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California Cracks Down On Genetic Testing
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.
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.
Badass Resumes
There have been a lot of initiatives like this that are designed to make money for doctors.
http://www.memory-alpha.org/en/wiki/Eugenics_Wars
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.
...behind those restrictions? Do you also need a permission to measure your weight, or to look in the mirror?
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.
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.
Bow before my sig, for it is good.
so now we have the GIAA Genetic Industry Association of America to worry about
thanks dude!
Sorry about the writing. Robot fingers, you know? Cliff Steele in DOOM PATROL #23
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.
[insert generic slashdot meme]
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.
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?
May the Maths Be with you!
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?
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 at home.
Read my Very Short "Stories"
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 I'm vulnerable to Kryptonite, I'd like the legal ability to sue for damages and possibly suppress that information.
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.
The Kruger Dunning explains most post on
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.
The Christian religion has been and still is the principal enemy of moral progress in the world. -- Bertrand Russell
At least making the "product" freely available is a lot more enjoyable.
Unfortunately the "process" is more difficult... at least for most posters here.
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
* Winners compare their achievements to their goals, losers compare theirs to that of others.
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
Prediction: The real iPhone killer is going to be sex robots from Japan. Think about it.
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...
Mit der Dummheit kämpfen Götter selbst vergebens
I thought it was the Genetic Nomological Association of America, or GNAA .... they have been causing trouble around here for a while.
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.
Squirrel!
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).
Loose lips lose spit.
to the sweat of his brow?
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.
.....I can most assuredly state that I would not exist. My entire family on my father's side would have been wiped out.
My Grandfather was a German Jew. The ONLY reason he survived the War/Holocaust was due to the fact that he didn't fit the standard physical description, or have any easily recognizable attributes that the Nazi Party had deemed indicative of being jewish.
In short, he didn't look like a Jew.
You can bet your jackboots the Nazis would have used this technology to root out every single jew they could, and it would have indicted my Grandfather, without question.
'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:
http://genomics.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?
I work at an biotech research and I don't think these "mail in" genetic testing companies are bunch of bovine feces. It takes a huge amount of work to properly run and read all of those sequences. Even with automation, it takes awhile to sort which pieces are relevant. We may have map the human genome but what each those parts of genome does is still being research so you may receive a partial story so you can be treating a wrong problem.
In short, we can match DNA sequences but not yet discovered all what they can do yet.
You or a legal gaurdian already has to sign off on most medical tests, including this one. Although your neighbor could sneakily swab your cheek and send it in under false pretenses, this would be fraud. Since your neighbor already is willing to break the law, there is little to stop them from illegally having it analyzed out of state.
Making knowledge illegal does not make it unavailable. If we outlaw self-awareness only outlaws will have self-awareness.
"The ability to delude yourself may be an important survival tool" - Jane Wagner -
At work they instituted a diversity "non-quota".
I suggested (at the staff meeting where it was announced) that the best way to up our numbers was to get everyone genetically tested and then re-institute the "one drop" rule.
That didn't go over as well as I'd hoped.
Would this also prevent Californians from using genetic markers from verifying their own genealogy? Companies like FamilyTreeDNA provide testing kits; the University of Arizona does the analysis. Those tests only look at a relatively small number of markers, none of which have any medical significance. TFA wasn't clear about the scope of the law in this regard.
I was in a child custody battle years back and my ex was making baseless accusations about my using drugs, so I went to take a drug test at a local lab-only to be told that it had to be prescribed by a doctor. I called my doctor, he phoned in the prescription, I peed in the cup and all was fine.
If people have $1000 laying around for this test, they also have $50 for a friend to ship it to them from another state express air mail.
Blocking this at the state level is pointless.
Perhaps large corporations don't want to show that living near large dioxin producing factories has altered the genetics of the residents.
What's your point? How is this law going to crack down on the Nazis or any other government from running these tests?
I don't worry about the implications of dna results on "getting health insurance" because eventually what everyone comes to realize is that health insurance offers you no real protection . The fact is as everyone who watched Micheal Moore's movie knows or who has been "covered" under health insurance and had a serious probelm is that when you have any problem that costs more than your premiums - the insurance company comes up with ways not to cover you.
The best health insurance you can buy is self insurance- put away an equivilent premium payment each month and save for the disaster.
if you get cancer or something you go broke with or without health insurance period.
so there is little reason to spend all that on premiums.
if your injury is so small that insurance companies will cover it without balking then you could have paid for it better with your self insurance premiums.
avoid emergency rooms, go to doctors who take all cash at reasonable rates, do not sign "you can share my info with ANYONE" statements (actively decline them in writing on the paper and take a cell phone photo of the paper with your refusal for your records so you can sue for millions when they take the info anyway.)
as an adult you will pay $300-$700 a month for insurnace premiums. if you put that away as saved it and chose your doctors wisely you will have more than enough to cover the average calamity - If you don't go through the "emergency room " system.
if you do have insurance and go through the emergency room system for a real emergency you will likely have deductibles and copays that will bankrupt you . This means you will now be in permanent debt slavery thanks to the credit card debt act recently passed disallowing true bankruptcy.
so frnakly knowing form dna that yes you likely are at risk for heart disease is better ifthat means you will take more active measures to avoid it.
Same for cancers etc.
Forget the whole insurance worries. Insurance will likely undergo a radical change in this country (The usa sorry international readers) in the near future anyway.
preexisting conditions will likely be the first thing legislated out of existence.
I don't think that's particularly out of the ordinary, honestly; I work in a doctor's office on the other side of the country, and any bloodwork or urine test that gets done has to have a doctor's order to go along with it. I would be incredably surprised if this didn't apply to drug tests, as well
Always pretends to be humor when called out for it ridiculousness?
His comment was stupid. The sarcasm doesn't make it less so, it just makes it sarcastically stupid.
And did it occur to you I was aware of the sarcasm but was addressing the real point behind it (whihc every piece of sarcasm has)?
Perhaps it is YOU who has no understanding of what the fuck he is involving himself in.
No, remove that "perhaps".