Following discusses some medical research by Christopher Gillberg, and what has come to be known as the “Gillberg affair”.
Christopher Gillberg is a professor of Child and Adolescent Psychiatry at Gothenburg University, in Sweden. He is internationally known for his research, and he has been a professor or visiting professor at the universities of Bergen, London, New York, Odense, San Fransisco, and Strathclyde. He is also author or editor of several scientific books, and he has authored or co-authored more than 300 research articles.
A significant portion of Gillberg's research has been about a psychiatric concept known as “DAMP” (Deficits in Attention, Motor control, and Perception). DAMP is related to Attention-Deficit Hyperactivity Disorder (ADHD). The concept of DAMP was conceived by Gillberg, but DAMP has been ignored or strongly criticized by other researchers.
Much of Gillberg's research on DAMP has involved children in the city of Gothenburg, Sweden. Gillberg undertook a study of children in Gothenburg who had been born in 1971. The study began when the children were 6–7 years old (in 1978), and lasted until the children were adults. Some of the children were diagnosed as having DAMP; others were not.
By following the children through to adulthood, the study was able to draw conclusions about how having DAMP affects peoples lives. For example, the study concluded that children with DAMP had more problems with the law, drugs, interpersonal relations, etc. when they reached adulthood than people who did not have DAMP.
Gillberg's study is one of very few studies to follow a group of people from childhood to adulthood (such a study is known as “longitudinal”). The study is thus important evidence for the hypothesis that having DAMP (or ADHD) as a child adversely affects the person's life in adulthood.
In the study, Gillberg asserted that one out of ten Swedish children have either DAMP or a similar neuropsychiatric problem. (A neuropsychiatric problem is a mental illness which is almost always inherited or otherwise congenital.) The optimal treatment for such problems generally involves the use of psychiatric drugs, e.g. Ritalin. Such drugs are typically prescribed for many years.
Eva Kärfve, a professor of sociology at Lund University, in Sweden, and Leif Elinder, a Swedish pediatrician, were highly skeptical of Gillberg's conclusion that about 10% of Swedish children had a congenital mental illness. They were also concerned because the safety of the psychiatric drugs on the developing brains of children is questionable, and because good-quality evidence for the drugs' long-term effectiveness is lacking.
Allegations of misconduct
In 2000, Gillberg and his colleague Peder Rasmussen published a major article describing an investigation of the Gothenburg study participants. (Most of the data for the investigation was actually gathered in 1993, when the participants were 22 years old.)
Kärfve and Elinder claimed to find serious discrepancies in the article. In 2002, Elinder petitioned Gothenburg University to investigate Gillberg's research for fraud. His petition was handled by the Ethics Committee, which dismissed it, after receiving a response from Gillberg. Kärfve then petitioned the university for an investigation. Her petition was considered more carefully. Ultimately, the Ethics Committee voted on whether or not to refer the matter to the Swedish Research Council for investigation. The vote was 3–1 against.
The main issues in the allegations made by Kärfve and Elinder seem clear. For example, Gillberg would not supply the names of the various specialists who examined the study subjects (for psychiatric disorders, etc.); even more, Gillberg repeatedly claimed that he had supplied the names—but he would not say what the names were. Acts such as this obviously support suspicion of misconduct. Moreover—and importantly—they do not require specialist training in neuropsychiatry to understand. The decision of the Ethics Committee seems to have been based at least partially on the belief that a researcher with a reputation as great as Gillberg's could not have committed fraud.
Kärfve and Elinder also requested access to the data used in the Gothenburg study, so as to investigate for themselves. They were denied this, on the grounds that the study participants had been promised confidentiality. They asked for the data to be anonymized (i.e. obfuscated so that individuals cannot be identified: this is a standard practice). They were told, however, that this could not be done.
Kärfve and Elinder took the matter to court, under the Swedish law of the Principle of Public Access. The court decided that they would be allowed access to the data. Gillberg refused to respect the court's decision. Instead, Gillberg asked to have the research material scrutinized by outside experts. A panel of appropriate experts was promptly constituted by the Swedish Research Council.
Before the panel could begin work, however, the Gillberg group asked Ove Lundgren, who was the Chairman of the Ethics Committee (and a Professor Emeritus of Physiology at the university) to examine the data. Lundgren was asked to do this as a private person, i.e. not representing the Committee. There was 22 meters of material, including about 100 000 pages. Lundgren was given four hours to scrutinize all this. He found nothing that seemed seriously wrong.
Gillberg then told the rector of the university that the Chairman of the Ethics Committee had done an investigation and that as a result “the accusations about scientific fraud … definitely could be dismissed”. (The head of the faculty of health sciences—the Sahlgrenska Academy—at the university supported Gillberg in this.) Gillberg then withdrew his prior agreement to have the research material scrutinized by outside experts. His justification was that such scrutiny was no longer needed, because Lundgren had now acquitted him of fraud.
The members of the Ethics Committee later responded to all this by publishing a letter stating that the Committee “never acquitted Gillberg of the allegations” and that “the question about scientific fraud never has been investigated”. Lundgren said on Swedish TV that he thought he had been used/exploited by Gillberg.
