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California Cracks Down On Genetic Testing

kdawson posted more than 6 years ago | from the first-salvo-in-a-long-campaign dept.

Biotech 165

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 services when 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.

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Frosty Pist (-1, Troll)

Anonymous Coward | more than 6 years ago | (#23829775)

Have a nice one

You don't own your DNA (5, Funny)

Reverend528 (585549) | more than 6 years ago | (#23829791)

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.

Re:You don't own your DNA (2, Insightful)

thedak (833551) | more than 6 years ago | (#23829871)

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.

Re:You don't own your DNA (4, Insightful)

stranger_to_himself (1132241) | more than 6 years ago | (#23831137)

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.

Re:You don't own your Democrat (1)

OMNIpotusCOM (1230884) | more than 6 years ago | (#23831635)

I don't know anything about Democrats, but it could be that the government is trying to protect people from themselves and other Democrats.
There, fixed that for you.

So what? We have a right! (1, Interesting)

Anonymous Coward | more than 6 years ago | (#23831935)

Fine, close down churches based on fake scriptures, news channels distributing bogus info, astrologers and fortune-tellers and phone-psychics, misleading television commercials, and unverified Slashdot stories while you're at it.

"Protecting" may ass, asstroturfer! We have every right to access our own DNA data, with a home kit bought on the black market if need be. We'll decide our own accuracy, thank you very much. I didn't care about it until I saw your comment, but now I'm thinking of dabbling in recreational gene-tracking, just to piss you off. Maybe this could be useful in genealogy, or even heraldry.

Re:You don't own your DNA (1)

mveloso (325617) | more than 6 years ago | (#23831987)

"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"

Do you have any actual data that backs this up?

Re:You don't own your DNA (5, Funny)

MiniMike (234881) | more than 6 years ago | (#23829911)

I bet they'll want the first instance of derivative works too...

Re:You don't own your DNA (1, Funny)

Anonymous Coward | more than 6 years ago | (#23830119)

I bet they'll want the first instance of derivative works too...
The first (and probably last) truly funny "firstborn" joke in history. I salute you.

Re:You don't own your DNA (2, Informative)

commodoresloat (172735) | more than 6 years ago | (#23831279)

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!

Re:You don't own your DNA (0)

Anonymous Coward | more than 6 years ago | (#23831633)

Proof enough that the government is evil. For whom do you think they want those chil... I mean derivative works?

Re:You don't own your DNA (4, Informative)

oodaloop (1229816) | more than 6 years ago | (#23829927)

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.

Re:You don't own your DNA (4, Informative)

MightyMartian (840721) | more than 6 years ago | (#23830075)

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.

Re:You don't own your DNA (1)

lgw (121541) | more than 6 years ago | (#23830545)

I say let companies patent the entire genome. In 17 years we'll be free of this nonsense forever.

Re:You don't own your DNA (4, Informative)

WaltBusterkeys (1156557) | more than 6 years ago | (#23831315)

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.

Re:You don't own your DNA (1)

MightyMartian (840721) | more than 6 years ago | (#23831447)

Did the companies have anything to do with the creation of those sequences? If they didn't, they should have been fined for fraudulent patent applications.

Re:You don't own your DNA (1)

WaltBusterkeys (1156557) | more than 6 years ago | (#23831735)

They never claimed they created the sequences.

They claimed that they found a new procedure using them. If I were the first person to invent the Chevy El Camino ("it's a car and it's a truck") I would be able to patent the invention of a car/truck combination, even if I didn't invent wheels, headlights, doors, windshields, etc.

The only thing the patent covered was a new diagnostic test. They invented the never-before-seen diagnostic test by combining existing elements. Combining existing things is a perfectly valid form of invention for patents.

Re:You don't own your DNA (2, Informative)

garett_spencley (193892) | more than 6 years ago | (#23831887)

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% clear on this but I assume that this is different from copyright law in that it can cover the ornamental appearance of a tangible invention. To make further use of my pepperoni pizza example, you could file a design patent on the way your pizza looks so long as no other pepperoni pizzas invented prior looks the same etc. I'm sure that car companies get design patents all the time on the appearances of their vehicles.

Planet Patent - government grant given to people who discover or invent new asexually reproducing plants and lasts for 20 years. Very simplified explanation, read more at http://smallbusiness.findlaw.com/patent/patent-types/plant-patents.html [findlaw.com] if you're interested.

