Newborn screening is mandatory in all 50 U.S. states, but nearly every state allows parents to opt out under specific circumstances. The details of what’s screened, how refusal works, and what happens to your baby’s blood sample afterward all vary by state, because newborn screening is governed at the state level rather than by a single federal law.
How Screening Requirements Work State by State
Newborn screening in the United States is a state-based public health program. Each state and territory runs its own program and sets its own policies about which conditions are included. There is no federal mandate requiring screening, but every state has independently passed laws making it a standard part of newborn care. The federal government maintains a Recommended Uniform Screening Panel (RUSP) that lists core and secondary conditions states should test for, and most states screen for all or nearly all of them.
In practice, this means your baby will be screened automatically at the hospital or birthing center. The process includes three components: a blood test from a small heel prick, a hearing test, and a pulse oximetry test that measures oxygen levels in the blood to check for critical congenital heart defects. As of 2018, all 50 states and Washington, D.C., have programs in place for pulse oximetry screening. That screening alone reduces early infant deaths from critical heart defects by 33%, preventing roughly 120 deaths per year.
When and How Screening Happens
Timing matters. Babies need to be screened during the first few days of life because some of the conditions detected require immediate treatment. The standard window is between 24 and 48 hours after birth. If a baby is tested before the 24-hour mark, they may need to be retested, since certain metabolic markers haven’t had time to show up in the blood yet. Some states require a second screening at one to two weeks of age as a safety net.
The blood test involves a quick heel prick to collect a few drops of blood on a special filter paper card. This single sample is used to screen for dozens of conditions at once, including metabolic disorders, hormone deficiencies, and blood diseases like sickle cell disease. The hearing screen uses small earphones or sensors to check how your baby responds to sound. Pulse oximetry involves placing a sensor on the baby’s hand and foot to measure blood oxygen levels, a painless test that takes only a few minutes.
Can Parents Refuse Screening?
Most states allow parents to decline newborn screening, though the grounds for refusal and the paperwork involved differ. Religious exemptions are the most widely available. In California, for example, a parent who objects on religious grounds must put the refusal in writing, sign it, and have it placed in the newborn’s medical record. The hospital is required to provide a department-approved refusal form and, if the parent cannot read it, to translate or read it aloud in a language they understand.
Some states also permit philosophical or personal belief exemptions. A small number of states have no exemption at all, meaning screening is legally required regardless of parental preference. The specifics change over time as state legislatures update their laws, so checking your own state’s current policy is the only way to know exactly what applies to you.
Refusing screening does not typically trigger legal consequences. The American Academy of Pediatrics holds that state intervention against a parental decision should only be sought in rare cases where the decision places a child at substantial risk of serious harm. Because most of the conditions detected by screening are individually rare, the threshold for overriding a parent’s informed refusal is seldom met. When parents do refuse, clinicians are expected to educate them thoroughly about the risks, but if the parents remain firm, their decision is generally respected.
What It Costs
For most families, newborn screening is free at the point of care. Under the Affordable Care Act, most health plans, including Marketplace and Medicaid coverage, must cover a set of preventive services for children at no cost. The covered newborn screenings specifically include blood screening, hearing screening, bilirubin testing, sickle cell screening, thyroid screening, and PKU screening, among others. You generally won’t pay a copayment or coinsurance for these services when they’re provided by an in-network provider, even if you haven’t met your deductible. That said, coverage can vary by plan, and zero cost is not guaranteed in every case.
What Happens to the Blood Sample
After screening is complete, a small amount of dried blood remains on the filter paper card. What happens next depends entirely on where you live. States handle these residual dried blood spots differently: some destroy them after a set period, some store them for years, and some make them available for public health research.
This practice has drawn legal and ethical scrutiny. Individuals have objected to states retaining and using even de-identified blood spots for research purposes without parental consent, particularly since the samples were collected through a mandatory program. A small number of states now require explicit parental consent before residual samples can be used in research. In other states, parents may be able to request that the sample be destroyed after screening is finished, but they need to actively ask. If sample storage or research use concerns you, contact your state’s newborn screening program directly to learn what options are available.