genie-out-of-the-bottle writes "California's Department of Public Health has sent cease-and-desist notices to 13 companies that market genetic testing directly to consumers. (We discussed these serviceswhen they launched.) Allegedly, under state law, California residents must submit a doctor's order to have a genetic test run. It will be interesting to see if the government will actually succeed in putting the genetic genie back in the bottle, given that all you need for testing is a few drops of saliva. The effort closely resembles US government attempts to block export of strong encryption product back in '90s." A Wired editor has up an opinion piece arguing that his DNA is his business and none of the government's.
Regulation should protect me from bodily harm and injury, not from information that's mine to begin with.
Sorry Tom, but the information isn't yours. Much of "your" DNA is patented. If you don't intend to pay the licensing fees, then you should expect to receive a C&D shortly.
Is that not more the duty of the company offering such a service and not ours? If they're willing to pony up the licensing fees to offer such a service to us, and the consumer is willing to pay prices in line with that then how is it the government's business. It's just a perpetuation of the nanny state if you ask me.
-- note: no I'm not interested in said service, no I don't really think it's that great of an idea, or feel any desire to use it. But it's still an issue of freedom.
A lot of commercial genetic testing is scientifically worthless, even harmful if they give you bad information about what your genetics actually means for you or your children. There needs to be some kind of regulation (regarding claims they can make, information supplied to customers, actual evidence for the disease-test relationship they claim etc), but at the moment the public health people can't agree on what form that regulation should take, so there might be a lot of this 21st century snake-oil around for a long time.
I don't know anything about California, but it could be that the government is trying to protect people from possible harms of bad and unnecessary testing.
'I don't know anything about California, but it could be that the government is trying to protect people from possible harms of bad and unnecessary testing.'
The interesting thing is that this technology is evolving so rapidly that the type of testing California is cracking down on is going to look quaintly prehistoric in just a few years. Roche is expected to launch a commercial high resolution version of its 'sequence capture' platform in the next few months which, combined with a 'next generation' sequencing system (like Roche's own 454 machine), should allow complete human 'exomes' (all the well-defined mature gene transcript sequences in a sample) to be completely sequenced for a few thousand dollars. But this, of course, is just the first step. One or more of the future sequencing technologies currently in development is likely to bring entire human genome sequences into this price range:
with the eventual Holy Grail of a '$1000 genome' now seeming pretty much inevitable. But some of the teams competing for the genomics X-prize don't intend to stop there - e.g., Reveo claims to be aiming to produce a practical nanotechnology-based instrument 'in 5-10 years that will cost less than $1000 and sequence the whole genome and simultaneously the epigenome (methylation code) nearly error free in a minute for pennies per genome.'
So what happens if it's possible to buy an extreme throughput sequencer for the price of a laptop, and decode a genome as effortlessly as cracking CSS on a DVD? Is this particular genie really likely to stay in the bottle? And is it in any case defensible that knowledge of an individual's genome should ('for his own good') remain the province of an exclusive medical priesthood, rather than of the individual himself?
The US Government Accountability Office compiled a report of genetic testing that is available here [gao.gov], although it's only a smallish snapshot of the current situation.
Both the positive and negative implications for widespread genetic testing are favourite subjects of Ron Zimmern and Muin Khoury, and if you're interested you'll find a lot of discussion of genetic test regulation by searching for them. There's a newspaper report of a study by Khoury here [guardian.co.uk], but annoyingly I can't find the original work.
Interesting study! "To complete our work, we investigated a nonrepresentative selection of four Web sites selling nutrigenetic tests.
What's amusing is that they only had two DNA samples, from a 9-month old girl and a 48-year old man...but they submitted them 16 times to four separate sites with different profile information.
The short of it is: the four sites in question seem to base their results off of your profile questions, not your DNA. In addition, they attempt to cross-sell supplements to you.
I heard that they will pass over your infringement if you post some of your DNA over your front door... Just put some blood on the door and you will be spared the C&D!
Patenting DNA was a problem maybe 10 or so years ago, but since then much of the patents and patentable information on DNA has been collected in open repositories of information. Drug companies have found it much more lucrative to open up this information and share it with other companies rather than keep it to themselves - shouldn't be too surprising to open-source enthusiasts. Instead, they have been concentrating on deriving income further downstream from the drugs produced from the DNA data. Right now, most of your DNA is open-source.
