California Considers DNA Privacy Law 119
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."
Re:The world's tiniest violin plays for UCLA (Score:5, Informative)
I once read a study done in Sweden to find out how accurate a prostate cancer test was.
30 years ago, they had done a study of cholesterol, and saved the blood samples. So they could go back, thaw out the blood samples, and see what the PSA level was. Then using Sweden's wonderful medical records, they could find out how many of them had died of prostate cancer at each level of PSA.
This was very useful. If you go to a doctor, and he tells you you have an elevated PSA, you want to know whether it's something you can safely ignore or whether you have to get surgery (which leaves you impotent about half the time and with urinary incontinence about half the time).
If they had laws like the ones proposed here, they just couldn't have done it. It's one thing to have a collection of 100,000 blood samples that you can feed into an automated testing machine. Its another thing entirely (and much more expensive) to have to track down 100,000 subjects from a 30-year-old research project, many of whom have died (including the very people whose blood is most important to test).
Or suppose you turn 60 years old and go to the doctor for a routine exam. Your blood test results come back and he tells you you have chronic lymphocytic leukema. Some people die in 6 years. Other people die in 30 years. He can't tell how long you've got.
Well, now he can tell how long you've got. There's a DNA test. People with one mutation live 6 years, and people with another mutation live 30 years.
Obviously they didn't get signed permission from people with leukemia to test their DNA and follow them for 30 years. They went back and tested stored blood samples of people who died after 6 years and people who died after 30 years.
I don't want to oversell genetic studies. They're at a very early stage. But there are a lot of successful results. Doctors can tell who needs dangerous, debilitating medication in order to have a chance to live a little longer, and who can just skip the medication. They can get clues to new drugs. There are great promising results too complicated to explain here. But if they had to go through these specific informed consent forms described in the Nature article, they simply couldn't do it. It's like prohibiting stem cell research.
Re:The world's tiniest violin plays for UCLA (Score:2, Informative)
The fact that those doctors are making *MONEY* off it, and her and her family aren't? If it was non-profit and shared with all who needed it, maybe, but as a big money business the HL cell cultures are an insult to 'supposed' medical ethics everywhere. Nevermind that they didn't ask for permission, and it was only revealed... what, 20-30 years later?!??!
And saying this as a white dude: Just another example of the rich white upper class screwing those below them for their own benefit.
good in concept (Score:5, Informative)
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 [wikipedia.org] 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"
Re:The world's tiniest violin plays for UCLA (Score:4, Informative)
Their concern over the totally inflated number of $500K/year in administrative costs is sickening.
If anything, translating this to a $500k admin cost grossly underestimates the impact on research. Many types of work will become completely unworkable in California, if TFA is accurate:
"Under the newly proposed bill, a person's genetic information may only be accessed by individuals specifically named on a consent form, and only for purposes written on the form. Genetic information along with the original samples must be destroyed once their specified purposes are fulfilled."
We routinely run genetic tests, all the way up to whole exomes, on tumour and normal samples from a collection donated by thousands of different patients (anonymous to us). Most ot the people curently working in our lab (not to mention collaborators in other labs) had not even joined when the bulk of the samples were collected. It would be completely impractical to seek fresh consent from every relevant patient whenever a new researcher needed to run a test or access a piece of data. It would be a tragic waste to destroy data and precious samples prematurely (and usually against the wishes of the donors, who typically want us to do all we can with the material).
Far from being worried about 'lost profits', many researchers share your concern about gene patents (and very few profit from them directly!). But this is not the way to the address the problem - we need reform of the patent system, not unduly restrictive 'DNA privacy' laws.
It just kills me that I wont get a copy of my data.
Usually you'll be anonymous to the people with access to the raw exome data, and there's probably no mechanism for feeding it back to a named donor. This type of research will also be subject to a strict legal and ethical framework which will not permit the researchers to act as providers of genetic tests to named individuals. If you want an exome you'll probably have to get it done privately - should be about the price of a mid-range laptop right now, with whole genomes falling into this range within a couple of years. How useful it will actually be to you at this point is unclear, unless you happen to have a condition with a simple and well-defined genetic association. Note also that comparisons with anyone else's data will not be possible if DNA privacy laws become so strict that public databases can't be created in the first place...