stored routinely by newborn screening laboratories for at least 5 years to be available for
checking the quality of the screening programme for which they were initially collected.
In addition to checking the quality of the screening programme, there are a number of
reasons for storing blood spot cards. These reasons may justify keeping the blood spot
cards for more than 5 years.
Although these blood spot cards are stored in several laboratories around the country, they
are stored for the same purposes and are regulated in the same ways. For this reason we
consider these collections together and call them the UK newborn blood spot bank.
Your views will guide the future storage and use of newborn blood spot cards.
1.2 What are the potential uses of the blood spot cards?
Blood spot cards contain four small dried blood spots and some basic information for each
baby. Once newborn screening is completed, these cards are stored and can be used in a
number of ways, each of which is described in more detail in Section 2.
These potential uses include those linked directly to the screening programme, and other
uses that are made possible because these blood spot cards have been stored after
screening. This blood spot bank is unique because the spots are collected from almost all
babies born in the UK when they are about a week old. This makes them particularly useful
for health research relevant to mothers and children.
The blood spot cards can be used after screening to check the result of the original test; to
improve the screening programme; to help families identify why a child has died; for other
tests recommended by the family’s doctor; for research to develop new equipment or tests
for public health monitoring; or for research to help improve the health of babies and their
families in the UK.
1.3 What are the current arrangements to protect the interests of the public and keep
personal information private?
> Parents give informed consent for their babies to be screened
All parents are offered newborn blood spot screening for their babies. A national leaflet is
given to all parents. It can be accessed from www.newbornscreening-bloodspot.org.uk/
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.