Gillberg gave an additional reason for refusing to make the data available: he said that the study participants had been asked what they thought of this, and all but one was strongly opposed. That is true, but the Swedish journalist MarieLouise Samuelsson discovered that there is more to the story. Her report is referenced below; briefly, the story is as follows.
Among the study participants, there was a widespread belief that an investigation (by Kärfve and Elinder) would mean that virtually everyone would be allowed to see the research data. For example, a man who was a participant made a comment on Swedish television where he warned that “your worst enemy would get access to this sensitive information”. Gillberg also analogized an investigation thusly: “What would you say if you had AIDS and your doctor threw your medical records out on the street?”.
In reality, only Kärfve and Elinder would have been able to see the data, and they had to sign statements agreeing to maintain confidentiality. (Moreover, they had asked for the data to be anonymized: even if Gillberg's claim that anonymization could not be done completely was valid, this could have been done at least partially.)
As well, the study participants were not simply asked if they were for or against making the data available. Rather, each participant was telephoned by someone representing the Gillberg group, and afterwards received a strongly-worded letter of protest against making the data available.
It is clear from all of this that the study participants were pressured and misled into opposing an investigation. It is worth considering what motives Gillberg could have had for doing that.
Gillberg, with assistance from the university, asked the court to reconsider its prior decision to require that the data be made available. The court dismissed this. The rector of the university, Gunnar Svedberg, then wrote a letter to Elinder and Kärfve, saying that although the university was required to comply with the judgement of the Swedish court, it would not be doing so in this instance. The reason he gave was that doing so would cause mental stress to Gillberg and colleagues.
The question about access to the research material went to court several times, each time with the court ruling that some access should be allowed. On 4 May 2004, the Swedish court ruled for the fifth and final time that the research material had to be made available to Elinder and Kärfve.
The following weekend, three of Gillberg's coworkers, one of whom was his wife, deliberately destroyed almost all of the material. They argued that to obey the court order to make the material available would violate the promises of confidentiality that had been made to the study's participants. Gillberg claimed in an interview with the British Medical Journal that he was “completely unaware” of the destruction until after it was over.
In June 2005, Gillberg and the rector of Gothenburg University, Svedberg, were convicted (by a criminal court) for not making the data available to Kärfve and Elinder. Gillberg received a suspended sentence and a fine; Svedberg received a fine. Gillberg appealed his conviction up to the Supreme Court, and had his last appeal rejected in April 2006. Separately, the three coworkers were convicted for destroying the data. Each of the three received a suspended sentence and a fine.
The rector resigned his position at the university. Gillberg and his colleagues, though, continue with their work. In November 2006, Gillberg was awarded a substantial research grant by the Swedish Research Council. Gillberg also continues his research and his clinical practice in Britain (at the University of Strathclyde and the National Centre for Young People with Epilepsy).
The Swedish Parliamentary Ombudsman published its English Summary for the fiscal year ending June 2006. The Summary is 26 pages long; 18 pages are about the Gillberg case. It is very critical of both Gillberg and Gothenburg University.
The Swedish government decreed a new regulation for the handling of research misconduct allegations. The decree states, “A university that, by a petition from someone or in any other way, receives information about possible scientific misconduct in research, artistic reseach, or any other research at the university, will investigate the allegations”.
The whole affair has been the topic of much discussion in the media in Sweden, where it is known as the “Gillberg affair”. To date, there has been little media coverage outside Sweden, with the exception of Norway.
In Norway, the newspaper Dagsavisen ran a series of stories about the Gillberg affair. This led to a loss of confidence in Gillberg, who was head advisor of the Children in Bergen project (a project involving close to 10 000 children). Consequently, in February 2006, Gillberg resigned his position there.
In 2005, Per-Anders Rydelius, Professor of Child Psychiatry at the Karolinska Institute, and Rolf Zetterström, past chief editor of Acta Paediatrica, published a report on the Gothenburg study. The report pointed out that the Gillberg group, in order to prove their hypothesis, repeatedly changed diagnoses and information in their material: “Accessible articles [from the Gillberg group] reveal that those studied have been managed in an unscientific way, a conclusion that does not need strengthening by what could have been found in the destroyed research material”. (Another problem is the boy:girl ratios in the study; the ratio in the control group is 1:1, whereas the ratio in the index groups is 4:1.)
|•||Petitions to the Ethics Committee|
|•||Review of the Swedish Research Council investigation|
|•||Summary of the allegations|
|•||Timeline for the Gillberg affair|
|•||Scientific Misconduct blog on the Gillberg affair|
the foregoing text is a working draft; the text is valid, but there is more evidence.
Bagge P. (5 July 2005), “Forskarstrid: DAMP ifrågasätts från fler än ett håll”, Sveriges Television. [Summary of televised show, including quotes from Lundgren. In Swedish.]
Blomqvist G. (2006), “Regeringen och rättssäkerheten” (Sveriges Universitets Lärarförbund). [A notice from the Swedish Universities' Teachers Association that tells about the new regulation (HF Chap. 1 §16) for handling allegations of research misconduct. In Swedish; English translation of the regulaton quoted above.]
