Heel prick test storage and use

The request was successful.

Dear Oxford University Hospitals NHS Trust,

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

FOIA (RTH) OUH,

Our reference: FOI:2859

Dear Sir/Madam,

Thank you for your request of 28th January in which you asked for information about Heel Prick Test Storage and Use

Your request is being considered and Oxford University Hospitals Trust will respond within 20 working days in compliance with the Freedom of Information Act 2000. This means that the trust will send a response to you by 25th February

There may be a fee payable for this information. You will be informed if this is the case and you can decide if you wish to proceed with your request.

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Please contact me if you have any have further enquiries about your request. I would be grateful if you could quote the reference number given at the top of this email.

Yours sincerely,
Dr Tom Mansfield
Freedom of Information Officer
Information Governance Team
Rm 3A40 Level 3 Academic Block | John Radcliffe Hospital | Headley Way | Oxford| OX3 9DU

Please note this email address is not suitable to receive confidential Information. For any person-identifiable, sensitive or confidential email please use [email address]
Recipients should be aware that all emails received or sent by this Trust are subject to the Freedom of Information Act 2000 and therefore information within them may be disclosed to a third party. Please note that under our obligations to the Data Protection Act 1998, we will not disclose any personal information without your consent.

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FOIA (RTH) OUH,

1 Attachment

Dear Sir/Madam,

I am writing to respond to your request sent [date]. OUH can confirm that it holds the data that you requested.

(1) From which date did your centre first start testing?
Testing commenced circa 1975. This was initially on a pilot basis. From then on there was a gradual increase in uptake and by the mid 1980s the laboratory was providing comprehensive screening coverage across Oxfordshire, Buckinghamshire and Milton Keynes. Additionally the Oxford screening laboratory commenced screening for the Berkshire area in September 2006.

(2) From which date did your centre first start storing the cards?
1975

(3) Approximately how many cards do you currently hold in storage?
600,000

(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?
Spots have been used for:
• Unlinked Anonymous Seroprevalence Surveys by Public Health England – Now discontinued
• The examination of blood spots in order to assist with the monitoring of blood spot quality.

Data:
• Performance audits of the Newborn Blood Spot Screening Programme. This data is fed back regionally on a quarterly basis and nationally on an annual basis.

(5) Are there any instances where use of the stored cards lead to families being contacted?
Not at present, any such request by researchers would require appropriate ethical clearance.

(6) Do you have a policy for destruction of the cards?
Parents requesting destruction of cards are asked to meet and discuss the matter with Head of Department who will then present them with the card.

(7) Have any cards been destroyed? If so, who requested this?
We can only recall one case of a card being passed to a parent as per the above policy.

(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?
Yes, parent, patient’s consultant, police.

(9) What generic information is available on each card?
See attached

(10) What information do you store electronically from these cards?
See attached

Please note that on 1 November 2011 the Oxford Radcliffe Hospitals NHS Trust (ORH) merged with the Nuffield Orthopaedic Hospital NHS Trust (NOC) to form the Oxford University Hospitals NHS Trust (OUH). Our response reflects these changes. Therefore, we consider that Oxford University Hospitals Trust has released to you all of the information that it holds in relation to your request.
Internal review

If you are dissatisfied with the service or response to your request you can ask for an internal review by writing to:

Freedom of Information Office, John Radcliffe Hospital, Headley Way, Headington, Oxford OX3 9DU.

If you remain dissatisfied with the handling of your request or complaint, you have a right to appeal to the Information Commissioner at:

The Information Commissioner's Office,
Wycliffe House, Water Lane,
Wilmslow,
Cheshire,
SK9 5AF.

Telephone: 0303 123 1113 Website: www.ico.gov.uk
Provision of this information does not constitute permission for its commercial re-use in terms of the Re-Use of Public Sector Information Regulations 2005. You are free to use the information for your own use, including for non-commercial research purposes. The information may also be used for the purposes of news reporting. However, any other type of re-use will require permission from the Oxford University Hospitals NHS Trust.

Yours sincerely,

Dr Tom Mansfield
Freedom of Information Officer
Information Governance Team
John Radcliffe Hospital | Headley Way | Oxford| OX3 9DU
Tel: 01865 226911

Recipients should be aware that all emails received or sent by this Trust are subject to the Freedom of Information Act 2000 and therefore information within them may be disclosed to a third party. Please note that under our obligations to the Data Protection Act 1998, we will not disclose any personal information without your consent

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