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

o public input into a 2004 consultation about the UK Newborn Screening Programme
Centre’s Code of Practice;

o public input into the laws that relate to this UK newborn blood spot bank;

o ongoing public involvement through members of the public who routinely sit on
research ethics committees.

We suggest two more ways for involving the public in the management of the UK newborn
blood spot bank.

> A public scrutiny panel

This panel would consist of around ten members of the public with access to additional
scientific advisors and administrative support.

At the end of each year, this panel would receive a report from the UK Newborn Screening
Programme Centre of the individual, public health monitoring and research uses of the
stored blood spot cards. It would then issue guidance to the UK Newborn Screening
Programme Centre and to the laboratory directors about these uses, raise any areas of
concern, and identify opportunities for improvement. This panel would also be available to
advise on the potential use of the blood spot cards should any controversial issues arise that
are not resolved by the procedures outlined in the Human Tissue Act and the Code of
Practice.

A public panel such as this would need support and funding. Existing public panels may be
able to take on this role, for example those set up within the NHS to advise on health care
planning or research.

> A 5-yearly public consultation exercise

This 5-yearly public consultation could invite members of the public to comment on the uses
and management of the UK newborn blood spot bank (in a similar way to this consultation).

A 5-yearly public review such as this would need funding and a clear route for reporting its
findings to ensure the public’s views were taken into account by those managing the UK
newborn blood spot bank.

Q9a: Do you agree that there is a need for ongoing public involvement in the management of
the UK newborn blood spot bank?

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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