Passing along an call to action sent from California Health Coalition Advocacy.

“If you or your child was born in California after 1983, your DNA is likely being stored by the government, may be available to law enforcement and may even be in the hands of outside researchers.”
- CBS News

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.

CHCA Sponsors CA Senate Bill to Protect the Genetic Privacy of Children

In an effort to protect the genetic privacy of children, California Health Coalition Advocacy has sponsored SB 625 Newborn screening: genetic diseases: blood samples collected. SB 625 was introduced by Senator Nguyen on February 16, 2023. "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."

“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.”

What Would Our Bill Do to Protect Genetic Privacy?

SB 625 would:

• Require consent for the storage of a newborn’s residual blood sample and consent for the use of the sample for research purposes

• 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

• Prohibit any residual newborn screening specimen from being released to any person or entity for law enforcement purposes

If you care about the state of California owning and storing your or your child’s DNA in a Biobank, we ask you to take one action: submit a letter of support. All the information to take this action is available on our website: SB 625 Take Action.

Please share this information with fellow Californians.

Thank you.

California Health Coalition Advocacy board of directors

(916) 572-4465

CaliforniaHealthCoalitionAdvocacy.org

California Health Coalition Advocacy initiates and influences laws and policies to expand, protect, and promote the health and well-being of Californians. This includes the right to access, consent to, and refuse products, services, treatments, information, education, exposures, and environments.

CHCA is a 501(c)(4) and donations are not tax deductible.