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California Considers DNA Privacy Law
ananyo writes "California lawmakers are weighing a bill aimed at protecting their state's citizens from surreptitious genetic testing but scientists are voicing their growing concerns that, if passed, such a law would have a costly and damaging effect on research. The bill, dubbed the Genetic Information Privacy Act, would require an individual's written consent for the collection, analysis, retention, and sharing of his or her genetic information—including DNA, genetic test results, and even family disease history. The University of California has submitted a formal letter objecting to the bill, estimating that the measure could increase administrative costs by up to $594,000 annually — money which would come out of the cash-strapped state's General Fund. The university has also expressed concern that its researchers would suffer competitive losses in obtaining research grants."
The bill, dubbed the Genetic Information Privacy Act, would require an individual's written consent for the collection, analysis, retention, and sharing of his or her genetic information
This just made sex a whole lot more complicated.
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Too bad for them people's rights can be so inconvenient and costly. Oh well.
The Invisible Hand of the Free Market is what punches workers in the nuts.
Seriously that's like chump change to the UC system...
Does that mean gattaca is a lie?
They should go one further and replace "uniquely identifying" DNA testing of criminal suspects with "just enough DNA to exclude the suspect" tests, repeated as needed with different parts of the DNA until the suspect is cleared or it's really his DNA.
Instead of testing a few dozen markers all at once and keeping that data on file, test only one or two. If it's a match, test another marker or two, and so on. Stop and cut the guy loose as soon as you find a mis-match.
Not only is this more morally justifiable than taking a full DNA "fingerprint," it will cut down on people who object to having DNA taken because they either know or believe they have left DNA at a place where a crime occurred in the past (even if they didn't commit any crimes) or they believe they are likely to do so in the future.
Also, change arrest-expunction laws for those who aren't convicted so that once the case is closed OR once it's obvious that the state isn't still looking at a given suspect, his DNA, fingerprints, etc. are automatically destroyed, without the former suspect having to hire a lawyer or pay fees to make it happen.
Knowledge is how to play a game, intelligence is how to win, wisdom is knowing what game to play.
If it costs them more than 10% of that, they're not handling it right.
"10 of 9 comments loaded"
WTF?
Knowledge is how to play a game, intelligence is how to win, wisdom is knowing what game to play.
They're a university. By law, they must go with the highest bidder, then spend twice as much money implementing it themselves when the bid doesn't go through, and then after that, they have to give a share to the sports team.
Basketball is the big one at UCLA, lots of hoops to shoot through.
Where else will the politicians get graft going, if not through education? The voters love more money in education. Just check the testing requirements! Billions and billions spent, not one honest answer.
But it's all accountable! (Which means they hire lots of accountants to track the numbers!)
"a costly and damaging effect on research." ... in other words, the universities' and drug companies' current business models of "take peoples' medical samples and information under the pretense of promoting human well-being through research, and monetize that into products bringing in huge amounts of money" is threatened. Oh, and any information they derive about you goes to the insurance companies, via the Medical Information Bureau.
Seriously that's like chump change to the UC system...
Congratulations. You just re-affirmed how a state can manage to get over $600 billion in debt. Like my old boss used to say, a million here, a million there...pretty soon, we're talking about real money.
Don't forget that 500k only seems like a lot to a individual. 500k to the 7th largest economy in the world (go Cali!) is negligible.
In perspective:
Thats the cost of 7 (maybe less) UC bachelors degrees.
On the national news scale... 12 million on DOJ muffins? Negligible. 300 BILLION on a new fighter jet when we already rock. 100:1 DR? Absurd.... and yet thatsnot as newsworthy as muffins....
>"would require an individual's written consent for the collection, analysis, retention, and sharing of his or her genetic informationâ"including DNA, genetic test results, and even family disease history."
Unless, of course, it is the government taking the samples on people just ACCUSED of a crime. And that information will never be wiped and will be stored and forwarded to every shady agency that wants it..... in the name of keeping us safe from terrorists. Just like fingerprints.
Doesn't matter. Such legislation would never pass, and even if it did, it is just California and has nothing on the Fed.
Frikkin smartphones....
