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Rapid Responses: Rapid Responses published:
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An extraordinary scientist and clinician
- Helen Minnis (25 August 2007)
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Research ethics and ADHD
- Christine Puckering (29 August 2007)
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Rewriting history – the Gillberg affair
- Janne Larsson (31 August 2007)
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Anti-psychiatry
- Vanna Beckman (1 September 2007)
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Larsson: Scientologist - yes or no?
- Jonathan Gornall (2 September 2007)
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Profound ethical issues smoothed over
- Aubrey Blumsohn (2 September 2007)
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A well-researched article by J Gornall
- Elisabeth Fernell (2 September 2007)
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The Freedom of Information Act is a cornerstone in our democracy
- Janne Larsson (3 September 2007)
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Jonathan Gornall misses critical ethical research questions
- Leif R Elinder (3 September 2007)
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Gillberg: A further defence
- Philip J. Graham (4 September 2007)
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Author's response
- Jonathan Gornall (6 September 2007)
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Well it's a view
- Aubrey Blumsohn (6 September 2007)
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A further defence of what?
- David Marks (6 September 2007)
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Not an article about the Gillberg affair
- Douglas J. Keenan (6 September 2007)
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Freedom of Information in Sweden
- Philip MJ Wilson (7 September 2007)
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The fraud accusations cannot be taken seriously
- Elias Eriksson (7 September 2007)
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Gornall article and Freedom of Information in Sweden
- Janne Larsson (13 September 2007)
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Destruction of data, scientific norms and interesting journalism
- Aubrey Blumsohn (13 September 2007)
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It's a kind of magic
- Jonathan Gornall (14 September 2007)
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Jonathan Gornall is not neutral
- Leif R Elinder (14 September 2007)
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The fraud allegations cannot be taken seriously. Are you joking?
- Stuart Alistair Jones (14 September 2007)
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Apology for a slur required
- Steven P R Rose (3 October 2007)
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Industry of Death?
- Vanna Beckman (12 October 2007)
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Assessment for the Swedish Research Council
- Denny H Vågerö (12 October 2007)
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Helen Minnis, Senior Lecturer in Child and Adolescent Psychiatry University of Glasgow
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Jonathan Gornall’s detailed exploration of the appalling moral dilemma faced by Professor Chris Gillberg and his team is long overdue and much welcome. However, it still does not do justice to the true worth of this extraordinary scientist and clinician. What makes Professor Gillberg stand out among his peers is his ability to forge and nurture meaningful scientific collaborations with new research groups which thrive under his mentorship. The fact that Professor Gillberg’s scientific output has, if anything, increased since this affair began is testament to the fact that there are research teams all over the world who are benefiting from collaborating with him. I, for one, am proud to be part of such a team. Competing interests: None declared |
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Christine Puckering, Consultant clinical psychologist/research fellow Royal Hospital for Sick Children, Yorkhill, Glasgow G3 8SJ
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In writing this response, I am required by the BMJ to obtain written agreement of any patient who might be able to identify him or herself from what I write. This, and similar more stingent protection, is required by committees for the ethics of research for the protection of the families who allow us to hear about their difficulties. They do this in the belief that what we are doing will ultimately improve our understanding and the help we offer. Were we unable to offer guarantees of confidentiality and anonymity, research into causes and treatment of mental health problems would not be possible. Professor Gillberg had given such a guarantee to participants in his studies. I would support his integrity in keeping that promise even at considerable personal and professional cost. On the topic of AHDH, I was a member of the SIGN guideline group. As a psychologist with an interest in parenting and parenting interventions I would have expected to favour family behavioural treatments. I would have been mistaken! The evidence was not strong that this alone was effective. The amelioration of core symtpoms by appropriate medication in well- diagnosed cases was clear. This does not rule out the advantages, indeed necessity, for good family and educational support and management, but appropriate medication can help children to stay within the school system, learn effectively and avoid the adverse long term consequences of disruptive home and school life. On a clinical level, my experience of Professor Gillberg's work with patients is that he is a careful, skillful and empathic clinician, who far from seeking to marginalise, exclude or stigmatise children or their families, offers them a generous share of his knowledge and understanding which is both empowering and comforting. Ref SIGN guideline 52 Attention deficit and hyperkinetic disorders in children and young people. www.sign.ac.uk/pdf/sign52.pdf Competing interests: None declared |
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Janne Larsson, writer - investigating psychiatry home
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The Gillberg affair was over. The court records told the story. It was not possible to conceal and destroy publicly funded and owned research. All levels of the Swedish judicial system had found Christopher Gillberg and his colleagues guilty.
But for some reason journalist Jonathan Gornall rewrites history to make Professor Gillberg an innocent victim. The main part of Gornall’s story goes to prove that Gillberg’s refusal to open his research for examination was right. In the defence for Gillberg’s actions and his colleagues’ destruction of research data, Gornall uses all the arguments heard of in media during the court process. But this affair is not a matter of religious beliefs or who can have talked to whom at some time in history, neither is it a matter of what some psychiatrists think. This is about parents’ right to know the scientific research behind the diagnoses ADHD and DAMP, the right to informed consent. This is about law, need for transparency and the good Swedish Freedom of Information Act. And the court process is definitely over. All levels of the judicial system have come to the same conclusion. The Chief Justice of Appeal in the Gillberg case even said that the sentence of the court would be formulated in a pedagogic way “so that everyone can read it”.1 And so it was. The Parliamentary Ombudsmen, who initiated the prosecution said: “I think it is a very good sentence, it is well written, well arranged and pedagogic…”2 An extensive summary of the Gillberg affair can also be found on the web site of The Parliamentary Ombudsmen.3 It would have been possible for Gornall to read this information or get it summarized in English, so to avoid repeating the old and long ago rejected arguments. ---------- Sweden has an old and proud tradition of Freedom of Information. Citizens and media have the right to know what is going on in government agencies and in projects funded and owned by the public. Even if psychiatrists object, this also applies to their projects and research. When key biological psychiatrists in 1999 met with the National Board of Health and Welfare to plan for the diagnosing and drugging of large segments of the child population in Sweden, they had expected their plans to be hidden from public view. They had expected the plans and manuscripts to be issued as the official view of the State, without any form of public debate. To their surprise this did not happen. A court found, with reference to the Freedom of Information Act (FOIA), that the documents should be released to the public. And so they were spread around among interested persons and an intensive debate over the handling of children was started. The psychiatrists involved did definitely not appreciate this. Similarly, the release of the documents is not appreciated by Gornall, who in his article represents this as something suspect and a matter of who sent whom what. The view among psychiatrists about the release of documents and the ensuing debate can be exemplified by a request from Christopher Gillberg’s colleague, Peder Rasmussen (who later destroyed the research data). Rasmussen wrote to the National Board of Health and Welfare calling for actions: “I write to you in a very urgent matter where your help/action would be of great importance. A wave of unrestrained and totally ideologically based critic against neuropsychiatry in general and DAMP and Christopher Gillberg in particular is sweeping over the country…”4 Rasmussen is requesting that the National Board of Health and Welfare should take action to restrain the debate and critical views against Gillberg and psychiatry in media. But the official in charge at the National Board of Health and Welfare instead took heed to the critical voices. He said: “We now of course have to reconsider our position and take in serious representatives for both schools [in the project].”5 This however did not happen and the official vanished from the project. Instead the National Board of Health and Welfare hired Gillberg’s earlier colleague Lars Hellgren and put him in charge. The content of the coming recommendations from the National Board of Health was assured for the group of biological psychiatrists. Gillberg’s role in the medicalization of and prescription of psychiatric drugs to children in Sweden and Norway cannot be overstated. He has been the top psychiatric authority in both countries. Gornell also rewrites or omits vital data in this part. In the 1997 article, referred to by Gornall, Gillberg actually states: “Around 10 percent of all children have considerable neuropsychiatric problems.”6 [Emphasis here.] In his book the year before he said: “A cautious conclusion is that DAMP and ADHD together afflict around one child out of ten.”7 “Conditions”, which, according to Gillberg, “to a large or considerable degree are due to disturbances /disorders or injuries in the function or structure of the central nervous system”, and of which he says: “Genetic factors and acquired brain injury are the cause of neuropsychiatric disorders, alone or in combination.”8 Gornall describes Gillberg’s views as “in step with mainstream psychiatric thinking”, and that may be true. But consensus among biological psychiatrists is not the same as science. The statements above cannot be proved in a single case of “ADHD”. There is no objective test to determine the alleged physical or chemical abnormalities in the brain of persons labelled ADHD – the statements above are just speculations. And so, well over 100 000 Swedish children are said to be suffering from a “brain disorder” – when in actual fact no one has been able to prove its existence. And the children are all candidates for psychiatric drugs. Contrary to what Gornall writes in the article Gillberg has pushed for – and succeeded to get – a heavy increase in the prescription rates of Ritalin, Concerta and Strattera in Sweden and Norway. In an article from 2001 Gillberg and co-author Heiervang write: “One thing of concern during the last decade has been the marked increase the last decade in the use of drugs for ADHD to children in the US. This has led to a critical review of praxis in the US, without any evidence found that too many children get drugs. Instead it looks like many children earlier did not get the treatment they should have got. It is an ongoing problem that many children with ADHD do not get access to effective drugs, or are treated with too small doses to get a good enough effect.” 9 In other words – the problem was not the known harmful effects from the psychiatric drugs; it was that too few children got drugs or that they got too small doses. Not even the drugging of children in the US was a problem. It’s a pity that English-speaking persons do not have the possibility to read the clearly written sentences in the Gillberg affair. If they could they would see that Gornall’s article in another light. References 1 Göteborgsposten, Gillberg dömd i hovrätten [Gillberg sentenced in the Appeal Court], February 8, 2006, [This and other quotes in the article translated from Swedish.] http://www.gp.se/gp/jsp/Crosslink.jsp?d=113&a=257703 2 SVT, Hovrätten fastställde domarna [The Appeal Court confirmed the sentence], February 8, 2006, http://mobil.svt.se/svt/jsp/Crosslink.jsp? d=34007&a=535083&lid=aldreNyheter_364131&lpos=rubrik_535083 3 Justitieombudsmannen, Anmälningar mot befattningshavare vid Göteborgs universitet angående underlåtenhet att verkställa kammarrättsdomar rörande utlämnande av handlingar, m.m., [A summary of the Gillberg case at the Parliamentary Ombudsmen] June 26, 2006, http://www.jo.se/Page.aspx? MenuId=106&MainMenuId=106&Language=sv&ObjectClass=DynamX_SFS _Decision&Id=2024 4 Rasmussen, letter to The National Board of Health and Welfare, with copy to 14 colleagues, October 13, 2000. 5 Mebius, interview in the paper Ordfront 1-2/2001. 6 Gillberg C, Ekman S. Skolan knäcker 120 000 barn [School ruins 120 000 children]. Dagens Nyheter, March 20, 1997. 7 Gillberg, Ett barn i varje klass [One child in each class], 1996. 8 Gillberg, Neuropsykiatriska aspekter [Neuropsychiatric aspects], March 8, 1999, http://www.sos.se/sos/publ/referat/0036-008.htm 9 Gillberg/Heiervang, Oro i kroppen – oro i knoppen [Worry in the body – worry in the head], BT, September 24, 2001, http://www.bt.no/meninger/kronikk/article132089.ece Competing interests: (Affiliated with many groups and persons critical of the medicalization and drugging of children.) |
