What will be done with my baby’s blood spot sample after all testing is completed?
Privacy and Security of Screening Specimen/Information Forms
The specimen/information form submitted to the department pursuant to R391-1-15 (1) becomes the property of the state of Utah, upon receipt by the Utah state public health laboratory. The department shall protect the privacy of the newborns and their families and assure that all specimen/information forms submitted for screening are protected from inappropriate use or access.
Once the newborn screen testing is complete, the blood spot card (any residual blood specimen) is securely stored as it still has beneficial public health uses – such as on-going quality assurance/quality control of the tests for these and other health disorders and research that seeks more effective ways to test and treat serious childhood diseases.
The blood spot card is stored separately from the information (demographic) data. Storage and release of blood spot card specimen or information is governed under R398-1-14, 15 and 16 and other federal and state requirements. For any use, identifying information is removed from the blood spot card and cannot be connected to the identity of the child. Identifying information linking a child to a particular blood spot card is not allowed without advance consent of the child’s parent(s), managing conservator or legal guardian(s) unless otherwise provided by law.
Retention of Information and Blood Spot Card
- Information form shall be retained until the child is 22 years. This includes all demographic data, screen tests results, confirmatory test results, nursing notes and other information that documents the child’s condition and status. This portion of this card is kept separately from the blood spots. After the 22 years, all records will be destroyed.
- The blood spot sample is retained at the state public health laboratory for a period of time (minimum of 90 days) to assure accurate screening and for approved uses that are consistent with the R398-1-15. The blood spot portion of the card contains no identifiable information.
Request for Destruction of the Blood Spot Card
If you decide you do not want your child’s blood spot sample to be used for any other purpose after the newborn screen testing and all necessary diagnostic testing has been completed, you may request the destruction of the blood spot sample. Completely fill out and submit the REQUEST TO DESTROY BLOOD SPOT SAMPLE CARD FORM along with 1) a copy of the child’s birth certificate and 2) a copy of your driver’s license, state-issued identification card or passport to the Newborn Screening Program, PO Box 144710, Salt Lake City UT 84114-4710. Or contact us at 801.584.8256 to send you a form.
If you have any questions regarding any of the above information, please contact us at 801.584.8256.