Please, do some thinking rather than repeat the "government can't do anything right" propaganda meme that you got from the Republicans.
I used to work with medical software. The Veterans Health Information Systems and Technology Architecture (VistA) http://en.wikipedia.org/wiki/VistA is one of the best systems out there, as good as or better than any commercial medical information system. And it's open source.
If there's one thing the U.S. government has done well, it's develop software. I'd be interested to know what other informed people thinkl, but that's what I've seen. (As I recall, NASA employees wrote the first dBASE-style database, which was why it was so widely adopted.)
there is a way that is cheaper and more effective.
Family history.
With the exception of (not-nonexistent; but quite rare) conditions caused by a mutation or mutations that originated with you, not earlier in the line, or a fairly small number of well developed genetic tests, most of which you aren't going to get over the counter at CVS, you'll have a better chance of learning about the likely phenotypic consequences of your genes by looking at mommy and daddy
You are correct.
I just went through a stack of articles on this so let me see if I got it right.
There are two kinds of genetic diseases.
First there are the extremely rare diseases which are caused by a single mutation, like Gaucher disease. If it was in your family, you'd almost certainly know it, or you'd at least know that you have a problem in your family, because you would have had relatives who had it. Like most of the rare diseases on that list http://www.pathway.com/more_info/full_list_of_conditions (all of which you can look up in Wikipedia) it's a pretty dramatic disease.
Second there are the more common diseases like breast cancer, colorectal cancer, coronary artery disease, diabetes, etc., which most of us will die from.
There are a few single-gene mutations that will usually result in cancer, like the BRCA1 or BRCA2 gene for breast cancer, which occur in about 1 or 2% of the population.
But most of the other genes that are associated with those diseases only confer an additional 1% (or less) risk of the disease. That's the big frustration in genetic medicine. The doctor tells you, "You've got a genetic variation that, other things being equal, gives you a 1% increased risk of getting diabetes." How is that information going to change your life in any way?
Scientists think they're doing pretty well if they discover a gene that increases the risk of a common disease by 10%. Now 10% is the *relative* risk. If 5% of the population gets a particular disease, that gene will increase the risk to 5.5%, which is not much greater. So you've found out that you have an increase in the *absolute* risk of 0.5% from that one gene. (But you don't know anything about the dozens of genes affecting that disease that they haven't discovered yet.)
One of the problems with BRCA1 and BRCA2 is that those genes were patented by Myriad Genetics, which was charging $3,000 or more to test for that one gene. Many of the most important genes were patented, and one of the disadvantages of that was that it made it impossible to put together a cheap screen of all the common disease-associated mutations. Myriad just lost a patent lawsuit, and if that decision is upheld, we will be able to get genetic screens with every important known mutation. http://www.aclu.org/free-speech/brca-genes-and-patents But I can't tell from Pathway's web site whether they include BRCA1 and BRCA2 screening in their test.
Another problem is that mutations are caused by a defect in DNA. There are lots of defects. The Pathway test may be testing for one breast cancer mutation, while you have a different mutation somewhere else along the DNA strand that gives a protein with a different but equally damaging defect.
I'm saying that only the U.S. military spent hundreds of millions of dollars, and gathered some of the most skilled scientists in the world, to figure out how to create biological weapons like weaponized anthrax.
The Japanese, Soviets, Iraqis, and a few local terrorist groups in the U.S. and Japan tried to create biological weapons, and they weren't successful. It's unlikely that anybody else would have applied the resources to the problem that the U.S. military did.
But now that the U.S. military has figured out how to do it, and demonstrated that it's possible and effective, terrorist groups can follow their lead with far fewer resources.
Now that they've shown the way, it should be easy for a half-dozen microbiologists with a modest budget to reproduce their weaponized, easily dispersed anthrax.
I agree. That was the best story of dozens that I read on the entire subject.
There were 2 reasons for that: (1) Schwartz and Weber interviewed Robert Bea http://www.ce.berkeley.edu/~bea/ and (2) They were smart enough to understand what Bea was talking about.
The reason Bea is so brilliant is that (1) He understands the technology thoroughly and (2) He concentrates on the question of why engineers don't do what they know they have to do in order to prevent accidents. Bea does for civil engineering what Feynmann did for the Challenger disaster.
Nobody knew for sure that it was possible to weaponize anthrax until we had done it. Now we've shown that it's possible, and we've shown how to do it.
Terrorists can collect anthrax from dead cows (or from humans, who are frequently treated for anthrax infections in the middle east). But they didn't have a way of disseminating it against an enemy.
Now, as a result of the USMRIID's biological warfare program, terrorists know that it's possible to convert anthrax into an easily-inhalable form that can be distributed quickly and widely through the postal system. There's no easy way to defend against that. If a terrorist did that, we'd just have to take the hit.
The rogue U.S. scientist (whoever he was) understood that and taught it to the world.
The Soviets tried it, had their own anthrax outbreak, and their conclusion was (according to their defector scientists who testified before Congress) that germ warfare was too dangerous, a "loose cannon" that's going to come back and attack you.
Richard Nixon also decided that biological warfare was too dangerous and ended the U.S. programs. Subsequent presidents reversed his policy. Nixon was right.
Working with smallpox is risky enough (although smallpox can teach us important lessons about virulence).
But deliberately creating more virulent microorganisms is stupid and dangerous, as scientists like Matthew Meselson warned.
We've handed the terrorists a good weapon to use against us.
AFAICT, the only biological attacks in the USA have been made by Federal employees.
Then what you know is wrong. Another who has worked in the same lab and is no longer restricted by his contract has come forward and stated is would be impossible for the Anthrax to have been made there. Furthermore, the DNA of the Anthrax was proved to not have come from that facility; though likely to be very closely related.
You're talking about Bruce Ivins and the 2001 Anthrax attacks, of course. http://en.wikipedia.org/wiki/2001_anthrax_attack Because Ivins killed himself, we'll never know for sure whether he was responsible. His friend Harry Heine said Ivins was innocent http://www.nytimes.com/2010/04/23/us/23anthrax.html and Heine knows more about the U.S. Army Medical Research Institute of Infectious Diseases than I do, but how do you know he's right? Nobody knows.
One thing that everybody agrees on is that the anthrax used in the attacks came from the USMRIID. In other words, it came from U.S. biological weapons research. If Ivins wasn't responsible, then another federal employee was, because federal employees developed and distributed the Ames strain. So the parent is right.
Bottom line: The U.S. military created biological weapons, with the excuse that they had to create them to figure out how to defend us from them. A lot of microbiologists said that was BS and we shouldn't do it, because once you develop the microbes, or even the technology, the chances are too high that it's going to escape -- and they were right.
