2.6 Blood spot cards are used with additional ‘linked’ information
Public health monitoring (2.3 above) and research (2.4 and 2.5 above) about health
conditions using newborn blood spot cards are often most beneficial if the blood spot cards
can be linked to additional information. As explained below, steps are taken to ensure that
personal information is protected and that the identity of individuals is not revealed.
More information about the use of personal information in medical research is available from
www.mrc.ac.uk/pdf-pimr.pdf/
Additional information about individuals is available via the Office of National Statistics, for
example, information may be obtained from birth registration records. Additional information
about individuals is also available through the NHS Hospital Episode System. This system
includes data about when people attend hospital, for example, information that a child has
been admitted to hospital for a sickle cell disorder or diabetes.
If blood spot cards can be linked to these different types of additional information it allows
researchers to relate the results of tests done on the stored blood spots to subsequent
health status. It is also possible to select blood spots from children with and without specific
diseases and to test them for different infections or genetic markers. For example,
researchers can explore whether certain genetic variations might predict diabetes.
Researchers recognise the importance of keeping personal information private and take
steps to do this. Studies that link blood spots to additional information do not identify
individuals.
Linking additional information to the blood spots in these ways is strictly controlled. More
explanation and an opportunity to comment on these arrangements are provided in
Section 3.
Q6a. Please consider the following statement and tick one of the 5 options below:
It is appropriate that blood spots can be linked to additional information for research or public
health monitoring
1. Strongly agree
2. Agree
3. Neither agree nor disagree
4. Disagree
5. Strongly disagree
Please give your reasons for your answer:
Q6b. Do you have any other comments about the linking of additional information to the
blood spots? If yes, please specify exactly what you are concerned about and why.
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