Newborn Genetic Screening Survey

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California Health Coalition Advocacy is looking for feedback from parents about the California Newborn Screening Program.

First and Last Name *

City, State *

1) Are you familiar with the mandatory California Newborn Screening Program, which tests newborns for genetic diseases using blood obtained through a heel prick shortly after birth?
*

Yes

2) Did you know that after the newborn testing is complete the residual blood sample becomes the property of the state and is stored indefinitely?
*

Yes

3) What are your thoughts or feelings about the storage of your child’s residual blood sample being owned and stored by the state indefinitely?

4) Did you know that the state releases the residual blood samples to third parties for research purposes without prior consent?
*

Yes

5) What are your thoughts or feelings about your child’s residual blood samples being used by third party researchers?

6) Did you know that the residual blood samples are available for law enforcement purposes in the case of a court order?
*

Yes

7) What are your thoughts or feelings about your child’s residual blood samples being used by law enforcement?

8) Are you aware of your right to request destruction of the samples being stored by the state?
*

Yes

9) Please share any additional thoughts you would like us to share with California lawmakers on this topic.

10) I agree that my answers may be shared with California lawmakers using just my first name and city.
*

Yes

If you want updates on CHCA’s Newborn Screening Genetic Privacy Bill, include your email.

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