Q1b. Do you have other comments about the use of blood spot cards to monitor and
improve the screening programme?
2.2 Blood spot cards are used to directly benefit individuals and families
Stored blood spot cards may be used for the direct benefit of the family or child. For example
if a baby has died but the cause is unclear, at a doctor’s request, the baby’s blood spot card
can be tested after an interval of many years to try to identify the cause. This may provide
valuable information for parents about the cause of death, and can provide families with
information about their risk of having another baby with that condition.
Blood spots might also be tested to try to identify the body of someone who has been killed
in a disaster when there is no other way to identify them. For example, newborn blood spot
cards have been used to identify bodies of people killed in a factory fire and those killed in
the tsunami on Boxing Day 2004.
These uses of the blood spot cards are uncommon but are of direct benefit to individuals or
their families. When they are used to help in situations such as those described above, this
can be of enormous value to the family involved. A few families may benefit from these uses
in the first 5 years, when the spots are stored for the screening programme. However, if
blood spot cards are stored for longer, these benefits will continue to be possible over a
longer period.
Q2a: Please consider the following statement and tick one of the 5 options below:
It is appropriate that stored blood spot cards be used for the benefit of individuals and their
families.
1. Strongly agree
2. Agree
3. Neither agree nor disagree
4. Disagree
5. Strongly disagree
Please give your reasons for your answer:
Q2b: Please consider the following statement and tick one of the 5 options below:
Blood spot cards should be stored for more than 5 years for uses that directly benefit
families.
1. Strongly agree
2. Agree
3. Neither agree nor disagree
4. Disagree