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Vanna Beckman, freelance journalist and writer Kungälv, Sweden
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My compliments to Jonathan Gornall for a well written and researched article on the Gillberg affair. I know something about the pitfalls of the story as I recently published a book in Swedish on the same theme, "Strider under hjärnåldern. Om ADHD, biologism, sociologism", Pavus 2007. In the book I attempt to understand and depict the scientolgists' way of working, especially their shrewd networking with people who do not at all share their more bizarre science fiction like mythology, but who for many reasons like to contribute to the resistance to psychiatry generally and the diagnosis of ADHD specifically. This is where the two Swedish sociologists Eva Kärfve and Thomas Brante appear. They belong to the camp of anti-psychiatrists like Thomas Szasz, Peter Breggin, Sami Timimi and Steven Rose who can make good use of the information that the so called Citizens Commission on Human Rights may extract from various sources, but also fear to be connected with it and its sponsor, the Church of Scientology. Also, none of them can point to any research of their own in the field. Vanna Beckman, Sweden, Freelance journalist Competing interests: None declared |
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Jonathan Gornall, Freelance journalist London
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I welcome the response from Janne Larsson. I was sorry that he did not take advantage of several opportunities to talk to me while I was researching my article. In fact, he ignored three invitations to be interviewed and to clarify his role in proceedings. He states that "this affair is not a matter of religious beliefs or who can have talked to whom at some time in history", but of course when it comes to his role, and his motives for having taken the actions he took, his beliefs are absolutely central - both to events and to the question of his credibility and objectivity as a writer in this field. Mr Larsson signs himself as a "writer - investigating psychiatry". I am unable to say whether he is a Scientologist - he has been asked and, I notice, still fails to say - but it is a fact that he writes for Scientology publications. It's a reasonable assumption that he shares at least some of Scientology's core "values". One of these "values" is the notion that psychiatry is an evil that must be destroyed. It would help others to judge the worth of Mr Larsson's comments and "revelations" about psychiatry if he could confirm whether or not this is a view shared by him. If so, then it would be easier to know what to make of many of his comments, including the startling disclosure that "When key biological psychiatrists in 1999 met with the National Board of Health and Welfare to plan for the diagnosing and drugging of large segments of the child population in Sweden, they had expected their plans to be hidden from public view". Perhaps Mr Larsson would like to take this opportunity disclose his commitment to Scientology - and, if he is prepared to admit that he is a member of that organisation, to reveal the extent of its role in the campaign to discredit Professor Gillberg? Competing interests: Author of article |
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Aubrey Blumsohn, Consultant, Sheffield Teaching Hospitals Sheffield Teaching Hospitals NHS Trust
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The "Gillberg affair" raises profound issues. The substance of the affair goes to the heart of what should be central to ethical discussion in a respectable medical journal. The issue at stake concerns the relationship between raw data and the representation of those data. That issue is central to a majority of recent scandals which have damaged the scientific basis of medicine and the trust of our patients. It also concerns the availability of raw data to journals, fellow scientists, consumers, those who claim to police matters of integrity in science and even to authors themselves. In short, it concerns the safety of the entire scientific enterprise. Gornall's piece in the BMJ skirts around every one of the principles while discussing a few snippets relating to the personalities involved. Even then, critical and well documented facts [1] are entirely ignored or misrepresented. The piece pretends that the concerns raised about the Gillberg science were somehow vague. They were not [1]. In short, the critics of Gillberg's work asserted that the supposed results he obtained could not have arisen from the experiment as designed. They provided good grounds for such concerns. Furthermore they asserted that the study as described was incompatible with the obtaining of ethical approval as described. Gornall misrepresents this by stating that those who had raised the issues of misconduct "seemed to have no evidence of forgery, but only suspicions". Quite what readers are supposed to make of this topsy turvy logic is anyone's guess. The formal allegations submitted by Elinder and Kärfve, as well as the responses by Gillberg are available [1], yet Gornall fails to reference these. Gornall fails to point out that several others had raised concerns which would only have been possible to address through scrutiny of raw data [1]. The Gillberg group claimed that the Chairman of the Ethical Committee, Ove Lundgren somehow exonerated them from scientific misconduct. Ove Lundgren himself denies this. In a letter to the Dean/Rector of the University, Ove Lundgren states: "I have never in my professional life felt so exploited as I have felt in this affair" (Ove Lundgren, University of Gothenburg, Feb. 21, 2005). Lundgren made the following statement: "I got a printed list of the participants of the 16 year long study. The list was said to include the participants of the study. When I looked into the first file some of the participants that apparently had been part of the study according [to] the records in the file were not included on the printed list." [1] Gornall also fails to point out that Elinder and Kärfve and Karfe were not the only persons who were refused the raw data. Gillberg himself eventually agreed that the University should appoint outside experts to examine the raw data. Three such experts were appointed (two Professors of Child Psychiatry and a Professor of medical sociology). Gillberg then withdrew his agreement to outside scrutiny. The Gillberg group also rejected an independent investigation offered by the Swedish Research Council. And then the Gillberg team destroyed the data making any scrutiny impossible.[1] The only fact of the affair that is relevant to a serious ethical discussion is straightforward. The Gillberg team destroyed raw data having faced an accusation of research misconduct pertaining to those data. They destroyed those data despite a court order that it should be made available for scrutiny. Gornall also misrepresents several other well documented facts while failing to cite public documents [1] that would allow readers to check. For example both the courts and the Parliamentary Ombudsman were repeatedly critical of Gillberg. The Gornall piece also fails to comment on the fact that the key scientific papers based on these data have still not been retracted by the journals concerned [2]. Such a situation is untenable. None of the participants in this affair are scientologists, and anyone who has followed these debates will be aware that this form of ad hominem assertion is almost routine when misconduct in psychiatric research is raised. I am surprised that the BMJ has seemingly assisted in promoting this form of tangential debate. All of the key documents relating to this affair are available [1], many in English translation. Gornall could quite easily have cited these, but he failed to do so. Discussions relating to the most basic principles of honest research are increasingly taking place outside of our Medical Journals [1,2] and there is good reason for that. If we are worried about the role of scientologists in the practice of medicine, we need to get our own house in order. Our profession is rendering itself increasingly irrelevant to the debate about its own functioning. The brief moral of the BMJ piece is that future researchers faced with specific questions over the plausibility of their findings should simply destroy their data. They will no doubt be supported by the BMJ and their careers will continue unhindered.
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Competing interests: None declared |
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Elisabeth Fernell, Neuropaediatrician Habilitation Centre for pre-school children with autism, Rosenlund, 104 62 Stockholm, Sweden
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My sincere gratefulness to journalist Jonathan Gornall for his accurate and well-informed article in BMJ about the process that has been initiated and maintained by a few persons in Sweden with the aim to discredit, slander and crush professor Christopher Gillberg. I have had the advantage of collaborating with Christopher Gillberg for more than 20 years, and, so, would like to express my appreciation and respect for his exceptional clinical knowledge and experience as well as his broad and excellent competence in research regarding so many aspects of the large neuropaediatric/neuropsychiatric field. Professor Gillbergs empathy, humanity and dedication to patients and their families is widely acknowledged. In research, professor Gillberg gives invaluable contributions to several research groups in many countries. It is unbelievable to me that scientologists accuse him for advocating pharmacological treatment as the primary intervention in ADHD. All who have worked with professor Gillberg or have listened to him or have read his books or articles know that he first and foremost advocates other measures, based upon the underlying cognitive/executive dysfunctions in ADHD. That means that the first line of intervention, as emphasised by professor Gillberg, is based upon specific pedagogical measures, parent education and support. Of course, he recommends that children with severe symptoms not be withheld from effective pharmacological treatment. The well-researched article by Jonathan Gornall will be an eye-opener for those who had not fully realised the extent of the campaign, which was launched in Sweden against professor Christopher Gillberg, with the aim to ruin his reputation. The BMJ article clarifies the process, and – hopefully - legal actions will bring justice after this nightmare. Competing interests: None declared |
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Janne Larsson, writer - investigating psychiatry home
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When Gornall did "research" for the article he showed his lack of interest in relevant facts already from the beginning. When in email he was referred to extensive and good summaries of the Gillberg affair in English, published on-line [1], he said he already knew about this. He was not interested. His approach - like his article - was more of a tabloid journalist building up a story on religious background, ethnical origin or sexual disposition of persons involved.
