California Health Coalition Advocacy Sponsored Bill
Will Bring Transparency to the California Biobank

Sacramento, September 25, 2024 -- California Health Coalition Advocacy is proud to announce that the bill we sponsored this year, SB 1099 Newborn screening: genetic diseases: blood samples collected, passed through the California legislature and has been signed into law by the governor. SB 1099, authored by Senator Nguyen of Orange County, will bring much needed transparency to the activities of the California Biobank.

Each year in California, hundreds of thousands of newborn screenings are performed to detect genetic conditions. In addition, hundreds of thousands of prenatal screenings are performed to evaluate the risk of certain birth defects, and pregnant mothers have the option to allow residual blood samples to be stored and used for research. California indefinitely stores the residual blood samples in the California Biobank and makes them available to third party researchers, and in the case of newborn residual samples, without the consent of parents. 

The genetic material of mothers and children is being stored and used for research for public health purposes, but there is no transparency into: how many entities are utilizing the residual blood samples, how many residual blood samples are being used for research, or what specific public health benefits have been achieved.

SB 1099 ensures that the public has access to information about the activities of the California Biobank by requiring CDPH to annually prepare a report, deliver a copy of the report to the Legislature, and post the report on their website. The report would be required to contain information such as: the total number of residual screening specimens stored at the Biobank, the number of inheritable conditions identified the previous year, the number of projects utilizing specimens from the Biobank and the number of specimens each project is using, the number of published research studies that used or referenced biospecimens from the Biobank, and the potentially substantial public health benefit from the research.

“Parents in California are concerned about the genetic privacy of their children and have a vested interest in knowing what happens to their child’s blood sample after newborn testing is completed,” said Valerie Noble, president and co-founder of California Health Coalition Advocacy. “CHCA is shining a light on the newborn screening program in California and will continue to push for more information and options for parents when it comes to the storage and research use of newborn residual blood samples.”

This much needed transparency into California’s massive newborn DNA biobank is a first step, but CHCA plans to bring additional legislation to ensure that parents receive important information and options to protect their child’s genetic privacy.

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

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."

California Health Coalition Advocacy Sponsors Resolution to Protect Voluntary and Informed Consent 

SACRAMENTO, Calif., Aug. 26, 2021 /PRNewswire/ -- California Health Coalition Advocacy, a non-profit organization based in Sacramento, has been inundated with calls and messages from desperate workers and students concerned that receiving a COVID-19 vaccine is a condition of their employment and education. In an effort to push against mandates, California Health Coalition Advocacy has sponsored a resolution, "SCR 59 Medical interventions: voluntary and informed consent," introduced by Senator Melendez on August 18, 2021. The resolution would urge the Legislature and the Governor to take actions to protect Californians' right to make their own healthcare decisions. While a resolution is not a law, it can be used to impact the interpretation of laws and to support or defeat the passage of laws. As resistance to mandates grows, California Health Coalition Advocacy encourages lawmakers to support SCR 59.

When state and private entities enact COVID-19 vaccine requirements, they neglect to address a myriad of unintended consequences. The vaccine verification or exemption process reveals personal medical or religious information that should be kept private. Those who are disabled, pregnant, or trying to become pregnant object to being treated differently in the workplace or at school. Nurses and doctors who have been on the frontlines of the pandemic, often working without adequate PPE, and once hailed as heroes, are now being threatened with termination if they do not comply. Many health facilities might not survive if unvaccinated workers are fired, quit, or retired early. Reports of unvaccinated patients being denied medical care, students getting kicked out of college, and employees losing their jobs are widespread. One-size-fits-all does not apply when protecting the health and genetic diversity of Californians. Mandating a vaccine represents a violation of basic human rights and disproportionately affects low income and disadvantaged people who are more likely to be victimized by coercive laws.

"Rather than using and encouraging these heavy handed, strong-arm tactics to coerce people to receive a medical intervention they do not want, our elected officials should be protecting the fundamental right of all individuals to make their own health care decisions," said Valerie Noble, president and co-founder of California Health Coalition Advocacy. "All medical interventions come with known and unknown risks and often these risks place an unequal burden on individuals who are predisposed to suffering harm from treatments."