The issue is that these companies did not create the DNA. It was yet another abuse of the patent system, and the courts and the government didn't have the balls to ban it outright. If it ain't an invention, it shouldn't be patentable.
It's a pretty common misperception that somehow humans would have to pay license fees for use of DNA.
What was being patented was a purified sequence of DNA for use in a diagnostic test. It's not the DNA itself--there's 10 million years of prior art for that--but the use of a particular sequence of DNA for diagnostics.
The total human genome is over 3 billion base pairs. Companies were racing to figure out which small sequences (100 or so pairs) would be useful in diagnostics and possibly in therapy. The use of DNA for that purpose was completely new at the time.
For example, check out this DNA patent application [uspto.gov]. The application refers to a specific DNA sequence, but the patent itself is for the use of that particular sequence for a specific kind of therapy.
It's still perfectly legal to reproduce, sell your DNA in a bottle, and so forth. The only thing the patent covers is the use of one very short sequence in a particular kind of therapy.
It might still be bad policy, but it's not as if you don't own your DNA.
I don't think you understand what patents are and how they work. There are 3 types of patents:
Utility Patent - protects the way that your "invention" is used and works. Your "invention" does not have to be a machine or something tangible. It can be a business method or a process of doing something. For example, you can patent a method for making a pepperoni pizza so long as your method is novel. You did not have to have invented pepperoni pizza.
Design Patent - protects the way something looks. I'm not 100% c
True, the information in my genetic code is not my personal property, intellectual or otherwise. However, that does not mean that companies, individuals or governments have the right to do what they please with that information.
If you think otherwise, try getting your hands on, and using to your advantage, the genetic information of some important or influential person. Say a CEO or a politician. How long after they discover your actions to you think you will keep your supposed rights?
What you said has nothing to do with reality, or my genetic code.
I am the SUM if my genetic code, which is for all intents and purposes, unique. That the mortar and blocks and drywall and carpet are patented by someone else means nothing when I undeniably own the patent on the house.
"If you don't intend to pay the licensing fees"
What exactly am I going to be paying licensing fees for? Or did you throw this bit of fearmongering out there without really having any idea what it meant?
While there are some half-decent arguments (reactionist people taking tests then making up their own "treatment" plan for their 1% chance of developing condition X), I agree this is for doctors.
These kind of rubber stamp things (since I assume most doctors would just say "yes" to simplify their lives) just raise health care costs. By requiring this signature you take up the doctor's time and it's harder for you to compare and get things done.
This seems like regulation for the sake of regulation to me.
Actually it won't be rubber stamped. Unless the individual has some family history of the genetic disease or symptoms which are suggestive of it genetic testing is NOT OFFERED by physicians.
Likewise if a family member has such symptoms or his side of the family has these traits, genetic testing is disallowed unless the person actually agrees to it. I.e. a wife wants to know if her husband has Huntington's, she cannot force him to take a test or bring a sample to a physician and ask for it to be tested. Even if she only wants the information for future conception, the doctor won't allow it.
What's to keep someone - anyone - your wife, boss, insurer, whoever, from taking that toothpick you used after lunch and sending it in to one of these companies?
I think the law is intended to protect YOU from others, not from yourself. If you actually have some problem then you can go to a physician and have total confidence that the only person who will know the result is you and him. Hell, you can even withhold it from him if you wish. As it is now a person can send in ANYONE'S DNA and get their result.
I'd rather go to a doctor than leave that second option as a possibility. That's the option that leads down the road to real Gattaca-style shit. It's a future I'd rather NOT live in.
What's to keep someone - anyone - your wife, boss, insurer, whoever, from taking that toothpick you used after lunch and sending it in to one of these companies?
Please, that will never happen. You're just being paranoid. And of course, such irrational paranoia is exactly the type of behavior I would expect, given that you have a repeating ATTCAGGGATTAG sequence on your chromosome 3, which results in a 500% increase in the risk of developing paranoid schizophrenia.
If you actually have some problem then you can go to a physician and have total confidence that the only person who will know the result is you and him. Hell, you can even withhold it from him if you wish.
RRRRRight.
