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

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

[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

[davester666]

The thing is, it'll become an opt-in for everyone, at the doctors office. As in, oh, you need a test, here, sign this generic permission form which just happens to sign away your DNA for any purpose [not just testing for your own personal health].

Otherwise, big pharma would have to track which DNA samples have permission to use for research and which don't, and they just want to use everything.

Re:The world's tiniest violin plays for UCLA

[martin-boundary]

That's what privacy is. "The state of being alone or kept apart from others". It means you don't get the benefits, but you're also not subject to the abuses.

Overall, I think that most agree that the abuses outweigh the benefits these days. With Facebook like corporations mining data from literally millions of people, the benefit of scientists having access to the names of 100 thousand people in a study isn't comparable, even if they are able to incidentally warn or help maybe 50 who exhibit certain symptoms.

We've created psychotic monster corporations, and now we have to accept the consequences, which includes a steep price to limit the privacy problem and an even greater economic one if we decide to fix it.

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.

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.