CHCA Sponsors CA Senate Bill to Bring Transparency to the California Biobank

Check Out All of the Bills CHCA is Supporting this Session


Working Together for a Healthier California

CHCA Sponsors Bill to Bring Transparency to the California Biobank

The genetic material of mothers and children is being stored and used for research for public health purposes, but there is no transparency into:
  • what research is being conducted,
  • what entities are utilizing the residual blood samples, or
  • what specific public health benefits have been achieved.
SB 1099 would ensure 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.

CHCA Sponsors Bill to Protect the Genetic Privacy of Children

Millions of mandatory newborn screenings are completed each year. The state of California indefinitely stores the residual blood samples of newborns and makes the samples available to third party researchers. This is done without the prior consent from parents.

SB 625 Newborn screening: genetic diseases: blood samples collected is a bill that would:

  • Require consent for the storage of a newborn’s residual blood sample and 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.

Press Releases

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.

August 26, 2021California Health Coalition Advocacy Sponsors Resolution to Protect Voluntary and Informed Consent10, 2020 - COVID-19 Response Shines Light on Need for Civil Liberty Protections: California Organization Drafts Bill to Fix Health and Safety Code

March 26, 2020 - Prominent Vaccinologists Caution Against Accelerating COVID-19 Vaccine to Market Amid Pandemic, Public Health Resolution Needed to Raise Awareness

CHCA's Resolution Introduced 8/18/21

This measure would urge the Legislature and the Governor to take actions to​ protect Californians’ right to make their own health and medical decisions. The measure would urge the Legislature to amend existing law in order to require the voluntary and informed consent of an individual​ or their guardian, and to authorize the consent’s withdrawal without prejudice, for any​ preventive, diagnostic, or therapeutic medical intervention taken by the State Department​ of Public Health to ascertain the nature of a contagious, infectious, or communicable​ disease and to prevent its spread.

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Working Together for a Healthier California

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