So we've demonstrated to the world that it's possible to create weaponized anthrax (a microbe that's found throughout the world, including Iran), which could bring the mail system (and the country) to a halt and kill thousands or hundreds of thousands of Americans. And we've shown them how to do it. Now any postgrad microbiologist can make weaponized anthrax.
Fortunately anthrax is just one more disease that people have been getting for thousands of years. Livestock farmers in Iran and Iraq still get it. We've survived plagues before. We'll survive again (most of us). But if the U.S. government hadn't done the research, it wouldn't be a problem.
I agree, though, that this is not necessary in the vast majority of clinical situations. There still might be fringe cases where something like it could be used in a medical setting.
Right, this will be for one of those desperate cases that you read about in medical journals where they think they have an infection but they just can't identify it and empirical antibiotics aren't working. Its effectiveness will be limited by the false positives. How many commensal bacteria are there in the human body? 6,000? So the test says you've got 30 sometimes-pathogenic microbes. Then what do you do?
I rather view it as a new, valuable research tool. Being able to quickly "population-type" a microbial environment could be very useful in a variety of fields.
That could be one of the really useful applications. I'm sure the Human Microbiome Project will be examining this closely. It would be cool to have a cheap way to find out what microbes are on the human forehead and armpits.
But justifying it as a way to fight terrorism? What does that say about the rationality of science policy in America?
Talking about bare assertions, how do you decide that natural law gives you the right to do something? Aristotle, who made some offhand comments that people use to justify natural law, believed that slavery was OK. Does natural law give you the right to own slaves? Who decides?
You just decide yourself, right? Natural law says anything you want it to say.
Where does this unqualified "right" to kill yourself come from? Certainly not from U.S. law.
No, of course not. It's a natural right, one which the law can protect or infringe but not create.
And where does this "natural law" come from? Freshman philosophy class.
Only in philosophy classes will people say that you have a right to help a mentally incompetent person commit suicide. In the real world, people overwhelmingly reject such things, and the law tries to reflect that.
I assert that people who don't want to live for any reason, even if they have never been diagnosed or treated for anything, or have been diagnosed but refused treatment, have a right to kill themselves. They have no duty to stay alive.
Looks like we have a freshman philosophy major here.
Where does this unqualified "right" to kill yourself come from? Certainly not from U.S. law. Every state has restrictions on the circumstances under which one person can kill another person or himself. Doctors who have to deal with these problems every day have established guidelines which are close to, but not identical to, the laws. That's what I'm going by.
There are many medical conditions, including antibiotics, epilepsy drugs, anesthetics, brain infection, head injury, stroke, and hypothermia which cause delirium, agitation and self-destructive behavior. People in this condition may try to kill themselves, but when they return to their normal mental functioning they regard it as something they would never want to have done and they are grateful to the people who prevented them from harming themselves.
Because most people want to be protected if they're in that state, we've passed laws preventing them from killing themselves in that condition (and in most conditions). In fact, the laws usually provide that the government can usually intervene and prevent people from killing themselves.
So you don't have a right to kill yourself for any reason, under the law.
You do have a limited legal right in some states to kill yourself if you're mentally competent and have certain conditions defined by law because competent people with those conditions might reasonably want to die. Some doctors would define those circumstances more broadly than the law.
But most people would agree that you don't have a right to for example convince your mentally confused mother to make a will leaving you all her money and kill herself.
An individual choice has to be a rational, informed decision.
William Melchert-Dinkel was a nurse. He could identify and take advantage of vulnerable people, who were clinically depressed and unable to make rational, informed decisions. He tricked them into making irrational uninformed decisions.
It's as if you had a curable cancer and he told you, "I'm a nurse. Your cancer is incurable. You're going to die painfully. You'd be better off killing yourself now."
This is similar to the situation that doctors deal with every day in which a patient who is dying has to decide whether they want to stop treatment.
A patient has to be capable of making a rational decision. Some drugs and medical conditions make people depressed (independent of the normal depression that comes from dealing with the situation of an illness). Regularly, people decide during an illness that they don't want to live, change their mind after they get better, and are glad they didn't die.
Depression itself can be a clinical condition. People who are treated with drugs or talk therapy often get better, sometimes dramatically so. If a drug can make such a dramatic difference, that without the drug your individual choice is to die, and with the drug your individual choice is to live, that shows you how unreliable and irrational individual choice is.
I would reluctantly concede that people who don't want to live simply because the burden of life is too much, and who have been treated unsuccessfully for depression, physical pain, or any other cause, have a right to kill themselves. Quadriplegics have a legal right to refuse feeding. But that's only after they've exhausted every other option, which wasn't the case here.
We give people the right to make an individual choice to die, but not when they're obviously incapable of making a rational decision. Most of us want the government to interfere and stop us from killing ourselves when we're temporarily irrational.
OK, you're right. There's also the Star Simpson fiasco. (How can a nice place like Boston have such stupid cops and politicians?)
The guys who put up the Mooninites LEDs served 60 and 80 hours of community service. The problem is the cops overcharge people with crimes that could have long prison terms, and if you want to fight it, you'd have to go to court and take a risk of losing and serving years in prison, plus paying the huge costs of a felony defense.
I'm disturbed by this because I know artists who used public art, which is protected First Amendment activity. It's like putting up posters on a public lamp post, which is not illegal because politicians do it themselves all the time.
LEDs aren't unusual. The problem here is that you have people engaging in harmless activities, and if some bystander is so exciteable that they're frightened by blinking lights, they can get arrested. Worse, when the cops get involved and find out what's going on, instead of treating it as the harmless activity that it is, they abuse the legal system to improperly turn it into a crime.
But I don't think you can find a case of somebody who was prosecuted for making a joke -- not involving a bomb threat, and not reported to the authorities -- that was mistaken for a crime. That's unprecedented.
Then I suggest you go into Wal-Mart and scream “HE HAS A GUN!”.
That's apparently the section of the law they charged him with. IANAL but I don't think this case would hold up in court.
He was telling a joke, so the question is whether it's "likely" that public alarm would result. The statute also says *public* alarm so it might have to be taken seriously by more than just one person and the cops he complained to.
If I saw a post on Craigslist or eBay where somebody were offering to sell his wife or children, I'd assume it was a joke, and I think most normal people would come to the same conclusion. I'm pretty sure that when someone complaints to child protection services, they're legally mandated to check it out (in case you want to harass someone), so that's understandable. However, as soon as they confirmed that it was a joke, they should have dropped it. I guess Monroe County is crime-free and the police have nothing better to do.