The sentences in the Gillberg affair were, as mentioned, written in a very clear way so that everyone could understand them – or should be able to understand them. A good translated summary should have been published in the BMJ, instead of a gossipy article repeating the arguments the courts have rejected long ago. Gornall describes the use of the Swedish Freedom of Information Act (FOIA) in the derogatory terms of “attacks” and “get their hands on the material”, and in general represents it as something suspect. But the FOIA is a cornerstone in our democracy. It is about citizens' right to know what is going on in different agencies and in publicly funded and owned research projects – like Gillberg’s research. It also protects the integrity of individuals. Finally, Gornall quotes and makes quite a point of Elias Eriksson’s complaint about the sentences to the Chancellor of Justice. He writes: "The application is under consideration." His source omitted to tell him that the Chancellor dismissed the case months ago. The case is closed. [1] Documents on the Gillberg affair http://www.informath.org/apprise/a6400/b9.htm [2] Dagens Medicin, JK granskar inte Gillbergärendet [The Chancellor of Justice does not investigate the Gillberg affair], June 7, 2007. Competing interests: (Affiliated with many groups and persons critical of the medicalization and drugging of children.) |
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Leif R Elinder, Paediatrician Community of Uppsala , 75103 Uppsala, Sweden
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Jonathan Gornall misses critical ethical research questions Instead of carefully discussing the ethical aspects of the "Gillberg affair" and the implications for medical publishing, Gornall takes a pin-hole view concentrating entirely on a supposed personal dispute reported to him by Gillberg. By concentrating on the personality aspects while ignoring completely the key problem of science, Gornall has done a grave disservice to integrity. As subject of the article, I have no interest in the supposed personality aspects reported by Gornall. Gornall might however have benefited from checking the facts presented. For what it is worth, over the past 40 years I have only met Gillberg on two or three occasions (last in 1996). I have never had any association whatever with Scientology, if that is of any relevance. Gillberg himself has tried to turn this problem of ethics and data into a personal dispute. Even if the personality aspects as presented by Gornall are true, it is unclear why he would feel compelled to write about them at this stage. I suspect that the reason is that individuals on the internet have begun to address the scientific and ethical questions that Journals have so far bypassed. The reported aim of this 15 years study was to document "the natural outcome" in children Gillberg deemed as having a particular diagnosis without intervention" (1). Important ethical approvals for parts of the study are "missing" (letters dated 12 Sep 2006, 24 Oct 2006, Academy Director Claes-Olov Olsson, University of Gothenburg). The Gillberg group claims that the Chairman of the Ethical Committee, Ove Lundgren, has exonerated them from scientific misconduct even though Lundgren himself disputes this (2). The Gillberg group rejected an independent investigation offered by the Swedish Research Council (21 Mars 2003, C Gillberg, Peder Rasmussen, Letter to the Rector, University of Gothenburg). The reasons provided by Gillberg for refusing to allow scrutiny of any data (even by the Swedish Research Council) do not stand up to serious examination. Christopher Gillberg - as leader of the research team failed to take responsibility for several dubious actions made by his group, including the illegal destruction of 100 000 pages of research material. Serious and specific questions were raised about the implausibility of the supposed findings and the relationship of the findings to the study methodology and the ethical approval. The allegations of misconduct will never be addressed, since the data is now destroyed. The BMJ (through Gornall) appear to regard this as a satisfactory situation. Gornall fails to address any of the critical ethical research questions or the role of medical journals in this affair. The documentary record is ignored completely. Instead he invokes unfounded and malevolent "guilt by association" campaigns against critics, as well as the old chestnut of scientology. In so doing he has defamed myself and others who have who raised very legitimate scientific questions about this research. We live in a society that encourages a focus on prurient interests, and which sometimes invents prurient stories where they do not exist. This is not however the function of a medical journal, particularly when the principles of science have been ignored. The content of Gornall's piece is as spurious as it is irrelevant to the actual matter at hand. The BMJ should be ashamed. Leif Elinder
References: (1) C Gillberg, Europ Child and Adol Psych vol 2 Issue 2 July 1993, s 126 (2) Ove Lundgren, Letter to the Rector, University of Gothenburg, Feb 21, 2005 ======================= Competing interests: Subject of the article |
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Philip J. Graham, Emeritus Professor of Child Psychiatry, Institute of Child Health, London 27, St. Albans Road, London, NW5 1RG, London
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I write as a colleague of Christopher Gillberg whom I have known over the past twenty years. I had heard of the difficulties that he had been experiencing before reading Jonathan Gornall’s article but had not realised the full extent of the hostile attacks that had been made on him and his work. Professor Gillberg’s critics believe that children with Attention Deficit Hyperactivity Disorder (ADHD) or the strongly overlapping condition, Deficits in Attention, Motor Control and Perception (DAMP) are just normal children who are unusually active and distractible or ‘wayward’. It is indeed well established that children who are diagnosed with ADHD fall at one end of a continuum. There are many well-recognised medical conditions such as obesity and hypertension in which this is also the case. But surely a child of ten weighing 70kg requires medical diagnosis and treatment as would a man of 40 with a blood pressure of 200/130. The fact that their disorders fall at one end of a continuum does not mean they can be treated as just a bit fat or just a bit hypertensive. Similarly children diagnosed with ADHD are not ‘just wayward’. Those with this diagnosis, If severely affected, are often excluded from school because of behaviour difficulties and have major problems with their learning and relationships. If they are not severely affected they are not treated with medication. The prevalence of the disorder that Professor Gillberg has found is in line with that found in many American studies, although British estimates are rather lower. Further the fact that ADHD and the closely allied condition DAMP that Gillberg has described have an important biological basis is now well established by genetic, neurophysiological and neuropharmacological studies. The poor outcome for these children that appears to be the central concern of his critics has been confirmed in numerous other studies. Reviewing the literature in the standard textbook of child and adolescent psychiatry, Schachar and Tannock 1 conclude ‘compared with their non-AD- HKD peers, previously affected persons are at approximately five times greater risk for substance abuse (tobacco, alcohol, illicit drugs), antisocial behaviour (aggression, trouble with the law, admission to juvenile facilities) and other psychiatric disorders such as depression and anxiety….Academic and educational problems persist into adolescence; by the time they are adults, hyperactive children have completed significantly less schooling and hold lower-status jobs than their non- hyperactive peers’. In his rapid response Janne Larsson refers to ‘biological psychiatrists’. Although there are certainly child and adolescent psychiatrists whose particular research interest is in biological factors influencing behaviour, I know of no psychiatrists who, in their clinical work, have an exclusively biological approach. When I was in clinical practice I treated about one child in twenty with medication. Mostly I used psychological and social therapies. Did this make me a biological psychiatrist? In the 1980s I conducted a clinic for children with ADHD using a dietary approach to management. We carried out two controlled clinical trials. Did this work, using a ‘natural’ but also a physical treatment make me more or less of a biological psychiatrist? The question is meaningless. Incidentally my case records made during the trials contained much personal information about the families of the patients we treated including, for example, marital problems, parental alcoholism and criminal behaviour. If I had been ordered by a court to make these data available to other researchers as a result of clearly uninformed and prejudiced concerns I should have been extremely reluctant to do so bearing in mind the conditions of confidentiality under which they had been obtained. I would probably not have destroyed the data, but if my colleagues had chosen to do so I would not have been surprised or critical of them. I have to admit I would probably have been relieved they had extracted me from a major ethical dilemma. Most, if not all child and adolescent psychiatrists are well aware of the dangers of inappropriate medicalisation of what is in effect normal behaviour, another error for which Professor Gillberg is condemned. It would be misleading to suggest that inappropriate medicalisation never occurs; indeed in some countries, especially those with a commercialised health care system, it is regrettably common. But, in my view, this is not an error into which Professor Gillberg has fallen. He is a widely respected figure in his field who was the first Editor-in-Chief of a peer- reviewed journal, European Child and Adolescent Psychiatry. The title of the very first paper in the journal he edited was ‘Psychosocial Stressors: Concepts, Causes and Effects’ - hardly an indication of an editor with an exclusively biological approach. Finally, it is perhaps inevitable that the fact that members of his Department destroyed data which would otherwise have had to be made available to outside people will raise suspicions that some of his data had been falsified. Given the undertaking that his Ethics Committee had insisted he make to his research subjects before interviewing them, I find the destruction of the data quite understandable without any need to invoke the possibility of fraud. Further, Professor Gillberg’s findings, especially in relation to outcome, are largely, if not entirely in line with those others have obtained. If his findings were unexpected or he was making claims for entirely new discoveries there might be some reason to suspect fraud, but this is not the case. Indeed if he had claimed that the children with DAMP had a good prognosis, I would have been much more inclined to suspect fraud. I am left with a strong impression that he has been the victim of an attack motivated by an ideology that is generally hostile to medical investigation and diagnosis, an ideology that might well turn its attentions elsewhere. Of course, doctors too have their own ideology and it would be wrong if this were immune to criticism. 1 Schachar S, and Tannock R. Syndromes of hyperactivity and attention deficit. In: Rutter M. Taylor E. eds. Child and Adolescent Psychiatry, Fourth Edition: Oxford: Blackwell Publishing, 2002, 399-418. Competing interests: None declared |
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Jonathan Gornall, Freelance journalist London
