California Health Coalition Advocacy Sponsors Bill to Protect the Genetic Privacy of Children

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California Health Coalition Advocacy

Mar 02, 2023, 17:00 ET

SACRAMENTO, Calif., March 2, 2023 /PRNewswire/ -- In an effort to protect the genetic privacy of children, California Health Coalition Advocacy, a non-profit organization based in Sacramento, has sponsored a bill, "SB 625 Newborn screening: genetic diseases: blood samples collected," introduced by Senator Nguyen on February 16, 2023.

Each year in California, hundreds of thousands of newborn screenings are performed to detect genetic conditions. The blood specimen and information obtained during the testing process become the property of the state. California indefinitely stores the residual blood samples and makes them available to third party researchers without the consent of parents.

These blood samples contain a wealth of personal information on our children, from eye and hair color to predisposition to diseases. This genomic data is highly distinguishable and cannot be truly de-identified. Many, including the ACLU, are concerned about law enforcement using residual newborn blood samples in their search for suspects through Investigative Genetic Genealogy.

"As a parent, I am concerned with the lack of transparency that surrounds this process," said Senator Nguyen. "Families in California should be fully informed of what genetic data is being collected by the state and should be fully aware of how that data is handled."

In 2021, California passed the Genetic Information Privacy Act to protect the genetic information of consumers with regard to certain genetic tests and to require express consent for collection, use, or disclosure of the consumer's genetic data. The Act specifically excludes the California Newborn Screening Program.

SB 625 would require consent for the storage of a newborn's residual blood sample and the use of the sample for research purposes. It would require written acknowledgment from the parent or guardian that they have received information regarding the storage, retention, and use of the newborn child's blood sample for medical research. In addition, the bill would prohibit any residual newborn screening specimen from being released to any person or entity for law enforcement purposes.

"This is a common sense bill that would enable parents to protect their children's personal medical information," said Valerie Noble, president and co-founder of California Health Coalition Advocacy. "Current law requires patient consent for pregnancy blood samples to be used for research purposes, and this standard would apply to newborn screening samples if this bill is passed."

For more information, visit CaliforniaHealthCoalitionAdvocacy.org

SOURCE California Health Coalition Advocacy