There are lots of cases in which people told jokes that were taken seriously, several of them involving airport security. It seems that quite a few people respond to accusatory questions by telling jokes. The federal laws treat it very harshly, but they went to court and the juries usually sided with the defendants, so the feds have backed off on it.
I don't think somebody would be convicted of a crime on the basis of somebody else's misinterpretation of his joke that he didn't intend anyone to take seriously -- although it is possible.
If that were possible, then district attorneys could convict anyone who tells an innocent joke that some asshole takes seriously.
I remember another story in Slashdot in which a high school kid posted an email message in which he suggested as a joke that people log into their school's computer repeatedly, in order to crash it. He was making a joke about a DOS attack. The point of the story was that he described something that could never crash the computer, and any computer-savvy person would understand that. He was arrested and the cops and prosecutor didn't understand it at all, and prosecuted him. I don't remember how it came out. One of the problems in cases like that is that the point of most cases is to get the defendant to cop a plea, so an unscrupulous prosecutor will throw everything at them to encourage a settlement. Juvenile offenders don't have full rights or the resources to defend themselves, and they often get their records expunged after a certain period of time, so it isn't worth fighting.
There are laws against falsely reporting incidents to the police or similar authorities.
People have been prosecuted for falsely claiming bomb threats to others who were not the police or other authorities.
But I don't think you can find a case of somebody who was prosecuted for making a joke -- not involving a bomb threat, and not reported to the authorities -- that was mistaken for a crime. That's unprecedented.
Native American Research Lawsuit Settled - April 22, 2010
Posted for Rex Dalton....
The researchers denied the charges then, and still do. Mick Rusing, a Tucson attorney representing the one remaining researcher defendant, notes that all those charges were rejected by judges as the case moved through state and federal courts. The remaining claim in state court related to alleged negligence....
The tribal government will receive no money, state attorneys say. The award will cover legal expenses [emphasis added] for the 41 tribal members who remain as plaintiffs, with those members dividing the amount left after the legal costs, their attorney says. The exact details of those distributions are private, say Stephen Hanlon, a Washington, DC attorney for tribal members; he adds he isn’t being paid....
Geneticist Therese Markow – the former ASU leader of the project and the remaining researcher defendant – told Nature: “I’m glad it’s over; but it never should have happened. There was no basis for any claim. They would have lost had it gone to trial.”
When the project began, the ASU Humans Subjects Committee approved genetic studies of diabetes, schizophrenia and depression. Markow, who is now at the University of California at San Diego, says the research was conducted properly, tribal leaders were briefed on the studies, and patients were treated with respect....
Markow’s attorney, Rusing, said at least a half dozen of the original suing tribal members were shown not to have been in the study. Markow added that plaintiff Tilousi “wasn’t in the canyon” during the study....
“Tribal members were mislead by various parties,” says Markow. “This created suspicious sentiments; made them feel vulnerable. That was a shame; a travesty.”
In the end, she says, these misconceptions spread through various Native American communities making them more suspicious of researchers.
“It is a bitter irony that a group of people who historically have been under-served with respect to health-related research may now become even more under-served,” says Markow.
The investigators treated the Havasupai the same way they treat their own families when they look for a genetic disease.
The Times had another story about a doctor, James Lupski, whose family had the colorfully-named Charcot-Marie-Tooth disease, who got researchers to do DNA studies of his family. http://www.nytimes.com/2010/03/11/health/research/11gene.html In sequencing their DNA, they found that there were related conditions in other members of their family who everybody thought were healthy. They got a lot of useful information for that family.
The investigators explained what they were doing to the Havasupai, as best as they could to subjects who don't speak English that well and who don't understand the science of it that well. This is a common situation with well-established rules. As the TFA explains, they got informed consent to do exactly what they did. This was for the benefit of the Havasupai.
The alternative is to never do studies on poorly-educated people. Is that what you want?
There is no such thing as "just studying diabetes." In DNA studies, they try to get all the useful information they can (or can afford), as they did with Lupski. That way they can look for patterns.
Now a few members of the Havasupai want to complain about it (for their own benefit), so they've convinced the other tribal members that there is something wrong with doing standard medical studies on people with a poorly-understood disease. The subjects agreed, and now they're going back on their word. They got away with it because they were in a position to blackmail the university by getting other tribes to boycott their studies.
If you want to say that the doctors also benefitted professionally and got grants for helping their patients deal with life-threatening diseases and potentially saving a few lives, yeah, OK, they did. What's wrong with that? And what about the lawyer who sued the university?
The dietary limits for salt are about 5 grams a day, and you only need 2 or 3 grams a day. American men eat an average of 10 grams a day. We're eating way more salt than we used to 50 years ago. Forget about the hunter-gatherer days.
The evidence isn't irrefutable yet -- nobody has taken a large population and randomly divided them into a high-salt and low-salt group for 15 years, and they probably never will. Excess salt is probably safe for young, healthy people. But nobody stays young and healthy forever.
A huge number of people are getting high blood pressure and strokes, and people on high-salt diets seem to get more strokes. I know people who got strokes. I'd rather be dead than have to live for the last 3 or 4 years of my life ranting at my caretakers without my cognitive facilities, or with the left half my body paralyzed.
Unfortunately for the free-market personal choice crowd, you can't simply reduce salt in your diet by avoiding the salt shaker.
Most salt comes from processed food and restaurant food, and not just potato chips.
I thought I was OK because I was eating chicken, but I read in the NEJM that chicken is injected with salt and water (so that I can buy water at the price of chicken). Nothing on the label about that. Thanks, FDA.
So the only way to reduce salt in your diet is to get to the source -- the manufacturers (and the restaurants) who put salt in your food without telling you. Actually some of the food manufacturers, like Kraft, are cooperating. They say that once people get used to lower-salt food, it tastes fine (like it used to 50 years ago). The European countries did this and it worked well.
Sure, excessive salt can be dangerous, but not nearly as dangerous as not enough
Americans suffering from nutritional deficiency because they don't get enough salt? Ridiculous.
I've been following biotechnology since the 1980s, and I was really pissed off when people like Jeremy Rifkin made ridiculous statements when they should have known better. I used to ask people how they think we would have treated (or even diagnosed) AIDS if we didn't have interleukin to grow T cells.