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Janne Larsson’s silence on the question of his association with the Church of Scientology is deafening. His attempt to avoid the issue by comparing my efforts to question him about his role in the Gillberg affair with those of a tabloid journalist seeking details of “religious background, ethnical origin or sexual disposition” is a frankly ludicrous and transparent smokescreen. I am not asking him if he is Jewish, black or gay – I am asking him if he is a member of an organisation that is sworn to the destruction of psychiatry. If he is, then clearly everything he writes on the subject must be read in the light of that agenda. Mr Larsson also misrepresents my position. He refers to an email exchange between the two of us thus: “When in email he was referred to extensive and good summaries of the Gillberg affair in English, published on-line, he said he already knew about this. He was not interested.” I did indeed know about the website to which Larsson directed me and had read it carefully. At no point did I say I was “not interested”. I was, however, equally interested in Mr Larsson’s role in the affair and on June 19 sent him the following email: “Yes, I am aware of that site, thanks very much. I wonder if you could answer a few questions for me. Did you and Leif Elinder and Eva Karfve co-operate in some way during this affair? It has been suggested that you secured the documents from a conference on ADHD in 2000 that formed the basis of Eva Karfve's book "Brain Ghost", and that you passed these documents on to Eva Karfve or Leif Elinder. Is that true? I also understand that you write mainly for the Scientology journal Freedom - are you a Scientologist? No reason why you shouldn't be, of course, but it would obviously be relevant in a situation like this, especially as Eva Karfve has been "accused" of membership (she denied to me that she was a Scientologist).” Despite several further attempts to question him, I did not hear from Mr Larsson again, although on July 3 he contacted editors at the BMJ to complain about “Questionable behaviour for a journalist preparing an article for the BMJ”. Both Aubrey Blumsohn and Leif Elinder appear to think I should have written an entirely different article, preferably to a brief that better suited their agendas. The “Profound ethical issues” and “critical ethical research questions” that both seem to think I have glossed over or ignored have, of course, been aired extensively, both in the BMJ and elsewhere. However, an examination of the impact of Scientology on this episode – a subject of some importance, dismissed by Dr Blumsohn as “snippets relating to the personalities involved” and by Dr Elinder as the invocation of “unfounded and malevolent ‘guilt by association’ campaigns against critics” - has been less well rehearsed. Dr Elinder goes further, declaring himself to have been “defamed” by my article in connection with the topic of Scientology. I’m not sure why, as the article contains no suggestion of any association between him and this movement. Furthermore, the content of my article is entirely consistent with the “facts” Dr Elinder suggests I ought to have checked. As for criticising me for “concentrating entirely on a supposed personal dispute reported to him by Gillberg”, it is clear from my article that I have done no such thing. As Dr Elinder well knows, during my interview with him it was he who raised the subject of some extremely personal theories about his motivation in this case that had circulated in the Swedish media. I chose not to go into them and, despite the provocation, will not do so now. Dr Blumsohn is also absolutely correct to note that I did not provide references to a number of websites on which the Gillberg affair has been discussed at length. Among them – although he neglects to mention this in his Rapid Response – was his own. Some BMJ readers will be familiar with Dr Blumsohn’s dispute with a major pharmaceutical company, which led him to set up a website, “Scientific misconduct blog”. This carries the sub-title: “About all manner of corporate pharmaceutical scientific misconduct. If you’re not outraged, you’re not paying attention.” The site also hosts Dr Blumsohn’s “ongoing investigation of the Gillberg affair”, which I am sure readers will find fascinating (see: http://scientific- misconduct.blogspot.com/2007/07/gillberg-affair-and-fall-of- scientific.html). This includes details of his campaign to have the Journal of the American Academy of Child and Adolescent Psychiatry retract one of Professor Gillberg’s papers because of what Dr Blumsohn calls “prime facie evidence of scientific misconduct”. I would suggest that this activity alone merited recording as a conflict of interest at the foot of Dr Blumsohn’s Rapid Response. Competing interests: Author of article |
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Aubrey Blumsohn, Consultant Sheffield Teaching Hospitals NHS Trust
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Professor Graham states: "Given the undertaking that his Ethics Committee had insisted he make to his research subjects before interviewing them, I find the destruction of the data quite understandable without any need to invoke the possibility of fraud." Well that is a view. The question is whether it is a legitimate view, particularly under the circumstances - and given apparently convincing evidence that the output could not have been derived from the experiment precisely as described. And there were many other questions - about the ethical approval, the number of subjecrts, and where they came from. The point is that this is exactly what we should be debating. Unfortunately the rapid responses here reveal precisely the problem - serious problems of principle and scientific procedure raised - countered by a host of psychiatrists and collaborators rushing to defend questionable procedure through an entirely tangential mixture of ad hominem argument and irrelevant fluff. The arguments in defense boil down to "Gillberg is a nice man" and a caring clinician - which he no doubt is. The argument about confidentiality is in my view entirely spurious and could be mnade about practically every bit of clinical research that has ever been carried out. It is seriously being suggested that no one (regulatory bodies, courts, bodies investigating research misconduct, trial participants themselves, co-authors, journal editors, reserach councils or even authors of the science itself) should ever be allows to scrutinise any aspect of research. This is not science, and the article that originated this discussion is not part of any form of legitimate scientific debate. What I find astonishing is that there is no similar rush of psychiatrists discussing some of the obvious and demonstrable integrity lapses in psychiatric research that are quite apparent to patients. Instead we are almost mute. The debate is similar to that reported between Galileo and a psychiatric observer Astronomer: 'if you won't look through my telescope, how can you deny the existence of the moons of Jupiter? Observer: 'if you won't drink my absinthe, how can you deny the existence of pink elephants?' Aubrey Blumsohn Competing interests: Fascinated observer |
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David Marks, A mere person New York
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Reading the documents not mentioned by Gornall I was projected into a near out-of-body experience. I humbly suggest we need to start again with this discussion. As a simple patient/parent (and a chemist by profession) I would recommend reading the excellent and well documented relation of these events - and then reading Gornall's version: http://www.informath.org/apprise/a6400/b9.htm Competing interests: None |
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Douglas J. Keenan, (retired) The Limehouse Cut, London E14
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Following are some of many comments that can be made on Gornall's article.
1. Gornall devotes almost a page to demonstrating that the Scientologists advocate strong criticism of Gillberg's work. So what? The Nazis advocated vigorous outdoor exercise. Does this mean that vigorous outdoor exercise is bad? Gornall's argumentation here is not logical, it is rhetorical. 2. Gornall devotes only three sentences to discussing the evidence presented by Elinder and Karfve for their allegations that Gillberg committed fraud. Moreover, he leaves the allegations unreferenced. It is almost as if readers are supposed to believe that the alleged fraud is of little importance. A discussion of the evidence is available via http://www.informath.org/apprise/a6400/b9.htm. This includes links to the formal allegations submitted by Elinder and Karfve, as well as the responses by Gillberg. (Elinder and Karfve checked and approved the English translations of their texts; Gillberg was asked to check the translations of his, but did not respond.) 3. Gornall repeats the claim that Gillberg refused to release the data because all data was promised to be confidential. The claim is not entirely accurate: in particular, the names of the doctors who supposedly examined the participants were not promised to be confidential. There is no justification for keeping the names of those doctors secret; indeed, even Gillberg does not claim that there is such justification. Yet Gillberg has not released those names, despite repeated requests to do so from Karfve (see above link for details and references). 4. Ove Lundgren, who was Chairman of the university's Ethics Committee at the time, made the following statement.
(Reference is at the link above.) This appears to support Karfve's suspicion that Gillberg's study included children who were not officially participants in the study. And that suspicion is central to Karfve's claim of how Gillberg allegedly falsified the records. 5. Gornall cites the Swedish Parliamentary Ombudsman Report for 2005/06, but provides no link to the Report. The Report is available via http://www.jo.se/Page.aspx? MenuId=17&ObjectClass=DynamX_Links&Language=en (the Gillberg affair is treated, in English, on pages 614-631). The single brief quote that Gornall gives from the Report does not provide an accurate picture: the Supreme Administrative Court rejected Gillberg's application for a rehearing, because the lower court decision was against the university, not Gillberg; hence an application for a rehearing could only be made by the university (and it chose not to). As the Report makes clear, both the courts and the Parliamentary Ombudsman were repeatedly critical of Gillberg. 6. Gornall claims that Gillberg did not release the data because "Gillberg could not guarantee to the participants that the information would be handled correctly". In fact, Karfve and Elinder would have had to sign strict non- disclosure agreements, pursuant to the Swedish Secrecy Act. Gillberg, however, said that this was insufficient. Gillberg then requested that the university appoint outside experts to scrutinize the data. Karfve and Elinder did not object to that. Three outside experts were appointed: two professors of child psychiatry and one professor of medical sociology. Gillberg then withdrew his agreement to outside scrutiny. Both the President of the university and the Chairman of the Board of the university later told police investigators that the stress was having very serious psychological effects on the Gillberg group and there had been threats of suicide within the group. References and details are at http://www.informath.org/apprise/a6400/b7.htm. 7. Gornall also cites the Gillberg group saying "study participants and their parents had opposed the release of the material". This is true, but Swedish journalist MarieLouise Samuelsson investigated and reported that the participants had been misinformed and pressured. Samuelsson's astonishing report on what Gillberg and colleagues did is worth reading; an English translation is at http://www.informath.org/apprise/a6400/b2026.pdf. 8. Gornall claims that by refusing to release the data, Gillberg was adhering to the Declaration of Helsinki. The Declaration states, "In medical research on human subjects, considerations related to the well-being of the human subject should take precedence over the interests of science and society". It also cites the Declaration of Geneva of the World Medical Association, noting that this "binds the physician with the words 'The health of my patient will be my first consideration'". So suppose that what Gillberg says is true. Then many of the study subjects are suffering from a serious medical condition for which treatment is available. Yet Gillberg provided those people with no treatment: his claimed motivation was to allow the condition to run its natural course, so as to facilitate study. Is that consistent with the Declaration of Helsinki, or with common ethics? 9. The greatest ethical concern in all this surely ought to be that Gillberg's allegedly-falsified study has been used to justify neuropharmacological treatments for tens of thousands of children.
