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Newborn Screening

Updated 3/12/15

New Parents Targeted by Data Privacy Group May Have Questions About Newborn Screening

Thousands of new parents may have received a confusing letter in the mail in recent months from a small but vocal group seeking to limit the scope and resources of Minnesota’s newborn screening program.

The 3-page letter, sent by Citizen’s Council for Health Freedom, includes a number of false claims about newborn screening and suggests that the Minnesota Department of Health (MDH) may begin using “child DNA” for illegal purposes.

On the contrary, newborn screening involves testing chemicals in the blood, not DNA. There is only one test that necessitates looking at a gene (cystic fibrosis) and that is only if the child fails the chemical blood test. MDH does not keep extracted DNA on file.

At the urging of this group, dozens of alarmed parents have opted out of long-term storage of their child’s blood spot, taking an unnecessary and potentially dangerous decision.

The destruction of blood spots is not something to be taken lightly. A newborn’s blood spot provides a unique overview of his or her health at birth. It contains a variety of biological markers that can be helpful in identifying and treating certain diseases that may or may not be apparent right away. Once a newborn blood spot is destroyed, it can never be replaced.

As many of you know, restoring Minnesota’s newborn screening was a top legislative priority of MNAAP last year. Thanks to legislation that was successfully passed last year, Minnesota is once again among the majority of states that saves newborn screening data and results for an extended period to assure proper diagnosis, timely follow-up, and re-analysis, if necessary.

Please be sure to talk to families about the benefits of newborn screening and long-term storage. MNAAP is preparing a common letter that can be used and personalized by hospitals and clinics. Urge parents not to opt out!

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What is the reasoning behind storing blood spots indefinitely?

Minnesota is among the majority of states that store blood spots for an extended period. Long-term storage assures proper diagnosis, timely follow-up, and re-analysis, if necessary. In addition, it provides the basis for quality control and new test development.

What is the benefit of keeping a child’s newborn screening information on file?

Keeping newborn screening information on file allows physicians to quickly rule out certain diseases in emergency situations. The information may also be accessed at the request of a parent to determine whether certain biochemical markers were present at birth that may have contributed to a child’s death — information that could be beneficial for siblings or family history purposes.

Does a child’s newborn screening information leave the possession of the state of Minnesota?

No. Authorized staff are the only people allowed to view newborn screening test results. This can include the Minnesota Newborn Screening Program staff, the hospital where a baby is born or the out-of-hospital provider who delivered a baby, and a baby’s primary care provider.

Leftover blood spots are not used for research unrelated to newborn screening and are not shared with any external partners or other government agencies without written consent from parents or legal guardians.

What happens to the sample after testing?

Following the newborn screening, test results and any leftover blood spots are stored to allow for follow-up testing, if needed. Stored blood spots and test results are also used for general program operations, such as making sure screening is accurate, improving test methods, and developing new newborn screening tests. They are not used for research or public health studies without the parent’s written informed consent.

What measures are in place to keep a baby’s genetic information protected?

The newborn screening card that is sent to MDH for testing contains only the information about mom and baby that will help staff interpret test results and contact your baby’s primary care provider if more testing or follow-up is needed. This includes, but is not limited to, baby’s name, date of birth, time of birth, mom’s name, and the name of the baby’s primary care provider or clinic.

What is the Citizen’s Council for Health Freedom (CCHF)?

The Citizen’s Council for Health Freedom is a small but vocal group that has worked to dismantle Minnesota’s newborn screening program, weaken vaccination requirements, and prevent the expansion of the Affordable Care Act on the claim that these programs detract from health care freedom. It is often at odds with MNAAP, MMA, and other groups that seek a balance between health care freedom and quality medical care.

Newborn screening info/resources from MDH:

MN Dept. of Health Contact Information for Providers»
Newborn screening fact sheet
Early Hearing Detection & Intervention»


MDH Announces New Provider Manual for Newborn Screening in Minnesota

More info/view the manual»


MDH Launching Newborn Screening Billboards

Starting in December, MDH is launching a newborn screening billboard campaign designed to increase public awareness and encourage parents to discuss newborn screening with their providers. The billboards will start in the metro area with plans to extend into greater Minnesota in the coming months.

With this new publicity, you may be answering more questions about newborn screening in Minnesota. Check out the resources below and consider contacting MDH to order free educational materials for parents.

Billboard ads
MDH letter to pediatricians


Minnesota Department of Health – Newborn Screening Information for Health Care Providers
Includes FAQs, specimen collection, disorder information, results and communicating to parents.


