The genetic material of mothers and children is being stored and used for research for public health purposes, but there is no transparency into:

• 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.

SB 1099 will 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.

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.

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 muchneeded transparency to the activities of the California Biobank.

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.

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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.