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Bill Seeking Greater Genetic Privacy Protection Reintroduced in California

NEW YORK (GenomeWeb News) – California will once again consider legislation that would prohibit the unauthorized collection of a person's genetic information.

This week, Democratic State Sen. Alex Padilla reintroduced a bill to establish the California Genetic Information Privacy Act, which would make it illegal to collect, analyze, transfer, or store an individual's genetic information without that person's approval.

Padilla introduced the same bill last year, but it stalled at the committee level.

In a statement, the senator noted the technological advances that now make it possible to have a genome sequenced in a matter of days, as well as price points that make the technology available to a wide swath of people and not only the very rich. As a result, the public is at greater risk of having their genetic information used inappropriately.

"Advancement in genomic research and individual privacy must go hand in hand," Padilla said. "No person should have their genetic material taken, tested, and given to others without authorization."

Federal legislation, called the Genetic Information Nondiscrimination Act, prohibits the use of genetic information in health insurance and employment matters, and in 2011 California augmented GINA by passing legislation to prohibit genetic-based discrimination in life insurance, housing, education, and other areas.

However, no laws exist to prevent the surreptitious collection of a person's genetic material and information.

"We have laws to protect the privacy of our financial information, our medical records, and even the books we check out from the local library," Padilla said. His bill, if passed, "would extend California privacy protections to a person's genetic material and information. We need genomic privacy protections because nothing is more personal than our DNA."

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