From what I gathered from the GP (I'm going by my interpretation of what he said, I'm not familiar with the patents themselves), the case in question was a patent on a METHOD for using specific gene sequences in a form of therapy. They weren't patenting the DNA itself.

Re:You don't own your DNA (2, Funny)

VEGETA_GT (255721) | more than 6 years ago | (#23830235)

Wiggum: What do you got, the whole town's DNA on file?

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 (1)

OMNIpotusCOM (1230884) | more than 6 years ago | (#23831663)

Right now, most of your DNA is open-source.
I think you're right, I know this because I GPL'd some of my DNA all over my keyboard last night when I found out Valve was releasing the Pyro update Thursday.

Re:You don't own your DNA -the GIAA (3, Funny)

infonography (566403) | more than 6 years ago | (#23830165)

so now we have the GIAA Genetic Industry Association of America to worry about

thanks dude!

Re:You don't own your DNA -the GIAA (1)

mudetroit (855132) | more than 6 years ago | (#23830885)

At least making the "product" freely available is a lot more enjoyable.

Re:You don't own your DNA -the GIAA (1)

irondonkey (1137243) | more than 6 years ago | (#23831003)

Unfortunately the "process" is more difficult... at least for most posters here.

Re:You don't own your DNA -the GIAA (1)

Gat0r30y (957941) | more than 6 years ago | (#23831231)

Oh man, I don't even want to know how people plan to pirate my DNA.
Unless of course instead of bit torrent they send a hot blonde

wrong acronym (1)

commodoresloat (172735) | more than 6 years ago | (#23831327)

I thought it was the Genetic Nomological Association of America, or GNAA .... they have been causing trouble around here for a while.

Re:You don't own your DNA -the GIAA (1)

fyoder (857358) | more than 6 years ago | (#23831353)

You can still have sex, but if you don't use contraception and wind up producing a derivative work, woe betide you. The GIAA will have a booth set up at all maternity wards where couples will be offered the opportunity to settle early for the bargain amount of $3,000.00 ($8,000.00 if you don't pony up right away).

But They Don't Have Rights to Use It (1)

ObsessiveMathsFreak (773371) | more than 6 years ago | (#23830253)

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?

Re:But They Don't Have Rights to Use It (1)

HJED (1304957) | more than 6 years ago | (#23830845)

The information in anyone's genetic code is said persons personal property.

what you said is like saying that your computer is not your personal property because someone else has the a similar computer

Re:But They Don't Have Rights to Use It (0)

Anonymous Coward | more than 6 years ago | (#23831847)

The information in anyone's genetic code is said persons personal property.
Great, I'll start charging my kids a licensing fee.

Here's the problem with your observation (2, Interesting)

biolysis (1303409) | more than 6 years ago | (#23830337)

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?

Re:Here's the problem with your observation (1)

osgeek (239988) | more than 6 years ago | (#23831839)

sarcasm
...

lots of distance
...

your understanding of sarcasm

Re:You don't own your DNA (1)

FatdogHaiku (978357) | more than 6 years ago | (#23830651)

OK, if some of my DNA is "owned" by someone, then I want payment for storage services I have been providing. Seven dollars per day, per copy of each gene they claim rights to... Starting at the first day of storage.

One days rent should break them, no matter who they are.

Re:You don't own your DNA (1)

HJED (1304957) | more than 6 years ago | (#23831147)

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.

I have now patented all the human DNA that separates humans from chimps if you don't want to pay licensing fees please remove it form your body! :D

Re:You don't own your DNA (1)

GuyverDH (232921) | more than 6 years ago | (#23831183)

You cannot patent something which exists in nature. This is the main reason that pharmaceutical companies ignore plant based drugs and go for deadly chemical cocktails that give side effects worse than the condition it treats.

You can, however, get a copyright on a particular sequence, if it were unique, and identified a specific variation, enhancement, cure that never existed before in written form.

There are only so many DNA sequences, which are then put together, like letters in an alphabet are used to create words, to express some variation in the final form of whichever plant/animal/virus/bacteria/etc, that the genetic code is for.

Doctors contribute to government corruption. (3, Insightful)

Futurepower(R) (558542) | more than 6 years ago | (#23829857)

There have been a lot of initiatives like this that are designed to make money for doctors.

Re:Doctors contribute to government corruption. (2, Insightful)

MBCook (132727) | more than 6 years ago | (#23829945)

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. (0)

giorgiofr (887762) | more than 6 years ago | (#23830245)

Huh? There exists another kind?