With all the paperwork for insurance companies (both your health insurance and the doc's liability insurance) nobody takes your privacy seriously in the medical profession. Sure they claim to adhere to HIPPA, but that's not the same thing. True privacy would mean that:
1) The fact that you requested a test is never recorded 2) The sample being tested is not associated with you in any way 3) The results of the test are not recorded with any identifiable information 4) You can retrieve the results wit
(since I assume most doctors would just say "yes" to simplify their lives)
While this _would_ increase the number of office visits, it's likely that it would not generate a great deal of revenue, since it would likely be coded at the lowest level.
I know a number of primary care physicians, and this just isn't the type of visit that they would try to encourage. Furthermore, most physicians I know (IMHO all responsible ones) would discourage unwarranted genetic testing, as well as any other type of medica
What's that about "outcome"? If you're getting an informational test done -- without the intent or expectation that it will diagnose or treat any disorder, but in the interest of getting a CD with interesting statistical information (with the explicit understanding that that interesting information isn't to be used in relationship towards diagnosis or treatment, and that the relationship between the data provided and any expected implications thereof will evolve/change over time as the science improves)...
$1000 is not much money, and I'd find it interesting to have access to the data out of sheer intellectual curiosity -- and I find it offensive that anyone would find it to be their responsibility to "protect" me from doing that. What's next, "protecting" people from blowing their money on space tourism, or on visiting museums?
It's a case of balancing the risks against the rewards. Sure you might find it interesting, but a lot of people will get tests which are often meaningless medically and which they will base lifestyle or health choices on.
I'm not sure on which side of the argument I'm on at the moment, but I'm very nervous about the prospect of people selling tests for disease genes without any requirement for evidence of the disease-gene interaction, and for the correct information for the implications to be supplied to customers.
Would you like to know your SORL1 genotype? What if I told you it was possibly liked to Alzheimer's disease? What if I told you it was definitely liked to young onset Alzheimer's disease, but I was lying? Would you like your wife's genotype? How would you interpret the information? I understand the intellectual curiosity and freedom points of view but this can do harm as well as good.
It may make more sense, but it's not good law. Should there be laws to prevent my boss or insurance agent from surreptitiously running a DNA test on me? Absolutely, and those laws should have teeth. Should I be prevented from getting a mail-order DNA test because of something someone else might do? Absolutely not.
I think this has more to do with privacy than "keeping your data from you". Ask it stands now what's to stop you from sending a cheek swab with your neighbor's DNA instead of yours under a false name? If a doctor is involved at least the perpetrator must make a face to face appearance under the fake name with someone who would be "accountable" before being able to carry through with his plan.
I think this has more to do with privacy than "keeping your data from you". Ask it stands now what's to stop you from sending a cheek swab with your neighbor's DNA instead of yours under a false name? If a doctor is involved at least the perpetrator must make a face to face appearance under the fake name with someone who would be "accountable" before being able to carry through with his plan.
Perhaps what should be banned is accepting DNA samples indirectly.
"Perhaps what should be banned is accepting DNA samples indirectly."
I would hope that's all ready banned. The question is how to enforce that. I would prefer the onus of accountability to be on the DNA analyzing company rather than a doctor, so I think the law could be better in that respect.
I would hope that's all ready banned. The question is how to enforce that. I would prefer the onus of accountability to be on the DNA analyzing company rather than a doctor, so I think the law could be better in that respect.
And how are we to know if a company is violating someone's rights? If someone has given them a sample under false pretenses, they have no way of actually knowing whether or not they're testing who they think they're testing. It seems to me the most logical third party to take the samp
As I understand it, you don't actually have to be present at their offices to provide the DNA Sample.
What kind of crap is this? So, basically, I could collect the saliva (Don't ask how) of various people I know, send it in, and have ready access to their genetic information? HIPAA should be all over this like white on rice. With no actual strong safeguards on this stuff anyone could theoretically easily gain access to your genetic profile.
A better solution is to be able to do it freely, you actually have to show up at the lab and be able to certify you are who you say you are. Perfect? No, but better than how it was being done.
Because without the ability to read it we lack the ability to use it to discriminate.
Say, for instance, your employer were able to collect you DNA. How is immaterial at the moment. Your company does this, and gets you profiled. Uh-oh, high risk for cancer. So they fire you so their insurance premiums won't go up. Also, can you imagine how much that information is worth to your insurance company?
