California bill would prevent genetic-testing firms from using surreptitiously obtained DNA

Posted: May 23, 2013 at 10:51 pm

If you want to keep your DNA to yourself, be sure not to leave any stray hairs, Q-tips or underwear lying around. There are genetic testing companies out there willing to reveal your most intimate biological secrets to anybody -- without your knowledge or permission.

And under California law, such genetic snooping is perfectly legal.

Now, legislators in Sacramento are considering a bill to change that. Senate Bill 222, which faces a key hearing Thursday, would require a donor's consent to collect, analyze or share genetic information. While the legislation might seem like a slam-dunk in the ever-evolving battle between technology and privacy, it's generating opposition from unlikely quarters: major research universities such as Stanford and the University of California, which argue that providing those protections will create unnecessary red tape and costs.

"We have privacy laws in place to protect health and financial information," said the bill's author, Alex Padilla, D-Pacoima. "But arguably the most personal information about us -- our own genetic profile -- isn't protected."

Most Californians are probably familiar with genetic testing companies such as 23AndMe that will screen customers' DNA for their predisposition to cancer, diabetes, Parkinson's, Alzheimer's and a host of other diseases. But less known is that a growing number of firms are also offering paternity testing -- with or without a person's knowledge -- as well as

Padilla cites Elk Grove-based EasyDNA, which makes no attempt on its website to discourage customers from secretly sending in someone else's genetic material under its "discreet DNA samples" program.

"Sometimes it is not possible to directly obtain samples from the person who needs to be tested," says the website. "In this case, discreet samples can be submitted instead. Samples that can be used include strands of hair, blood, clothing, cigarette butts and other items that may contain traces of DNA."

EasyDNA representatives did not return repeated phone calls.

Mountain View-based 23AndMe says it has an extensive privacy policy in place -- and that the company doesn't do paternity or infidelity testing.

"We require that the person who's submitting the sample is the person who has legal authorization or consent on behalf of the person they're providing samples for," said 23AndMe spokeswoman Catherine Afarian.

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California bill would prevent genetic-testing firms from using surreptitiously obtained DNA

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