Re:Doctors contribute to government corruption. (2, Insightful)

maxume (22995) | more than 6 years ago | (#23830443)

Regulations against shitting in the creek are regulation for the sake of drinkable water.

If you don't think people would shit in their own drinking water, read a history book.

Re:Doctors contribute to government corruption. (1)

Deagol (323173) | more than 6 years ago | (#23831205)

Most citizens of industrialized nations shit in their drinking water. The flush toilette is evil. So are lawns, for that matter. But make no mistake about it -- every flush of your crapper is 1+ gallons of water that someone could otherwise drink. Pretty lame, eh?

Re:Doctors contribute to government corruption. (1)

stranger_to_himself (1132241) | more than 6 years ago | (#23831693)

If you don't think people would shit in their own drinking water, read a history book.

..or visit London.

Re:Doctors contribute to government corruption. (5, Insightful)

Robert1 (513674) | more than 6 years ago | (#23830347)

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.

Re:Doctors contribute to government corruption. (4, Funny)

flyingsquid (813711) | more than 6 years ago | (#23830833)

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.

Re:Doctors contribute to government corruption. (1)

HJED (1304957) | more than 6 years ago | (#23831083)

That is just another extream getting a doctors note (not getting the doctor to do it, just getting the note) dose not prove the DNA is yours and thus has nothing to do with getting a note.

Re:Doctors contribute to government corruption. (2, Insightful)

Jherek Carnelian (831679) | more than 6 years ago | (#23831499)

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 without disclosing any identifiable information

All of these sound relatively easy to do, but just try it. Go to a doctor, tell them you want to pay cash for such a test (or any test, like even for strep throat) and that you want to remain anonymous (and no you can't just lie about your identity, that's just avoiding the problem, not eliminating it). 99% of them will treat you like a bug-eyed martian, the other 1% will understand your concerns but will say that they just aren't set up to provide absolute privacy.

Remember folks, if its written down, it can be disclosed. What's against the law to disclose today may not be against the law tomorrow and what is against the law today can be waived voluntarily (job interview, they want your medical history, you need a job so you waive your right to privacy, when the choice is between starvation for you and your family 'voluntary' is really mandatory) nor can any law of man prevent 'accidental disclosure.'

Re:Doctors contribute to government corruption. (1)

jmichaelg (148257) | more than 6 years ago | (#23831927)

"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."

I think you have it backwards. I was deficient in B12 a few years ago and suffering memory problems as a result. While my doctor and I were talking about possible causes, she was taking notes on an insurance form. She said, "If I mark 'memory problem' on this chart, it'll follow you the rest of your life." so she marked fatigue as the reason for the blood tests.

A private genetic test would be just that - private from your insurer. Granted, you don't want people prying into your genetics but you at least should be able to decide without someone vetting your reasoning.

Re:Doctors contribute to government corruption. (2, Insightful)

bperkins (12056) | more than 6 years ago | (#23830445)

(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 medical tests that don't have a lot of evidence behind them as being useful for patient outcome. This is _not_ the type of thing a physician wants to deal with; trying to talk people out of things they are dead set on is annoying.

Genetic screeners are essentially selling snake oil by selling directly to consumers. I'd probably not go so far as California in stopping them, since in the end they'll just be encouraging greedy physicians to set up specialized practices where they can charge an arm and a leg to have the tests ordered. However I think California is right to try to protect consumers from this type of nonsense.

Re:Doctors contribute to government corruption. (2, Interesting)

cduffy (652) | more than 6 years ago | (#23830693)

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)... WTF's wrong with that?

$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?

The known portion of my family tree doesn't go back very far; I'd also be interested to have an idea of what populations my ancestors came from. Why prevent me from finding out?

Re:Doctors contribute to government corruption. (1)

Chosen Reject (842143) | more than 6 years ago | (#23830855)

I agree with you in principal and had the same thoughts when I first heard this story. However, another poster above you [slashdot.org] mentioned that perhaps they aren't trying to stop you (especially as you shouldn't be stopped) but maybe they are trying to stop your boss, or your insurance agent, or what have you. Put into that perspective, it makes more sense.

Re:Doctors contribute to government corruption. (2, Insightful)

cduffy (652) | more than 6 years ago | (#23830927)

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.

