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MRC secret ME files question page.

Discussion in 'Action Alerts and Advocacy' started by bullybeef, Jun 2, 2010.

  1. bullybeef

    bullybeef Senior Member

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    North West, England, UK
    Hi guys,

    I have posted the majority of this on a UK ME forum, but I guess our international friends would be interested in the following:

    MRC secret ME files question page.
    I have been browsing the nation archives website and found the location of the information page regarding the MRC's (Medical Research Council) decision to bury the records concerning ME until 2071.
    http://www.nationalarchives.gov.uk/c...accessmethod=5

    You can actually post questions as to why they see the need to do this here:
    http://www.nationalarchives.gov.uk/c...EF=FD23/4553/1

    It probably won't make much of a difference to bombard them with questions, but I doubt it would do any harm if you guys are up to it.

    I have also found the following here: http://www.sar.nationalarchives.gov....ce=4553&item=1

    That would make the youngest person mentioned 101 years old in 2071.
     
  2. bullybeef

    bullybeef Senior Member

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    North West, England, UK
    Today, I recieved the following response:

     
  3. Dx Revision Watch

    Dx Revision Watch Dx Revision Watch no longer posts

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    Previous response under FOI from December 09:

    Response from Public Services Development Unit, National Archives

    28 December 2009

    http://meagenda.wordpress.com/2009/...-services-development-unit-national-archives/

    Shortlink: http://wp.me/p5foE-2yP

    Related material: The Medical Research Council’s secret files on ME/CFS: Margaret Williams

    Response from Public Services Development Unit, National Archives

    Received via email, 22 December 2009

    Dear XXXXXXXXXX,

    Thank you for your enquiry of 17th November 2009 requesting a review of FD 23/4553/1 – Myalgic encephalomyelitis (ME)/postviral fatigue syndrome (PFS): papers and journal articles; correspondence and enquiries with MRC replies – Closed extracts: 40 pages – 1988-1997.

    The Freedom of Information Act 2000 gives you two rights of access when you write to us asking for information. You have the right to know whether we hold the information that you are looking for, and you have the right to have the information given to you. These rights may only be overridden if the information you are looking for is covered by an exemption in the Act.

    Unfortunately, all of the information which you are looking for is covered by exemptions. This means that we cannot give you any of the information. We have set out details below of which exemptions we have applied and why.

    Which exemption applies?:

    Section 40 exemption: this section exempts personal information about a `third party’ (that is, someone other than the enquirer), if revealing it would break the terms of the Data Protection Act 1998, or if the person that the information relates to would not have a right to know about it or a right of access to it under that Act (because of its exemption provisions). The 1998 Act prevents personal information being released if, for example, it would be unfair or at odds with the reason why it was collected, or where the individual whom the information was about had properly served notice that releasing it would cause major and unnecessary damage or distress.

    Why this exemption applies:

    The Section 40 (2) exemption is therefore seen to be engaged towards the overwhelming majority of this file on the grounds that such is seen contain the personal sensitive data of named individuals who are believed to still be living. Whilst The National Archives is unable to comment on the specific nature of such information, it may confirm that such includes the medical details of named individuals. As such it would be considered unfair to these named parties were this material to be released into the public domain. Consequently it has been determined that the public interest is best served in this instance by ensuring that the personal sensitive information of living individuals is not released into the public domain against their reasonable expectations and that all such material is processed fairly and lawfully.

    Which exemption applies?:

    Section 41 exemption: this section exempts information from any other person if releasing it would mean breaking the terms of confidentiality in a way that is actionable by that or any other person.

    Why this exemption applies:

    Section 41 exemption: this section exempts information from any other person if releasing it would mean breaking the terms of confidentiality in a way that is actionable by that or any other person. The files contain opinions and information that was given in confidence and the release of which could be actionable.