Yes, there are already some laws on the books against genetic discrimination, but a lot of places don't have to tell you why they fired you, and if you didn't know they got the DNA...
Besides, it's just plain a privacy issue. My DNA is my business. Not yours. However, with the mail-in DNA testing, if you were to get some of my DNA, you could find out what's in my DNA. Why do you think you should have that right?
Or, we could just stop using companies as insurance providers, and that whole problem goes away. It's just a stupid situation we've become trapped in. Further, insurance is supposed to protect you against risks, not certainties.
If you're a bad driver, should you not be charged more for liability insurance. If you've a genetic redisposition towards an expensive for of cancer, should you not pay more for the that? If you've have a genetic condition that carries the certainty of expensive treatment, then insurance isn't even relevent, you need a budget (or charity) not proection against risk.
Why people what to conflate health insurance and charity is beyond me - insurance companies are just about the worst possible choice as charity providers.
Fair enough, but that sort of goes beyond the scope of this discussion. Of course, this wouldn't be/. if it didn't, so... I do, however, agree. The insurance situation in this country is beyond FUBARed. Of course, it's like that in a lot of countries. The biggest problem is health insurance in particular. Frankly I'm not sure how we could make it better. Japan, for instance, has pretty much all private practices, and health care is cheap as dirt, but that's because all treatments are strictly price-controll
To be fair, I don't think I said anything about medical care being an inalienable right, but was taking the premise of your analogy and illustrating what, to me, was a particularly sizable disparity. Choice is a huge differentiating factor there, though one could argue that it might well be irrelevant (which you've done quite cogently).
I think there are plenty of arguments to be made for medical care being a right insofar as it's a requirement for the support
BTW, Harris County (the county that Houston, Texas occupies) has a wonderful example of healthcare-for-the-poor done right. You can get a card from the government that gives you access to a system that functions as a government-run HMO. It's exactly as bad as you'd expect from combining "government" and "HOM", but that's the secret of its success. Getting any care requires a lot of waiting in long lines, but that care is almost always free. The burden on the taxpayers is quite low, because no one is going
It doesn't matter if it has no financial consequences, i.e. if your insurance agency doesn't test you. So your fine if your voting Democratic. If you like the Republicans insane view of health care then yes you best worry.
California requires a doctor's order form for not just genetic testing. The company I work for (www.biophysicalcorp.com)(is it kosher for me the link my company here?) does direct-to-consumer blood/ biomarker testing, and for California and about 9 other states, the individual consumer can not just order the test from us, they have to have their doctor sign a order form (Which creates a hassle for us and the client).
Heck, in a few states (Cali included) we can't even send the client their report, we have to send it to the doctor's office.
I am pretty sure this law is in effect partially to protect the interests of the doctors in general.
I am not usually one to jump on the anti-regulation bandwagon. I appreciate the need for restrictions on many practices, and regulatory agencies to make sure people practicing in the industry are competent and perform their jobs safely. HOWEVER, this seems like something that should be outside the realms of regulation (of this sort). There is no medicine being practiced here; there is no diagnosis, no prescription, no anything of that sort going on. They don't perform an exam, they don't even touch the customer (in fact I am pretty sure these companies don't even SEE their customers). In fact, I find it hard to even classify what they are doing as being in the medical field at all - they don't claim to diagnose or cure any disease. Given the rampant availability of 'natural' cures for things that have no regulatory body overseeing them, why is this something that needs to be regulated? Those 'natural' cures and supplements ARE saying they cure diseases(disclaimers not withstanding), with zero regulatory oversight. How is knowing my DNA sequence more dangerous to me than taking unknown, unregulated herbal supplements?
The government's job shouldn't be to require someone act as a filter for my own personal information. My own personal information is not 'dangerous', and I do not need someone holding my hand while I find out about it; if we hold to this view, how is it different than saying "We need to restrict public access to this information about scientology because if people read about it without someone to interpret it for them, they might believe it to be true and that could cause them harm." I can protect myself from this dangerous information, thank you very much.
All things biotech are becoming like technology in general: more accessible and cheaper.
Let's say if I have some near-future technology or perhaps today a biochemist friend or two, would the law keep me from running a genetic test on myself?
Really, how long before a home test becomes viable? After all, one can already do this [utah.edu] at home.