Re:Doctors contribute to government corruption. (1)

delysid-x (18948) | more than 6 years ago | (#23831163)

Why shouldn't your insurer have the full details on your medical history/future?

Re:Doctors contribute to government corruption. (1)

MightyMartian (840721) | more than 6 years ago | (#23831539)

Medical future? WTF is that? DNA is not a crystal ball.

Re:Doctors contribute to government corruption. (1)

cduffy (652) | more than 6 years ago | (#23831827)

I said "surreptitiously", you know.

Re:Doctors contribute to government corruption. (3, Insightful)

stranger_to_himself (1132241) | more than 6 years ago | (#23831307)

$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.

Re:Doctors contribute to government corruption. (0)

Anonymous Coward | more than 6 years ago | (#23831721)

I understand the intellectual curiosity and freedom points of view but this can do harm as well as good.
And this is the very basic Liberal/Conservative split: whether potential harm is sufficient to outlaw potential good.

I'm not sure
Stay that way. The world needs fewer polarized opinions.

Re:Doctors contribute to government corruption. (1)

scipiodog (1265802) | more than 6 years ago | (#23830611)

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.

Huh? How is this even a quarter-decent argument?

So what if I want to take my DNA test data, and develop my own Broccoli cure for my 1% chance of developing toe cancer?

That is an example of what I find most odious and offensive in the gospel of the "protect people from themselves!" crowd.

We cannot postpone this, LOL! (0)

Anonymous Coward | more than 6 years ago | (#23829909)

http://www.memory-alpha.org/en/wiki/Eugenics_Wars

Maybe it's actually a good thing (5, Insightful)

locallyunscene (1000523) | more than 6 years ago | (#23829937)

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.

Re:Maybe it's actually a good thing (4, Insightful)

MightyMartian (840721) | more than 6 years ago | (#23829989)

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.

Re:Maybe it's actually a good thing (2, Insightful)

locallyunscene (1000523) | more than 6 years ago | (#23830411)

"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.

Re:Maybe it's actually a good thing (1)

MightyMartian (840721) | more than 6 years ago | (#23830541)

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 sample is a doctor.

Re:Maybe it's actually a good thing (1)

ChilyWily (162187) | more than 6 years ago | (#23830853)

So what's to prevent a doctor from abusing this system by colluding with those who stand to benefit from unauthorized access to such information?

Re:Maybe it's actually a good thing (1)

MightyMartian (840721) | more than 6 years ago | (#23831013)

So what's to prevent a doctor from abusing this system by colluding with those who stand to benefit from unauthorized access to such information?


Jail time, fines, the loss of his or her license.

Perhaps if corporations and their shareholders were more directly responsible, I'd be willing to give them the benefit of the doubt, but as it stands, I'd trust a doctor a helluva lot more than corporate governance.

Perhaps if fines for this sort of thing were in the order of 50% to 60% of gross earnings+assets, I'd say "Hey, we'll leave it up to the companies".

Re:Maybe it's actually a good thing (2)

locallyunscene (1000523) | more than 6 years ago | (#23831085)

You can't prevent people from doing bad things, you can only set up barriers and enforce punishments.

Re:Maybe it's actually a good thing (1)

locallyunscene (1000523) | more than 6 years ago | (#23831073)

"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."

Unless, as you said, samples cannot be sent indirectly. If the company has to cheek swab you directly to get the DNA, well they know it's your DNA whether you use your real name or not.

Re:Maybe it's actually a good thing (1)

HJED (1304957) | more than 6 years ago | (#23831209)

nay the most logical party to take the sample is the person who is going test it FACE 2 FACE with the owner of the DNA problem solved.

And guess who is responsible for getting someone else's DNA tested...


you are!

Re:Maybe it's actually a good thing (1)

oodaloop (1229816) | more than 6 years ago | (#23830009)

Yeah, maybe if your neighborino was as coop-diddly-operative as Flanders. My neighbor sure wouldn't let me swab his cheek.

Re:Maybe it's actually a good thing (1)

Actually, I do RTFA (1058596) | more than 6 years ago | (#23831611)

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.

Also, with a doctor involved, HIPPA would apply, and all the mandatory privacy laws that accompany that. I don't know about non-medical DNA testing.

And, IANAL, this post is not legal advice.

What's the alleged good reason... (1)

Katatsumuri (1137173) | more than 6 years ago | (#23829961)

...behind those restrictions? Do you also need a permission to measure your weight, or to look in the mirror?

