Newborn Screening Information for Families:
Parental Options

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

• Refuse or delay newborn screening
• Private testing for newborn screening
• Complete blood spot screening and then request destruction of your child's blood spots and/or newborn screening results
• Complete blood spot screening and then request your child's blood spots be returned to you
• Consent to participate in public health studies and research or revoke prior consent

Refuse or delay newborn screening

You have the right to refuse or delay newborn screening.

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 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.

If you wish to have your child screened but want it done at a later time, you can choose to delay newborn screening. Because signs and symptoms can present within the first few days of life, we strongly encourage completing screening as soon as possible. If you choose to delay, please ensure your healthcare provider can complete the blood spot, hearing and/or Critical Congenital Heart Disease (CCHD) screen at their practice and ask about any additional costs that may be associated with it.

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

Private testing for newborn screening

If you refuse or delay blood spot screening through MDH, you may still receive the health benefits 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 health care provider for more information.

Complete blood spot screening and then request destruction of your child’s blood spots and/or newborn screening test results

You can receive the life-saving benefits of newborn screening and afterward request that your child’s blood spots be destroyed.

In addition, you can request to destroy all the newborn screening test results. This includes results from the blood spot screen, hearing screen, and critical congenital heart disease (CCHD) screen.

If you would like MDH to destroy your child’s blood spots and/or newborn screening test results (bloodspot, hearing and CCHD), please complete the Directive to Destroy Newborn Screening Blood Spots and/or Newborn Screening Test Results (PDF) form.

Complete blood spot screening and then request your child's blood spots be returned to you

If you would like your child’s blood spots to be returned to you, please contact the Newborn Screening Program at health.newbornscreening@state.mn.us. For patient privacy reasons, we cannot mail the blood spot card directly to you. We will coordinate with a provider of your choosing (e.g., child’s doctor, clinic, or your midwife) to receive the card and then you can obtain it from them.

Consent to participate in public health studies and research or revoke prior consent

If you would like to participate or revoke consent in public health research, please contact the Newborn Screening Program at health.newbornscreening@state.mn.us.