As long as it is non-invasive, I ought to be able to decide for myself what tests I want. If you need consumer protection then that's up to the FDA to get unsafe and ineffective products off of the market. If anything. being able to self-test will get a person who otherwise wouldn't have gone to the doctor to go if something bad is detected.
I live in CA and I do want a safety net, but not a nanny state.
Didn't Bush just recently sign in a law that helps protect peoples' genetic rights? What was that about, if not to help with these kinds of issues? (Thought I saw this in Slashdot, but I CFTA.)
I love this law. I don't want people testing my DNA without my consent. When you involve a doctor, you add a barrier against unscrupulous people. Presumably, a doctor will take the sample themselves before sending it off. No worries about someone finding my hair and
Of course, it will be done anyway, just like when people cheat drug tests. And of course, there are unscrupulous doctors, too.
The fact that the law is there is a good thing. If someone steals a sample of my DNA, has it checked, and finds out
The biggest impasse in having affordable health care are the states and Federal government. From not being able to comparison shop across state borders to having individual plans loaded up with required coverages the majority of people will never need. Then top it off with favorable tax codes to companies offering health care, road blocks to using your health savings accounts at anything but name brand pharmacies, and double standards in care when comparing the quality of government run hospitals and private and the picture cannot be more clear.
The state (sub federal government) doesn't want you self reliant. If you are then your not beholden to them or subject to their regulation. They foster an entitlement mentality and that of reliance on government by stepping in the way of any private attempt to get the job done. My own doctor refuses new patients covered by government health agencies because the paperwork and forced low fees make even the most virulent HMO look better.
Don't worry, pretty soon besides not being able to own your own dna you won't even get to pick the doctor who does. worse, many of the people you know will happily go down that road because its one less thing they will have to be responsible for. laziness and lack of self reliance are the truest ways we lose our freedoms
...behind those restrictions? Do you also need a permission to measure your weight, or to look in the mirror?
Because it would be very easy for me to collect saliva from someone whom I know in real life, and run tests on their DNA without their knowledge or consent. Also, there is a desire to prevent coersion towards that same goal.
It'd also be quite easy for me to measure their weight
How do you propose to measure my weight without my discovering it? I assure you that your proposed scheme is more difficult then collecting some of my saliva. Also, what does my weight tell you, compared to my DNA?
You don't own your DNA (Score:5, Funny)
Sorry Tom, but the information isn't yours. Much of "your" DNA is patented. If you don't intend to pay the licensing fees, then you should expect to receive a C&D shortly.
Re: (Score:2, Insightful)
-- note: no I'm not interested in said service, no I don't really think it's that great of an idea, or feel any desire to use it. But it's still an issue of freedom.
Re:You don't own your DNA (Score:5, Insightful)
A lot of commercial genetic testing is scientifically worthless, even harmful if they give you bad information about what your genetics actually means for you or your children. There needs to be some kind of regulation (regarding claims they can make, information supplied to customers, actual evidence for the disease-test relationship they claim etc), but at the moment the public health people can't agree on what form that regulation should take, so there might be a lot of this 21st century snake-oil around for a long time.
I don't know anything about California, but it could be that the government is trying to protect people from possible harms of bad and unnecessary testing.
Parent
All our base pair are belong to us? (Score:5, Informative)
The interesting thing is that this technology is evolving so rapidly that the type of testing California is cracking down on is going to look quaintly prehistoric in just a few years. Roche is expected to launch a commercial high resolution version of its 'sequence capture' platform in the next few months which, combined with a 'next generation' sequencing system (like Roche's own 454 machine), should allow complete human 'exomes' (all the well-defined mature gene transcript sequences in a sample) to be completely sequenced for a few thousand dollars. But this, of course, is just the first step. One or more of the future sequencing technologies currently in development is likely to bring entire human genome sequences into this price range:
http://genomics.xprize.org/ [xprize.org]
with the eventual Holy Grail of a '$1000 genome' now seeming pretty much inevitable. But some of the teams competing for the genomics X-prize don't intend to stop there - e.g., Reveo claims to be aiming to produce a practical nanotechnology-based instrument 'in 5-10 years that will cost less than $1000 and sequence the whole genome and simultaneously the epigenome (methylation code) nearly error free in a minute for pennies per genome.'
