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California Senate Passes Genetic Discrimination Bill; Governor's Signature Pending


Originally published August 22.

By Turna Ray

The California State Senate
this week passed SB 559, a bill that will make it illegal to use people's DNA information to discriminate against them in areas of employment, education, and housing.

The bill was introduced by Senator Alex Padilla, a democrat from Pacoima district, on Feb. 17. Then, the text of the legislation was amended in assembly on June 21 and on August 15.

After the bill's passage in the assembly on August 18 by a 53-22 vote, SB 559 was sent to the Senate for confirmation. On August 22, the bill passed through the state Senate with a 24-10 vote and bipartisan support. Next, the bill will be sent to Governor Edmund Brown for his signature making it state law.

SB559 enhances the civil rights protections of California residents by adding "genetic information" to the state's existing anti-discrimination statutes, under the Unruh Civil Rights Act, which already prohibits discrimination based on race, religious creed, color, national origin, ancestry, physical disability, mental disability, and medical condition. Specifically, the bill would forbid discrimination based on genetic data in the areas of housing, employment, education, public accommodations, health insurance, mortgage lending, and elections.

“More than 50 years after [the Unruh Act] was passed, we must ensure that with the advances in genetic testing that this information cannot be used to discriminate against any Californian," Padilla said. “Discrimination on the basis of genetic information is no less offensive than discrimination based on race, gender, or sexual orientation."

In Padilla's view, these changes to existing laws are necessary in order to protect the public as genomic medicine and technologies advance. "California has a compelling interest in promoting and fostering the medical promise of genomics while relieving the fear of discrimination by strengthening laws to prevent it," she said in a statement.

The latest effort to expand anti-discrimination laws to cover genetic information explicitly in California has roots in the state's history of sterilizing people thought to have genetic abnormalities.

According to the text of SB 559, in the early part of the 20th Century, as many as 30 US states, including California, enacted laws allowing the sterilization of those "having presumed genetic 'defects' such as mental retardation, mental disease, epilepsy, blindness, and hearing loss." These laws resulted in the sterilization of 64,000 people, most of whom were poor, the bill notes, admitting that nearly a third of these sterilizations were performed on California residents.

Most of these state laws "have since been repealed, and many have been modified to include essential constitutional requirements of due process and equal protection," the California legislation adds. "However, the current explosion in the science of genetics, and the history of sterilization laws by states based on early genetic science, compels legislative action in this area."

SB 559 also expands genetic discrimination protections beyond those given by the Genetic Information and Nondiscrimination Act, which became federal law in 2008. The national law bars health insurers and employers from accessing people's DNA data that suggests they might be predisposed to certain diseases and using it to deny them insurance or influence a worker's compensation or workplace status.

The fact that there is already a federal law providing basic protections against the misuse of genetic data was one of the main reasons cited by those who voted "nay" to SB 559. However, GINA does not restrict insurance companies from using genetic data to make coverage decisions in the context of pre-existing conditions or when related to pharmacogenomic tests. The text of SB 559 notes that although GINA provides baseline protections against genetic discrimination at the federal level, "its range of protections is incomplete for Californians."

While the California bill is close to becoming law, there are similar state-based efforts to extend greater protections against misuse of people's genetic data.

Earlier this year, Massachusetts introduced the “Genetic Bill of Rights," which seeks to protect state residents from genetic discrimination in life insurance, auto insurance, and in establishing credit. This bill seeks to make a person's genetic data as their property (PGx Reporter 02/16/11).

Similarly, in the state legislature in Vermont, Progressive house member Pearson Christopher and Democratic member Suzi Wizowaty recently introduced H.368, an "Act Relating to the Privacy of Genetic Information," which also extends people's property rights to their own DNA data (PGx Reporter 03/09/2011).

In March, HB 2110 was introduced in Texas State Legislature. The bill gives an individual "exclusive property rights" to his or her DNA sample, and prohibits others from collecting, analyzing, or retaining someone's biological material without the written consent from the sample's owner.

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