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."

Comments

Hard to Swallow

[lewko]

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.

The world's tiniest violin plays for UCLA

[jbeach]

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."

Too bad for them people's rights can be so inconvenient and costly. Oh well.

Re:The world's tiniest violin plays for UCLA

[__aaltlg1547]

It's just a consent form. Make sure it assigns the right to use your genetic information for any research purpose you like, publish it, exchange it with others, etc. etc. Get your subjects to sign it and stuff it in a file cabinet. Done.

Is there an exception for law enforcement?

Re:The world's tiniest violin plays for UCLA

[Bieeanda]

Yeah. I'm sure I echo the family of Henrietta Lacks when I say 'Fuck 'em.'

Re:The world's tiniest violin plays for UCLA

[TubeSteak]

It's just a consent form.

There's a reason so many shitty things in this world are opt-out.
If you make them opt-in, almost no one consents.
If you make it opt-out, even a small amount of effort is too much for most people.

You'd think the field of Medicine, with its strong emphasis on ethics, would understand the rational behind an opt-in system of DNA collection for research purposes.

Re:The world's tiniest violin plays for UCLA

[nbauman]

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

[wrook]

I have no problem with researchers using my data to help with their research. I *do* have a problem if they receive a patent based on my data. I'm quite happy to have them do whatever research they want, but I don't like the idea that they will get exclusivity for something that was derived from something I gave them for free.

Can we have a copyleft for our medical data? You can use it, but only if the result is free (as in freedom) to use.

DNA testing of criminal suspects

[davidwr]

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.

A far bigger concern

[Grayhand]

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.

good in concept

[Gravis Zero]

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"