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Specimen Collection

Newborn screening has the potential to save or greatly improve the life of a newborn; therefore, newborn screening is mandatory in New York State (Public Health Law Section 2500-a, 10 NYCRR Section 69-1.4). Written consent from the parent(s) is not required.

There are two circumstances where newborn screening is exempt:

  1. When the parent or guardian of the infant is a member of a recognized religious organization whose teachings are contrary to the testing requirement, he or she may choose to opt out of testing of their child. If a parent or guardian objects to testing based on religious grounds, the hospital administrator, or another person designated to register the birth of the child (as defined by Public Health Law Section 4130) has the following responsibilities: 
    • Fully inform the parent or guardian of the consequences of refusal.
    • Inform the Newborn Screening Program of such parental refusal by submission of a signed refusal of newborn screening for religious reasons form or a similar document.
      • This form must include a statement indicating that the parent or guardian is a member of a recognized religious organization and has been fully informed of the benefits of screening as well as the possible consequences of not having the newborn tested.
      • Submit the Newborn Screening Blood Collection Form with complete demographic information, but without the blood sample, to the screening program.
      • “Declined testing” should be written across the top, the green copy should be retained by the hospital, and the pink copy given to the parents.
  2. If a newborn is receiving compassionate (comfort) care only, and is not expected to survive, screening may be declined by the parent or guardian. As above, the attending physician must submit a Newborn Screening Blood Collection Form with complete demographic information, but without a blood sample. This is to be accompanied by written documentation of the reason for compassionate care and parental declination of screening. It should be explained to the parent or guardian that even in such a case, there may be a benefit to newborn screening. Screening results may shed light on the cause of the newborn’s medical condition and the remaining blood spots would be stored, providing the opportunity for future testing if the diagnosis remains unclear.

Resources

The following educational materials are available to assist you with proper specimen collection. Collection of a specimen suitable for testing is paramount for successful early detection:

  • The New York State Newborn Screening Program has produced a video demonstrating proper specimen collection technique (DVD available upon request).

  • The poster, “Simple Spot Check” illustrates examples of unsuitable specimens and lists possible causes (available upon request).
  • Instructions for specimen collection can also be found on the back of the specimen collection form.

 

instructions on back of form

Specimen Collection Guide (Updated July 2016)