Re:What's the alleged good reason... (3, Insightful)

Actually, I do RTFA (1058596) | more than 6 years ago | (#23830261)

...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.

Re:What's the alleged good reason... (1)

zmjjmz (1264856) | more than 6 years ago | (#23830451)

It'd also be quite easy for me to measure their weight. What's your point?

Re:What's the alleged good reason... (1)

Actually, I do RTFA (1058596) | more than 6 years ago | (#23830757)

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?

Re:What's the alleged good reason... (1)

HJED (1304957) | more than 6 years ago | (#23831265)


how much you eat OR how strong you are :D

I do support this, in some ways. (4, Interesting)

Paranatural (661514) | more than 6 years ago | (#23830033)

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.

Re:I do support this, in some ways. (1)

anmida (1276756) | more than 6 years ago | (#23830231)

That's a good point that it is probably not the best to be able to check out everyone's DNA without them knowing. If that were done, it would be a severe violation of privacy. However, it is ridiculous that the state feels that it must be involved to the point that it (by way of doctors) is the one that can tell you/allows you when you can and cannot get your own DNA tested. It's your personal, defining data and you have a right to know what's in it, no ifs, ands, or buts. What next, they tell you when you are allowed to gift some sperm to your wife?

Re:I do support this, in some ways. (1)

sexconker (1179573) | more than 6 years ago | (#23830809)

Surely you jest, but if a law were on the books stating that a man must give signed consent for his sperm to be used for conception, there would be a lot fewer problems.

Such a law would have no PHYSICAL effect, but it would draw a legal line in the sand between accidents and sabotage (tampering with condoms, lying about birth control, etc). That line will effectively be drawn when a male hormonal contraceptive finally makes it to market - it's illegal to tamper with someone's prescription meds.

Re:I do support this, in some ways. (0)

Anonymous Coward | more than 6 years ago | (#23830321)

Please tell me, why exactly is this an issue?

Everyone everywhere leaves their genetic information all over the place, it's already common knowledge even if we don't all have the technology to read it yet...

Re:I do support this, in some ways. (4, Insightful)

Paranatural (661514) | more than 6 years ago | (#23830511)

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?

Re:I do support this, in some ways. (3, Insightful)

lgw (121541) | more than 6 years ago | (#23830695)

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.

Re:I do support this, in some ways. (1)

Paranatural (661514) | more than 6 years ago | (#23830795)

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-controlled by the govt. Doctors there tend not to be very well-paid. Still, there seems to be enough of them.

Re:I do support this, in some ways. (1)

lgw (121541) | more than 6 years ago | (#23831423)

The answer seems straightforward: let people pay for their own health insurance. People are far more choosy about results/price than companies are. Create a "universal health charity" system, so that the poorest few% can still get healthcare - but run it as a charity system. Standardize the *paperwork* required to make an insurance claim on the medicare system, as this will cut nearly 1/3 off healthcare prices, amazingly enough. Government-imposed commerce standards (much like standardizing "one ounce") can be a good thing.

Re:I do support this, in some ways. (1)

hiryuu (125210) | more than 6 years ago | (#23831619)

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?

The flaw in that particular argument, as I see it, would be that driving is a choice, while having been conceived/born is not. If you drive badly because of poor skill or simply bad behavior, that can be addressed by the choices you make (defensive driving lessons, anger management, staying off the road). What choice did you make about which egg was released, which sperm found it, and when it occurred?

Not to mention the very fundamental difference between a privilege (driving) and an inalienable right (life).

No (1)

Weezul (52464) | more than 6 years ago | (#23830883)

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.

Re:I do support this, in some ways. (2, Insightful)

1 a bee (817783) | more than 6 years ago | (#23831143)

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.

Nice proposal: the part about actually having to show up at the lab. This makes it somewhat harder to spy on other people's genetic information.

The second part of parent's proposal, though, I think should be the exact opposite: the lab shall not require the identity of the customer. That way, only you have the power to attach a name to your genetic data.

Re:I do support this, in some ways. (1)

Paranatural (661514) | more than 6 years ago | (#23831335)

I don't know that that would work very well. The thing is, genetic testing isn't quick, it takes a while. You can't exactly get the results while you wait, as I recall. So they'd need a confidential way of giving you the results. It's hard to do that without knowing who you are. Also, I believe pretty much every medical facility is required by HIPAA to keep records on everyone they 'treat'. Can't do that if they don't identify themselves.

