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Why Do Some Parents Refuse the Newborn Screening Test?

Why do some parents refuse the newborn screening test when their baby is born?

Do parents skip testing just because the newborn screening test might be painful?
Is it just that the newborn screening test might be painful?

The usual suspects…

Why Do Some Parents Refuse the Newborn Screening Test?

And they are getting advice to skip in the same Facebook groups that tell them to skip their baby’s hepatitis B vaccine and vitamin K shot.

But why skip the newborn screen test, after all, it isn’t a shot of any kind?

Home births are less likely to have newborn screening tests.

Mostly these parents are scared into thinking that something bad will be done with their baby’s blood.

Something beyond testing it for up to 50 or more life-threatening diseases that are often treatable when detected early, which is why newborn screening tests are a thing.

Although blood spots from newborn screening tests are sometimes stored, most folks don't understand why. Genetic manipulation?
Although blood spots from newborn screening tests are sometimes stored, most folks don’t understand why. Genetic manipulation?

While it is true that some states continue to store blood spots from the newborn screening tests for some time, it is mainly to allow retests, forensic studies, and for research on new tests and new technology.

“Many parents don’t realize their baby’s DNA is being stored in a government lab, but sometimes when they find out, as the Browns did, they take action.”

Elizabeth Cohen on The government has your baby’s DNA

And it isn’t a secret.

“Newborn screening programs vary widely in approaches and policies concerning residual dried blood spot samples (DBS) collected for newborn screening. Recognition of the epidemiological utility of DBS samples for HIV seroprevalence surveys and a growing interest in DBSs for DNA analysis has intensified consideration of issues regarding retention, storage, and use of residual DBS samples. Potentially these samples provide a genetic material “bank” for all newborns nationwide. Their value as a resource for other uses has already been recognized by scientists, administrators, and judicial officials. Programs should promulgate rules for retention and use of residual newborn screening DBS samples based on scientifically valid information. Banking of newborn samples as sources of genetic material should be considered in light of potential benefit or harm to society.”

Guidelines for the Retention, Storage, and Use of Residual Dried Blood Spot Samples after Newborn Screening Analysis:Statement of the Council of Regional Networks for Genetic Services (1996)

Experts began developing guidelines nearly 25 years ago to address the ethical concerns associated with newborn DNA banking.

“In fact, under the recently revised Newborn Screening Saves Lives Reauthorization Act of 2014, federally funded DBS research is considered human subject research that requires parental consent. Newborn screening programs are now tasked with implementing informed consent strategies for use and storage of their states’ DBS if they are being used for federally funded research.”

Kelly et al on Screening of Newborns for Disorders with High Benefit-Risk Ratios Should Be Mandatory

So should you opt out of the newborn screening test because you are scared of newborn DNA banking?

“Once screening in the State laboratory is complete, residual dried blood spot samples that are no longer needed for testing are each assigned a unique code which assures privacy and confidentiality for the sample and its donor.”

Michigan Neonatal Biobank

Opting out means your baby won’t be tested for treatable conditions, like homocystinuria, classic phenylketonuria, severe combined immunodeficiencies, galactosemia, congenital adrenal hyperplasia, and primary congenital hypothyroidism, etc.

“Newborn screening of the blood spot consists of a series of tests to look for 53 diseases that can cause a baby to get really sick or die if they are not identified and treated early. The diseases can cause growth problems, mental or physical delays, deafness, blindness, seizures, and early death. Most babies with these conditions look perfectly normal when they are born, and problems may not appear for several weeks or months. About 1 child out of every 500 screened has one of these newborn screening conditions.”

Can parents opt out of having their newborn screened?

It is estimated that the lives of more than 12,000 babies are saved or improved each year in the United States because their conditions are detected through newborn screening.

Newborn screening tests for homocystinuria, the thing that you should actually be worried about if you have an MTHFR gene mutation.
Newborn screening tests for homocystinuria, the thing that you should actually be worried about if you have an MTHFR gene mutation.

But mostly understand that all of these risks you take when you skip standard care add up – skipping your Tdap shot during pregnancy and your baby’s vitamin K shot, eye ointment, hepatitis B vaccine, and newborn screening tests, etc.

“While screening programs are now universal in the United States, it is estimated that approximately 1‐2 percent of births are not screened either because of parental refusal or practitioner oversight or omission. For every 1 percent of newborns not screened in the United States, approximately 45‐50 infants will be missed each year.”

Parent Refusal to Have an Infant Screened

And we see the tragic results.

“Federal and state public health agencies, in partnership with health professionals, families, and representatives of ethnic, minority, and other diverse communities, should develop model legislation and/or regulation that articulates policies and procedures regarding use of unlinked and identifiable residual samples for research and public health surveillance (this process should include review and consideration of the recent recommendations to the President set forth by the National Bioethics Advisory Commission for research involving human biological materials); develop model consent forms and informational materials for parental permission for retention and use of newborn screening samples; develop educational materials for parents that include information regarding the storage and uses of residual samples; organize collaborative efforts to develop minimal standards for storage and database technology to facilitate appropriate storage of residual newborn screening blood samples at the state level; consider creating a national or multistate population-based specimen resource for research in which consent is obtained from the individuals from whom the tissue is obtained; such a resource could be an alternative to retaining newborn screening samples for potential use in research.”

American Academy of Pediatrics Newborn Screening Task Force recommendations: how far have we come?

If you are concerned, work to make sure that states continue their efforts to make sure newborn screening samples are handled appropriately, especially if they are stored, but don’t put your baby’s health at risk by skipping or delaying their newborn screen test.

More on Refusing Newborn Screen Tests

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1 thought on “Why Do Some Parents Refuse the Newborn Screening Test?”

  1. In my state they will destroy the card if the parent requests, but I was able to make a crucial diagnosis of congenital CMV by requesting the card be sent to the hospital lab for further testing. We needed a sample from as close to birth as possible, and lacking a time machine, this was the best way to get it. I’m so glad they hang on to the samples!

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