    If you are dissatisfied with any aspect of our response to your request for information and/or wish to appeal against information being withheld from you please send full details within two calendar months of the date of this letter to:

    The Quality Manager
    Public Services Development Unit
    The National Archives
    Kew, Richmond
    Surrey TW9 4DU

    You have the right to ask the Information Commissioner (ICO) to investigate any aspect of your complaint. Please note that the ICO is likely to expect internal complaints procedures to have been exhausted before beginning his investigation.

    If I can be of further assistance, please do not hesitate to contact me.
    Kind regards,

    (Signed on behalf of)

    Freedom of Information Centre
    Information Policy and Services Directorate
    The National Archives
    Kew
    Richmond
    Surrey TW9 4DU
    0208 876 3444 ext 2552
    Fax +44 (0)20 8487 1976

    If you would like to contact us again regarding this request, please contact the helpdesk:

    via e-mail:By replying to this e-mail or (020 8876 3444)

    Remember to quote your call reference number: F0023328 in any correspondence, as this will assist us in providing you with a quick response.

    www.nationalarchives.gov.uk

    ----------

    National Archives site

    If you go to these three URLs, below, scroll each page for content and then open all the links under “Context” on each of the three parent pages, and their child pages, there is information about the nature of some of the material archived:

    http://www.nationalarchives.gov.uk/...69707&CATLN=6&Highlight=&FullDetails=True&j=1

    http://www.nationalarchives.gov.uk/...98595&CATLN=6&Highlight=&FullDetails=True&j=1

    http://www.nationalarchives.gov.uk/...75665&CATLN=7&Highlight=&FullDetails=True&j=1

    Extract from this source:

    http://www.nationalarchives.gov.uk/...75665&CATLN=7&Highlight=&FullDetails=True&j=1

    [...]

    Access
    Closure status Closed Or Retained Document, Open Description
    Further information about access conditions is available
    Access conditions Closed For 73 years
    Record opening date 01 Jan 2071

    Freedom of Information Act Exemption Information
    Access Status for Item FD 23/4553/1

    Extract Reference 40 pages

    FOI decision date 2008

    Exemption 1 Personal information where the applicant is a 3rd party

    Explanation These extracts contain information supplied in confidence by named individuals to the Medical Research Council in relation to applications for research grants and confidential discussions on the selection of candidates. It also contains medical information on named members of the public. The youngest person was aged at least 27 by 1997. The entire piece was previously closed for 50 years.

    Exemption 2 Information provided in confidence

    Explanation These extracts contain information supplied in confidence by named individuals to the Medical Research Council in relation to applications for research grants and confidential discussions on the selection of candidates. It also contains medical information on named members of the public. The youngest person was aged at least 27 by 1997. The entire piece was previously closed for 50 years.
     
  4. Sean

    Sean Senior Member

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    Have they never heard of redacting?
     
  5. HopingSince88

    HopingSince88 Senior Member

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    Maine
    Hello Sean. Exactly. Why aren't they redacting? This would be the logical process to use in such a situation.
     
  6. Galena1

    Galena1

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    South West UK
    Hi All - Redaction is the obvious route to go down here. Personally, I believe that there is a definite reluctance by governments worldwide to acknowledge the true scale of ME/CFS because the financial impact would (could) be astronomical. It sounds to me like the information source is using the 'letter of the law' to conceal the 'spirit of the law'. Odd that redacting is viewed in the UK as perfectly acceptable by government when relating to MPs expenses!
     
  7. Dx Revision Watch

    Dx Revision Watch Dx Revision Watch no longer posts

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    Just to clarify, the response received under FOIA, in December 09, that I have posted above, resulted out of a request for a previous decision to be reviewed which had been initiated by a third party and not by me, at the end of last year.

    I was given permission to publish the response by this individual who did not wish to have their name and contacts details made public.

    This is not an issue that I currently have an interest in and I have no further information to provide other than that which I have already published here and on my site. If others wish to take this issue forward I am unable to provide them with any advice as to how they might proceed - other than to go to appeal.

