The storage and use of newborn babies’ blood spot cards: a public consultation



2.0 Uses of the UK newborn blood spot bank

Here we ask you to tell us your views about what the blood spot cards are used for. We shall
ask you later to share your views on how the UK newborn blood spot bank is managed to
serve the interests of the public
and keep personal information private (see Section 3).

2.1 Blood spot cards are used to monitor and improve the screening programme

The UK Newborn Screening Programme Centre standards for newborn blood spot screening
require all blood spot cards to be stored for at least 5 years to maintain the high quality of the
screening programme.

Newborn screening laboratories and the UK Newborn Screening Programme Centre use
information from existing blood spot cards to monitor and improve the screening programme.
They use the blood spots to double check the accuracy of the screening tests they are using.
For example they may retest a number of blood spots from time to time to confirm result.

The laboratory may also use stored blood spots to develop and check new methods of
testing for conditions for which screening is currently offered. Stored blood spots might also
be used to develop tests for different conditions for which screening might be offered in
future.

Using blood spots to monitor and improve screening is essential for the screening
programme. If blood spots could not be used for these purposes the newborn blood spot
screening programme would provide a poorer service to parents. It would not be so
successful in saving lives and preventing severe disability from a few rare but serious
conditions. Nor could it make improvements as new tests and new technologies are
developed.

Using blood spots to develop tests for different conditions, which might be included in routine
screening in the future, may raise concerns about whether families will be contacted with
results they were not expecting. This problem is prevented by testing blood spots only after
they have been separated from information identifying individuals, so the testing is done
anonymously.

Q1a. Please consider the following statement and tick one of the 5 options below:

It is appropriate that blood spot cards can be used by laboratories as described above to
monitor and improve the screening programme.

1. Strongly agree

2. Agree

3. Neither agree nor disagree

4. Disagree

5. Strongly disagree

Please give your reasons for your answer:



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