It should say "...rock a 100:1 KDR..." thats kill to death ratio for non gamers...
DNA is known to the State of California to cause cancer and birth defects or other reproductive harm.
I have to ask why written consent is going to cost the university $594,000 annually. Surely, one of their law students could draft a consent letter to be reviewed by a practicing lawyer - maybe one already on staff. That should only cost a few hundred dollars - maybe a couple of thousand if the lawyer is famous and expensive. Then there is the cost of a filing cabinet to store the letters. Maybe paper for photocopies. And Say 15 minutes per client in time to print, collect the signature and file the document. Surely that can not cost more than $10,000 a year. If it was run by a government, I could see it a little higher, but not 60 times that amount.
Frikkin smartphones....
It should say "...rock a 100:1 KDR..." thats kill to death ratio for non gamers...
Smartphones were framed. It's proofreading's fault!
It depends on how many samples they are handling. Assume that 10 forms can be processed per hour. (Between contacting the individual, getting it signed, scanning and filing.) Assume staff cost $10/hour. That is a mean cost of $1/sample. Need a large sample for statistical purposes and the costs will mount. This estimate is also low balling it. Staff costs will be at least double. Even paying near minimum wage still involves payroll taxes. The processing time assumes permissive donors who need minimal explanation. Auditing records for compliance, auditing research for compliance, and administrative overhead to access those records were not included in my estimate. So yes, regulations are costly.
It depends on how many samples they are handling. Assume that 10 forms can be processed per hour. (Between contacting the individual, getting it signed, scanning and filing.) Assume staff cost $10/hour. That is a mean cost of $1/sample. Need a large sample for statistical purposes and the costs will mount. This estimate is also low balling it. Staff costs will be at least double. Even paying near minimum wage still involves payroll taxes. The processing time assumes permissive donors who need minimal explanation. Auditing records for compliance, auditing research for compliance, and administrative overhead to access those records were not included in my estimate. So yes, regulations are costly.
Yeah. All of that, just to avoid giving you a license to take someone's DNA information against their will and probably without compensation, even though you plan to benefit in some way from doing it. The nerve! In fact, anyone I select should be forced to submit to me anything of theirs that I decide I want, however intimate and personal. Otherwise, why, we might not be able to cut corners and forgo all those expensive "ethics" and shit when we do some research. Clearly you see the dilemma.
So it should be obvious, we must oppose a DNA privacy law. If such a law gets passed, the terrorists win! We can't have people thinking that you need their consent to harvest whatever you like from them.
It is a miracle that curiosity survives formal education. - Einstein
California's debt can be laid at the hands of one thing.
The ballot box. The people vote for things, they vote not to pay for them.
Yay?
So, to paraphrase: "Let's not protect peoples' rights! It will cost us money! And it will come out of the general fund! WAAAAAAH"
Gimme a break. California will *always* want more money, will always be strapped for cash, and sacrificing morality for expediency is an argument that could be used to avoid all responsibility and fairness.
Balance your budget, reduce your spending, and grow some backbone. Let your people live in privacy and safety.
You can't process 10 forms per hour.
First, you often can't find people. There was an article in the New England Journal of Medicine by a doctor who made the point that it's often impossible to find patients, once they walk out the hospital door. The hospital had treated an infant, then afterwards somebody decided that there was a slight possibility that the infant had a life-threatening but treatable condition. They called the cell phone number the mother had given in her hospital intake, and it was disconnected. She had given the name of somebody to call in case of emergency, and that number didn't work either. With the end of landlines, it's much harder to find people. They frantically tried to track her down, and finally found her because of a lucky break.
Then there's the problem that when you're researching fatal diseases, the people you're trying to find are often dead. So they can't give permission.
Their relatives often move. Sometimes a doctor calls them and they just don't want to talk about it any more.
A lot of people don't want strangers to track them down, so they make it difficult. A lot of people are worried about debt collectors (often because they have big unpaid medical bills), process servers, police, immigration authorities, etc. So when you call somebody's mother, she may not want to give the person's new address.
Furthermore, it's not just a matter of calling up and getting permission on the phone. It has to be in writing. Does the signature have to be witnessed? Notarized? What do you do, send a witness over to their house with a notary?
