minnesota newborn screening program
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 child screened by the 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.
Refusal of Newborn Screening Form (PDF: 52KB/1 page)
If you refuse newborn screening, you must indicate your refusal in writing on the refusal form from the Minnesota Department of Health. Staff from the birth facility will send a copy of the 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 the hospital staff.
The refusal form documents that:
- you were told the risks of not screening
- you accept legal responsibility for any consequences (death or health problems) of not screening your baby
You have the option to still receive the benefits of newborn screening, but you may choose to have the screening done through private testing.
You may arrange for private testing for newborn screening. Discuss this option with your health care provider.
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 from November 16, 2011 forward
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 for newborn screening cards received at MDH after November 15, 2011.
Specimens and test results from July 1, 1997 through November 15, 2011
The MDH Newborn Screening Program has retained test results obtained from blood spots received by the program between July 1, 1997 and November 15, 2011. The blood spots themselves are also kept. Because of court-imposed requirements associated with pending lawsuits, MDH is currently prohibited from destroying those test results and blood spots.
However, the court provided an exception allowing the program to destroy individual specimens and test results from the period of July 1, 1997 through November 15, 2011 if requested by individual families. If you are a parent or guardian of a child born and screened during that period and would like to exercise this option, please use the following form:
Destruction request form for blood samples and test results from July 1997 through November 2011 (PDF: 68KB/1 page)
Newborn Screening Test Results from July 1986 through June 1997
The Newborn Screening Program also has test results stored from specimens received at MDH from July 1986 through June 1997. MDH no longer has the specimens used to obtain those test results. If you are 18 or older, were screened during that period, and would like your test results destroyed, please use the following form:
If you are a parent of a child not yet 18 years old who was screened during the period July 1986 through June 1997, and you would like your child’s test results destroyed, please use the following form:
Directive to Destroy Newborn Screening Test Results from July 1986 through June 1997 (PDF: 67KB/1 page)
Parental options for extended storage and use of blood spots and test results
Newborn screening blood spots and test results may be used to help your family or other families in Minnesota. 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.
A parent or guardian of a screened infant may authorize MDH to store an infant's blood spots and test results for a period of up to 18 years. Such consented blood spots and test results may be used in:
- 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 consented newborn screening blood spots and test results are used for the purposes described above, no information that could be used to identify individual infants will be attached to the blood spots or test results.
Newborn screening blood spots often represent the entire state, so they can help to provide better understanding of the public and personal health issues affecting Minnesota residents.
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 use the following form:
Parental option to allow MDH to retain and use newborn screening blood spots and test results (PDF: 202KB/3 pages)
Parents may revoke consent for extended use and storage at any time
A parent or legal guardian may revoke approval for extended storage and use of blood spots or test results at any time by providing a signed and dated form requesting their destruction.
- MDH will destroy blood samples within one week of receipt of a revocation request (or within one week of the standard 71-day retention period for blood samples, whichever is later).
- MDH will destroy test results within one month of receipt of a request (or within one month of the standard 24-month retention period for test results, whichever is later).
The following form is for use by parents to revoke consent for extended use and storage of newborn screening blood spots and test results:
Parental Revocation of Consent for Extended Storage and Use of Newborn Screening Blood Samples and Test Results (PDF: 66KB/1 page)