    Part V APPEALS

    http://www.opsi.gov.uk/acts/acts2000/ukpga_20000036_en_7#pt5

    As with all FOI issues, I advise against the submission of multiple requests for the same information - this is not productive. Once a request has been submitted it will be processed according to the Act and there is an appeals procedure if dissatisfied with the response.


    With reference, generally, to the redaction of documents and with no specific reference to this issue, it is not always possible to render the content of documents anonymous solely by redacting names.

    There may be instances where information is being held by organisations and agencies that are subject to the FOIA which may now form part of legal cases or investigations or where information held is now subject to a family court case and reporting restrictions [Clauses 30, 31, 32].

    There may be instances where documents contain references to medical treatment or to complaints against medical professionals or medical institutions where incidents have taken place which could identify the individuals concerned even though names are redacted, or where information has been supplied in confidence [Clauses Personal information: 40, 41].

    There are other clauses under which information can be withheld under FOI which include details of research proposals, where the publishing of information could prejudice the commercial interests of the researchers and institutions involved [Clause 43 (2)]. This could include training packages or publications marketed commercially following the publication of a study, test kits etc.

    Information can also be withheld if the information is intended for future publication [Clause 22].

    ------------------

    The Freedom of Information Act 2000 is here:

    Introduction

    http://www.opsi.gov.uk/acts/acts2000/en/ukpgaen_20000036_en_1

    Act 2000

    http://www.opsi.gov.uk/acts/acts2000/ukpga_20000036_en_1.htm


    Part II Exempt information

    http://www.opsi.gov.uk/acts/acts2000/ukpga_20000036_en_3#pt2

    ----------

    In another thread, someone has written that they have signed a UK petition asking why "the Wessely documents" are being withheld. I have asked this person to provide a source for their understanding that the documents in question relate to Prof Wessely, but have received no response as yet.

    I find the endless speculation around this issue somewhat tedious.

    Suzy
     
  8. HopingSince88

    HopingSince88 Senior Member

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    Maine
    Suzy,
    Thanks for the info on why redaction may not work.
    Hoping
     
  9. Dx Revision Watch

    Dx Revision Watch Dx Revision Watch no longer posts

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    ETA: Are you aware that the right to edit your own posts beyond 4 days was removed on 2 June and that you cannot now delete your posts?

    If you share my concerns for the implications for this change and for the cavalier manner in which it has been imposed without prior discussion please add your concerns to the thread below and vote against this sanction in the poll.


    To vote and register your objection go to:

    http://www.forums.aboutmecfs.org/showthread.php?5368-Forum-adjustment-editing-your-post

    EDIT 2: Please see Cort's message. Editing rights are now reinstated.

    ---------------


    Speaking generally and with no specific reference to the Kew/MRC archives issue:

    Another reason for information being withheld under FOIA is where a research study involves the production of manuals for use by study participants or by reseachers/nurses/OTs etc who are applying interventions being trialled in the study.

    For example, in 2005, as part of an FOI request for information around the FINE Trial (recently published) I requested copies of the training manuals.

    These were withheld on the grounds that members of the public might use these manuals to self administer treatments without supervision and potentially damage themselves; the "prejudicing commercial interests" clause was also cited.

    Another reason for information being withheld is cost of compiling the information requested [Clause 12]:

    12 Exemption where cost of compliance exceeds appropriate limit .(1)
    Section 1(1) does not oblige a public authority to comply with a request for information if the authority estimates that the cost of complying with the request would exceed the appropriate limit.


    I have had requests rejected under Clause 12, where, for example, all documents associated with an issue had been requested. The policy for what figure would exceed "the appropiate limit" for compiling, copying and redacting (where necessary) information appears to vary from organisation to organisation.

    A request for a small amount of information from the Big Lottery Fund was rejected, several years ago, as they did not hold this information but instead, I was offered over 400 sheets of documentation relating to the AfME ME Observatory which had just been made available to another enquirer. This represented virtually all the information being held by the BLF, was nearly a ream thick and for which no charge was levied.

    Suzy
     

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