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Destruction of data prompts calls for Swedish agency to investigate research misconduct
- Raymond Gallup (13 July 2004)
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EVERYTHING IS PRESUMED AGAINST A DESPOILER OF EVIDENCE
- Clifford G. Miller (14 July 2004)
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Possible scientific misconduct in child psychiatry in Sweden
- Leif R Elinder (23 July 2004)
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More on data destruction and research misconduct in Sweden
- Thomas Brante (23 July 2004)
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Inconsistent information
- Eva Kärfve (24 July 2004)
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Effective tools had prevented Swedish scandal in science
- Staffan Josephson (24 July 2004)
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Raymond Gallup, Founder of The Autism Autoimmunity Project Lake Hiawatha, NJ 07034, USA
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In regard to the news article about Professor Christopher Gillberg by Caroline White, I would like to add some more information. Professor Gillberg is on the Scientific Advisory Board of Cure Autism Now in the USA. (1) Cure Autism Now has not funded one independent clinical study regarding the link of autism to the MMR vaccine. All of Professor Gillberg's articles discount any link between the MMR vaccine and autism. The Swedish newspaper, Sydsvenskan published on May 12, 2004 (2) and on May 13, 2004 (3). Both articles are in Swedish. References: 1. http://www.cureautismnow.org/research/boards/3349.jsp 2. http://w1.sydsvenskan.se/Article.jsp?article=10083572 3. http://w1.sydsvenskan.se/Article.jsp?article=10083719 Competing interests: Founder of The Autism Autoimmunity Project and father to Eric Gallup, who was born normal and regressed into autism after receiving the MMR vaccine |
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Clifford G. Miller, English lawyer & graduate physicist Beckenham Kent BR3 3LA
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Dear Sirs, EVERYTHING IS PRESUMED AGAINST A DESPOILER OF EVIDENCE - Courts Can Protect Confidentiality - Illegal Destruction of Data Unjustified - Should papers now be retracted? English Courts have always been able to protect patient and other confidentiality whilst requiring disclosure of relevant data. The same must surely follow for the Swedish Courts. Can the protection of patient confidentiality have been a valid reason justifying destruction? Logic suggests not. The Swedish courts must be able to protect confidential data, as they, like the English courts, must surely be able to do (as they could not otherwise function adequately in dealing with issues of confidentiality) then why was the data destroyed? Destruction in the face of a Swedish court order for disclosure certainly seems an unusual action. Hoechst Celanese Corporation v. BP Chemicals Limited [1998] EWHC Patents 331 (26th March, 1998) is one of a line of English cases which establishes that where documents are destroyed in the face of litigation, the maxim 'omnia praesumptor contra spoliatorem' can apply (Everything is presumed against the despoiler). In that particular case the maxim was not applicable because there was no applicable destruction. However, the judgement of Jacob J., a respected judge and eminent intellectual property lawyer, assists in clarifying the English law. So, where does this place any scientific papers published on the basis of this now non-existent evidence? Papers which were being, it seems, challenged for inconsistencies in litigation? Will these papers now have to be withdrawn by the journals which published them? Will the journals do so voluntarily? How many papers are concerned? In which journals are they published. Will the journals publish any caveats about reliance on the papers concerned? Was any of the data related to any patients treated in St. George's Hospital? Were the patients consulted and their permission sought for the destruction? Was it really an issue of ethics driving this? Were the patients given the opportunity of being represented before the court if they objected to the production of the data so that their concerns could be taken into account in any order for disclosure? Have any patients in this country objected to the destruction? Has their position and prospects for their future treatment been harmed by this seemingly illegal action? What criminal sanctions apply in Sweden if there has been illegality involved? What criminal sanctions would apply in England and Wales if any patients from those states are involved. What is the position of St George's Hospital? Has there been any statement issued? Competing interests: Close relative with life threatening food allergy. |
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Leif R Elinder, Pediatrician ROK, 75103 Uppsala, Sweden
