The Genetic Information Nondisclosure Act (GINA) of 2014 would make it illegal for anyone in a state or local government to disclose the genetic information of any person unless the disclosure is necessary to protect the health, safety, or welfare of another person, according to the National Conference of State Legislatures (NCSL).
The bill has not yet received a hearing in the California state legislature, but it has gained momentum in other states.
In a statement, NCSL said that it supports the legislation, and that it was drafted with “the understanding that the data will be shared by state, local, and tribal governments, as well as private companies and individuals who would be legally required to disclose it.”
The bill would also prohibit disclosure of the genetic code without a valid reason.
California already has the state’s first statewide law that allows disclosure of genetic information in the name of public health.
But the legislation has a provision in it that would exempt the genetic data from disclosure if it “would be necessary to obtain a court order authorizing disclosure of a genetic information,” the NCSLL said.
The bill’s language also requires state agencies to notify people of their right to request a genetic test before it is disclosed, and the bill would require them to disclose information about a person’s genetic test results and any related genetic information.
Under the proposed legislation, California would be the first state in the nation to have such a law.
“This is a biggie for California,” said Kristina Eiseman, an assistant professor of law at the University of California, Berkeley, who studies the legal implications of data privacy laws.
“We have a national framework that requires disclosure of private health information, but California has the lowest disclosure standards for medical information.”
California also has the second-lowest rate of medical records being opened and shared by private entities, according the NCSL.
California has had a policy of not disclosing genetic information since the state passed a law in 2008, when it passed a privacy law to protect people with genetic information from sharing it.
The California law was struck down by the California Supreme Court in 2014.
Eisman said that the bill could be a useful tool for policymakers to understand the current privacy landscape in the state.
“It gives you a legal framework, and gives you the ability to say, ‘We can do this, but what do we do about it?’
That’s a good starting point for us.” “
The California state constitution prohibits the state from disclosing genetic data.
That’s a good starting point for us.”
Eismer said that if the California bill is passed, California will join the more than a dozen states that have passed legislation that addresses data privacy, including New York, Washington, Connecticut, Vermont, and Rhode Island.
But Eismers worries that it could lead to unintended consequences.
“There is a growing consensus among experts that genetic information should be protected,” she said.