3.0 Overseeing the storage and use of the UK newborn blood spot
bank
This section explains in more detail, how blood spots are collected for newborn blood spot
screening, and the current arrangements for how storage and use of blood spot cards is
regulated.
We would like to know your views on these current arrangements.
3.1 Current arrangements managing the UK newborn blood spot bank
As outlined in Section 2, there are a number of ways in which the storage and use of the
newborn blood spot bank are managed:
> Parents give informed consent for their babies to be screened
When parents are offered newborn blood spot screening for their baby, they are provided
with a pre-screening leaflet enabling them to make an informed choice about screening.
As outlined in Section 1, this leaflet contains the following wording:
What happens to your baby’s blood spots after screening?
After screening, newborn blood spots are stored for at least 5 years and may be used in a
number of ways:
> To check the result or for other tests recommended by your doctor
> To improve the screening programme
> For research to help improve the health of babies and their families in the UK. This
research will not identify your baby, and you will not be contacted.
The use of these blood spots is governed by a Code of Practice, available from your midwife
or via www.newbornscreening-bloodspot.org.uk
In the future there is a small chance researchers may want to invite you or your child to
take part in research linked to the blood spot programme. If you do not wish to receive
invitations to take part in research please let your midwife know.
> Storage of blood spot cards is regulated
Laboratories test the blood spots for the conditions within the blood spot screening
programme. More information about this programme can be accessed at
www.newbornscreening-bloodspot.org.uk/
The blood spot cards are stored for 5 years for the direct purpose of the screening
programme. Blood spot cards are stored beyond this initial 5 years for a number of potential
uses, discussed in detail in Section 2.
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