Ekman S., Gillberg C. (20 March 1997), “Skolan knäcker 120 000 barn”, Dagens Nyheter, p.A4–A5. [The newspaper article that first brought to public prominence Gillberg's claim that large numbers of Swedish children have DAMP or similar neuropsychiatric conditions; co-authored with a Stockholm school doctor. In Swedish; English translation available here. See also Gillberg (1996: p.33).]
Elinder L. (1997), “Friska sjukförklarsas i diagnostiskt samhälle”, Läkartidningen [Journal of the Swedish Medical Association], 40: 3391–3393. [Elinder has published several articles that are critical of Gillberg's work without regarding the alleged fraud; this is one of the earliest, written in reply to the article by Ekman & Gillberg. In Swedish; English translation available here.]
Fladberg K.L. (28 February 2006), “Gillberg sier opp etter tillitsbrudd”, Dagsavisen. [This tells of Gillberg's resignation from the Children in Bergen Project. In Norwegian; English translation available here.]
Gallup R., Miller C.G., Elinder L.R., Brante T., Kärfve E., Josephson S. (July 2005), “Rapid Responses”, British Medical Journal.
Gillberg C. (1996), Ett Barn I Varje Klass: om ADHD och DAMP (Stockholm: Cura). [Page 33 says “A cautious conclusion is that DAMP and ADHD together affect about one child out of ten …”. In Swedish. See too Ekman & Gillberg (1997).]
Gillberg C. (2003), “Deficits in attention, motor control, and perception: a brief review”, Archives of Disease in Childhood, 88: 904–910. doi: 10.1136/adc.88.10.904.
Kärfve E. (2000), Hjärnspöken—DAMP och hotet mor folkhälsan [Idle Imaginings—DAMP and the threat to public health] (Stockholm: Brutus Östlings Bokförlag Symposion). [Kärfve published this book before the article of Rasmussen & Gillberg appeared; the book does not allege fraud, but is very critical of DAMP. In Swedish.]
Lundgren O., Strandvik B., Tännsjö T., Westerhäll L. (13 April 2005), “Vi prövade aldrig om Gillberg hade fuskat”, Dagens Medicin. [An important statement by the members of the Ethics Committee, this contains the quotations herein, etc. In Swedish; English translation available here.]
McDonagh M.S., Peterson K. (2006), Drug Class Review on Pharmacologic Treatment for ADHD (Oregon Health & Science University). [A thorough review of the scientific literature on drugs for ADHD; this concludes that “Good quality evidence on the use of drugs to affect outcomes relating to global academic performance, consequences of risky behaviors, social achievements, etc. is lacking”. Available from here.]
Nicklason L. (19 January 2005), “Gillbergaffären: Därför har den inte granskats ordentligt”, Göteborgs-Posten. [This was written by a former journalist at Gothenburg University; it gives several insights into the Gillberg affair. In Swedish; English translation available here.]
Rasmussen P., Gillberg C. (2000), “Natural outcome of ADHD with developmental coordination disorder at age 22 years”, Journal of the American Academy of Child & Adolescent Psychiatry, 39: 1424–1431. [This is the article that first made Elinder and Kärfve suspect that the Gothenburg study was fraudulent.]
Rydelius P.-A. (2000), “DAMP and MBD versus AD/HD and hyperkinetic disorders”, Acta Pædiatrica, 89: 266–268. doi: 10.1080/080352500750028375. [Includes a technical description of methods used in the Gothenburg study, numbers of children, etc.]
Rydelius P.-A., Zetterström R. (25 May 2005), “Allt för svagt underlag i Gillbergs studie för att dra några slutsatser”, Dagens Medicin. [In Swedish.]
Samuelsson M. (19 June 2003), “Föräldrar manas skriva på Gillbergs protestbrev”, Dagens Forskning No.12. [Describes how the study participants were sent letters against an investigation. In Swedish; English translation available here.]
Snaprud P. (25 March 2003), “Svensk forskare friad från fuskanklagelse”, Dagens Nyheter. [An example of an article incorrectly claiming that the Chairman of the Ethics Committee investigated for fraud and did not find any; in Sweden's most-respected newspaper. In Swedish.]
Swedish Parliamentary Ombudsman (2006), Report for the period 1 July 2005 to 30 June 2006—Summary. [This important report includes extended extracts from court decisions and from letters by Svedberg. This is the official English translation; account of the Gillberg affair is on pages 614–631.]
Swedish Research Council (November 2006), Autism spectrum conditions: the Gothenburg collaborative studies. [Describes the funding for a research project headed by Gillberg. In Swedish.]
White C. (10 July 2004), “Destruction of data prompts calls for Swedish agency to investigate research misconduct”, British Medical Journal, 329: 72. doi: 10.1136/bmj.329.7457.72. [This includes the quote from Gillberg denying any foreknowledge of the destruction of data.]
White C. (23 July 2005), “Swedish court rules against doctor at centre of row over destroyed research data”, British Medical Journal, 331: 180. doi: 10.1136/bmj.331.7510.180-f. [Describes the first criminal court ruling against Gillberg.]