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House of Lords: Written Answers and Statements on Myalgic Encephalomyelitis and the Files Held in the National Archives, 24 Janu

Posted Jan 26 2011 10:27am

House of Lords

The Countess of Mar (Crossbench)

To ask Her Majesty's Government whether they will release the public records, reference BN 141/1, relating to Myalgic Encephalomyelitis and Chronic Fatigue Syndrome , from 1 January 1984 to 31 December 1993, including correspondence with members of the medical profession, held in the National Archives ; and why that information is closed to public access until 2072 (78 years) instead of the usual 30 years.
Lord McNally (Minister of State, Justice; Liberal Democrat)

The file BN 141/1 contains a high volume of personal medical information about ME sufferers ( Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/ CFS ). Due to the personal nature of the content, the file remains closed until 2072 under Section 40(2) of the Freedom of Information Act 2000. This exemption applies because the overwhelming majority of this file contains sensitive personal data of named individuals who are believed to still be living. Releasing the file into the public domain would breach the requirement in the Data Protection Act 1998 that personal data be processed fairly and lawfully.

Redaction of this personal information so that the rest of the file can be released has been considered but ruled out. The volume of personal information about ME sufferers and benefit claims within the file means that redaction would render the open part of the file so small that it would cause the contents to be meaningless.

The file closure decision was reviewed in 2010 by the National Archives and the Department for Work and Pensions.
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