If I were looking for a case where the science is clear, I wouldn't have tried to defend antibiotics for growth promotion in farm animals. I've followed the issue in Science and New Scientist, and there were examples of antibiotic-resistance plasmids from farm animals winding up in human farmers and causing disease. I've spoken to a lot of surgeons who were using vancomycin as a last-resort antibiotic, and were finding vancomycin-resistant infections, which really scared them. Then I saw the EU pharmaceutical companies trying to defend their use of vancomycin in farm animals. (I'm recalling this from memory, and I'm not an expert, so this is my recollection before fact-checking.)
How high a threshold of evidence do you have to have to keep vancomycin out of animal feed? Microbiologists don't really understand the epidemiology of these antibiotic-resistance genes in great detail. They're still getting surprises when a resistant strain that used to be limited to hospitals winds up in the community. If antibiotics in the feed produces resistant strains, and the strains can sometimes infect humans, or the genes can sometimes be transmitted to human pathogens, that would be enough for me. I haven't seen recent work on this field, and I'll keep an eye on it, but last I saw there was a legitimate debate.
I don't believe that politics should stay out of science. I had teachers who were fired during the McCarthy days. You can ignore politics, but politics won't ignore you, and you have to work in politics to get anything done. My teachers taught me that scientists should engage in politics (as Peter Agre says).
When I talk about the left, I don't include Obama. In health care, he started out with a terrible policy, which was designed to accommodate his campaign contributors and meet the Republicans halfway. The Republicans refused to accept that, and held it up with a threat of a filibuster. I think Paul Krugman described it pretty well in the New York Times. The Republicans were indeed obstructionists.
Obama is better on science policy than the Bush administration, but that's a low barrier -- creationism in science textbooks, for crying out loud.
I am well aware of anti-science movements on the left (like the anti-biotechnology campaigns), but the right really runs it into the ground.
As data I would submit Chris Mooney's The Republican War on Science (or all Mooney's articles that you can read free with a Google search).
During the Bush Administration, Science magazine had unprecedented editorials charging the Administration with anti-science bias. One of the more outspoken scientists was Peter Agre, who won the Nobel Prize for his discovery of the water channel. Another was Elizabeth Blackburn, who won the Nobel Prize for her discovery of telomerase (and worked, using her expertise as a scientist, on the President's Council on Bioethics, and was kicked off for disagreeing with the Republican party line). I can remember problems with Carter administration policies, but we've never had as anti-science an Administration as this.
I'll admit my bias. I read the Wall Street Journal editorial page every day, and I constantly see their attacks on science-based policy.
I particularly follow health policy and the pharmaceutical industry, and the WSJ editorial page attacks FDA regulation all the time, even the regulations that are solidly based on science. I just read an opinion piece attacking Medicare in hysterical terms for not reimbursing coronary CT scans for heart disease. Then I read an article in the New England Journal of Medicine about heart disease, which mentioned that there was no evidence for the value of coronary CT scans, although randomized controlled trials are ongoing.
In contrast, I follow http://www.democracynow.org/ (IMO the best news source on the left), and they regularly run stories in which they take some poorly-informed anti-science accusations on the left, and debunk them with authoritative experts.
I don't think the facts support your hypothesis. But I'm always open to new facts.
Since health insurance paid for Isabel's genetic screening, her positive test for a cystic fibrosis gene is now on the record with her insurance company, and the Browns are concerned this could hurt her in the future.
This is wrong.
The reporter should have checked it and didn't.
The only record the insurance company has is that Isabel got a state-mandated test. They shouldn't have any record of how the test came out. I'd have to check the laws on this, but in New York State, and I think under federal law, DNA tests are kept under very strict legal control.
I know that if you got a test for the breast cancer gene, that would be confidential and the people who are testing wouldn't be able to release it as *your results* to anyone.
As a general rule, doctors have to keep medical records, and everything important has to go in the medical record. If you show up in the emergency room unconscious, it's good for the doctors to know from the record that you had XYZ disease rather than have to spend a week taking X-rays and biopsies while your brain turns you into a vegetable.
If this girl has one gene for cystic fibrosis, it's important for her to know that when she gets old enough to have kids, because if her husband/partner also has a gene for cystic fibrosis, their kid will have a 25% chance of also having cystic fibrosis. Cystic fibrosis means at best a lifetime of lung infections and intensive medical care, and at worst a lifetime of declining health and death by age 20 or so. Most parents in a situation like that use in-vitro fertilization or abortion -- or adoption.
Keeping these tissue samples has turned out to be extremely valuable in the past. I read a Swedish study in which doctors in a cholesterol study had kept blood samples frozen for 30 years. Then, they realized they could use the same samples for a completely unrelated and unexpected purpose -- they started with men who had prostate cancer, and went back to see what their PSA looked like 30 years ago. The result is that it's easier for them to tell men today whether they need to get surgery for prostate cancer (which leaves you impotent and/or with urinary incontinence about half the time) or not.
Now I read in the NEJM almost every week about a new study in which researchers go through the DNA of 50,000 or 100,000 tissue samples and find genes associated with cancer, heart disease, kidney failure, and every disease you can imagine. They use these scans to find the genes responsible for it, and then they can figure out new drugs to treat those diseases.
Empowered patients my ass. These idiot parents are destroying the data bases that will enable doctors to figure out how their children's diseases work, so they can find treatments for them by the time their kids are growing up.
As TFA says, they've published over 20 papers with these samples.
I don't understand how this woman, who is a registered nurse, can claim that she didn't know that babies were tested at birth for several genetic diseases, so that they can be treated before it's too late and their lives saved. Didn't she learn that in nursing school?
There are problems with confidentiality and anonymization, but they can be solved. Of course if the U.S. had a national health care system like every other civilized country, the issue of preexisting conditions wouldn't come up.
Slashdot Mirror
Let's expand it some more.
Please, do some thinking rather than repeat the "government can't do anything right" propaganda meme that you got from the Republicans.
I used to work with medical software. The Veterans Health Information Systems and Technology Architecture (VistA) http://en.wikipedia.org/wiki/VistA is one of the best systems out there, as good as or better than any commercial medical information system. And it's open source.
If there's one thing the U.S. government has done well, it's develop software. I'd be interested to know what other informed people thinkl, but that's what I've seen. (As I recall, NASA employees wrote the first dBASE-style database, which was why it was so widely adopted.)
there is a way that is cheaper and more effective.
Family history.
With the exception of (not-nonexistent; but quite rare) conditions caused by a mutation or mutations that originated with you, not earlier in the line, or a fairly small number of well developed genetic tests, most of which you aren't going to get over the counter at CVS, you'll have a better chance of learning about the likely phenotypic consequences of your genes by looking at mommy and daddy
You are correct.
