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EDUCATION AND DEBATE:
John Alexander
Research ethics committees deserve support
BMJ 2005; 330: 472-473 [Full text]
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Rapid Responses published:

[Read Rapid Response] Ethics of tissue retention
Roger A Fisken   (28 February 2005)
[Read Rapid Response] The scandal of un-researched assertions
Ivor T Rowlands   (14 March 2005)
[Read Rapid Response] Re: The scandal of un-researched assertions
Mark Struthers   (15 March 2005)
[Read Rapid Response] The scandal of assertions made under parliamentary privilege
Brian Morgan   (17 March 2005)

Ethics of tissue retention 28 February 2005
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Roger A Fisken,
Consultant Physician
Friarage Hospital, Northallerton, North Yorkshire, UK,, DL6 1JG

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Re: Ethics of tissue retention

John Alexander's (unreferenced) statement that "the undisclosed retention of superfluous biopsy tissue, or organs from dead people ... has been shown to be unacceptable to the public" must not be allowed to go unchallenged. I know of no study which has shown this to be true: most of the heat generated by this issue has arisen from the efforts of journalists to create hysterical campaigns against imagined unethical behaviour by doctors, as so graphically described by Joanna Lyall later in the Journal (p. 485).

From my daily contact with patients I would assert that the overwhelming majority would expect doctors to retain suitable tissue, especially biopsy material, for future research; indeed, many would regard it as unethical not to do so.

The key word here is "undisclosed" - if no disclosure of retention, of any sort, is made then the retention could indeed be regarded as unethical but there are important problems surrounding the question of how disclosure is made and how the purpose of such retention is explained. I would still argue that the great majority of our citizens will react to a long and complex explanation of the subject with bemusement: overwhelmingly their response will be along the lines of:"I'm just glad to be rid of the tumour (or gall bladder, or whatever) - you can do what you like with it now".

Finally, it is very clear that a deceased person cannot be consulted about the fate of his/her retained organs and it is equally clear that the potential future uses of retained organs in research cannot always be predicted in advance. Any legislation or code of practice on this issue must therefore deal with this reality.

Competing interests: None declared

The scandal of un-researched assertions 14 March 2005
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Ivor T Rowlands,
Retired engineer
Cheshire

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Re: The scandal of un-researched assertions

John Alexander [1] the chair of the South West Multicentre Research Ethics Committee states that investigators cannot be relied on, and that the view that they should decide how much patients should be told has led to "scandals and eroded trust”.

The reference he quotes to justify this assertion is a newspaper article! It was by Jeremy Laurance and published in The Independent on 8 May 2000 entitled Parents were misled over hospital trials that killed premature babies. I know nothing of medicine but I do know a great deal about this article. For the reasons I set out in evidence to the Select Committee on Privacy and Media Intrusion [2], this headline and the accompanying article must be candidates for the most disgraceful front page lead in a respectable broadsheet for many years. The Committee took the editor, Simon Kelner, to task on the issue. He promised a response but made none of substance.

The trigger for the article in The Independent was anticipation of the discredited Griffiths report about research at the North Staffordshire NHS Trust [3]. This grossly incompetent report [4] provoked widespread concern that informed consent had not been sought for participation by newborn infants in a comparison of continuous negative airways pressure (CNEP) with positive pressure for assisted respiration. Their Lordships did not think much of the Griffiths report either [5].

In spite of numerous enquiries no evidence of research or clinical malpractice in North Staffordshire has ever been uncovered.

It is very disturbing that the chair of a Multicentre Research Ethics Committee appears to be unaware of this fact . John Alexander should now audit his research and apologise to the doctors and nurses in North Staffordshire and all researchers and ensure that he ceases to misrepresent their work.

Ivor Rowlands.

1. Alexander J. Research ethics committees deserve support. BMJ2005; 330:472. 26 February.

2. Commons Culture, Media and Sport Committee. Report on Privacy and media intrusion June 2003. Vol. 2, Ivor Rowlands Ev 391. Available at www. parliament. uk/parliamentary committees/culture media and sport. ctm

3. "NHS Executive West Midlands Regional Office. Report of a review of the research framework in North Staffordshire Hospital NHS Trust.(Griffiths Report).Leeds:NHS Executive,2000(www.doh.gov.uk/PublicationsAndStatistics/fe/en Gateway Reference 2003)

4. Hey E and Chalmers I. Investigating allegations of research misconduct: the vital need for due process. BMJ 2000;321:752-6 and 1348-9."

5. Hansard. House of Lords 10 October 200 North Staffordshire NHS Trust.

Competing interests: I have supported doctors in seeking fair media coverage

Re: The scandal of un-researched assertions 15 March 2005
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Mark Struthers,
GP
Bedfordshire. mark.struthers@which.net

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Re: Re: The scandal of un-researched assertions

The Griffiths report was mildly critical of the CNEP research carried out by Professor David Southall at the North Staffordshire Hospital, and yet it attracted virulent and indignant attack from his colleagues. Ivor Rowlands describes the report as ‘grossly incompetent’ and claims it is ‘discredited’.

Ivor Rowlands has not completed his research.

In August 2004, after prolonged investigation, the Professional Conduct Committee of the GMC considered Professor Southall’s conduct amounted ‘to a serious departure from the standards expected from a registered practitioner’ and found him guilty of serious professional misconduct. His actions were found to have been ‘inappropriate, irresponsible, misleading and an abuse of his professional position’. Professor Southall has not apologised.

Mr Ivor Rowlands has not audited his assertions with regard to the Griffiths report and the scandals that have eroded trust. Perhaps he could apologise instead.

Competing interests: my mother along with Professors Griffiths and Stacey wrote the Griffiths report

The scandal of assertions made under parliamentary privilege 17 March 2005
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Brian Morgan,
Freelance Journalist
Cardiff CF11 6LF

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Re: The scandal of assertions made under parliamentary privilege

Mr Rowlands refers to his evidence to the Commons Culture, Media and Sport Committee in June 2003. The reference he has given is not quite accurate - this is the exact location currently:

http://www.publications.parliament.uk/pa/cm200203/cmselect/cmcumeds/458/30304a01.htm

On the page in question there is a link to a copy of his submitted memorandum:

www.publications.parliament.uk/pa/cm200203/cmselect/cmcumeds/458/30304a02.htm

Mr Rowlands refers to me personally by name, at least he gets the spelling correct, and he does at least say I am intelligent and hard working. I think that is about the limit of accurate and complimentary references.

Because he also links me to a campaign against Professor Southall and colleagues "not dissimilar to the anti abortion campaigners in the US".

That's not all he had to say about me, though of course his principal targets of attack were the Independent Newspaper and the Press Complaints Committee.

When I voiced my concern about remarks made about myself to the secretary of the select committee concerned, including being compared with anti-abortion style campaigers by Mr Ivor Rowlands, I was told that what was said and published during and after select committee hearings was subject to parliamentary privilege, and not actionable nor amendable in any way.

I would invite readers to check the full Hansard account mentioned above and draw their own conclusions about the reliability of Mr Rowland's assertions. I doubt if we have heard the last about the research on which he has expressed opinions.

Competing interests: None declared