So what happens if it's possible to buy an extreme throughput sequencer for the price of a laptop, and decode a genome as effortlessly as cracking CSS on a DVD? Is this particular genie really likely to stay in the bottle? And is it in any case defensible that knowledge of an individual's genome should ('for his own good') remain the province of an exclusive medical priesthood, rather than of the individual himself?
Parent
Re:You don't own your DNA (Score:4, Informative)
The US Government Accountability Office compiled a report of genetic testing that is available here [gao.gov], although it's only a smallish snapshot of the current situation.
Both the positive and negative implications for widespread genetic testing are favourite subjects of Ron Zimmern and Muin Khoury, and if you're interested you'll find a lot of discussion of genetic test regulation by searching for them. There's a newspaper report of a study by Khoury here [guardian.co.uk], but annoyingly I can't find the original work.
Parent
Re: (Score:3, Informative)
"To complete our work, we investigated a nonrepresentative selection of four Web sites selling nutrigenetic tests.
What's amusing is that they only had two DNA samples, from a 9-month old girl and a 48-year old man...but they submitted them 16 times to four separate sites with different profile information.
The short of it is: the four sites in question seem to base their results off of your profile questions, not your DNA. In addition, they attempt to cross-sell supplements to you.
I wish th
Re:You don't own your DNA (Score:5, Funny)
Parent
Re: (Score:3, Informative)
Re:You don't own your DNA (Score:5, Funny)
Parent
Re:You don't own your DNA (Score:5, Informative)
Parent
Re:You don't own your DNA (Score:5, Informative)
Parent
Re: (Score:2)
Re:You don't own your DNA (Score:5, Informative)
What was being patented was a purified sequence of DNA for use in a diagnostic test. It's not the DNA itself--there's 10 million years of prior art for that--but the use of a particular sequence of DNA for diagnostics.
The total human genome is over 3 billion base pairs. Companies were racing to figure out which small sequences (100 or so pairs) would be useful in diagnostics and possibly in therapy. The use of DNA for that purpose was completely new at the time.
For example, check out this DNA patent application [uspto.gov]. The application refers to a specific DNA sequence, but the patent itself is for the use of that particular sequence for a specific kind of therapy.
It's still perfectly legal to reproduce, sell your DNA in a bottle, and so forth. The only thing the patent covers is the use of one very short sequence in a particular kind of therapy.
It might still be bad policy, but it's not as if you don't own your DNA.
Parent
Re: (Score:3, Informative)
There are 3 types of patents:
Utility Patent - protects the way that your "invention" is used and works. Your "invention" does not have to be a machine or something tangible. It can be a business method or a process of doing something. For example, you can patent a method for making a pepperoni pizza so long as your method is novel. You did not have to have invented pepperoni pizza.
Design Patent - protects the way something looks. I'm not 100% c
Re: (Score:2, Funny)
DNA guy: Y'uh huh. If you've ever handled a penny, the government's got
your DNA. Why do you think they keep 'em in circulation?
Re:You don't own your DNA -the GIAA (Score:3, Funny)
thanks dude!
But They Don't Have Rights to Use It (Score:2)
If you think otherwise, try getting your hands on, and using to your advantage, the genetic information of some important or influential person. Say a CEO or a politician. How long after they discover your actions to you think you will keep your supposed rights?
Here's the problem with your observation (Score:2, Interesting)
I am the SUM if my genetic code, which is for all intents and purposes, unique. That the mortar and blocks and drywall and carpet are patented by someone else means nothing when I undeniably own the patent on the house.
"If you don't intend to pay the licensing fees"
What exactly am I going to be paying licensing fees for? Or did you throw this bit of fearmongering out there without really having any idea what it meant?
Doctors contribute to government corruption. (Score:4, Insightful)
Re: (Score:3, Insightful)
While there are some half-decent arguments (reactionist people taking tests then making up their own "treatment" plan for their 1% chance of developing condition X), I agree this is for doctors.
These kind of rubber stamp things (since I assume most doctors would just say "yes" to simplify their lives) just raise health care costs. By requiring this signature you take up the doctor's time and it's harder for you to compare and get things done.
This seems like regulation for the sake of regulation to me.
