Newborn screening is a special set of 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, severe combined immunodeficiency (SCID), spinal muscular atrophy (SMA), hearing loss, and critical congenital heart disease). Newborn screening must be done before the baby leaves the hospital. Babies born at home must have newborn screening within one week of birth.
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 heelstick. The blood is collected in five circles 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.
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.
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.
The dried blood spot (DBS) is collected from the heelstick (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 (6) 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 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 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