It has to be informed consent, so you can't just have a minimum-wage clerk do it, you need somebody to explain the risks and benefits.
You could wind up spending more money getting permission than you do on the actual tests.
One of the big problems with getting permission is that you get a biased sample. For example, the people who are dead can't give permission. So you might wind up getting the DNA sequences of people with a less aggressive disease.
Research subject consent and the associated paperwork is already required by ethics rules that are strictly enforced in US. I am not aware of signal study in US that does not do that. In fact the US government and all private sponsors of research that I know of will not fund such studies. From what I see most of the law is just formalizing the status quo. The only silly thing is the requirement that only people named in the original consent from will be allowed to access the information. I am sure that this will be ironed out before the law goes into effect. Usually there is tiered access to such data that allows data that can not directly identify a person to be shared, while protecting information that can harm the privacy of the individual. My guess is that the bill is aimed against 'ancestry' web sites that also offer genetic testing and can do as they please with your genetic information according to their typical EULAs.
I'm the anonymous coward that you're responding to. I agree with your sentiment, albeit not with your tone. What I was pointing out is that the costs are not trivial. Since I also have a bias towards pure research, I also believe that accommodations need to be made, not so much because of the profit motive, which is a nonissue IMHO, but because of abuses (e.g. insurance, employment, patents).
Yep. It's way less than they pay their president (~ $800K including perks)
Insurance companies would love to get their hands on this data. Got the genetic tendency for a form of cancer it doesn't matter if you never develop it your rates will go up or better yet you get canceled without notice.
Mitt, you have to have *something* better to do than troll slashdot, don't you?
Did they try to contact the child's father? Oh wait, fathers don't have rights and most of them don't have any sense of responsibility.
the issue here is NOT about having DNA on file, it's having DNA on file that can be associated with an individual. having tons of DNA data with a full medical history's for each sample would be super awesome for research. research doesnt need names of people, just information/associations with other real world factors. however, if you can be associated with a particular sample then there are a lot of bad guys out there (and good guys with bad ideas) that would love to get their hands on that kind of information.
i'm not ok with the government having DNA on file in a way that gives a direct association. so having DNA_Sequence=Plummer_Joe is bad. what i am ok is with them storing a hash result using my DNA as a key. HashFunction(DNA_Sequence)=9je4H2 and Plummer_Joe=9je4H2 is ok. that way if they actually have DNA (evidence), they can look people up but they cant get DNA arbitrarily.
also, "asking" for DNA by a company should be as illegal as the whole facebook password thing. as a precaution, i'm deleting my DNA.
it's just too bad that the only thing a politician will understand about a hash is that they "didnt't inhale"
Anons need not reply. Questions end with a question mark.
Nearly all the posts so far are about research use of genetic information. Research data should be responsibly anonymized, but privacy standards for corporate and government (read: law enforcement) use of individuals' DNA samples should be much more strictly regulated.
I don't mind if my DNA is used for medical research, even non-anonymously, but the though of it being used by insurance companies or law enforcement is infuriating.
.: Semper Absurda
The "individuals" named on the consent form will be companies, not "natural persons", so we'll have companies whose sole purpose is to be traded between the other companies or research groups who want access to the genetic information.
U of C is entirely correct that, as written, the bill would offer zero privacy protection while adding to administrative costs to manage those shell companies. For the bill to offer real protection it would have to prohibit individuals from giving anyone other than specifically named natural persons permission to access their genetic information. Legally establish that it is "against the public interest" (like prenuptial agreements that agree never to seek a divorce) to allow individuals to enter in to a contract that gives any broader access to their (well, technically their families) genetic information.
Once I can prick your finger and tell you your life expectancy (barring accidents) to within a year, you'll either decide you don't need insurance, or you won't be able to afford insurance.
While i agree with your general point, that's pretty much the same assumption AIG thought was a valid basis for all those CDOs they agreed to reinsure and look how well that turned out for them
Won't hospitals and other institutions just add this authorization to their mandatory patient consent forms?