Re:Doctors contribute to government corruption. (Score:5, Insightful)
Likewise if a family member has such symptoms or his side of the family has these traits, genetic testing is disallowed unless the person actually agrees to it. I.e. a wife wants to know if her husband has Huntington's, she cannot force him to take a test or bring a sample to a physician and ask for it to be tested. Even if she only wants the information for future conception, the doctor won't allow it.
What's to keep someone - anyone - your wife, boss, insurer, whoever, from taking that toothpick you used after lunch and sending it in to one of these companies?
I think the law is intended to protect YOU from others, not from yourself. If you actually have some problem then you can go to a physician and have total confidence that the only person who will know the result is you and him. Hell, you can even withhold it from him if you wish. As it is now a person can send in ANYONE'S DNA and get their result.
I'd rather go to a doctor than leave that second option as a possibility. That's the option that leads down the road to real Gattaca-style shit. It's a future I'd rather NOT live in.
Parent
Re:Doctors contribute to government corruption. (Score:5, Funny)
Please, that will never happen. You're just being paranoid. And of course, such irrational paranoia is exactly the type of behavior I would expect, given that you have a repeating ATTCAGGGATTAG sequence on your chromosome 3, which results in a 500% increase in the risk of developing paranoid schizophrenia.
Parent
Re: (Score:3, Insightful)
If you actually have some problem then you can go to a physician and have total confidence that the only person who will know the result is you and him. Hell, you can even withhold it from him if you wish.
RRRRRight.
With all the paperwork for insurance companies (both your health insurance and the doc's liability insurance) nobody takes your privacy seriously in the medical profession. Sure they claim to adhere to HIPPA, but that's not the same thing. True privacy would mean that:
1) The fact that you requested a test is never recorded
2) The sample being tested is not associated with you in any way
3) The results of the test are not recorded with any identifiable information
4) You can retrieve the results wit
Re: (Score:3, Insightful)
While this _would_ increase the number of office visits, it's likely that it would not generate a great deal of revenue, since it would likely be coded at the lowest level.
I know a number of primary care physicians, and this just isn't the type of visit that they would try to encourage. Furthermore, most physicians I know (IMHO all responsible ones) would discourage unwarranted genetic testing, as well as any other type of medica
Re: (Score:3, Interesting)
Re:Doctors contribute to government corruption. (Score:4, Insightful)
It's a case of balancing the risks against the rewards. Sure you might find it interesting, but a lot of people will get tests which are often meaningless medically and which they will base lifestyle or health choices on.
I'm not sure on which side of the argument I'm on at the moment, but I'm very nervous about the prospect of people selling tests for disease genes without any requirement for evidence of the disease-gene interaction, and for the correct information for the implications to be supplied to customers.
Would you like to know your SORL1 genotype? What if I told you it was possibly liked to Alzheimer's disease? What if I told you it was definitely liked to young onset Alzheimer's disease, but I was lying? Would you like your wife's genotype? How would you interpret the information? I understand the intellectual curiosity and freedom points of view but this can do harm as well as good.
Parent
Re: (Score:3, Insightful)
Re: (Score:2, Insightful)
If you don't think people would shit in their own drinking water, read a history book.
Maybe it's actually a good thing (Score:5, Insightful)
Re:Maybe it's actually a good thing (Score:5, Insightful)
Perhaps what should be banned is accepting DNA samples indirectly.
Parent
Re: (Score:2, Insightful)
I would hope that's all ready banned. The question is how to enforce that. I would prefer the onus of accountability to be on the DNA analyzing company rather than a doctor, so I think the law could be better in that respect.
Re: (Score:2)
And how are we to know if a company is violating someone's rights? If someone has given them a sample under false pretenses, they have no way of actually knowing whether or not they're testing who they think they're testing. It seems to me the most logical third party to take the samp
Re: (Score:2)
Re: (Score:2)
I do support this, in some ways. (Score:5, Interesting)
What kind of crap is this? So, basically, I could collect the saliva (Don't ask how) of various people I know, send it in, and have ready access to their genetic information? HIPAA should be all over this like white on rice. With no actual strong safeguards on this stuff anyone could theoretically easily gain access to your genetic profile.
A better solution is to be able to do it freely, you actually have to show up at the lab and be able to certify you are who you say you are. Perfect? No, but better than how it was being done.
