2024 Legislation

Take Action on SB 1099

BACKGROUND: 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. Approximately 350,000 pregnant women are also screened each year for risk of certain birth defects and some women opt to allow the residual blood specimen to be stored and used for research. 

PROBLEM: The genetic material of mothers and children is being stored in the California Biobank 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.

SOLUTION: SB 1099 Newborn screening: genetic diseases: blood samples collected. This bill 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. The report would be required to contain information such as:

  1. The total number of any residual screening specimens stored at the California Biobank.
  2. The number of inheritable conditions identified by the original screening tests the previous calendar year.
  3. The number of projects utilizing specimens from the California Biobank and the number of specimens each project is using.
  4. The identity of each entity performing a research project, the specific nature of the research they are performing, whether any of the research may be used for commercial profit, and the potentially substantial public health benefit from the research.

CURRENT STATUS: Set for hearing in the Senate Health Committee on April 24, 2024.

TaKe Action:

Submit Your Support Letter to Policy Committees

Make sure that your support for this bill is heard and put on record by submitting your comments to the California Legislature Position Letter Portal.     (Watch Video Tutorial)

How to Submit Support/Opposition Letters:

  1. Complete a one-time registration to obtain a username and password.
  2. Log in to submit your position letter/comment.
  3. Select measure type (SB), measure number (1099), and Session Type (Regular).
  4. Click on the “Search” button.
  5. Select the appropriate Committee (Health).
  6. Select Your Stance (Support).
  7. Input note message in the note box.
  8. Complete the Captcha and select the “Submit” button.

Comments will be shared with the appropriate policy committee members hearing the bill.

Sample Comment:

"I support SB 1099 which would ensure that the public has access to information about the activities of the California Biobank including what research is being conducted, what entities are utilizing the residual blood samples, and what specific public health benefits have been achieved."

Talking Points And Sample support letter for SB 1099

Support SB 1099

Main Talking Points

  1. California is one of only 4 states that store prenatal and newborn residual blood samples indefinitely.
  2. Current law requires patient consent for pregnancy blood samples to be stored and used for research purposes but newborn residual samples are stored and used for research without the consent of parents.
  3. 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.
  4. This legislation is needed to provide transparency into the  activities of the California Biobank and the use of these residual samples.

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