The $500k figure is for the increase in the administrative cost for research only. They also projected losing access to "hundreds of millions of dollars in research funding" because they simply couldn't perform certain types of research (essentially, anything involving human patients with a condition that has a genetic component). Also, while they said that they haven't run a cost analysis for the administrative cost increase for the UC medical system, it would likely be in the tens of millions of dollars.
The FBI keeps a database of fingerprints. They retain information on the following three categories of people:
1) Criminals, suspects, etc.
2) Healtcare professionals
3) Educators
They collected my fingerprints a few years ago, about five years after conducting a complete multi-state background check on me. Although I asked, the union did not lift a finger to protest the collection of fingerprints without due cause. There is no way to expunge my information from their database.
Soon, they will come back around to my school to demand my DNA. Do you see something wrong with this picture?
Seriously? It costs 2 cents to print the consent form and a fraction of a penny for ink in a fucking pen.
There are things in life that are more important than the State running around collecting peoples' DNA without their consent for unknown and/or nefarious reasons.
This got me thinking.
Is it possible, within today's legal framework, to sequence my own DNA and put it into written form then copyright that written form? After all, it IS unique. Would that protect me from people using my DNA in any manner that monetizes it, or, in effect, copies it?
And while we're on the subject, I bring up this only for perspective sake.
http://www.govtrack.us/congress/bills/110/s1858
I'm sure most of you will recognize the sponsor.
Anyway, read the summary. Everything we are talking about in this thread is moot. Any state level legislation would be trumped by this (think marijuana). This legislation requires the collection of DNA from every child born in the US, and that that data be posted, available freely, ON THE INTERNET.
So what the fuck is UCLA whining about?
I can't help but wonder what the ramifications will be for health care. Are they going to start offering discounts on insurance premiums for people who sign away their DNA for study?
Problem solved if you include a phase in period of like ten years. The are mostly worried about the sticker shock of needing to immediately go out and collect signatures like the census for currently utilized samples.
One thing I would urge the state senate to include is requiring the concent form to be a separate paper so that people are not signing off on it like a shrink wrap license every time they go in for medical care and get admitted.
When done properly, the test can reliably tell you the only thing it is designed to tell you:
That the specific tested portions of the DNA in the tested/crime-scene sample match or do not match the reference/suspect's sample, and if they do not match, it can tell you which specific portions match or do not match.
What it cannot do:
* Determine how the DNA got into the test sample - was the crime scene sample contaminated post-collection?
* Whether the presence of the DNA at the crime scene is a likely indicator of guilt or even a likely indicator of the person's presence at the crime scene at the time of the crime or for that matter, at all (DNA can be staged or the person can be at a crime scene for totally innocent reasons).
* Whether the reference/suspect is the only person to have this DNA (identical twins, some tissue/organ recipients, and in the future, clones come to mind).
* Whether a non-match means that the suspect only carries this DNA and no other (natural chimeras and some organ/tissue recipients come to mind).
Professionalism, training, and science can help prevent contamination and assess the likeliness of crime-scene contamination. These tools plus a thorough investigation can also help determine whether and how much the presence of the DNA points to guilt, if it points to guilt at all.
Science, statistics, family tree information, medical records, and additional testing of the suspect can address the last two points.
Bottom line:
When done right and absent DNA-doppelgangers, DNA testing is as reliable as testing of a good, non-smeared fingerprint. Yes, there can be an error but when the test is done correctly, errors are not due to unreliability of the testing, it's due to equating a positive test result to a person's guilt or even his presence at a crime scene.
Now, if you are talking about unreliability due to the test not being done correctly, that's not a reliability issue with the current state of the art of DNA testing in general, that's a reliability issue of the particular technician or lab.
Knowledge is how to play a game, intelligence is how to win, wisdom is knowing what game to play.
rigorous testing will become required.
Any testing that is not rigorous should never be used in court unless it can be proven that the lack of rigor made no difference in the result that the court was interested in.
Any time shoddy forensics is used in court, it sets up grounds for appeal.
Knowledge is how to play a game, intelligence is how to win, wisdom is knowing what game to play.
Some of us gave samples to the Federal Government for identification in the event we were killed-in-action (KIA)? Now, I don't have access to this sample, I don't know if it still exists, and if does, where is it stored.