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

Steps are taken to keep private any personal information contained in, or linked in any way
to, the UK newborn blood spot bank. This is done in different ways, depending on what the
spots are used for, and is guided by the Code of Practice and Research Ethics Committees
described above. Individuals’ identities are protected by removing identifying information
from the blood spots before they can be used.

1.4 What does this consultation ask and what will happen to the findings?

This consultation asks about:

1. Public attitudes to the various uses of stored blood spot cards.

2. Public attitudes about how the UK newborn blood spot bank is managed to serve the
interests of the public and keep personal information private

The consultation is guided by an advisory group of experts with backgrounds in public
health, ethics, law, genetics, laboratory science and patient involvement in research and
health policy. This group advises on how the consultation should be conducted.

The consultation is conducted by a research team with experience of public health,
laboratory science, social science and public involvement in research and health policy
(listed at the front of this document).

We are gathering public attitudes from:

• a web-based consultation in Autumn 2005 (this document)

• interviews and focus groups with members of the public in Autumn 2005

• a working group made up of members of the public which will meet in Spring 2006.
This group will discuss in depth how blood spots can be used and public attitudes to
this. The group will help draft a report of the public’s views on the uses and
management of the UK newborn blood spot card bank.

This report will be considered by the consultation’s advisory group. Taking into account the
views of the public, as well as information about the costs and practical requirements of
storage, this advisory group will make recommendations to researchers, policy-makers and
practitioners about what the UK newborn blood spot bank should be used for and how it
should be managed.

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