Re:I do support this, in some ways. (1)

1 a bee (817783) | more than 6 years ago | (#23831675)

I don't see the problem. They give you a number or a receipt. Couple of days later you show up with your receipt and get the results from the lab. (?)

As for what HIPAA current requires, that's besides the point. We're discussing a proposal here, not the status quo. :-)

What's your motivation? (1)

Regolith (322916) | more than 6 years ago | (#23830163)

One must wonder whether this is primarily targeted at simply disallowing all individuals to screen their own genes (i.e., identifying risk via genetic predisposition), limitation of moronic interpretation (i.e., Joe Retard committing suicide because he thinks he HAS PROOF that he is going to get Parkinson's, Alzheimers, rare cancer #52, etc.) or privacy concerns (i.e. a date, fiancee, boss/coworker deciding to run a genetic profile for you on the sly utilizing said "drops of saliva".) I've heard rumors of psychotic individuals of both genders doing similar things to prospective partners (seems equivalent to slipping a roofie), so this might not entirely be a bad thing. It mainly depends on scope and practical intent. I don't believe that individuals should be prohibited from actively managing their own health, but limiting nefarious purposes and the proliferation of "armchair M.D.s" could make this a positive move.

Not just with genetic testing (5, Informative)

sammaverick (771437) | more than 6 years ago | (#23830183)

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.

You're company is the problem. (0, Flamebait)

geekoid (135745) | more than 6 years ago | (#23830737)

This is in place to protect the consumer, and it should be.
Look at all the crap being passed off as legitimate when it isn't, homeopathy, 'miracle cures'. The consumer is bombard with crap that at best does nothing.

Medical protection my ass.

How do you know the person whose name is on the paper is the person who made the request?

I know exactly why your company doesn't like it, it wants to make money from corporation testing the employees.
Add to that your support of passing off non-medical unproven methods for 'living younger' puts you guys right down there with dowsers and spoon benders.
You fucks.

Re:You're company is the problem. (0)

Anonymous Coward | more than 6 years ago | (#23831363)

GP is right. Doctors lobby for medical regulations to drive business. If everyone that wants a simple non invasive test like this done has to go in for an appointment with a doctor then they make more money. It is as simple as that and it has nothing to do with your health.

Hmm? (1)

denzacar (181829) | more than 6 years ago | (#23831235)

Does your company fall under doctor-patient confidentiality or would I or a police officer or just anyone off the street who is willing to ask - be able to get the information?

I am guessing that your company does not have any such system of protecting your clients privacy and information.
Doctors on the other hand... [enotes.com]

Re:Hmm? (1)

khallow (566160) | more than 6 years ago | (#23831701)

I didn't think of that. But it wouldn't be that hard to acquire saliva or other DNA samples from someone. That's priviledged medical information.

I am trying to see the other side of this issue... (3, Insightful)

cortesoft (1150075) | more than 6 years ago | (#23830251)

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.

Self Testing? (1)

TheLazySci-FiAuthor (1089561) | more than 6 years ago | (#23830609)

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.

The Nanny State Strikes Again (2, Insightful)

GeeBee (104073) | more than 6 years ago | (#23830625)

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.

Genetic Law Just Signed? (2, Insightful)

DarkMage0707077 (1284674) | more than 6 years ago | (#23830713)

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.)

Re:Genetic Law Just Signed? (0)

Anonymous Coward | more than 6 years ago | (#23830969)

I doubt it had anything to do with the *Rights* of the people. If it can make money for companies, then yes - it was probably legislated and signed.

Duh? (2, Insightful)

sexconker (1179573) | more than 6 years ago | (#23830733)

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 I'm vulnerable to Kryptonite, I'd like the legal ability to sue for damages and possibly suppress that information.

Why should we expect otherwise? (2, Interesting)

Shivetya (243324) | more than 6 years ago | (#23831161)

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

Now I'm worried (1)

Tired and Emotional (750842) | more than 6 years ago | (#23831333)

The comparison with strong encryption has me worried. I am reminded of the tee shirt that was a "munition" because it had a perl script for string encryption printed on it.

So does this mean if I try to cross the border with saliva on my tee-shirt they are going to arrest me? Some of us could be in trouble here.

Is a man not entitled... (1)

Draped Crusader (1174049) | more than 6 years ago | (#23831915)

to the sweat of his brow?
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