Competing interests: None declared |
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Philip MJ Wilson, General practitioner and senior research fellow General Practice and Primary Care, University of Glasgow, G12 9LX
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I congratulate Jonathan Gornall on his well balanced article. The key issue which has passed unremarked in the responses by Janne Larsson, Aubrey Blumsholm and Leif Elinder is that only in Sweden could Christopher Gillberg and his colleagues have been found guilty of the "offence" of protecting confidentiality. The Swedish Freedom of Information Act essentially allows anyone, with any interest, access to all material collected with public funds - even if that interest is malign. The order of the court to release documents containing highly sensitive information to two individuals with no relevant expertise or qualifications seemed extraordinary to me as a UK citizen. It was not until I read the judgement concerning the Helsinki Declaration made by the Swedish Court of Appeal that the case made any sense: "The international declaration to which the World Health Organisation agreed is not of such a nature that it has priority over Swedish law. What Christopher Gillberg has objected to on the grounds of the content of this declaration therefore lacks significance in the case”. The World Health Organisation’s Helsinki Declaration makes it clear that no country's laws or regulations can be used as a pretext for failing to follow the ethical principles in the declaration. Competing interests: I have collaborated with Professor Gillberg in a number of projects in Glasgow. |
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Elias Eriksson, Professor Department of Neuroscience and Physiology, Göteborg University, POB 431, SE 405 30 Goteborg, Sweden
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Jonathan Gornall is to be congratulated for his excellent article. For anyone interested in this affair, not only the article itself is very informative, but also two of the early rapid responses that have been submitted to BMJ’s web site: the one by Mr Larsson, since it confirms the suggestion by Gornall that the Church of Scientology plays an important role in the campaign against Gillberg, and the one by Mr Blumsohn, since it so clearly illustrates how Gillberg’s opponents tend to build their campaign on disinformation. Let’s briefly examine some of the comments made by Mr Blumsohn: 1. The accusations Accusations of research fraud are a serious matter. One should not accuse someone of fraud in research unless one has strong reasons to believe that fraud has indeed taken place. And this is especially important if one goes public with the accusations, as Eva Kärfve and Leif Elinder indeed have done. Blumsohn claims that Gornall is wrong when stating that the accusations against Gillberg were vague. According to Blumsohn, the critics “provided good grounds” for their concerns that the “supposed results he obtained could not have arisen from the experiment as designed”. The truth is – and this deserves to be emphasized – that there has never been even the slightest reason to suspect forgery in the work of Gillberg and co-workers. The accusations that triggered this debate were not only vague, as stated by Mr Gornall, but in fact quite bizarre. The key argument of Kärfve and Elinder when accusing Gillberg and co- workers of fraud has always been the low drop-out rate in Gillberg’s study. Gillberg and co-workers studied a group of children for a period of more than 15 years and managed to keep the drop-out rate below 10%; the fact that it was not higher is what has made Kärfve and Elinder accuse them of fraud. However, the drop-out rate of the Gillberg study was indeed low, but not at all extraordinarily low. On the contrary, there are, as should be obvious to the readers of BMJ, numerous studies in the medical field with such a low drop-out rate, or even lower. For example, in the renowned Dunedin Study (1) 1000 individuals from New Zealand were followed from the age of 3 to the age of 26: in this pivotal study, that has achieved well-deserved praise, the drop-out rate is 4%, i.e. considerably lower than in the study by Gillberg, despite that many of the participants have moved to remote parts of the world during the course of the study. And also in the Milwaukee study (2) – that like the study by Gillberg and co-workers was focused on hyperactivity and attention deficit in children – the drop-out rate was below 10% (after 13 years of follow-up). As far as I know, as yet no one has considered accusing the researchers responsible for the Dunedin and Milwaukee studies of fraud because of low drop-out rates, and hopefully no one ever will. This is how Kärfve comments the issue of the drop-out rate in a major Swedish newspaper (Dagens Nyheter) (3): “Numerous population-based follow-up studies have been undertaken, both in medicine and sociology, and the rule is that the participants becomes increasingly unwilling to be examined. Drop-out rates of 30-70% are to be expected.” And this is what she writes on this issue in one of her formal petitions to Goteborg University: “I am not aware of any population-based long term study – regardless of what has been studied – reporting a drop out rate even nearly that low” (4) . Eva Kärfve may be unaware of the many studies reporting a lower drop- out rate than that of Gillberg’s study. But if a drop-out rate below 10% in longitudinal medical studies is indeed legitimate grounds for accusing researchers of fraud, there are many groups around the world that should be the subject of fraud investigations. This affair illustrates the problems facing the scientific community when fraud allegations are used to smear ideological opponents in a public debate. Most readers of Swedish newspapers won't know what realistic drop- out rates would be, and may be convinced by Kärfves argument that a drop-out rate of 10% is indeed a reason to suspect fraud. It's troubling that it is so easy to harm a researcher's reputation by spreading this kind of disinformation. Although the allegedly low drop-out rate has remained the key argument of Kärfve and Elinder when attacking Gillberg, there were also other accusations, equally bizarre. The study of Gillberg had led to the conclusion that 7.1% of all children may suffer from attention deficit and hyperactivity; it is – according to an interview in another Swedish journal (5) – this conclusion, regarded by Kärfve as “unreasonable”, that prompted her to accuse Gillberg of having “fiddled with the figures”. In her book that preceded the fraud allegation she states that the figure 7.1% “is not just uncertain, it is absurd” (6). What is probably unknown to most lay readers of the interview with Kärfve, and/or her book, is that the figure 7.1% however is very close to what has been reported in most other studies in this field. Skounti and co - workers, in a recent review, presenting studies from many countries, thus conclude that the prevalence rates range from 4 to 10% (7), and in a recent UK study by Mill and co-workers (8) the prevalence in one studied cohort was 6% and in another 8%. Even professor Thomas Brante, who is usually Kärfve’s strongest supporter in her campaign against Gillberg, writes in a recent paper: “Today it is estimated that 10% of boys and 2% of girls has got ADHD, so the general prevalence is between 6 and 9% of American school children. According to National Health Statistics (NHSC 2004[ref])the figure is 7.5% in 2002” (9). Whether Brante shares Kärfve's view that Gillberg's similar findings are a legitimate grounds for a public accusation of fraud deserves to be clarified. One may of course question these prevalence figures on the basis that one does not believe in the concept of hyperactivity as a medical entity or in how problems with hyperactivity are defined. But one cannot argue that Gillberg’s prevalence figure of 7.1% is a legitimate reason to suspect fraud without acknowledging that numerous studies around the world have yielded very similar results. In the formal petitions from Kärfve to Goteborg University, there were other accusations as well, all of them equally unconvincing. One of her more notable reasons to accuse Gillberg and co-workers for misconduct was the fact that one of the co-authors of some of the papers from the Gillberg group is a child neurologist (5,10). Why would a neurologist be a co-author on a paper on a psychiatric condition, Kärfve argues, adding this to her short list of major reasons to suspect fraud. It is indeed amazing that so many people in the public debate – including but unfortunately not limited to Mr Blumsohn – have taken the allegations from Kärfve seriously. 2. The fraud investigation Given the nature of the allegations, one could argue that no investigation was ever warranted. It is of course very important that cases of possible research fraud be duly scrutinized, but a prerequisite for starting an in-depth investigation must be that there is at least some ground for concern. Spending time and resources on investigating whether a drop-out rate being lower than 10% in this kind of study calls for suspicion, or whether a child neurologist is allowed to co-author a paper on ADHD, would hardly be defensible. In line with how issues like this should be dealt with in Sweden, the allegations were however handed over from the vice-chancellor of Göteborg University to the dean of the medical faculty, who, in turn, handed them over to a special committee, the ethical council, that was headed by professor Ove Lundgren. After 8 months of investigation, this committee reached the conclusion that no evidence of fraud had been revealed, and advised the vice-chancellor to drop the case, without further action, which he formally did. The Gillberg group therefore has been the subject of a thorough and formal investigation, in agreement with the regulations, and they are, as a result of this investigation, freed from the accusations. Gillberg’s critics however would not take no for an answer and have since pursued the campaign, claiming that it has never been proven that fraud has not been committed, and argued, e.g., that Lundgren’s brief visit to the archive – which was not part of the formal investigation – also could not prove this. This is however irrelevant: to prove that all data are correct in a study of this magnitude is obviously impossible and can never be the task for an investigating body. When someone accuses a researcher of having committed fraud, the arguments put forward should be examined: if they do not convince the investigating body that fraud has taken place, the accusation should be dismissed. And this is what happened with the accusations against Gillberg. The often-repeated claim that Gillberg has refused to have his records inspected by external experts, now put forward also by Blumsohn, is untrue. During the 8 months of investigation, Gillberg made it clear that he was indeed willing to have the records inspected by the ethical council, or by experts appointed by them, or by the Swedish Research Council, if the ethical council believed such an action was warranted and required it. At one time during the course of the investigation, it was even decided that the chairman of the council should visit the archive, and a time for this visit was decided; later, however, this meeting was cancelled by the chairman (11). The committee finally decided an inspection of the records was not warranted: a very reasonable decision, given the nature of the accusations. After they had reached this conclusion, there were obviously no reasons for the vice-chancellor or for Gillberg to demand any further investigations. Mr Blumsohn states that “the Gillberg group also rejected an independent investigation offered by the Swedish Research Council”. According to the regulations, issues like this could however be forwarded to the Swedish Research Council by the vice-chancellors of the universities only, and vice-chancellors were allowed to do this only if an initial investigation within the university had provided some reasons to suspect that fraud had been committed. Since the ethical council, led by Ove Lundgren, had reached the conclusion that there were no reasons to suspect fraud – meaning, e.g., that it is not forbidden for neurologists to take an interest in ADHD, and that a drop-out rate of 10% in a study like this is not a reason to suspect fraud – the vice-chancellor had neither a reason nor the right to refer this issue to the Swedish Research Council. On the other hand, if he nevertheless had decided to remit it, Gillberg – of course – could not have “rejected” such an investigation. The statement that Gillberg has “rejected an independent investigation offered by the Swedish Research Council” is therefore grossly misleading. Gillberg and co-workers have indeed refused to hand over confidential records to Elinder and Kärfve, but they have from the start made it clear that they were willing to have the documents inspected by external experts in case the investigating body found that warranted. The reason that such an inspection never took place was that the ethical council, after 8 months of investigation, came to the conclusion that the accusations did not warrant such a measure. Blumsohn writes: “And then the Gillberg team destroyed the data making any scrutiny impossible.” The only reason for Gillberg’s co-workers to destroy the documents was that this was the only way of preventing extremely confidential information from being handed over to private persons – Kärfve and Elinder. For anyone taking the Helsinki declaration and the issue of informed consent in medical research seriously, this decision was inevitable: confidential documents obviously cannot be handed out to private persons when the participants have been promised that this will not happen. It is true that the records of this study can no longer be inspected, which is equally true for many other studies conducted a long time ago. Those wanting to address, e.g., Eva Kärfves accusation that it must be fraud when a neurologist writes a paper on ADHD hence have no longer any archive to demand access to. Fortunately, there has however never been any need for an inspection in this particular case, since the major results of Gillberg’s study have all been replicated by others, and are in no way controversial. Also, the accusations made against these researchers from Kärfve and Elinder fortunately are still available for inspection, and may be examined. For anyone with insight into this field of research, reading these documents will make it clear that there have never been any actual reasons to suspect Gillberg and co-workers for fraud. 