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.


Screening refusal

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. Children with conditions on the newborn screening panel can die or have permanent and severe health problems if not detected early.

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, 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.

The refusal form can be found on the Education Materials and Forms page.


Private testing

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 and a primary care provider must coordinate testing with the specific private laboratory. Discuss this option with your healthcare provider for more information.


MDH retention and destruction practices

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 and you would like to direct MDH to destroy your child's test results and any remaining blood spots, please complete the Directive to Destroy Newborn Screening Blood Spots and Test Results and/or Hearing Screening Test Results form, which can be downloaded from the Education Materials and Forms page.

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

The Minnesota Department of Health 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 and test results, you may revoke the consent at any time by completing the Parental Revocation of Written Consent for Storage and Use Newborn Screening Blood Spots and Test Results 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 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 Newborn Screening Blood Spots and Test Results and/or Hearing Screening Test Results form, which can be downloaded from the Education Materials and Forms page.


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 her or his 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 spot is 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 Newborn Screening to grow so the program is able to help significantly more babies today than it did 40 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 are a parent or guardian and would like to exercise this option, please complete the Parental Consent for Research Use of Newborn Screening Blood Spots and Test Results form, which can be downloaded from the Education Materials and Forms page.

You may revoke the consent at any time by completing the Parental Revocation of Written Consent for Storage and Research Use Newborn Screening Blood Spots and Test Results form, which can be downloaded from the Education Materials and Forms page.


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

Unless you (or other parents) provided written consent for extended storage and use of 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 have provided written consent for extended storage and use of blood spots and test results, you may revoke the consent at any time by completing the Parental Revocation of Written Consent for Storage and Use Newborn Screening Blood Spots and Test Results form.


Return of blood posts to parents or guardians

Parents or guardians may request that their child's newborn screening blood spots be returned to them at any time as long as a Directive to Destroy form has not already been received. To request this option, contact the Minnesota Department of Health Newborn Screening Program. Program staff will discuss with you the process for safely returning specimens to the requesting parents/guardians.