Newborn Screening Information for Families:
You have options in newborn screening.
Please discuss the following options with your health care provider.
You have the right to refuse to have your baby screened by the Minnesota Department of Health (MDH) Newborn Screening Program.
There are life-saving benefits of newborn screening. The risks of not screening your baby are very serious. Without screening, your baby could die or have permanent and severe health problems.
If you refuse newborn screening, you must indicate your refusal in writing on the MDH Parental Refusal of Newborn Screening form. Staff from the birth facility will send a copy of the refusal form to the Newborn Screening Program. The original form should be kept in your child's medical chart with a copy given to you by hospital staff or your birth provider.
The refusal form documents that:
- you were told the risks of not screening your baby.
- you accept legal responsibility for any consequences (death or health problems) of not screening your baby.
The refusal form can be found on the Education Materials and Forms page.
If you refuse blood spot screening through MDH, you may still receive the health benefits by electing to have testing performed by a private laboratory. The specific disorders screened for by private testing laboratories may vary from those screened for by MDH. Private testing must be arranged in advance by the parent through a primary care provider and the specific private laboratory. Discuss this option with your healthcare provider for more information.
Storage periods for newborn screening test results and leftover blood spots
During the 2012 legislative session, the Minnesota legislature made changes to Minnesota’s newborn screening law. The revised law sets timelines by which the Newborn Screening Program must destroy newborn screening test results and leftover blood spots.
Current destruction practices for specimen and test results
Unless a parent or guardian gives written consent for extended storage and use of blood samples and test results, the MDH Newborn Screening Program destroys newborn screening test results and leftover blood spots according to the following timelines:
- MDH destroys blood spots with negative test results at 71 days.
- MDH destroys blood spots with positive test results at 24 months.
- MDH destroys all test results 24 months after they are reported.
It is not necessary for parents to direct MDH to destroy blood spots and test results according to the above timelines. MDH is required by law to perform the destruction and does so as a matter of routine practice (unless parents specifically direct MDH to store blood spots and test results for a longer period).
Because of these changes, there is no longer an option for individuals to direct the destruction of individual test results or blood spots.
Newborn hearing screening test results
Minnesota’s newborn hearing screening law allows MDH to store hearing screening and rescreening test results up to 18 years from an infant’s date of birth.
However, individual families may instruct MDH to discontinue storing hearing screening and rescreening test results earlier. If a parent or guardian instructs MDH to discontinue storing hearing screening and rescreening test results, MDH will destroy the test results within a month of receiving the instruction or within 25 months of receiving the last test result, whichever is later.
If you are a parent or guardian of a child screened for hearing loss and would like to exercise this option, please complete the Directive to Destroy Hearing Screening Test Results form, which can be downloaded from the Education Materials and Forms page.
Unless a parent or guardian gives written consent for extended storage and use, the MDH Newborn Screening Program destroys leftover blood spots and test results according to the following timelines:
- Blood spots with negative test results are destroyed at 71 days.
- Blood spots with positive test results are destroyed at 24 months.
- All blood spot screening test results are destroyed 24 months after the final report is mailed to the birth provider.
- Hearing screening test results are destroyed at 18 years.
Once destroyed, the blood spots and test results are no longer available from MDH. However, birth providers may retain newborn screening results in your baby’s medical record for a longer period of time.
Newborn screening blood spots and test results may be used to help both your family and other families in Minnesota. Leftover blood spots can be valuable in providing a better understanding of the public and personal health issues affecting Minnesota residents.
If stored, your child’s blood spots and test results will be available to you in the future for further health-related testing of your child. Blood spots can also be used for identification purposes in the case of a missing or deceased child. Test results can be useful for parents with a child affected by one of the disorders on the newborn screening panel who wish to review their other children’s newborn screening results, or for student athletes who need to provide a copy of their sickle cell results to the NCAA.
If a parent or guardian of a screened infant authorizes MDH to store their infant's blood spots and test results, they may be used for:
- studies related to newborn screening, including studies used to develop new tests;
- public health studies or research not related to newborn screening; and
- public health studies or research with external partners, such as the University of Minnesota or the Mayo Clinic (contingent upon approval by the MDH Institutional Review Board).
When consent is granted, newborn screening blood spots and test results may be used for the purposes described above for up to 18 years. No personal identifying information will be attached to the blood spots or test results if used for research.
If you are a parent or guardian and would like to authorize your child's blood spots and test results to be available for use for these purposes, please complete the Parental Consent for MDH to Store and Use Newborn Screening Blood Spots and Test Results form, which can be downloaded from the Education Materials and Forms page.