Minnesota Early Hearing Detection & Intervention – Tools to improve communication among EHDI providers and between providers and families. Providers can review the hearing screening follow-up process and common myths.


Save Babies Through Screening Foundation
Advocates for comprehensive newborn screening and provides information for families and practitioners dealing with positive screens.


Baby’s First Test
Facts and support about newborn screening state by state.
A clearinghouse for practical tools and information for primary care providers regarding genetics and genomics, genetic testing, family history, genetic counseling, and patient communication.

What to Expect from the 2014 Newborn Screening Law

On May 6, Governor Mark Dayton signed the newborn screening restoration bill into law with the full support of the Minnesota Chapter of the American Academy of Pediatrics (MNAAP) and other medical organizations. The new law, effective August 1, 2014, positions Minnesota to save as many lives as possible while upholding parents’ rights to refuse to test, request destruction of test results, or both.


Q&A with Mark McCann, Program Manager, Newborn Screening


What changes went into effect on August 1?

The new legislation passed earlier this year authorizes MDH to store blood spots and test results. Under this new law, the Minnesota Department of Health (MDH) can keep blood spots and test results indefinitely unless parents request the destruction of the blood spot and/or test results.

Additionally, the new legislation explicitly states that MDH should promote materials describing the newborn screening program and encourage medical providers and medical education programs to thoroughly discuss newborn screening with expectant parents and parents of newborns.


What about babies born before August 1?

Blood spots collected before August 1 are subject to the old practice of retaining blood spots for 71 days and test results for 2 years. Blood spots collected on or after August 1 will be retained by MDH indefinitely unless parents request destruction of the blood spot and/or test results.


How is MDH educating expectant parents about newborn screening?

The legislation makes it clear that MDH is to provide information to health care providers, including pediatricians, about benefits associated with blood spot storage and test results.

We’ve been educating expectant parents for a number of years. But because of the new legislation, we’re taking additional steps to educate both parents and medical providers about newborn screening. We are planning to survey 8,000 parents of babies born over a 6-week period to understand what they learned prenatally about newborn screening and what they wish they would’ve known. We also have a mailing going out to over 1,600 prenatal providers and clinics that includes new and improved prenatal education materials. Additionally, we’ll be conducting a survey of prenatal care providers to better understand how they can be more successful in having a discussion with parents on newborn screening. MDH continues to make educational materials and forms available to childbirth education programs.


If parents do not want their spots saved, what is the process for destruction?

Parents should fill out the proper forms on the MDH website. Within 30 days of receiving their request, MDH will destroy the blood spots. MDH is required by CLIA to maintain test results for 2 years.

If parents are interested in having their child’s blood spot specimens returned to them, they should contact the Minnesota Department of Health Newborn Screening Program at 651-201-3548.

The new legislation clearly sets out the parameters of what things MDH can do as part of program operations. Parents may revoke approval for storage and use of samples and results at any time. Under this new law, MDH can keep all indefinitely unless a parent fills out a request form to order their destruction.


Anything else pediatricians should know about?

With the new legislation, our ability to operate as a nationally recognized program has clearly been strengthened. The program now has more clarity about how and when blood spots can be used. We really look forward to continuing our work with Minnesota physicians toward giving all Minnesota babies a healthy start.

I would encourage all pediatricians to make sure they ask for newborn screening reports from the patient’s birth hospital and review them with parents at the first well-child visit The MN Department of Health, Newborn Screening Program Page»


Newborn Screening Bill Signed by Governor Dayton
Read 5/6/14 press release


Key Supporters

The newborn screening legislation was supported by the pediatric leaders at Children’s Hospitals and Clinics of Minnesota, the University of Minnesota Amplatz Children’s Hospital, Hennepin County Medical Center, Gillette Specialty Health Care, Mayo Clinic Children’s Center and Shriners Hospitals for Children – Twin Cities. Additional partners in the effort to restore Minnesota’s newborn screening program include the Minnesota Chapters of the March of Dimes and American Heart Association as well as the Save Babies through Screening Foundation.


House OK’s Bill to Enhance Newborn Blood Screening, Pioneer Press (5/2/14)

Senate Approves Newborn Screening Bill, Rochester Post (4/24)

Newborn Screening Bill Pits Medical Groups Against Privacy Rights Advocates, Rochester Post (3/18)

Destruction of 1 million newborn blood spots endangers Minnesota children Minnesota Health Care News (February 2014)

State Juggles Privacy and Research: The Destruction of Newborn Blood Samples Halted Some U Research, Minnesota Daily (1/28)

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