2023 Legislation

Take Action on SB 625

SB 625 Newborn screening: genetic diseases: blood samples collected. (Nguyen) This bill would require the department of health to provide information about the newborn testing program, and to obtain written consent from the parent or guardian acknowledging receiving information regarding the storage, retention, and use of the newborn child’s blood sample for medical research. The bill would prohibit any residual newborn screening specimen from being released to any person or entity for law enforcement purposes. The bill would authorize a parent or guardian of a minor child to consent to the storage of the residual blood sample and the use of the sample for research purposes prior to or at the time the sample is taken.

CURRENT STATUS: Referred to Senate Health Committee and Senate Judiciary Committee. Hearing date has not been set.

Why SB 625 is Important: 

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 people are concerned about law enforcement using residual newborn blood samples in their search for suspects through Investigative Genetic Genealogy.

Read the Press Release

TaKe Action 1:

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 (625), and Session Type (Regular).
  4. Click on the “Search” button.
  5. Select the appropriate Committee (Health and Judiciary).
  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 625 which would require consent for the storage of a newborn's residual blood sample and the use of the sample for research purposes. This bill would enable parents to protect their children's highly sensitive genetic information and safeguard the international principle of informed consent."

Take action 2:

Contact Your Senator

Step 1. Set Up Meeting

Contact the district office and request meeting. If you do not know who your state representatives are, go to FindYourRep.Legislature.CA.Gov.

Get to know your legislator by reading their bio on their website. Find a common interest in order to establish relatability.

Create a one page document with the top three concerns you have that are addressed by SB 625. Bullet points are helpful as legislators and staffers are dealing with hundreds of bills. 

Step 2. Email

Meeting with your representative or their staff is the most effective way to have your voice heard, but if that is not possible, emailing your concerns is a good option. 

Be sure to be as concise as possible and state your support for SB 625 very clearly. Adding a personal touch is also great. 

Step 3. Call
Calling your legislator is especially important when a bill is coming up for a vote. 

When calling your representative's district office, you will likely be asked what city you live in and/or your zip code. This is to verify that you are a constituent. 

Step 4. Dress and Act Professionally
When meeting or interacting with legislators and staffers, the goal is to build positive relationships. This is easy to do if expressing views in polite and respectful ways.

Representatives and their staff are just ordinary people that are generally very personable and friendly.

Talking Points And Sample support letter for SB 625

Support SB 625

Main Talking Points

  1. Residual newborn blood samples contain a wealth of personal information on our children, from eye and hair color to predisposition to diseases.
  2. The genomic data in residual newborn blood samples is highly distinguishable and cannot be truly de-identified.
  3. Current law requires patient consent for pregnancy blood samples to be used for research purposes, and this standard should apply to newborn screening samples.
  4. These samples, taken in order to protect the health of vulnerable babies, should not be used for law enforcement purposes.

For more background information and talking points, see these two articles: 

California Biobank Stores DNA From Every California Baby

CBS13 Investigates: CA Still Storing Newborn DNA Without Consent. Golden State Killer Case Raising New Concerns

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