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Regarding your article – “Destruction of data prompts calls for Swedish agency to investigate research misconduct” (BMJ, 10 July 2004, page 72). Background: The Swedish neuro-psychiatric research controversy became public when the leading neuro-psychiatrist - Professor Christopher Gillberg - in a major Swedish newspaper in 1997 announced that 120. 000 children (i.e. 10% of all Swedish children) were suffering from neuropsychiatric disorders – that is ADHD, MBD/DAMP*, Aspergers syndrome and Tourettes syndrome. In an ethically questionable research project at the University in Gothenburg, Professor Gillberg and three of his close associates studied 42 MBD/DAMP– children, who without treatment were followed for 15 years. The aim with the study was to find out what happens to diagnosed children when you do not treat them ( i.e “they would represent the outcome without intervention”). One odd peculiarity was that almost all children continued to turn up year after year for extensive investigations without receiving a diagnosis nor treatment. Over a 15 year period the drop out rate was only 7% (3/42). In order to find out what methods the Gillberg group have used to receive such a low drop out rate, a couple of colleagues (a pediatrician and a sociologist) have asked to see his raw data. The Gillberg group and the Dean (Gunnar Svedberg) of the University of Gothenburg refused. The two skeptics therefore sought legal redress so that they could see for themselves. The Swedish civil court (Kammarrätten) stated in unanimous rulings that the material could be examined by the two skeptics. The Gillberg group and the Dean however obstructed the courts ruling. Therefore Gillberg and the Dean now are under legal investigation by Kerstin Skarp (Deputy state prosecutor of Sweden) for civil misconduct. Despite the Civil Court`s third ruling (2004-05-04, Number 1148-04) Professor Gillberg in a letter announced that he would not follow the Court order. Two days later all the research material (22 shelf meters, 100. 000 pages) at the university’s premises was destroyed. After the illegal destruction of the research material Professor Gillberg publicly makes the following statements - 1. Gillberg states he only wanted to safeguard patient confidentiality. 2. Gillberg states he was completely unaware of the destruction. (Instead his wife claims responsibility for the destruction with Peder Rasmussen (Gillberg`s closest research colleague) and Kerstin Lamberg (a university administrator who is employed by Gillberg). 3. Gillberg states that all allegations about scientific misconduct “have been refuted by all relevant authorities after extensive investigations”. 4. Gillberg states that the “Church of Scientology had been running a lengthy campaign to discredit his research” and that the views of his critics “reflected those espoused by certain Scientologists”. My comments: 1. The individuals in Gillbergs research study were study objects and not patients. They did not receive either diagnosis or treatment. A civil court granted after thorough investigations two professionals (Leif Elinder and Eva Kärfve) access to the research material. Such an examination can only take place under strict confidentiality and under severe legal consequences if there was a breach of confidentiality. On the other hand - Professor Gillberg and his associate Peder Rasmussen have in their last scientific paper** regarding the study expressed thanks to eleven different people “for help with data collection and compilation” (Four of those mentioned by name are the children to Gillberg and Rasmussen). 2. It is highly unlikely (to say the least) that Gillberg`s wife and his closest colleague (Rasmussen) would destroy their 15 years of research material without first discussing it with the leading figure – i.e. Professor Gillberg. 3. In a letter to me on May 7, 2003, Professor Ove Lundgren***, the Chairman of the Gothenburg`s University Ethics Committee wrote that “he considered his four hours long investigation (initiated by Gillberg) to be insufficient. He also advised the Dean and Professor Gillberg that he considered that the matter deserved a thorough examination by an independent examiner. 4. Neither I nor any of my colleagues or friends have the faintest connection with the Church of Scientology. All the time my primary objective has been to have the Gillberg group research study examined by an independent body – i.e. the Ethics Committee of the Swedish Research Council (as Professor Ove Lundgren suggested). However Professor Gillberg and the Dean have steadily refused my requests. Their refusals have led to several Civil Courts rulings all going in my and Eva Kärfve`s favor. The outcome finally ended in the complete destruction of all the research material. Sincerely yours Leif Elinder
