting a result (in terms of cure or correlation) are higher. IOW better to test (and pay to test if needed) all the female members of s single family than to have only half the members come in voluntarily and test half the males as well.
So I’m not sure a government program is the best way to go. I’m not opposed to the proposal as such, but I’m skeptical that massive government spending will be an efficient way to do this.
As the OP suggested, there’s plenty of room to get the money out of the Department of War’s budget, considering that we were apparently able to afford two unnecessary wars.
OK, now your turn. Name a company that’s doing what this project would do.
The heart disease problem in my family is an autosomal dominant disorder in a single gene. This was recognized in 1938 by a Dr. C. Muller. There are several variants of the defective gene, but knowing which one you have (which is entirely possible these days) has absolutely no effect on treatment as of now.
It’s pretty easy to figure who’s “relevant to study” - it’s the people with the cholesterol/LDL figures through the roof. Again, you don’t need to know gene sequencing to figure this out. Could gene sequencing potentially have use in the future in this disorder? Maybe. Maybe it won’t make a damn bit of difference. As I said, though, finding this people in the population is not rocket science. It’s even possible to determine if a person has one or two copies of the bad gene simply by conducting a blood test and a quick exam. In fact, because my mother had xanthomas, an informed person could identify her visually as someone very likely with this condition even without a blood test.
Again - while gene sequencing might be useful for some conditions I question whether it will have practical results in all. When my nieces and nephews have been tested for this condition genes weren’t done, they simply had a blood test. What use to the affected members of my family would gene sequencing be?
Quite a few genetic disorders were discovered even before Watson and Crick described the double helix. I don’t object to pure research, but I do object to the idea that completely sequencing everyone’s genome is a good use of resources.
As there is no department of war, I am afraid you’re going to have to be more specific. I’ll assume you meant the Department of Defense, so tell me which states will you bankrupt by closing bases? You can close foreign bases too, but I don’t think you can get $ 1.5t just by closing foreign ones.
You know, the department in charge of invading countries? That department of war? I can’t be blamed if some folks think that department’s job is defense.
But the Iraq and Afghanistan wars have cost trillions of dollars. If, the next time we’re tempted to do something like that, we instead choose not to, then there’s the money we need for the genome.
And you still haven’t answered your question.
23andme does it for $399 and you can participate in “groundbreaking” research.
Not really. They do a limited characterization of several SNP (single nucleotide polymorphisms) rather than a complete sequencing. This can tell you quite a bit about a few things of general interest to people getting the sequencing, but its of entirely insufficient “resolution” to be very useful for “groundbreaking” research.
The results from a similar study to that proposed by the OP carried out in Iceland which examined a large number of SNP’s for a few thousand Icelanders. The results were pretty underwhelming in terms of contributing to our understanding of disease. In spite of the “genetic revolution” taking place in medicine, it may just be that a lot of conditions cannot be summed up in a cute little package of single-allele Mendelian genetics. If it turns out that schizophrenia is mediated by the interaction of 14 different gene loci, are we going to provide prophylaxis to the at-risk population with a 14-drug cocktail which interacts gently with these 14 separate protein products to keep the recipe for the neurochemical soup straight in this populations heads?
Also, please explain to my the scientific merit of doing this sequencing for the entire population as opposed to a large sample of it? Will we gain any enhanced understanding from a sample of 300 million as opposed to 150 million subjects? Unlikely. We could probably reduce the sample size by orders of magnitude again and still have similarly valid and interesting results.
If you have a likelyhood for Alzheimers, would you want to know? ? There are a lot of family tendencies you might not want to know, like insanity. But if the info was somewhere, would you feel confident insurance companies would not get a hold of it. Leave me out of it.