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California considers DNA privacy law
Nature ^ | 18 May 2012 | Helen Shen

Posted on 05/22/2012 11:20:10 AM PDT by Theoria

Academic researchers fear measures would prohibit work with genetic databases.

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.

“It’s becoming easier and quicker and cheaper for people to obtain their genetic profile or genetic information,” says the bill’s author, California state Senator Alex Padilla. “It’s such sensitive and personal information that it ought to be protected,” he says. Padilla also authored an earlier bill, enacted in January, which extended federal protections against genetic discrimination.

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.

Such requirements could seriously hinder genomic research, says geneticist David Segal, associate director of genomics at the University of California, Davis. He points out that scientists typically sequence DNA from thousands of people to discover genes associated with particular diseases. Under the proposed legislation, a large genomic dataset could not be re-used to study a different disease. Researchers would either need to destroy the data after each study, or track down thousands of former subjects for new authorisations—an infeasible task, he says.

“It’s just an incredible proposition that the money and effort that would be spent to obtain those large datasets would be just thrown away,” Segal adds.

(Excerpt) Read more at nature.com ...


TOPICS: Culture/Society; Government; US: California
KEYWORDS: california; consent; dna; privacy
'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.'

One would think that would already be a given.

1 posted on 05/22/2012 11:20:15 AM PDT by Theoria
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To: Theoria

I think this may be for criminals.

No DNA to match a crime scene sample, no conviction.

This is extremely dangerous. This must not pass.


2 posted on 05/22/2012 11:22:53 AM PDT by wastedyears ("God? I didn't know he was signed onto the system.")
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