* MBD (Minimal Brain Dysfunction) - is an outdated neuropsychiatric concept. When the Gillberg group started their study in 1978, they labeled the dysfunctional children as “MBD”. In the 80th (in the middle of the study) they switched the MBD - name to DAMP (Deficiency in Attention and Motor Perception). DAMP is a different and much broader concept that ADHD (Attentions Deficit Hyperactivity Disorder). The Gillberg group still consider that the MBD/DAMP – concept outlines a hereditary/juvenile brain disorder (“brain dysfunction”). ** Natural outcome of ADHD with Developmental Coordination Disorder at age 22 years. Peder Rasmussen and Christopher Gillberg, J. AM. ACAD. CHILD ADOLESC PSYCHIATRY, 39:11. N0VEMBER 2000. ***Professor Ove Lundgren, Gothenburg’s university, The Sahlgrenska Academy, Department of Physiology .Tel +46(0)31-7731000. Competing interests: None declared |
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Thomas Brante, Professor of Sociology University of Lund
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In BMJ, July 10, 2004, Caroline White summarizes what is perhaps the greatest research scandal in Sweden ever; the destruction of a substantial quantity of research material spanning 25 years and relating to an alleged mental disturbance in children and adults called DAMP. DAMP-research has been conducted since 1979 by a group at the University of Gothenburg, led by professor Christopher Gillberg. The destruction prevented the resolution of a three-year controversy about the scientific status and the socio-political consequences of DAMP. Unfortunately, BMJ reporter Caroline White seems to have relied on sources from one side of the controversy only. The following clarifies the main issues and endeavours to add further perspective to the BMJ’s reporting. The issues do not concern ADHD (attention deficit/hyperactivity disorder) but DAMP (deficits in attention, motor control and perception). The concepts overlap to some extent but there are substantial differences - see Rutter below. While ADHD is an internationally widespread concept and diagnosis, DAMP is exclusively Swedish, initially formulated by professor Gillberg. The controversy started in 2000, when associate professor Eva Kärfve, sociologist from the University of Lund and a co-worker of mine, published a book which is highly critical of the DAMP-concept and its clinical and social implications. Professor Kärfve’s critique built on books and Ph.D. theses published by Gillberg and his followers. A year later, after becoming aware of further possible inconsistencies, Kärfve asked to be permitted to inspect the raw data upon which DAMP-research is based. Gillberg refused, and Kärfve went to court with her demand. Leif Elinder, M.D. and child physician from Uppsala, also handed in a request to scrutinize the raw data. The Swedish court ruled in favour of Kärfve and Elinder. Gillberg appealed but was rejected; the court again decided that Kärfve and Elinder would be allowed to see the material. Gillberg appealed again, and for the third time, the court ruled in favour of the petitioners, adding that further appeals would no longer be permitted. The third court decision was made public on May 4, a Thursday. The examiners declared they would materialise in Gothenburg the following week, getting access to the data by police support. So time was running out. Gillberg’s wife, Carina Gillberg, his collaborator Peder Rasmussen, and an administrative controller employed by Gillberg, Kerstin Lamberg, took quick action. The three claim they spent the week-end (May 7 – 9) in the vault where the material was stored, putting all evidence in three shredders. Gillberg himself asserts (e.g. in BMJ, July 10) he was abroad and that he did not know anything about his wife’s and co-worker’s activities. So we are asked to believe that he was kept unaware of the plan to destroy the material he had gathered, elaborated and built his career on for the past twenty-five years. It should be added that it is against the law to destroy publicly funded research material in Sweden without permission. Thus, perhaps unsurprisingly, Gillberg himself cannot be charged for acting illegally; only wife, collaborator and controller may be implicated. Why did not Gillberg disclose the data? He maintains that the material included sensitive facts about his 140 informants (not patients: for research purposes, nobody in this group has received treatment and they do not know whether they are placed in the control group or the DAMP- group), and that he had promised them that only his research group would have access. Eva Kärfve has repeatedly asked Gillberg to de-identify the data, but Gillberg has refused, indicating that the material will rather be destroyed. Throughout these three years, a heated dispute has been pursued in the Swedish media, filled with angry charges and signed petitions. Gillberg has been supported by Swedish neuro-psychiatrists and Kärfve by