I just went through a stack of articles on this so let me see if I got it right.
There are two kinds of genetic diseases.
First there are the extremely rare diseases which are caused by a single mutation, like Gaucher disease. If it was in your family, you'd almost certainly know it, or you'd at least know that you have a problem in your family, because you would have had relatives who had it. Like most of the rare diseases on that list http://www.pathway.com/more_info/full_list_of_conditions (all of which you can look up in Wikipedia) it's a pretty dramatic disease.
One of them in the news lately was Charcot-Marie-Tooth disease, which is worth looking up http://www.nytimes.com/2010/03/11/health/research/11gene.html http://en.wikipedia.org/wiki/Charcot-Marie-Tooth_disease just because it's so interesting.
Second there are the more common diseases like breast cancer, colorectal cancer, coronary artery disease, diabetes, etc., which most of us will die from.
There are a few single-gene mutations that will usually result in cancer, like the BRCA1 or BRCA2 gene for breast cancer, which occur in about 1 or 2% of the population.
But most of the other genes that are associated with those diseases only confer an additional 1% (or less) risk of the disease. That's the big frustration in genetic medicine. The doctor tells you, "You've got a genetic variation that, other things being equal, gives you a 1% increased risk of getting diabetes." How is that information going to change your life in any way?
Scientists think they're doing pretty well if they discover a gene that increases the risk of a common disease by 10%. Now 10% is the *relative* risk. If 5% of the population gets a particular disease, that gene will increase the risk to 5.5%, which is not much greater. So you've found out that you have an increase in the *absolute* risk of 0.5% from that one gene. (But you don't know anything about the dozens of genes affecting that disease that they haven't discovered yet.)
One of the problems with BRCA1 and BRCA2 is that those genes were patented by Myriad Genetics, which was charging $3,000 or more to test for that one gene. Many of the most important genes were patented, and one of the disadvantages of that was that it made it impossible to put together a cheap screen of all the common disease-associated mutations. Myriad just lost a patent lawsuit, and if that decision is upheld, we will be able to get genetic screens with every important known mutation. http://www.aclu.org/free-speech/brca-genes-and-patents But I can't tell from Pathway's web site whether they include BRCA1 and BRCA2 screening in their test.
Another problem is that mutations are caused by a defect in DNA. There are lots of defects. The Pathway test may be testing for one breast cancer mutation, while you have a different mutation somewhere else along the DNA strand that gives a protein with a different but equally damaging defect.
Now that I look at it again, I see that they don't include Charcot-Marie-Tooth disease in their genetic screen. http://www.pathway.com/more_info/full_list_of_conditions (Maybe that's
I'm saying that only the U.S. military spent hundreds of millions of dollars, and gathered some of the most skilled scientists in the world, to figure out how to create biological weapons like weaponized anthrax.
The Japanese, Soviets, Iraqis, and a few local terrorist groups in the U.S. and Japan tried to create biological weapons, and they weren't successful. It's unlikely that anybody else would have applied the resources to the problem that the U.S. military did.
But now that the U.S. military has figured out how to do it, and demonstrated that it's possible and effective, terrorist groups can follow their lead with far fewer resources.
Now that they've shown the way, it should be easy for a half-dozen microbiologists with a modest budget to reproduce their weaponized, easily dispersed anthrax.
I agree. That was the best story of dozens that I read on the entire subject.
There were 2 reasons for that: (1) Schwartz and Weber interviewed Robert Bea http://www.ce.berkeley.edu/~bea/ and (2) They were smart enough to understand what Bea was talking about.
The reason Bea is so brilliant is that (1) He understands the technology thoroughly and (2) He concentrates on the question of why engineers don't do what they know they have to do in order to prevent accidents. Bea does for civil engineering what Feynmann did for the Challenger disaster.
To clarify what I'm saying:
Nobody knew for sure that it was possible to weaponize anthrax until we had done it. Now we've shown that it's possible, and we've shown how to do it.
Terrorists can collect anthrax from dead cows (or from humans, who are frequently treated for anthrax infections in the middle east). But they didn't have a way of disseminating it against an enemy.
Now, as a result of the USMRIID's biological warfare program, terrorists know that it's possible to convert anthrax into an easily-inhalable form that can be distributed quickly and widely through the postal system. There's no easy way to defend against that. If a terrorist did that, we'd just have to take the hit.
The rogue U.S. scientist (whoever he was) understood that and taught it to the world.
The Soviets tried it, had their own anthrax outbreak, and their conclusion was (according to their defector scientists who testified before Congress) that germ warfare was too dangerous, a "loose cannon" that's going to come back and attack you.
Richard Nixon also decided that biological warfare was too dangerous and ended the U.S. programs. Subsequent presidents reversed his policy. Nixon was right.
Working with smallpox is risky enough (although smallpox can teach us important lessons about virulence).
But deliberately creating more virulent microorganisms is stupid and dangerous, as scientists like Matthew Meselson warned.
We've handed the terrorists a good weapon to use against us.
Heckuva job.
AFAICT, the only biological attacks in the USA have been made by Federal employees.
Then what you know is wrong. Another who has worked in the same lab and is no longer restricted by his contract has come forward and stated is would be impossible for the Anthrax to have been made there. Furthermore, the DNA of the Anthrax was proved to not have come from that facility; though likely to be very closely related.
You're talking about Bruce Ivins and the 2001 Anthrax attacks, of course. http://en.wikipedia.org/wiki/2001_anthrax_attack Because Ivins killed himself, we'll never know for sure whether he was responsible. His friend Harry Heine said Ivins was innocent http://www.nytimes.com/2010/04/23/us/23anthrax.html and Heine knows more about the U.S. Army Medical Research Institute of Infectious Diseases than I do, but how do you know he's right? Nobody knows.
One thing that everybody agrees on is that the anthrax used in the attacks came from the USMRIID. In other words, it came from U.S. biological weapons research. If Ivins wasn't responsible, then another federal employee was, because federal employees developed and distributed the Ames strain. So the parent is right.
Bottom line: The U.S. military created biological weapons, with the excuse that they had to create them to figure out how to defend us from them. A lot of microbiologists said that was BS and we shouldn't do it, because once you develop the microbes, or even the technology, the chances are too high that it's going to escape -- and they were right.
So we've demonstrated to the world that it's possible to create weaponized anthrax (a microbe that's found throughout the world, including Iran), which could bring the mail system (and the country) to a halt and kill thousands or hundreds of thousands of Americans. And we've shown them how to do it. Now any postgrad microbiologist can make weaponized anthrax.
