Newborn screening is a special set of three tests that help identify babies who are at risk for certain conditions. A newborn baby may look healthy, but can have a serious condition that cannot be seen. These conditions can be treated if found early.
Indiana's newborn screening law requires that every baby born in Indiana be tested for 49 conditions (including sickle cell anemia, cystic fibrosis, hearing loss, critical congenital heart disease, severe combined immunodeficiency and spinal muscular atrophy). Click here for a list of the 49 conditions the heel stick currently screens for.
Newborn screening must be done before the baby leaves the hospital. Babies born at home must have newborn screening within one week of birth.
Heel Stick Screen-Before every baby goes home from the nursery, he or she has a small amount of blood taken from his or her heel. This is called a heel stick. The blood is collected on the newborn screen card and referred to as the dried blood spot (DBS) sample.The blood sample that is collected is used to test for a specific group of conditions. If anything concerning is found, the Newborn Screening Laboratory contacts the baby’s doctor.
Hearing Screen-All babies also receive a hearing test to identify possible hearing loss. This is called the Universal Newborn Hearing Screening (UNHS). For more information about UNHS or hearing loss, please click here.
Pulse Oximetry Screen-Beginning in 2012, all babies born in Indiana also have a test to look for critical congenital heart disease (also called CCHD). This test is called the pulse oximetry test. For more information about pulse oximetry or CCHD, please click here.
Click here to view the 2017 Genomics and Newborn Screening Fact Sheet
The dried blood spot (DBS) is collected from the heel stick (see above for more information) and is used to screen for a specific group of conditions. Indiana’s newborn screening law allows for the remaining DBS to be made available for medical research purposes after newborn screening is complete. Important information on what may cause a disease or impact an individual’s health can be learned through the use of the DBS in medical research.
ISDH requests written consent from parents or guardians of newborns to make their child’s DBS available for medical research purposes. The DBS of children whose parent or guardian grants consent is currently stored and made available for medical research purposes for a period of three (3) years and then destroyed. Although saved DBS cards are available for medical research, no identifiable information will ever be released.
If parents do not consent, the DBS is kept for six months to ensure additional screening is not necessary and then destroyed.
Cards for any child born before June 1, 2013, have not been made available for medical research and will be destroyed in a secure manner. Other cards will be destroyed on a schedule in accordance with the three-year retention policy.
You may request that your baby’s DBS be destroyed, regardless of when your baby was born, by completing and sending this form to the Genomics and Newborn Screening Program.
You can also request that your child’s DBS be stored and saved for medical research purposes by completing and sending this form to the Genomics and Newborn Screening Program.
If you have any questions regarding the status of your child’s DBS, please do not hesitate to contact the Indiana Genomics and Newborn Screening Program.
Please direct all requests/questions to:
Genomics and Newborn Screening Program
2 North Meridian St., 2E, Indianapolis, IN 46204
- Ensure that every newborn in Indiana receives state-mandated screening for all designated genetic conditions.
- Maintain a centralized program to ensure that infants who test positive for screened condition(s) receive appropriate diagnosis and treatment and that their parents receive genetic counseling.
- Promote genetic services, public awareness, and education concerning genetic conditions.
Click here to read Indiana’s newborn screening law.
Click here to read Indiana's newborn screening code.
For more information about newborn screening, please visit the National Newborn Screening & Genetics Resource Center by clicking here.