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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.
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.
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.
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.
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.
Your ad here. Ask me how!
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?
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.
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.
'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?