Re:I do support this, in some ways. (Score:5, Insightful)
Say, for instance, your employer were able to collect you DNA. How is immaterial at the moment. Your company does this, and gets you profiled. Uh-oh, high risk for cancer. So they fire you so their insurance premiums won't go up. Also, can you imagine how much that information is worth to your insurance company?
Yes, there are already some laws on the books against genetic discrimination, but a lot of places don't have to tell you why they fired you, and if you didn't know they got the DNA...
Besides, it's just plain a privacy issue. My DNA is my business. Not yours. However, with the mail-in DNA testing, if you were to get some of my DNA, you could find out what's in my DNA. Why do you think you should have that right?
Parent
Re:I do support this, in some ways. (Score:4, Insightful)
If you're a bad driver, should you not be charged more for liability insurance. If you've a genetic redisposition towards an expensive for of cancer, should you not pay more for the that? If you've have a genetic condition that carries the certainty of expensive treatment, then insurance isn't even relevent, you need a budget (or charity) not proection against risk.
Why people what to conflate health insurance and charity is beyond me - insurance companies are just about the worst possible choice as charity providers.
Parent
Re: (Score:2)
I do, however, agree. The insurance situation in this country is beyond FUBARed. Of course, it's like that in a lot of countries. The biggest problem is health insurance in particular. Frankly I'm not sure how we could make it better. Japan, for instance, has pretty much all private practices, and health care is cheap as dirt, but that's because all treatments are strictly price-controll
Re: (Score:3, Insightful)
To be fair, I don't think I said anything about medical care being an inalienable right, but was taking the premise of your analogy and illustrating what, to me, was a particularly sizable disparity. Choice is a huge differentiating factor there, though one could argue that it might well be irrelevant (which you've done quite cogently).
I think there are plenty of arguments to be made for medical care being a right insofar as it's a requirement for the support
Re: (Score:3)
You can get a card from the government that gives you access to a system that functions as a government-run HMO. It's exactly as bad as you'd expect from combining "government" and "HOM", but that's the secret of its success. Getting any care requires a lot of waiting in long lines, but that care is almost always free. The burden on the taxpayers is quite low, because no one is going
No (Score:2)
Not just with genetic testing (Score:5, Informative)
Heck, in a few states (Cali included) we can't even send the client their report, we have to send it to the doctor's office.
I am pretty sure this law is in effect partially to protect the interests of the doctors in general.
I am trying to see the other side of this issue... (Score:3, Insightful)
Self Testing? (Score:2)
Let's say if I have some near-future technology or perhaps today a biochemist friend or two, would the law keep me from running a genetic test on myself?
Really, how long before a home test becomes viable? After all, one can already do this [utah.edu] at home.
The Nanny State Strikes Again (Score:2, Insightful)
I live in CA and I do want a safety net, but not a nanny state.
Genetic Law Just Signed? (Score:2, Insightful)
Duh? (Score:2, Insightful)
I don't want people testing my DNA without my consent. When you involve a doctor, you add a barrier against unscrupulous people. Presumably, a doctor will take the sample themselves before sending it off. No worries about someone finding my hair and
Of course, it will be done anyway, just like when people cheat drug tests. And of course, there are unscrupulous doctors, too.
The fact that the law is there is a good thing. If someone steals a sample of my DNA, has it checked, and finds out
Why should we expect otherwise? (Score:3, Interesting)
The state (sub federal government) doesn't want you self reliant. If you are then your not beholden to them or subject to their regulation. They foster an entitlement mentality and that of reliance on government by stepping in the way of any private attempt to get the job done. My own doctor refuses new patients covered by government health agencies because the paperwork and forced low fees make even the most virulent HMO look better.
Don't worry, pretty soon besides not being able to own your own dna you won't even get to pick the doctor who does. worse, many of the people you know will happily go down that road because its one less thing they will have to be responsible for. laziness and lack of self reliance are the truest ways we lose our freedoms
Re:What's the alleged good reason... (Score:4, Insightful)
Because it would be very easy for me to collect saliva from someone whom I know in real life, and run tests on their DNA without their knowledge or consent. Also, there is a desire to prevent coersion towards that same goal.
Parent
Re: (Score:2)
How do you propose to measure my weight without my discovering it? I assure you that your proposed scheme is more difficult then collecting some of my saliva. Also, what does my weight tell you, compared to my DNA?