Fortunately anthrax is just one more disease that people have been getting for thousands of years. Livestock farmers in Iran and Iraq still get it. We've survived plagues before. We'll survive again (most of us). But if the U.S. government hadn't done the research, it wouldn't be a problem.
I agree, though, that this is not necessary in the vast majority of clinical situations. There still might be fringe cases where something like it could be used in a medical setting.
Right, this will be for one of those desperate cases that you read about in medical journals where they think they have an infection but they just can't identify it and empirical antibiotics aren't working. Its effectiveness will be limited by the false positives. How many commensal bacteria are there in the human body? 6,000? So the test says you've got 30 sometimes-pathogenic microbes. Then what do you do?
I rather view it as a new, valuable research tool. Being able to quickly "population-type" a microbial environment could be very useful in a variety of fields.
That could be one of the really useful applications. I'm sure the Human Microbiome Project will be examining this closely. It would be cool to have a cheap way to find out what microbes are on the human forehead and armpits.
But justifying it as a way to fight terrorism? What does that say about the rationality of science policy in America?
And lets not forget the Gutenberg Bible, with all those fluffy birds and decorations, who's supposed to concentrate on reading the text?
Literacy was declining long before moveable type. How can you expect people to concentrate on their prayers when they get distracted by flashy illuminations http://www.christusrex.org/www2/berry/ some of them quite lurid http://www.christusrex.org/www2/berry/DB-f25v-d2l.jpg ?
Talking about bare assertions, how do you decide that natural law gives you the right to do something? Aristotle, who made some offhand comments that people use to justify natural law, believed that slavery was OK. Does natural law give you the right to own slaves? Who decides?
You just decide yourself, right? Natural law says anything you want it to say.
No, of course not. It's a natural right, one which the law can protect or infringe but not create.
And where does this "natural law" come from? Freshman philosophy class.
Only in philosophy classes will people say that you have a right to help a mentally incompetent person commit suicide. In the real world, people overwhelmingly reject such things, and the law tries to reflect that.
I assert that people who don't want to live for any reason, even if they have never been diagnosed or treated for anything, or have been diagnosed but refused treatment, have a right to kill themselves. They have no duty to stay alive.
Looks like we have a freshman philosophy major here.
Where does this unqualified "right" to kill yourself come from? Certainly not from U.S. law. Every state has restrictions on the circumstances under which one person can kill another person or himself. Doctors who have to deal with these problems every day have established guidelines which are close to, but not identical to, the laws. That's what I'm going by.
There are many medical conditions, including antibiotics, epilepsy drugs, anesthetics, brain infection, head injury, stroke, and hypothermia which cause delirium, agitation and self-destructive behavior. People in this condition may try to kill themselves, but when they return to their normal mental functioning they regard it as something they would never want to have done and they are grateful to the people who prevented them from harming themselves.
Because most people want to be protected if they're in that state, we've passed laws preventing them from killing themselves in that condition (and in most conditions). In fact, the laws usually provide that the government can usually intervene and prevent people from killing themselves.
So you don't have a right to kill yourself for any reason, under the law.
You do have a limited legal right in some states to kill yourself if you're mentally competent and have certain conditions defined by law because competent people with those conditions might reasonably want to die. Some doctors would define those circumstances more broadly than the law.
But most people would agree that you don't have a right to for example convince your mentally confused mother to make a will leaving you all her money and kill herself.
An individual choice has to be a rational, informed decision.
William Melchert-Dinkel was a nurse. He could identify and take advantage of vulnerable people, who were clinically depressed and unable to make rational, informed decisions. He tricked them into making irrational uninformed decisions.
It's as if you had a curable cancer and he told you, "I'm a nurse. Your cancer is incurable. You're going to die painfully. You'd be better off killing yourself now."
This is similar to the situation that doctors deal with every day in which a patient who is dying has to decide whether they want to stop treatment.
A patient has to be capable of making a rational decision. Some drugs and medical conditions make people depressed (independent of the normal depression that comes from dealing with the situation of an illness). Regularly, people decide during an illness that they don't want to live, change their mind after they get better, and are glad they didn't die.
Depression itself can be a clinical condition. People who are treated with drugs or talk therapy often get better, sometimes dramatically so. If a drug can make such a dramatic difference, that without the drug your individual choice is to die, and with the drug your individual choice is to live, that shows you how unreliable and irrational individual choice is.
I would reluctantly concede that people who don't want to live simply because the burden of life is too much, and who have been treated unsuccessfully for depression, physical pain, or any other cause, have a right to kill themselves. Quadriplegics have a legal right to refuse feeding. But that's only after they've exhausted every other option, which wasn't the case here.
We give people the right to make an individual choice to die, but not when they're obviously incapable of making a rational decision. Most of us want the government to interfere and stop us from killing ourselves when we're temporarily irrational.
Remember the Boston Mooninites Fiasco?
OK, you're right. There's also the Star Simpson fiasco. (How can a nice place like Boston have such stupid cops and politicians?)
The guys who put up the Mooninites LEDs served 60 and 80 hours of community service. The problem is the cops overcharge people with crimes that could have long prison terms, and if you want to fight it, you'd have to go to court and take a risk of losing and serving years in prison, plus paying the huge costs of a felony defense.
I'm disturbed by this because I know artists who used public art, which is protected First Amendment activity. It's like putting up posters on a public lamp post, which is not illegal because politicians do it themselves all the time.
LEDs aren't unusual. The problem here is that you have people engaging in harmless activities, and if some bystander is so exciteable that they're frightened by blinking lights, they can get arrested. Worse, when the cops get involved and find out what's going on, instead of treating it as the harmless activity that it is, they abuse the legal system to improperly turn it into a crime.
But I don't think you can find a case of somebody who was prosecuted for making a joke -- not involving a bomb threat, and not reported to the authorities -- that was mistaken for a crime. That's unprecedented.
Then I suggest you go into Wal-Mart and scream “HE HAS A GUN!”.
That comes under the category of bomb threats.
That's apparently the section of the law they charged him with. IANAL but I don't think this case would hold up in court.
He was telling a joke, so the question is whether it's "likely" that public alarm would result. The statute also says *public* alarm so it might have to be taken seriously by more than just one person and the cops he complained to.
If I saw a post on Craigslist or eBay where somebody were offering to sell his wife or children, I'd assume it was a joke, and I think most normal people would come to the same conclusion. I'm pretty sure that when someone complaints to child protection services, they're legally mandated to check it out (in case you want to harass someone), so that's understandable. However, as soon as they confirmed that it was a joke, they should have dropped it. I guess Monroe County is crime-free and the police have nothing better to do.
