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Gillberg's Gothenburg study

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Gillberg's Gothenburg study is a DAMP-related investigation of 141 Swedish people, beginning when they were six years old, and lasting until their adulthood. It has been extremely controversial. The principal investigator of the study is the psychiatrist Christopher Gillberg.

The study

In the Gothenburg study, a questionnaire for preschool teachers was used from which children with some potential psychiatric problems were classified into either a high-index or a low-index group. In the final investigation, there were 22 children (14 boys and 8 girls) in the high-index group and 60 children (52 boys and 8 girls) in the low-index group. These were compared with a randomly-selected control group. The control group ultimately consisted of 59 children (29 boys and 30 girls). Of the total of 141 children, 42 (33 boys and 9 girls) were diagnosed as having MBD/DAMP; of the 42, 40 were in the index group (18 in the high-index group) and 2 in the control group. All the children were initially age 6–7 (born 1971) and were from Gothenburg, Sweden. The children were later investigated at ages about 10, 13, 16, and 22.

Gillberg's research concluded that roughly ten percent of all children have either DAMP or other neurological problems.

Allegations and destruction

Eva Kärfve, a sociologist at the University of Lund, and Leif Elinder, a Swedish pediatrician, alleged that Gillberg had forged much of his data in the Gothenburg study. They submitted complaints to the Ethics Committee at the University of Gothenburg. On the basis of their submissions and the responses from the Gillberg group, the Committee voted on whether or not to refer the matter to the Swedish Research Council for investigation. The vote was 3–1 against.

Kärfve and Elinder (as private persons) then demanded access to the research material behind the Gothenburg study, so as to investigate by themselves. They were denied this, on the grounds of patient confidentiality. They asked for the data to be anonymized (i.e. obfuscated so that individuals cannot be identified: this is a standard practice), but were told that this could not be done. They then took the matter to civil court, where it was decided that they would be allowed to access some of the research material.

Gillberg refused to respect the court's decision. Instead, the Gillberg group informally asked Ove Lundgren, the Chairman of the Ethics Committee (and a Professor Emeritus of Physiology at the university), to look at the research material as a private person (i.e. not representing the Committee). There was 22 meters (about 100.000 pages) of material. Lundgren was given four hours to scrutinize all this; he found nothing obviously wrong. Gillberg and the president of the faculty of health sciences (Sahlgrenska Academy) at the university then told the media that Gillberg had been exonerated of scientific fraud by the Ethics Committee. The Ethics Committee responded to that by publishing a letter stating explicitly that the Committee "never exonerated Gillberg from the allegations" and that "the question about scientific fraud never has been investigated". Lundgren later said on Swedish TV that he thought he had been used/exploited by Gillberg.

In May 2004, three of Gillberg's coworkers deliberately destroyed most of the research material, claiming that to obey the court order would violate the promises of confidentiality that had been made to the study's subjects. In June 2005, Gillberg and the rector of Gothenburg University were convicted for not handing the material over to Kärfve and Elinder. Gillberg received a suspended sentence and a fine; the rector received a fine. In March 2006, the three coworkers were convicted for destroying the data. Each of the three received a suspended sentence and a fine: Peder Rasmussen, Carina Gillberg (wife of Christopher Gillberg), and Kerstin Lamberg.

After the destruction of most of the research material, further attempts at formal investigation into potential misconduct became essentially impossible.

Other criticisms

In 2005, Per-Anders Rydelius, Professor of Child Psychiatry at the Karolinska Institute, and Rolf Zetterstrom, past chief editor of Acta Paediatrica, published a somewhat-investigative report on the Gothenburg study in the Swedish journal Dagens Medicin. 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 which 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.)

Reactions

The major Swedish newspapers have had tens of stories on the controversy: Dagens Nyheter, Svenska Dagbladet,, Göteborgs-Posten, etc. There was also a one-hour program about DAMP on Swedish TV that discussed the controversy over Gillberg's Gothenburg study at length.

The Autism Society and the Attention (Patients) Society (Riksförbundet Attention) have remained strong supporters of Gillberg. (The vice-chairman of the Autism (Patients) Society (Riksföreningen Autism is Kerstin Lamberg).)

In Norway, the newspaper Dagsavisen ran a series of critical stories.<ref>Dagsavisen stories


Notes

  1. ^ Rydelius, 2000
  2. Gillberg, 2003, p.906
  3. Gillberg & Ekman, 1997
  4. ^ Lundgren et al., 2005
  5. ^ Gallup et al., 2004
  6. ^ White, 2005
  7. ^ Edwards, p.52
  8. ^ Wärngård, 17 March 2006
  9. Nicklason, 2005
  10. White, 2004
  11. Snaprud, 2003
  12. ^ Bagge, 2005
  13. Rydelius & Zetterström, 25 May 2005
  14. Edwards, p.52
  15. Dagens Nyheter stories
  16. Svenska Dagbladet stories
  17. Göteborgs-Posten stories
  18. Riksföreningen Autism, 2006
  19. Riksförbundet Attention, 2005
  20. Edwards, p.53

References

External links

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