Newborn Screening Information for Families: Parental Options - Minnesota Dept. of Health

Newborn Screening Information for Families:
Parental Options

You have options in newborn screening. Please discuss the following options with your healthcare provider.

Forms for exercising parental options may also be found on our Education Materials and Forms webpage.


Refusal of newborn screening

You have the right to refuse to have your baby screened by the Minnesota Department of Health (MDH) Newborn Screening program.

Newborn screening may be life-saving. The risks of not screening your baby are serious. The conditions on the newborn screening panel can cause permanent and severe health problems or lead to death if not detected early.

If you refuse newborn screening, you must indicate your refusal in writing. Staff from the birth facility will send a copy of the refusal form to the Newborn Screening program. An original form will 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, and
    • you accept legal responsibility for any consequences (death or health problems) of not screening your baby.

A refusal form should be completed even if you want to have screening done at a later time. The refusal form documents that you are refusing screening at that time, but does not mean that you can't still choose to have screening done later.

If you would like to refuse newborn screening, complete the Parental Refusal of Newborn Screening (PDF) form.


Private testing for newborn screening

If you refuse blood spot screening through MDH, you may still receive the health benefits of screening by electing to have screening performed by a private laboratory. The specific disorders screened for by private testing laboratories may vary from those screened for by MDH. Private testing kits must be ordered in advance by the parent(s), and a primary care provider must coordinate testing with the specific private laboratory.

Discuss this option with your healthcare provider for more information.


Retention and destruction practices of blood spots and test results

During the 2014 legislative session, the Minnesota legislature made changes to Minnesota's newborn screening law. As a result, retention practices regarding blood spots and blood spot test results are determined by when the blood spots were collected.

Retention of blood spots collected on or after August 1, 2014 and their test results

As of August 1, 2014, the Newborn Screening program may store blood spots collected on or after August 1, 2014 and their test results indefinitely and may use them for program operations as defined by Minnesota Statute §144.125. Blood spots collected on or after August 1, 2014 and their test results are automatically retained by the program unless a parent or guardian directs MDH to destroy them. If you are a parent or guardian of a child screened on or after August 1, 2014, you can opt to direct MDH to destroy your child's test results and any remaining blood spots.

If you would like to destroy your child’s blood spots collected after August 1, 2014, complete the Directive to Destroy Newborn Screening Blood Spots and Test Results (PDF) form.

Destruction of blood spots collected before August 1, 2014 and their test results

MDH has destroyed blood spots collected before August 1, 2014 and the test results obtained from them unless parents provided written consent for MDH to store and use them for an extended period.

If you provided written consent for extended storage and use of blood spots collected before August 1, 2014 and the test results obtained from them, you may revoke the consent at any time and request their destruction.

If you would like to destroy your child’s blood spots collected before August 1, 2014, complete the Directive to Destroy Newborn Blood Spots and Newborn Screening Test Result (PDF) form.

Retention and destruction practices for hearing screening test results

Minnesota Statute §144.966 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 would like to discontinue storing your child’s hearing screening test results, complete the Directive to Destroy Newborn Screening Blood Spots and Test Results (PDF) form.


Use of blood spots and test results for public health studies and research

Use of blood spots and test results collected on or after August 1, 2014 for research or public health study

If your child was screened and their blood spots were collected on or after August 1, 2014, you may give written consent allowing the blood spots and test results to be used for public health studies or research not necessarily related to newborn screening.

Public health research use of the blood spots or test results will only be allowed as long as privacy of the child is maintained. Privacy is maintained by separating identifying information from the blood spots. All directly identifiable information (name, address, birthdate, etc.) about the child will be removed so researchers won't know whose blood spots are being used. Allowing the blood spots and test results to be used for research may not have an immediate benefit to your family, but your family and other families may be helped later on by research that develops new ways to diagnose, prevent, or treat disease. In fact, past research has allowed our program to grow to be able to help significantly more babies today than it did 50 years ago.

Access to blood spots or test results will be granted only to researchers whose public health studies are approved by an ethics committee called an Institutional Review Board (IRB). An IRB assures the protection of all individuals in research projects. Research using newborn screening blood spots or test results will need to be approved by both the MDH IRB and the researcher's institutional IRB. Access to newborn screening blood spots or test results will not be granted to law enforcement, insurance companies, or others unless required by law or a court order.

If you would like your child’s blood spots and test results used for public health studies and research, complete the Parental Consent for Research Use of Newborn Screening Blood Spots and Test Results (PDF) form.

Revoke consent of use of blood spots and test results collected on or after August 1, 2014 for research of public health study

Parents may revoke previously-given written consent for research use of newborn screening blood spots and test results at any time.

If you would like to revoke previously given written consent for your child’s blood spots and test results to be used for public health studies and research, complete the Directive to Destroy Newborn Blood Spots and Newborn Screening Test Results  (PDF) form.

Revoke consent for research use, but maintain storage of child’s blood spots and test results

To revoke consent for research use, but still allow storage of your child’s blood spots and test results, please contact the Newborn Screening program. Please note that choosing this option would allow MDH to only use the blood spot and test results for newborn screening program operations (as specified in Minnesota Statutes §144.125 subd.5) and would keep them available for your family should you need them. However, the blood spots and test results would no longer be available or used for research.


Extended storage of blood spots collected before August 1, 2014 and test results

Unless a family provided written consent for extended storage and use of their child's blood spots collected before August 1, 2014 and the test results obtained from them, MDH has destroyed the blood spots and test results from that period.

If you provided written consent for extended storage and use of blood spots collected before August 1, 2014 and the test results obtained from them, you may revoke the consent at any time.

If you would like to revoke consent of extended storage of blood spots collected before August 1, 2014, complete the Directive to Destroy Newborn Blood Spots and Newborn Screening Test Results (PDF) form.


Request for newborn screening results to be released

You may request the release of your baby’s newborn screening test results either to an individual, clinic or organization.

If you would like to release your baby’s newborn screening results, please complete the Individual Request for Newborn Screening Test Results Authorization to Release Healthcare Information (PDF) form.


If you have questions, please contact the Newborn Screening program and our staff can assist you.