There are lots of cases in which people told jokes that were taken seriously, several of them involving airport security. It seems that quite a few people respond to accusatory questions by
telling jokes. The federal laws treat it very harshly, but they went to court and the juries usually sided with the defendants, so the feds have backed off on it.
I don't think somebody would be convicted of a crime on the basis of somebody else's misinterpretation of his joke that he didn't intend anyone to take seriously -- although it is possible.
If that were possible, then district attorneys could convict anyone who tells an innocent joke that some asshole takes seriously.
I remember another story in Slashdot in which a high school kid posted an email message in which he suggested as a joke that people log into their school's computer repeatedly, in order to crash it. He was making a joke about a DOS attack. The point of the story was that he described something that could never crash the computer, and any computer-savvy person would understand that. He was arrested and the cops and prosecutor didn't understand it at all, and prosecuted him. I don't remember how it came out. One of the problems in cases like that is that the point of most cases is to get the defendant to cop a plea, so an unscrupulous prosecutor will throw everything at them to encourage a settlement. Juvenile offenders don't have full rights or the resources to defend themselves, and they often get their records expunged after a certain period of time, so it isn't worth fighting.
There are laws against falsely reporting incidents to the police or similar authorities.
People have been prosecuted for falsely claiming bomb threats to others who were not the police or other authorities.
But I don't think you can find a case of somebody who was prosecuted for making a joke -- not involving a bomb threat, and not reported to the authorities -- that was mistaken for a crime. That's unprecedented.
Juries refuse to convict in such cases.
– Guess what? It’s still illegal. That is posting false information that is likely to cause public alarm.
In what world is it illegal to post false information that is likely to cause public alarm?
Fox News would be in jail.
The NYT story was pretty good, but Nature had an even better story (from the scientists' perspective). For the subscription-challenged among you:
http://blogs.nature.com/news/thegreatbeyond/2010/04/native_american_research_lawsu_1.html
Native American Research Lawsuit Settled - April 22, 2010
Posted for Rex Dalton. ...
The researchers denied the charges then, and still do. Mick Rusing, a Tucson attorney representing the one remaining researcher defendant, notes that all those charges were rejected by judges as the case moved through state and federal courts. The remaining claim in state court related to alleged negligence. ...
The tribal government will receive no money, state attorneys say. The award will cover legal expenses [emphasis added] for the 41 tribal members who remain as plaintiffs, with those members dividing the amount left after the legal costs, their attorney says. The exact details of those distributions are private, say Stephen Hanlon, a Washington, DC attorney for tribal members; he adds he isn’t being paid. ...
Geneticist Therese Markow – the former ASU leader of the project and the remaining researcher defendant – told Nature: “I’m glad it’s over; but it never should have happened. There was no basis for any claim. They would have lost had it gone to trial.”
When the project began, the ASU Humans Subjects Committee approved genetic studies of diabetes, schizophrenia and depression. Markow, who is now at the University of California at San Diego, says the research was conducted properly, tribal leaders were briefed on the studies, and patients were treated with respect. ...
Markow’s attorney, Rusing, said at least a half dozen of the original suing tribal members were shown not to have been in the study. Markow added that plaintiff Tilousi “wasn’t in the canyon” during the study. ...
“Tribal members were mislead by various parties,” says Markow. “This created suspicious sentiments; made them feel vulnerable. That was a shame; a travesty.”
In the end, she says, these misconceptions spread through various Native American communities making them more suspicious of researchers.
“It is a bitter irony that a group of people who historically have been under-served with respect to health-related research may now become even more under-served,” says Markow.
The investigators treated the Havasupai the same way they treat their own families when they look for a genetic disease.
The Times had another story about a doctor, James Lupski, whose family had the colorfully-named Charcot-Marie-Tooth disease, who got researchers to do DNA studies of his family. http://www.nytimes.com/2010/03/11/health/research/11gene.html In sequencing their DNA, they found that there were related conditions in other members of their family who everybody thought were healthy. They got a lot of useful information for that family.
The investigators explained what they were doing to the Havasupai, as best as they could to subjects who don't speak English that well and who don't understand the science of it that well. This is a common situation with well-established rules. As the TFA explains, they got informed consent to do exactly what they did. This was for the benefit of the Havasupai.
The alternative is to never do studies on poorly-educated people. Is that what you want?
There is no such thing as "just studying diabetes." In DNA studies, they try to get all the useful information they can (or can afford), as they did with Lupski. That way they can look for patterns.
Now a few members of the Havasupai want to complain about it (for their own benefit), so they've convinced the other tribal members that there is something wrong with doing standard medical studies on people with a poorly-understood disease. The subjects agreed, and now they're going back on their word. They got away with it because they were in a position to blackmail the university by getting other tribes to boycott their studies.
If you want to say that the doctors also benefitted professionally and got grants for helping their patients deal with life-threatening diseases and potentially saving a few lives, yeah, OK, they did. What's wrong with that? And what about the lawyer who sued the university?
Even more important,sodium regulates nerve signals, but put that aside for the moment.
I read the New England Journal of Medicine article that was promoting a lot of this, and it made me worry http://content.nejm.org/cgi/content/short/362/7/590
The dietary limits for salt are about 5 grams a day, and you only need 2 or 3 grams a day. American men eat an average of 10 grams a day. We're eating way more salt than we used to 50 years ago. Forget about the hunter-gatherer days.
The evidence isn't irrefutable yet -- nobody has taken a large population and randomly divided them into a high-salt and low-salt group for 15 years, and they probably never will. Excess salt is probably safe for young, healthy people. But nobody stays young and healthy forever.
A huge number of people are getting high blood pressure and strokes, and people on high-salt diets seem to get more strokes. I know people who got strokes. I'd rather be dead than have to live for the last 3 or 4 years of my life ranting at my caretakers without my cognitive facilities, or with the left half my body paralyzed.
Unfortunately for the free-market personal choice crowd, you can't simply reduce salt in your diet by avoiding the salt shaker.
Most salt comes from processed food and restaurant food, and not just potato chips.
I thought I was OK because I was eating chicken, but I read in the NEJM that chicken is injected with salt and water (so that I can buy water at the price of chicken). Nothing on the label about that. Thanks, FDA.
So the only way to reduce salt in your diet is to get to the source -- the manufacturers (and the restaurants) who put salt in your food without telling you. Actually some of the food manufacturers, like Kraft, are cooperating. They say that once people get used to lower-salt food, it tastes fine (like it used to 50 years ago). The European countries did this and it worked well.