social scientists, journalists and some physicians. Claims have been made that professor Kärfve is a scientologist, that she runs a personal campaign, vilifying Gillberg, that she is a mother of DAMP-children, and much more. These are mistaken claims, none being correct. Her critique is strictly methodological and thus scientific, not religious (scientology is a church, and Kärfve has no links whatsoever to it), she has absolutely no interest in Gillberg’s person or political views, and there is nothing wrong with her children (all of which is, of course, completely irrelevant anyway). Further, the Gillberg group has stressed that Gillberg is internationally famous while Kärfve is not, demanding that her Docent- title is withdrawn and that she is dismissed from her university. These allegations have the effect of implying (wrongly) Kärfve is not to be taken seriously and divert attention from the key question; the scientific status of DAMP-research. Kärfve’s critique has never been countered. And she has not met Gillberg with similar derogatory remarks. Further, contrary to the contentions in Carolyn White’s article, no authority has been yet identified as having conducted an ‘extensive investigation’ of Gillberg’s research and if there has been one, it would assist to see the written report and conclusions, if any. The issue also has dimensions of more general interest. One of Gillberg’s collaborators and fiercest advocates, pharmacologist Elias Eriksson, has repeatedly declared in the media that since clinical medical research often includes sensitive information about patients, the raw data should never be examined as such; that secrecy should be preserved. Consequently, one of the pillars of traditional science seems to be at stake. The principle of patient integrity stands against the principle of openness as a scientific imperative. Which principle should rule? To my mind, the answer is obvious. All knowledge-claims with scientific pretences must be open to scrutiny. If not, we are dealing with issues beyond science. Indeed, rational critique is the motor of scientific development. In Sweden, however, at present we have no clear guiding-line resolving this apparent dilemma. I suggest adherence to American Psychological Association’s Ethical rule 8:14: ‘After research results are published, psychologists do not withhold the data on which their conclusions are based from other competent professionals who seek to verify the substantive claims through reanalysis and who intend to use such data only for that purpose, provided the confidentiality of the participants can be protected and unless legal rights concerning proprietary data preclude their release.’ Were there flaws in Gillberg’s raw material, as Kärfve, Elinder and others have suspected? Of course, now we will never know, but one indication of serious flaws comes from an external investigator, one of the most authoritative scientists in this field, Sir Michael Rutter, University of London. Last year, Sir Michael gave a speech in Stockholm, comparing the concepts of ADHD, MBD, and DAMP. His analysis revealed no great problems with ADHD but grave flaws in the older concept, MBD. Rutter concluded: ‘Concept of DAMP is even more muddled and it similarly lacks both internal coherence and external discriminative validity. Moreover, it has no demonstrated treatment or prognostic implications. It is past time that it too was abandoned.’ Rutter’s critique and other circumstances strongly indicate that the maxim referred to by Clifford G. Miller, BJM, July 14, http://bmj.bmjjournals.com/cgi/eletters/329/7457/72#67199 is applicable: ‘Omnia praesumptor contra spoliorum’ (Everything can be presumed against a despoiler of evidence). This is especially so since it would have been so easy for Gillberg to resolve the whole affair by simply de-identifying the data. So what should happen in Sweden now? Obviously, this situation creates problems: we have several books, accepted Ph.D- theses and articles in scientific journals that are based on Gillberg’s data, and there are numerous DAMP-centres all over the country treating children guided by these findings which cannot be verified being based on now non- existent data spanning such a long time. The most rational, albeit very cumbersome, course of action would be to withdraw all research relying on the data and to close or redesign the care centres. Just like Volvo revokes its cars when a construction fault is discovered, a faulty (or non -existent) scientific diagnosis and its implications must be possible to revoke. Thomas Brante Professor Department of Sociology University of Lund Lund, Sweden thomas.brante@soc.lu.se Competing interests: None declared |
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Eva Kärfve, ass. prof University of Lund, dept of Sociology, Sweden
