What Conditions are Screened For in Iowa?
Amino Acid Disorders
Fatty Acid Oxidation Disorders
Organic Acid Conditions
About Newborn Screening in Iowa
The Iowa Newborn Screening Program (INMSP) was established by the Iowa legislature to screen for all congenital and inherited conditions specified by the program and approved by Iowa’s Board of Health. Birthing providers collect a small sample of blood from the baby (usually by doing a "heel stick") and put the drops of blood on a special filter paper. The paper is then dried and sent to the state designated central testing laboratory, which is the State Hygienic Laboratory (SHL). The SHL screens the dried blood spot specimen for over 50 conditions that can cause serious health problems like illness, physical disability, intellectual disability, or even death if left untreated.
Many conditions can be screened simultaneously from a single blood spot specimen using tandem mass spectrometry technology (MS/MS). The Iowa Neonatal Metabolic Screening Program began a pilot study in October 2001 for the disorders detectable by MS/MS. Almost all Iowa infants born after October 2001 have been screened for all currently known MS/MS detectable conditions unless a parental waiver was signed. Iowa also began screening for Severe Combined Immunodeficiency (SCID) in 2014.
If your newborn’s test indicates the possibility of a condition, it is important that your physician be able to reach you to discuss the next steps. Since treatment within a short amount of time from birth has shown to drastically increase your child’s chances at enjoying a life with fewer complications, it is necessary that you provide the hospital with a current address and phone number so your care provider can reach you and tell you how to begin the treatment process, if necessary. Any directions given by a physician regarding newborn testing must be followed as soon as possible, as the quicker the treatment begins, the lesser the chance the condition will have a negative effect on your newborn’s health.
How is Newborn Screening Paid for in Iowa?
The screening fee is $122 and it will typically be included with all of the other costs associated with childbirth. The fee will be paid by the newborn’s parents using whatever means were used to cover the birth of their child.
Policies and Resources
While it is discouraged, Iowa law allows parents to refuse to have their newborn screened. Health care providers must provide documentation in the newborn's medical record regarding the parent's decision to waive the screening. The health care provider must then notify the State Hygienic Laboratory of the waiver and provide the mother's name, baby's date of birth, and the baby's name and gender.
Support for families:
One of the concerns most families face when they are told about their child’s condition is the increased cost of medical care. Fortunately, the state, through The University of Iowa, provides a special medical formula and foods program for individuals identified by the newborn screening program who require a specialized diet or regimen to manage their condition. Payment for these services will vary depending on the individual family’s ability to pay. Full fee or sliding fees will apply unless the family has exhausted all other insurance and government assistance programs. For more information, please contact your child's health care provider or the state genetics coordinator with the Iowa Center for Congenital and Inherited Disorders at 1-800-383-3826.
Storage and Use of Dried Blood Spots:
After the screening tests are done, there is a very small amount of dried blood spots left on the cards. Iowa law authorizes the lab to store these residual, or leftover, samples for a period of five years in a secure facility at the newborn screening lab in Ankeny, Iowa. Iowa law requires information to be given to all parents regarding the retention, use and disposition of their child’s residual dried blood spots. In some instances, parental consent will be required for the state to release the newborn’s residual dried blood spots to outside parties.
The residual dried blood spot specimens are stored for the first year at sub-zero temperatures, and then the remaining four years at room temperature in a locked, secure storage area. The specimens are destroyed after this time. All identifying information is stored separately from the residual dried blood spots in an access protected data system and the information is treated as confidential. A unique identification number is used to link the identifying information to the sample if necessary.
Iowa stores leftover dried blood spots for several reasons. First, Iowa wants to make sure the testing lab maintains the highest quality of operations and therefore samples of the residual specimens are used to monitor the quality of test results. This is a very common practice and one even required by law in most laboratories. The baby's name and date of birth are not revealed when doing quality control testing. Quality testing ensures that test results are reliable and consistent. The lab wants to be sure that the testing done one month produces the same accurate result as the testing done the next month.
Secondly, when testing begins for a new disease or when an improved testing method starts in the lab, professional staff needs to make sure the new test is running properly. This practice needs to be done on the same type of specimens that the testing will be done on in the future, so all practice testing must be done on existing dried blood spots from newborns. The babies' names and dates of birth are not revealed when the dried blood spots are used for this type of testing.
Finally, the required storage will help you and your child. In some cases, a child later develops health problems and a parent or healthcare provider might request a repeat or other health-related testing on the residual specimen to help determine the cause of the new problems. When the family or the baby’s healthcare team requests results or samples, the baby's results can be repeated if needed without getting another blood sample from the baby. Also, the baby's sample is available to parents to help identify a missing or deceased child.
Dried blood spots can help Iowa babies in other ways unrelated to newborn screening. If an infant dies without a cause of death being confirmed and the treatment prior to death does not allow for a “pure” sample, like when the child receives a blood transfusion, the infant's dried blood spots may be requested. This will help families with the closure that comes from explaining the cause of the infant's death as well as providing risk information to the family for future pregnancies. Also, a physician or genetic counselor may request a newborn specimen for diagnostic testing.
The dried blood spot storage will help both the state of Iowa and the world. Throughout the world, dried blood spots are used to examine public health issues like childhood cancer, type I diabetes, lead poisoning, cytomegalovirus infection, HIV/AIDS, and other disorders that impact children. However, public health studies and research in Iowa may be done only if the researchers follow these guidelines:
- The researcher must obtain informed consent from the parent or guardian for the release of their child's residual newborn screening specimen for research purposes.
- The project must be done to help develop a new newborn screening test or to better understand diseases for the benefit of the general public.
- The baby's name and any identifying details about the baby are removed before the sample is provided.
- The Institutional Review Board (IRB) must approve the project to make sure it meets high ethical standards and to ensure that the privacy and safety of the babies is fully protected.
- The project must be approved by the Congenital and Inherited Disorders Advisory Committee to make sure it meets high ethical standards and to ensure that the privacy and safety of the babies is fully protected.
- The project must be approved by the Iowa Department of Public Health to make sure all privacy and confidentiality laws are being followed.
- Any researchers requesting residual dried blood spot specimens with identifying information must go through the above channels and in addition must first obtain informed, written consent from the individual, parent or guardian before the state of Iowa will release any specimens.