Storage of the tests

Different laboratories will have different policies relating to what happens to your baby's newborn screening blood sample after it has been tested. You should ask your caregiver about the laboratory policy and procedures for your area.

Many laboratories will keep the blood samples for several years (for example in NSW, Australia it is 50 years). This can be for various reasons, including:

	To allow for normal quality control practices.
	For further testing if the parents give written consent (or the child gives written consent once legally eligible in age), to provide additional medical information.
	To carry out additional testing under order of a lawful authority.
	To be used for research. This is usually after all information identifying who has given the sample is removed. For example, in New York in the late 1990's, the newborn screening test was used to find out the percentages of babies who were being born with the HIV/AIDS virus (without identifying the individual babies).
	To possibly create a genetic database.

The laboratory should have strict confidentiality guidelines about storage and access to stored blood samples and how they can be used for future testing. Ideally parents should be given the choice as to whether they consent to these records being kept and be given some assurances that the sample is destroyed, if they prefer this.


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