3. The sentences The responses by Mr Larsson and Mr Blumsohn are illustrative of the campaign against Gillberg in the sense than none of them provides any scientific arguments why there should be reasons to distrust the work of Gillberg. Indeed, Mr Larsson writes: “Bornall describes Gillberg’s views as ‘in step with mainstream psychiatric thinking’, and that may be true.” For any readers of the work of Kärfve, this entirely correct statement – put forward by one of his most hostile antagonists – must come as a surprise: the message conveyed by Kärfve to the Swedish audience has thus been that the views of Gillberg are very much at odds with those of the rest of the scientific world, and that this is the reason why his study must be distrusted, and why she must inspect his records. It is appreciated that Mr Larsson now clarifies that these accusations from Kärfve are unfounded. In the absence of scientific arguments, both Larsson and Blumsohn refer to the court sentences against Gillberg in their ambition to besmirch his name, just as Elinder has done in at least 50 letters to the Swedish press during the past years. For the campaign against Gillberg, these sentences have now become the main stick. When analyzing the decisions made by different Swedish courts in this affair, there is however only one that is of real interest, and highly controversial, i.e. the one granting Kärfve and Elinder the right to get access to confidential records from Gillberg’s study, in spite of the fact that one of them (Elinder) is not a researcher (which according to the law is a prerequisite for being granted such a right), and the other (Kärfve) had not acted as a researcher in the sense that she had refused to ask an ethical committee for permission to read the documents (12). Also, according to Swedish law, the court had no right to decide that the documents be handed out if there were any possibility that the participants should find this discomforting. This was however highly likely, given that the parents had provided extremely sensitive information on their children on the basis that it would be kept secret. For formal reasons, this highly controversial court order could not be appealed. Whether a direction to hand these documents over to two private persons is in agreement with Swedish law has therefore not been reassessed. Leading legal experts however have questioned this sentence, and, to my knowledge, no single expert in law has ever defended it (13). Why the court made this strange verdict remains unclear; but a statement from Professor Brante certifying that Kärfve needed to see the documents in order to conduct a research project headed by Brante probably had a significant impact. It should however be emphasized that the reasons for the court to make this decision was not that they believed that Gillberg had committed fraud, and that inspection of his records for this reason was warranted. The chairman of the court has since stated that they were not even aware of the fact that Gillberg and co-workers had been accused of misconduct. The subsequent court decisions, where both the vice-chancellor of Göteborg university and members of the Gillberg group have been sentenced for not having obeyed the first, arguably incorrect, sentence, are less important: they are unfortunate but somehow logical consequences of the first sentence. From a legal point of view, you have to obey a court order, even when it happens to be at odds with the law. Gillberg and co- workers however felt that this particular court order could not be obeyed, since that would have been to break the promise made to the participants, and to violate basic ethical rules for medical research, and for this standpoint they was later sentenced. Hopefully most researchers would have acted as Gillberg and co-workers did, if put in the same situation. Finally: Let’s hope that additional members of the anti-Gillberg- league – scientologists as well as non-scientologists – will take this opportunity to expose themselves and their arguments for public scrutiny. This would hopefully be the most effective way to put an end to this disgraceful campaign. Competing interests: None declared 1) Moffitt TE, Harrington H, Caspi A, Kim-Cohen J, Goldberg D, Gregory AM, Poulton R: Depression and generalized anxiety disorder: cumulative and sequential comorbidity in a birth cohort followed prospectively to age 32 years. Arch Gen Psychiatry 2007;64:651-60 2) Fischer M, Barkley RA, Smallish L,Fletcher K: Young Adult Follow- Up of Hyperactive Children: Self-Reported Psychiatric Disorders, Comorbidity, and the Role of Childhood Conduct Problems and Teen CD. Journal of Abnormal Child Psychology 2002; 30: 463–475 3) Dagens Nyheter, 25/1 2003 4) Petition from Eva Kärfve to the ethical board, Dec 9, 2002 5) SIF-tidningen 6/2 2003 6) Kärfve E: Hjärnspöken: DAMP och hotet mot folkhälsan. Symposion (Eslöv), 2000 7) Skounti M, Philalithis A, Galanakis E: Variations in prevalence of attention deficit hyperactivity disorder worldwide. Eur J Pediatr 2007: 166:117-123 8) Mill J, Caspi A, Williams BS, Craig I, Taylor A, Polo-Tomas M, Berridge CW, Poulton R, Moffit T: Prediction of heterogeneity in intelligence and adult prognosis by genetic polymorphisms in the dopamine system among children with attention-deficit/hyperactivity disorder: evidence from 2 birth cohorts. Arch Gen Psychiatry. 2006; 63:462-469 9) Brante T: Den nya psykiatrin: exemplet ADHD. In: "Diagnosens Makt", ed: G Hallerstedt, Daidalos (Göteborg), 2006, pp 73-111 10) Petition from Eva Kärfve to the ethical board, June 25, 2002 11) Personal communications from Ove Lundgren, chairman of the ethical council, and from members of the Gillberg group. For details, see also a petition to the Chancellor of Justice: http://www.childnps.se/dokument/tilljkgoranlambertz.pdf. This will shortly be available also in English on this web site. 12) Correspondence between the Swedish research Council and professor Thomas Brante; for details: see petition to the Chancellor of Justice: http://www.childnps.se/dokument/tilljkgoranlambertz.pdf. 13) Professor Elisabeth Rynning, Dagens Nyheter, 14/5 2005; see also Vanna Beckman: Strider under Hjärnåldern, Pavus Utbildning (2007); see also petition to the Chancellor of Justice: http://www.childnps.se/dokument/tilljkgoranlambertz.pdf. Competing interests: Elias Eriksson and Kristoffer Hellstrand have submitted a petition on this issue to the Chancellor of Justice. |
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Janne Larsson, writer - investigating psychiatry home
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It is true that Gornall did not in email explicitly say that he was uninterested in the already existing good summaries of the Gillberg affair. He showed his disinterest by neglecting them in his article.
In email Gornall also wrote: “I did see some material you had written in English about Strattera and Gillberg...” But even if that subject really was relevant to the story, Gornall failed to take it up. The relevance for the Strattera data to his story comes from the fact that Gillberg’s uninspected DAMP research has formed the justification for drug experiments on children and adults – such as his Strattera trials. It would have led to a bit more balanced story if Gornall had taken up the Swedish Freedom of Information Act (FOIA) in a positive light and described the important safety data that can be revealed to the public with support of that law – data that pharmaceutical companies often fail to reveal. Gillberg's colleagues (Fernell, Graham, Wilson, Eriksson) have in their submissions above nothing good to say about the principle of Freedom of Information in Sweden. As Gornall, they represent persons who use their rights per this law as suspect and the law itself as a means of spreading confidential patient information to the public. The inclusion of the information Gornall had about Strattera, Gillberg and the FOIA would have destroyed his article. It would have told another story: How the FOIA makes it possible for patients to exert their right to informed consent, and makes it possible to know important safety data otherwise not published by pharmaceutical companies and their hired psychiatrists. The data revealed from FOI requests about Gillberg’s trial of Strattera on adults in Sweden [1] tell the following: The final report from November 2006 and earlier data show that 95 percent of the persons enrolled ended the study in advance – 75 percent due to security risks [adverse effects or no/insufficient effects]! [2] The trial had been ongoing since February 2004 and was unique in that it should test the long-term effects of Strattera. Per the application to the Ethics Review Board [3] one should test the drug on 40 adults during 18 months, to see if “the possible positive effect remains”, and study “negative side effects short term and long term…” (p. 3). It was emphasized: “The treatment of AD/HD is in most cases ongoing for many years.” (p. 2) Only 24 persons were enrolled (of the 40 planned for). 4 of these persons did not start. Remained 20. The primary result: 40 percent (n=8) of the test subjects had to end the study in advance due to adverse effects from the drug. The next result: 35 percent (n=7) ended the study in advance due to bad or no effect from the drug (“insufficient effect after a certain time”). The other persons ending the study (n=4) did not come to their next visit or ended on own initiative for other reasons (this can and should of course also be seen as a bad effect of the drug). And last: “One patient has completed the whole study.” The 40 percent (n=8) taken out of the study due to adverse effects suffered from: liver injury (increased transaminase levels), thyroid gland injury (increased thyroid levels), aggression/hostility, depression, high blood pressure, subjective feelings of discomfort. Despite the fact that the study ended 15 months ago Professor Gillberg (or Eli Lilly) has not made these results known in a press release; no interviews have been published telling about the security risks found. Only data revealed via FOIA requests have told the story. As a final comment to the article of Elias Eriksson: It would have been becoming if Mr. Eriksson, leading the campaign to make Gillberg’s contempt of court the right thing to do, would have given some data about his financial support from the pharmaceutical industry [4]. References [1] Gillberg, Long-term clinical trial of Strattera (atomoxetine hydrochloride), ref nbr: 2A02174152; B4Z-SO-LYDC, ended May 2006. [2] Gillberg/Råstam/Cederlund, Slutrapport, (Final Report) November 2006. [2a] Gillberg/Råstam/Cederlund, Angående klinisk läkemedelsprövning, October 11, 2005, (Report to the MPA) [2b] Gillberg/Råstam/Cederlund, Angående klinisk läkemedelsprövning (atomoxetine hydrochloride) ref nr: 2002/74152; (Report to the MPA) April 25, 2006. [3] Gillberg/Kadesjö, Ansökan till forskningsetikkommittén vid Göteborgs universitet, (Application to Ethics Review Board in Gothenburg) November 29, 2002, arrived January 14, 2003. [4] Sahlgrenska, Curriculum Vitae, Elias Eriksson, accessed September 08, 2007.
http://www.ceross.sahlgrenska.gu.se/digitalAssets/865575_CV_EE.doc
Competing interests: (Affiliated with many persons and groups critical of the medicalization and drugging of children.) |
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Aubrey Blumsohn, Consultant Sheffield Teaching Hospitals NHS Trust, S5 7AU
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I am curious to know why Mr Gornall, a respected journalist feels the need to misrepresent what other individuals have actually said. This is done (in most cases) through insertion of small segments of quoted text within a surrounding sentence that places that text out of context. I will simply provide one minor example involving myself, though there are several others that could be provided.