Sure, excessive salt can be dangerous, but not nearly as dangerous as not enough
Americans suffering from nutritional deficiency because they don't get enough salt? Ridiculous.
I've been following biotechnology since the 1980s, and I was really pissed off when people like Jeremy Rifkin made ridiculous statements when they should have known better. I used to ask people how they think we would have treated (or even diagnosed) AIDS if we didn't have interleukin to grow T cells.
If I were looking for a case where the science is clear, I wouldn't have tried to defend antibiotics for growth promotion in farm animals. I've followed the issue in Science and New Scientist, and there were examples of antibiotic-resistance plasmids from farm animals winding up in human farmers and causing disease. I've spoken to a lot of surgeons who were using vancomycin as a last-resort antibiotic, and were finding vancomycin-resistant infections, which really scared them. Then I saw the EU pharmaceutical companies trying to defend their use of vancomycin in farm animals. (I'm recalling this from memory, and I'm not an expert, so this is my recollection before fact-checking.)
How high a threshold of evidence do you have to have to keep vancomycin out of animal feed? Microbiologists don't really understand the epidemiology of these antibiotic-resistance genes in great detail. They're still getting surprises when a resistant strain that used to be limited to hospitals winds up in the community. If antibiotics in the feed produces resistant strains, and the strains can sometimes infect humans, or the genes can sometimes be transmitted to human pathogens, that would be enough for me. I haven't seen recent work on this field, and I'll keep an eye on it, but last I saw there was a legitimate debate.
I don't believe that politics should stay out of science. I had teachers who were fired during the McCarthy days. You can ignore politics, but politics won't ignore you, and you have to work in politics to get anything done. My teachers taught me that scientists should engage in politics (as Peter Agre says).
When I talk about the left, I don't include Obama. In health care, he started out with a terrible policy, which was designed to accommodate his campaign contributors and meet the Republicans halfway. The Republicans refused to accept that, and held it up with a threat of a filibuster. I think Paul Krugman described it pretty well in the New York Times. The Republicans were indeed obstructionists.
Obama is better on science policy than the Bush administration, but that's a low barrier -- creationism in science textbooks, for crying out loud.
I am well aware of anti-science movements on the left (like the anti-biotechnology campaigns), but the right really runs it into the ground.
As data I would submit Chris Mooney's The Republican War on Science (or all Mooney's articles that you can read free with a Google search).
During the Bush Administration, Science magazine had unprecedented editorials charging the Administration with anti-science bias. One of the more outspoken scientists was Peter Agre, who won the Nobel Prize for his discovery of the water channel. Another was Elizabeth Blackburn, who won the Nobel Prize for her discovery of telomerase (and worked, using her expertise as a scientist, on the President's Council on Bioethics, and was kicked off for disagreeing with the Republican party line). I can remember problems with Carter administration policies, but we've never had as anti-science an Administration as this.
I'll admit my bias. I read the Wall Street Journal editorial page every day, and I constantly see their attacks on science-based policy.
I particularly follow health policy and the pharmaceutical industry, and the WSJ editorial page attacks FDA regulation all the time, even the regulations that are solidly based on science. I just read an opinion piece attacking Medicare in hysterical terms for not reimbursing coronary CT scans for heart disease. Then I read an article in the New England Journal of Medicine about heart disease, which mentioned that there was no evidence for the value of coronary CT scans, although randomized controlled trials are ongoing.
In contrast, I follow http://www.democracynow.org/ (IMO the best news source on the left), and they regularly run stories in which they take some poorly-informed anti-science accusations on the left, and debunk them with authoritative experts.
I don't think the facts support your hypothesis. But I'm always open to new facts.
Most of them do literature reviews, not real science. Literature reviews in which they don't understand what they're reading.
I'm embarrassed to see this funded by The Nation Institute. The people on the left usually understand science better.
... than an anonymous neurosurgeon?
Did I miss something?
I couldn't find one reference to a study published in a peer-reviewed journal in the last 10 years that claimed to rule out association.
Since health insurance paid for Isabel's genetic screening, her positive test for a cystic fibrosis gene is now on the record with her insurance company, and the Browns are concerned this could hurt her in the future.
This is wrong.
The reporter should have checked it and didn't.
The only record the insurance company has is that Isabel got a state-mandated test. They shouldn't have any record of how the test came out. I'd have to check the laws on this, but in New York State, and I think under federal law, DNA tests are kept under very strict legal control.
I know that if you got a test for the breast cancer gene, that would be confidential and the people who are testing wouldn't be able to release it as *your results* to anyone.
As a general rule, doctors have to keep medical records, and everything important has to go in the medical record. If you show up in the emergency room unconscious, it's good for the doctors to know from the record that you had XYZ disease rather than have to spend a week taking X-rays and biopsies while your brain turns you into a vegetable.
If this girl has one gene for cystic fibrosis, it's important for her to know that when she gets old enough to have kids, because if her husband/partner also has a gene for cystic fibrosis, their kid will have a 25% chance of also having cystic fibrosis. Cystic fibrosis means at best a lifetime of lung infections and intensive medical care, and at worst a lifetime of declining health and death by age 20 or so. Most parents in a situation like that use in-vitro fertilization or abortion -- or adoption.
Keeping these tissue samples has turned out to be extremely valuable in the past. I read a Swedish study in which doctors in a cholesterol study had kept blood samples frozen for 30 years. Then, they realized they could use the same samples for a completely unrelated and unexpected purpose -- they started with men who had prostate cancer, and went back to see what their PSA looked like 30 years ago. The result is that it's easier for them to tell men today whether they need to get surgery for prostate cancer (which leaves you impotent and/or with urinary incontinence about half the time) or not.
Now I read in the NEJM almost every week about a new study in which researchers go through the DNA of 50,000 or 100,000 tissue samples and find genes associated with cancer, heart disease, kidney failure, and every disease you can imagine. They use these scans to find the genes responsible for it, and then they can figure out new drugs to treat those diseases.
Empowered patients my ass. These idiot parents are destroying the data bases that will enable doctors to figure out how their children's diseases work, so they can find treatments for them by the time their kids are growing up.
As TFA says, they've published over 20 papers with these samples.
I don't understand how this woman, who is a registered nurse, can claim that she didn't know that babies were tested at birth for several genetic diseases, so that they can be treated before it's too late and their lives saved. Didn't she learn that in nursing school?
There are problems with confidentiality and anonymization, but they can be solved. Of course if the U.S. had a national health care system like every other civilized country, the issue of preexisting conditions wouldn't come up.