Heel prick test storage and use

The request was successful.

Dear Greater Glasgow NHS Board,

Please accept this as a request under the freedom of information
act. the subject of interest is the heel prick test (guthrie card).
please answer the following:

(1) from which date did your centre first start testing?
(2) from which date did your centre first start storing the cards?
(3) approximately how many cards do you currently hold in storage?
(4) what are the purposes of storing cards once they have been
tested? is research or further testing conducted on the cards and
does any of the generic information pertained on the cards get
used?
(5) are there any instances where use of the stored cards lead to
families being contacted?
(6) do you have a policy for destruction of the cards?
(7) have any cards been destroyed? if so, who requested this?
(8) have any cards or their information/genetic material been
released to any government agency, police, coroners or other party?
if so, who may order a release of such information.
(9) what generic information is available on each card?
(10) what information do you store electronically from these cards?

Yours faithfully,

charlie:faulknor

Sim, Tom, Greater Glasgow NHS Board

Dear Mr Faulknor

 

REQUEST FOR INFORMATION 2248A: Acknowledgement

 

I refer to your request for information below.

 

We are treating your enquiry under our procedures for responding to
requests for information under the Freedom of Information (Scotland) Act
2002/ our procedures for responding to requests for information under the
Environmental Information (Scotland) Regulations 2004.

 

I am dealing with your request and will endeavour to reply to you within
20 working days or less.  Should you have any query about how matters are
proceeding with your request, please make contact with me, quoting the
reference number allocated above in the subject field of any email
correspondence.

 

Yours sincerely

 

 

Tom Sim

Corporate Administration Officer

Acute Services Division

 

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Sim, Tom, Greater Glasgow NHS Board

2 Attachments

Dear Mr Faulknor

 

Freedom of Information (Scotland) Act 2002

REQUEST FOR INFORMATION- 2248A- Response

 

Thank you for your request for information below.

 

We are treating your request under our procedures for responding to
requests for information under the Freedom of Information (Scotland) Act
2002.

 

I can confirm that NHS Greater Glasgow and Clyde holds information as
described by you. The information which we are able to provide is set out
below:

 

(1) from which date did your centre first start testing? 

 

I have been informed by colleagues in Diagnostics that testing began in
1965

 

(2) from which date did your centre first start storing the cards?

 

 From 1965

 

(3) approximately how many cards do you currently hold in storage? 

 

I have been advised by colleagues in Diagnostics that there are
approximately 3 million cards held in storage.

 

(4) what are the purposes of storing cards once they have been tested? is
research or further testing conducted on the cards and does any of the
generic information pertained on the cards get used?

 

The cards are stored for a number of reasons as follows :

 

(1)  Health of the child - eg CMV testing of bloodspots is requested to
determine if infection is congenital or has been acquired after birth. 
This is important in relation to cause of deafness.  In these
circumstances, the requesting clinician would have to gain consent from
the parents for this specific use before the Newborn Screening Laboratory
would release the bloodspot for testing.

 

(2)  Screening Programme/Laboratory Quality Assurance - eg retesting of a
bloodspot if notified of a case not detected by newborn screening;
validation of new screening tests prior to implementation; verification of
existing tests as required.

 

(3)  Child/family benefit (not directly health related) - eg release of
bloodspots to the Procurator Fiscal to identify a deceased person when no
other means to do so.

 

(4)  Public Health/research (indirect benefit to child) - to date this has
been health-related research mainly looking at the feasibility of the
introduction of new screening tests.

 

(5) are there any instances where use of the stored cards lead to families
being contacted?

 

I have been advised by colleagues in Diagnostics that if there was a study
which required the use of patient identifiable information, then the
laboratory would contact the parents with details of the proposed use and
ask for reconsent for that specific purpose.  This has never been required
to date. However, if stored cards were required to be used for further
testing related to the health of the child, then the parents would be
asked for consent for that specific use by the clinician whose care the
child was under (see part (1) in question (4) above for an example).

 

(6) do you have a policy for destruction of the cards?

 

Colleagues in Diagnostics have confirmed that there is a policy for the
destruction of cards.

 

(7) have any cards been destroyed? if so, who requested this?

 

The initial consent form that the parents sign before a bloodspot is taken
asks for permission to store the cards after the initial 12 month period.
If this is not given then the cards are destroyed after that time. However
the parents are contacted, via their GP, after 11 months to ensure that
they have not changed their minds.

 

(8) have any cards or their information/genetic material been released to
any government agency, police, coroners or other party?

if so, who may order a release of such information.

 

I have been advised by colleagues in Diagnostics that cards have been
released, and that only the Procurator Fiscal can order the release of
cards.

 

(9) what generic information is available on each card?

 

The baby's CHI number, date of birth, gender, surname, first name,
gestational age at birth, birth weight, ethnicity, birth rank (ie
singleton, twin etc and order if multiple birth), home address and post
code and hospital of birth.

Mother's or baby's alternative surname (not maiden name).

Mother's date of birth, contact telephone number and whether born in UK or
not.

GP's name, address and practice code.

Date sample taken, who by and their contact telephone number.

Whether sample is a repeat specimen; whether the baby has had a blood
transfusion and if so, the date of the transfusion; if the baby is in
hospital and/or premature; the type of feed the baby is on at the time the
sample is taken ie breast/milk formula/other.

Box for comments on relevant family history eg mother's carrier status.

 

(10) what information do you store electronically from these cards?

 

All the information requested on the bloodspot card is stored
electronically but only from 2005 onwards which is when the current
laboratory information management system (LIMS) was introduced.

 

Should you require any clarification about this letter please contact me
in the first instance.

 

If you are not satisfied with our response to your request, you have a
right to request a review of this decision within 40 working days of
receiving this response.  The procedure for consideration of a review is
detailed in the attached note.  The note also describes your right to
pursue the matter with the Scottish Information Commissioner if, following
a request for review, you remain dissatisfied with the decision of NHS
Greater Glasgow and Clyde.  If following appeal to the Scottish
Information Commissioner you still remain dissatisfied with the outcome,
you have a right of appeal to the Court of Session on a point of law
against the decision of the Scottish Information Commissioner. 

 

If you wish us to review this decision, please complete the form enclosed
and return it to the Head of Board Administration, NHS Greater Glasgow and
Clyde, Corporate HQ, JB Russell House, Gartnavel Royal Hospital, 1055
Great Western Road, Glasgow  G12 0XH. 

 

Yours sincerely

 

Tom Sim

Corporate Administration Officer

Acute Services Division

 

Attached:

FOI Requirement for Review Procedure

FOI Review Request Form

 

 

From: Sim, Tom
Sent: 09 December 2014 16:25
To: '[FOI #243341 email]'
Subject: FOI 2248A- Guthrie Testing

 

Dear Mr Faulknor

 

REQUEST FOR INFORMATION 2248A: Acknowledgement

 

I refer to your request for information below.

 

We are treating your enquiry under our procedures for responding to
requests for information under the Freedom of Information (Scotland) Act
2002/ our procedures for responding to requests for information under the
Environmental Information (Scotland) Regulations 2004.

 

I am dealing with your request and will endeavour to reply to you within
20 working days or less.  Should you have any query about how matters are
proceeding with your request, please make contact with me, quoting the
reference number allocated above in the subject field of any email
correspondence.

 

Yours sincerely

 

 

Tom Sim

Corporate Administration Officer

Acute Services Division

 

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