Gornall states in rapid response that I campaigned (whatever that means) to: "retract one of Professor Gillberg’s papers because of what Dr Blumsohn calls “prime facie evidence of scientific misconduct” ". Taken in isolation, and in the context of Gornall's surrounding paragraph, most readers would be misled into thinking that I had claimed to have somehow acquired magical powers to convince myself that the assertions of Elinder and Kärfve were proven (i.e scientific misconduct). Quite clearly I could never have such evidence and neither could anyone else since the data is destroyed. Anyone reading what I had actually written would realize that the phrase "prime facie evidence of scientific misconduct" was part of a generic sentence that refers to something else altogether. It refers to the scientific misconduct that must be presumed under conditions of wilful data destruction. Indeed the data destruction itself is the misconduct. In other cases, there is no difficulty asserting this (see for example BMJ http://www.bmj.com/cgi/content/full/331/7511/281), and it is not clear what makes this affair any different. There were many alternatives to data destruction and non-transparency if the assertions of the critics were baseless. My paragraph from which the phrase was taken reads as follows:
"Refusal of a scientist to reveal raw data would normally provide prime facie evidence of scientific misconduct. Destruction of such data while questions were being asked about the veracity of the research would constitute a very serious breach of scientific norms." I would guess that most scientists would regard that statement as being true, although Gornall as a journalist appears to disagree. Whatever the case, it goes to the heart of the Gillberg affair. This paragraph was part of very reasonable correspondence with a journal editor to ask how it could be possible that a scientific publication would not be retracted under such circumstances. The publication must be unsafe, even though no data misrepresentation is proven. The response of that editor was to declare effectively that the matter is no business of the journal. The editors of this same journal had provided a similar response to the BBC in relation to a drug trial where there was a large amount of evidence (from company files) that findings had been seriously misrepresented, and that the concerns of peer reviewers had been ignored. In that case the editor simply stated (on television) that : "I don’t have any regrets about publishing [the study] at all – it generated all sorts of useful discussion which is the purpose of a scholarly journal." That was the sole response in that case. The journal has published nothing of the concerns in either case. It is highly likely that the representation of this other study had led to serious clinical consequences in at least some real children. I have wondered previously whether any of the psychiatrists or psychologists who responded here have made any comment about that affair. After all, why defend destruction of data (citing supposed "ethical" grounds) in one case, but fail to respond "ethically" under other related circumstances. I am rather more concerned with proper scientific procedure and the behaviour of scientific journals than the actual claims of misconduct in the Gillberg case. The hiding of raw data (from all interested parties including authors) is a key problem in medicine. If asking such questions is a "campaign" then I am proud to be part of it. Anyone writing a serious article about this affair might have thought to have referenced other such incidents as well as the actual documents and legal reports, the lessons learned and the principles entailed. This is not an isolated incident. This Gornall would no doubt regard as writing to a "brief that better suited their agendas". The only "agenda" of scientific journalism in a scientific journal should be reasoned scientific debate - rather than the somewhat more McCarthyist "are you a scientologist - yes or no" type of journalism. Though I hesitate to do the necessary scientific Journalism, there are several examples which illustrate different aspects of the problem. Here are a few historical examples:
Aubrey Blumsohn
Competing interests: Fascinated observer |
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Jonathan Gornall, Freelance journalist London
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Blumsohn's suggestion that he has been misrepresented is laughable. I gave the link to his site in my response precisely so readers of the BMJ could, if they so wished, study his exchange with the editor of JAACAP in full. In his Rapid Response, Blumsohn writes: "Taken in isolation, and in the context of Gornall's surrounding paragraph, most readers would be misled into thinking that I had claimed to have somehow acquired magical powers to convince myself that the assertions of Elinder and Kärfve were proven." Well, it must certainly have seemed that way to the editor of JAACAP, confronted with Blumsohn's first email and the statement "This manuscript and it's [sic] conclusions are clearly unsafe." Here was a man, the editor might have thought, who must surely know what he is talking about. On his website, Blumsohn later held forth on the responsibilities of journal editors. To avoid the risk of quoting him out of context, and because it contains a series of entertainingly absurd propositions, I give you the section in full: "The problem extends beyond questions of ADHD, child psychiatry, Gillberg or the JAACAP. By ignoring such problems, the integrity of all research involving human subjects is put into jeopardy. When journal editors behave in this manner, it raises questions about the entire research enterprise in medicine. "Such behavior [sic] on the part of a journal editor is also unfair to the many authors who have published respectable and legitimate science within their pages. It means that all manuscripts published in JAACAP should be viewed with suspicion. It is also unfair to the many psychiatrists and psychologists who are involved in honest clinical practice, and whose profession has been brought into disrepute. "What exactly is the function of a scientific journal beyond serving as a laundering operation?" From this little speech one may draw several inferences about Blumsohn's opinion of Gillberg's work, or at least the paper in question, including that he believes it is neither respectable and legitimate science nor the product of honest clinical practice - awfully big conclusions for Blumsohn to reach without the benefit of the magical powers he claims not to have. Oh, and "It means that all manuscripts published in JAACAP should be viewed with suspicion"? He hasn't said, but presumably Blumsohn is writing to every journal that has ever published anything by Gillberg, demanding they retract or face denunciation as "launderers" on the pages of Scientific Misconduct Blog. Finally - and at risk of being condemned again by Blumsohn for McCarthyist tendencies - I note that while Janne Larsson continues to emphasise his support for the Swedish Freedom of Information Act, he remains less keen on freeing information about his own role in the Scientology movement. Competing interests: Author of article in question |
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Leif R Elinder, Paediatrician Communiy of Uppsala, 75103 Uppsala
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Seeing the names appearing as Gillberg supporters in this trail of rapid responses highlights the manner in which this affair has been suppressed. There are the usual suspects, few of whom have declared their role in this affair. Various individuals have simply approached this matter – not as a problem of ethics and procedure – but on the basis of their underlying “scientific” beliefs, personal allegiances and collaborations. There are many relevant problems that could have been discussed. Who is allowed to see data? What is the nature of confidentiality in clinical research? What are patients permitted to consent to? Are participants in studies permitted to consent to suppression of scientific findings or potential scientific misrepresentation in clinical science? Should ad- hominem argument be allowed to trump questions about science and methodology? Why did the Gillberg group actually destroy the data? Where are the study consent forms? Does the fact that others have (apparently) managed to replicate some of Gillbergs findings have any relevance to the questioning of procedure in a particular study (of course scientific misconduct is scientific misconduct even if one obtains a result that someone later manages to replicate)? What is the precision of patient assessment? Might blinding in this study have been compromised to explain some of the anomalies? All of these are relevant questions some of which can never now be answered. Whether the precise ADHD concept as conceived by Gillberg is scientifically good or bad is really immaterial to the fact that debate about this research is not permitted to take place. The BMJ have contributed to this situation. Mr Gornall: You state that the principles of the Gillberg affair “have of course, been aired extensively, both in the BMJ and elsewhere”. I challenge you to reference those discussions in any part of the medical scientific literature (including in the BMJ). You and the BMJ have not contributed to any debate about the actual problem – this debate has simply not taken place. Your list of references is awaited. Leif Elinder Competing interests: Subject of the article |
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Stuart Alistair Jones, medically retired steeplejack. SA43 2EL
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Professor Eriksson seems to be shooting himself in the foot here: - On the contrary, there are, as should be obvious to the readers of BMJ, numerous studies in the medical field with such a low drop-out rate, or even lower. For example, in the renowned Dunedin Study (1) 1000 individuals from New Zealand were followed from the age of 3 to the age of 26: in this pivotal study, that has achieved well-deserved praise, the drop-out rate is 4%, i.e. considerably lower than in the study by Gillberg, despite that many of the participants have moved to remote parts of the world during the course of the study. Citing the Dunedin study leads directly to the core of the matter. The study is subject to full peer review, Gillberg's longitudinal study was not: It follows articles, and articles citing, or in otherwise drawing on the DAMP study are fatally flawed. The discourse on this "affair" should not be slur and counter slur. Ad hominem attacks on individuals should have no place in science, or even discussions about scientific fact. As some of the responders to this remarkable affair are supposed to be scientists, simply falling back on what a good guy, and his attackers are religious freaks, is really not good enough; and as for questioning religious, or other, beliefs. It should beggar the belief system of scientific fact. Take your facts where you find them, and discover whether they are true or false, if true they will be repeatable, and or, self evident. The good professor goes on to state: -This is however irrelevant: to prove that all data are correct in a study of this magnitude is obviously impossible and can never be the task for an investigating body. - This maybe true, but as he well knows, correct and proper peer review of the data will lead to the truth. Further, to destroy study data on the grounds, it would harm patients is a nonsense. Study subjects identities are easily protected, and is done so as a basic principle. I'm a lay person with an interest in diminishing the influence of the pharmaceutical companies, on all areas of society, including medical science. Stuart Jones. Competing interests: None, other than that laid out in the last paragraph |
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Steven P R Rose, Emeritus Professor of Biology Open University, Milton Keynes MK7^AA
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I have no axe to grind in this rather heated debate and have played no part in it. However, as the freelance journalist Vanna Beckman arbitrarily drags my name into the discussion by alleging, without evidence, that I 'belong to the camp of anti-psychiatrists' and am close to 'but fear to be connected with' scientologists, it is time to demand an apology. I do not know who Ms Beckman is, have never knowingly corresponded with her, and wish to make it categorically plain that I have abolutely no time for or truck with scientology. Nor, as a bsic neuroscientist, am I an 'anti-psychiatrist', by which I assume she means an adherent to the school of Laing and others from the 60s. What I am and remain, is a sceptic about the nature and scale of the current diagnoses of attention deficit hyperactivity disorder amongst children, the claims that such diagnoses have a reliable base in genetically based disturbances of neurotransmitter metabolism, and the uses of powerful medication to conrol the condition. Competing interests: None declared |
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Vanna Beckman, Free lance journalist and writer Kungälv, Sweden
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Steven Rose uphelds at least two different professional roles – one as a basic neuroscientist and another one that is deeply involved in political and ideological struggles in fields not directly connected with his neuroscientific research. Unfortunately in his writings he often doesn’t keep these roles apart but appears with the authority of the all- knowing scientist also when struggling against the well established diagnosis of ADHD, what he regards as the excessive use of anti- depressants or everything that he includes under the heading of neurogenetic determinism. Read for instance the chapter Explaining the brain, healing the mind? in his book “The 21st Century Brain. Explaining, mending and Manipulating the Mind” (2005) - and I think most people would join me in appointing Steven Rose a pronounced advocate for the anti-psychiatry camp. He devotes much space to the tragic cul-de-sacs of psychiatric practice like lobotomy and barbiturates, in a condescending tone ridicules the “so-called ‘evidence-based medicine’“ and the “bible of DSM”. Talking of SRRIs he stresses the suicide risk, the big money involved and Peter Breggin’s ideas that many psychiatric disturbances be caused by drugs. His picture of psychiatry is all black and sinister, without mentioning the considerable advances made during the last half century in the quest to alleviate the burden of mental conditions. After having described what he calls the epidemic of depression and anxiety and the widened criteria for bipolar disease and schizophrenia he asks if it is “as some conspiracy theorists (such as the scientologists) suspect, a medicalising myth through which people are kept in thrall by a sinister psychiatric establishment?” (page 225). After finishing the book it is difficult not to draw the conclusion that his own answer must be in the positive. I have absolutely no suspicion that Steven Rose has direct relations to scientology, but nevertheless many of his themes coincide with the writings of Thomas Szasz, Peter Breggin and others in their rather homogeneous anti-psychiatric ideology whose most aggressive megaphone is the Church of Scientology with its DVD “Psychiatry – Industry of Death”. Vanna Beckman, freelance journalist and writer, Kungälv, Sweden Competing interests: None declared Competing interests: None declared |