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Letter of response. Apropos the article (BMJ July 10th) discussing the charge with scientific fraud in Sweden, and as the alleged whistle-blower in this particular affair, I would like to elucidate a few important things. The issue at stake is the neuropsychiatric concept of DAMP, Deficits in attention, motor control and perception, as founded by Professor Christopher Gillberg, Gothenburg, Sweden. As a mental disorder it is a national peculiarity, combining light symptoms of ADHD, minor motor control problems with various perception difficulties and conduct disorder, all explained in biological and genetic terms. All kinds of combinations of symptoms of various severity might do. Therefore, as a standard concept in Swedish child medical practice it is widely applicated. The basis of this national disorder is a longitudinal study, made in Gothenburg 1977-1993, ending in four doctor’s dissertations and numerous international reports. The concept has been severely critized, particularly outside of Sweden, for instance by Professor Michael Rutter and Professor Eric Taylor, GB. I have made some charges against this study and its contradictory reports. These allegations have never been answered properly. The vice- chancellor of Gothenburg University, who, according to national rules, is the one to receive the charges in the first place, had only to leave the charge to the National Scientific Board, which cannot act without a request from the university. This was never done. Instead, the vice- chancellor conducted an investigation on his own, an inspection of the material lasting a few hours. The work demanded daily work for weeks, a fact that was publicly pointed out by the investigator in charge, Professor Ove Lundgren, Gothenburg University. Nevertheless, this quick surface inspection was presented as ”extensive investigations” aquitting the researchers, a notion also passed on in the BMJ article mentioned. My point is that the different reports contain information which is contradictory to a degree that makes it reasonable to question the validity of the survey as a whole. Apart from the scientific basis now being destroyed, this claim can still be judged by anybody taking an interest in scientific conduct. I will readily support any such person with a short summary of the charges and a specified list of the articles in question, all originally published in English. Eva Kärfve, Ass.Prof. Dept of Sociology, Lund University, Sweden Competing interests: None declared |
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Staffan Josephson, AssociateProfessor Institution of Woman&childHealth, KarolinskaInstitute,KUS,SE-17176Stockholm,Sweden
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Starting from Caroline White’s news article about the ADHD/DAMP scandal in Sweden, I would like to proceed to comfort Stephen Lock (previous Editor, BMJ: BMJ Oct 25, 2003). You are not the only one, who has reason to groan at one’s country’s incapacity to create an effective board against scientific misconduct. The scandal, so defiling science, could have been avoided if Chancellor Gunnar Svedberg had had satisfactory sense of justice (and courage?) to disregard Professor Gillberg’s unreasonable resistance to scrutiny of his basic data. Despite a suspicion of misconduct had been delivered, and even if the scrutiny was guaranteed impartial and independent and secrecy imposed. The Swedish Research Council (SRC) has in fact an Expert Group for such analyses, considering and estimating suspected scientific dishonesty/misconduct (since May 27, 2002). Unfortunately, there is a serious failure – according to SRC’s own rules, the Group can be initiated only by the chancellor of the university, where the suspected misconduct has been perpetrated! Actually, the rules explicitly lay down that other whistleblowers shall be rejected. That is why the integrity of the chancellor becomes so extremely important. And, during the first two years – to the surprise of nobody except for SRC – only two reports appeared. Both were rejected according to the SRC’s rules; one of them came from two (non-chancellor) whistleblowers (Professor Eva Kärfve, Dr. Leif Elinder) and was about the Gillberg case. These contraproductive rules of SRC combined with the lack of action energy of the chancellor led to the fact that SRC itself in Nov. 12, 2003 conferred a continued 3-year grant of totally 120.000 £ to Professor Gillberg for his ADHD/DAMP project. Despite full knowledge of all Gillberg’s and Svedberg’s repeated violation of court’s order and other tricks. It is true what deputy general of SRC says, that SRC has asked the government for extended authority to counteract scientific misconduct, i.e., allowing whistleblowers. This was done April 21, 2004, reluctantly, after hard and persistent pressure from an extern lobby, and thus two years instituting the Expert Group. Competing interests: None declared |
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