NEWBORN GENETIC SCREENING

What is newborn genetic screening?

Newborn genetic screening is a health program that identifies treatable genetic disorders in newborn infants. Early intervention to treat these disorders can eliminate or reduce symptoms that might otherwise cause a lifetime of disability.

Who performs newborn screening?

Newborn genetic screening programs are conducted worldwide. In the United States, newborn screening programs are developed and run by individual states. Each state decides which disorders to test for and how to cover the costs of screening.

Who is screened?

In most cases, newborn infants are automatically screened in the hospital shortly after delivery.

Who pays for screening?

Individual states in the United States finance their newborn screening programs in different ways. Most states collect a fee for screening, which ranges from less than $15 to nearly $60 per newborn. Health insurance or other programs can pay this fee for the newborn's parents.

Often, the fee charged does not fully cover the cost of screening, so public health system funding is used to supplement the program. Financing a screening program comes with an expectation that the benefits of testing - early detection and treatment - will equal or exceed the cost.

What happens to samples after they are used for screening?

For more information on this topic see the video: An Introduction To Newborn Residual Bloodspots

Who decides?

Lawmakers in each state have enacted legislation that defines the state's newborn screening program. From time to time, these programs need review and revision to incorporate new technologies, address financial issues and ensure that the screening program is meeting the needs of the state's residents.

When developing a policy, lawmakers must consider the following questions

• Which disorders should be included in the screening program?
• Who pays for the screening program, and how?
• Who should be screened?
• Who has access to test results?
• Who benefits from the screening program?
• What are the potential risks of screening?

Funding provided by a Howard Hughes Medical Institute Precollege Science Education Initiative for Biomedical Research Institutions Award (Grants 51000125, 51000176)