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Denny H Vågerö, Professor, director Centre for Health Equity Studies, CHESS, Stockholm University/ Karolinska Institutet
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Jonathan Gordall quotes me in his article. Allow me to clarify. I was asked by the Swedish Research Council to review some of the critique against Gillberg, specifically the harsh critique against Gillberg's work formulated by Eva Kärfve in her book"Brain Ghosts" (available only in Swedish). My judgment (see below), as well as that of professor Ottoson, concerned what was written by Eva Kärfve and whether her critique of the Gillberg group was unfair and could be said to constitute scientific misconduct. We were not asked, and found no particular reason, to look into whether she was collaborating with the scientology church or not - in fact this is irrelevant to the primary conflict between Kärfve and Gillberg. Neither were we asked to, or did we, look into the events leading up to the destruction of Gillberg’s large data material. Both of these aspects are central in Gordall’s article and in the 22 (so far) rapid responses. The reviews commissioned by the Swedish Research Council in 2006 have only been available in Swedish. I think they would help the reader of BMJ to understand the roots of the controversy and to move beyond the bitter accusations and counter-accusations. My review and that of professor Jan Otto Ottoson came to similar conclusions. Finally the Swedish Research Council followed our advice that Kärfve’s criticism should not be dismissed as scientific misconduct. Below is my statement for the Swedish Research Council. To the Swedish Research Council I, the undersigned, have been requested by the Swedish Research Council to present my views on the Lund University communication of 26 March 2005 concerning the claim that Eva Kärfve had been guilty of scientific misconduct. A preliminary approach was made to me in the late autumn of 2005, and this was followed by a definite request in February 2006. The Lund University communication raises a number of issues. The Swedish Research Council, however, primarily wanted me to take a position on the question of whether Eva Kärfve’s research could be described as scientifically dishonest on the basis of three passages in her book Hjärnspöken (‘Brain Ghosts’) specified in the university communication. My opinion on these three points is as follows: 1. Kärfve (page 15) writes that Gillberg and Landgren ignored or dismissed findings that indicated the relevance of social factors, such as social class or housing conditions, for minimal brain dysfunction (MBD). Is this claim misleading or untrue? Gillberg discussed psychosocial conditions and social class in a number of different places in his doctoral thesis. He finds, for instance (page 103, table III), that social class, poor housing areas and rented flat accommodation are highly correlated to the MBD diagnosis. Similarly, the mother’s stress load is significantly correlated to the MBD diagnosis in the child. He nevertheless concludes (page 112) that “Social disadvantage is in itself not an etiological factor”. This certainly looks like a dismissal. The keywords in seeking to understand Gillberg’s conclusion are in itself. On page 112, he explains: “Social class, although in itself highly correlated to the MBD diagnosis, was not in any way a factor directly affecting the background variables studied.” Instead, the etiologically operative background factors to which weight is attached are for instance “prenatal non-optimal factors” and “hereditary non-optimality” etc. Gillberg appears to be arguing that since social class and housing area are not linked to these background factors, they cannot be of etiological interest. But if social class and housing area are highly correlated to MBD, despite not being correlated to variables such as “prenatal non- optimal factors”, a reasonable conclusion would instead seem to be that social class is an (‘upstream’) etiological factor that operates via some other mechanism than the ones discussed above. Thus an important discovery is left hanging in the air, without any interpretation. Alternatively, social class may nevertheless have affected the factors grouped under the heading “prenatal non-optimal factors” (including for instance low weight at birth and premature birth) without such a link being detected in this particular study, targeting as it does a relatively limited number of persons (= low statistical power). In Sweden, low birth weight and premature birth were more common among working-class mothers and mothers with little education during this period. Gillberg himself notes in his thesis the relevance of low birth weight and “small for gestational age” as etiological factors for MBD (pages 110–111). Thus it would have been reasonable to expect that “prenatal non-optimal factors” would mediate the observed correlation from social class to MBD in Gillberg’s study. Here, too, an unanswered question is left hanging in the air. The factors grouped under the heading of “hereditary non-optimality” also include some with a social content. Late puberty among older relatives is taken to be suboptimal heredity. But the age of entry into puberty has been shown to be highly differentiated by social class in all countries where the matter has been examined. This background factor, therefore, might equally well be interpreted as a social factor as an hereditary one. Kärfve may be wrong to argue that Gillberg ignored the impact of social class and housing area on the development of neuropsychiatric diagnosis. She is right, however, to argue that he dismissed them as significant causal factors. Gillberg’s reasons for dismissing them are hardly convincing, at least not in light of our current knowledge in this area. Even if Gillberg had devoted greater attention to this issue, it goes almost without saying that a sociologically trained person would want to analyse this point in greater depth and to partly dispute it. Kärfve’s criticism in this respect cannot therefore be described as illegitimate. 2. Kärfve (pages 49–55) discusses what is termed the Mariestad study by Magnus Landgren, Christopher Gillberg et al. The study is included in Landgren’s thesis. Lund University’s communication asks for comments on what Kärfve says about this study on page 52 in her book. In describing the authors’ work, she talks about them “rummaging through old patient records”, accuses them of cynicism and urges that their work be rejected. Kärfve’s tone is bantering. Is she misleading, scientifically dishonest or propagating an untruth? Kärfve comments on the fact that five children who were screened as positive and whose parents subsequently declined to take part in the clinicial study were nevertheless included in it. Landgren and his colleagues give the children neuropsychiatric diagnoses with the aid of patient records (“a thorough evaluation of all previous records and of the screening results” [page I:5 in Landgren’s thesis]). The diagnoses are given without the team having met the children. Examination of the records led to five children being given the following diagnoses: motor perception dysfunction, mental retardation, DAMP, ADHD, and in one case a combination of ADHD/DAMP. This procedure contrasts sharply with the account of how other children in the study were given their diagnoses, namely through “…in- depth neurodevelopmental/neuropsychiatric assessment. This comprised a detailed history, psychiatric and neurodevelopmental examination, neuropsychological assessment and evaluation of speech and language performed by the author (ML), psychologists and speech therapists…. a medical, developmental and behavioural history was taken at interview with the parents, using a standardised interview schedule…etc.” (Page I:3 in Landgren’s thesis.) Diagnosis setting and diagnosis criteria are one of the most controversial aspects of the Gillberg group’s research. There is good reason to critically discuss the way these five diagnoses were made. The study is a limited one, at least in terms of statistical ‘power’, and it is not clear to what extent the addition of these five diagnosed children to the other 58 diagnosed children has affected various conclusions in the study. The methodological problem is left unsolved. Landgren’s discussion fails to tackle the problem; instead, the mothers’ reluctance to take part in the study is seen as possible confirmation of the neuropsychiatric diagnosis given to the children. Nor is there any discussion of the ethical problem of including the five children in the study against their parents’ wishes. I am of the opinion that Kärfve’s criticism on this point – despite the severe language it is couched in – is neither dishonest, untrue nor unreasonable. 3. Point 3 in the Lund University communication principally concerns pages 45–55 in Kärfve’s book. These sections mainly deal with how Gillberg’s and Landgren’s theses estimate the prevalence of MBD (Gillberg) and DAMP and other diagnoses (Landgren). Gillberg makes specific estimates of the prevalence in Sweden based on their studies. Kärfve is highly critical of how Gillberg’s prevalence estimate is strongly influenced by two cases that were transferred from the control group to the group with MBD. As a result, MBD prevalence among boys is estimated at almost 10 per cent. This illustrates how small changes in the material can have a major impact on estimates. Kärfve has similar objections to Landgren’s estimates. Probably a more important problem concerning the estimation of prevalence of such neuropsychiatric diagnoses among children in Sweden is the extent to which the authors’ material is selected. Even if the intention is to base the study on the population as a whole, a step by step process occurs until those who are to take part in the study are finally selected. The selection covers such aspects as the researchers’ choice of study venue, whether the children attend preschool, parental decisions whether or not to take part in a survey, decisions by preschool staff whether or not to distribute the survey questionnaires, parental decisions as to whether their children should be clinically examined or not, and the researchers’ decisions whether to expand groups or move people between groups. It is by no means certain (especially in the case of the Göteborg study) that prevalence estimates are actually based on a sample of children that is representative of the child population in each venue, not to mention Sweden as a whole. A full discussion of possible bias in the estimation is needed. Nor have Landgren and Gillberg included any statistically calculated confidence intervals with their estimates. This is otherwise common practice, especially if working with representative samples. Thus it is difficult to express any opinion at all on the value of Gillberg’s estimation from 1981 that 7.1 per cent of Swedish children have MDB. Viewed objectively, therefore, Kärfve’s criticism of what she calls Gillberg and Landgren’s neuropsychiatric mathematics is not particularly startling. Conclusions Lund University has asked for an assessment of certain passages in Eva Kärfve’s book, ‘Brain Ghosts’. Are they examples of scientific misconduct? Kärfve does not pursue any neuropsychiatric research of her own – in her book she makes no reference to publications of her own in this field – and can therefore hardly be accused of scientific misconduct in the sense of having invented her observations, falsified her findings or showing negligence in the presentation of her data. Original research – the base on which scientific knowledge is built – must of course be the area of activity subjected to the closest scrutiny, whether cheating or dishonesty is suspected or not. In the present case, the question is whether Kärfve’s critique of research undertaken by others is dishonest. All three points raised in the Lund University communication concern Kärfve’s discussion of the Gillberg group’s research, not her own studies (in the same book) concerning the ideological roots of some of the ideas that both laypersons and professionally trained experts possess/have possessed concerning mental ill-health and its causes. Scientific critique should also be subject to scrutiny, of course, but can the same criteria be applied? Scientific critique, whether strongly polemical or not, should in my opinion be considered a legitimate activity even when the person levelling the criticism does not primarily belong to the research community being criticised. Advancing one’s criticism outside academia, as part of the public discourse, is also legitimate. Normally, scientific critique helps improve the research in question. Research controversies, even when marred by irrelevancies, often generate new perspectives on old truths or unresolved scientific issues. In that sense, scientific critique is one of the conditions of research and a prerequisite for knowledge growth. Kärfve’s sociological expertise means that she is competent to assess various aspects (but not all) of the Gillberg group’s research. Research methodology and analyses of causal links are (or should be) essentially the same in all disciplines primarily concerned with studying human beings and human society. If they nevertheless differ, there is every reason to express oneself with care and to carefully encourage interdisciplinary understanding. Kärfve’s book is largely a polemical publication of a general nature – primarily intended, perhaps, to influence the community at large and policymakers, and only as a secondary consideration addressing the specialised circle of people working scientifically with these matters. One might take the view that Kärfve is unnecessarily disputatious in tone, or sometimes goes a bit far, but writing a polemical publication on scientific issues that is partly or largely aimed at a general readership can hardly be equated with scientific misconduct. On the contrary, it is a time-honoured tradition in many scientific fields. I believe it would be of benefit to the scientific discourse if Eva Kärfve were also to express her views precisely and scientifically in the sociological or medical science press. An unfortunate aspect of the conflict currently surrounding neuropsychiatry is that it risks drawing up unproductive battle lines between social scientists and the medical profession. Ranging the ‘biological’ against the ‘sociological’, or ‘biologism’ against ‘sociologism’, may be popular nowadays, but it is totally fruitless. Most biological processes are affected by people’s relations to one another, i.e. by society. Equally, social processes are affected by biology. If we are to understand how, we need a dialogue between disciplines. If the Swedish Research Council has a part to play in connection with the Kärfve-Gillberg conflict, it should be to promote such a dialogue and to prevent bloc-building and disciplinary trench warfare. Some unique research material has been destroyed. The development of children’s mental health in modern Swedish society is in many ways a cause for concern. We need to bury the hatchets. Stockholm, 20 March 2006 Denny Vågerö Professor, Member of the Royal Swedish Academy of Sciences (Translation by Stephen Croall) Competing interests: None declared |
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