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Destruction of data prompts calls for Swedish agency to investigate research misconduct

BMJ 2004; 329 doi: http://dx.doi.org/10.1136/bmj.329.7457.72 (Published 08 July 2004) Cite this as: BMJ 2004;329:72
  1. Caroline White
  1. London

    Leading academics are pressing the Swedish government to set up an independent agency to investigate issues relating to scientific research misconduct after a long running dispute resulted in the destruction of years of patient data.

    The man at the centre of the dispute is Christopher Gillberg, professor of child and adolescent psychiatry at the University of Gothenburg, Sweden, and St George's Hospital, London, and a world expert on attention-deficit/hyperactivity disorder (ADHD) and autism.

    In May, years of data relating to Professor Gillberg's research were destroyed by two of his collaborators, associate professors Carina Gillberg and Peder Rasmussen, and university administrator Kerstin Lamberg, in a bid to protect patient confidentiality.

    Vice chancellor of Gothenburg University Professor Gunnar Svedberg says that he received a letter the following day from the three, explaining what they had done, and why. But it is illegal in Sweden to destroy archived material collected with public monies, and the university has commenced legal action against them.

    The destruction of the data followed a court order given to Eva Kärfve, associate professor of sociology at the University of Lund, granting her access to Professor Gillberg's research files.

    She claims to have found various numerical “inconsistencies” in his long term, published research.

    Gothenburg University rejected her claims. A subsequent investigation by the regional ethics committee did the same. But Professor Kärfve sought legal redress so that she could see for herself. “Gillberg's work [on ADHD-DAMP (deficits in attention, motor control, and perception)] has had an enormous impact on Swedish social policy,” she said.

    In emails to the BMJ Professor Gillberg stated that Professor Kärfve was one of four people who had “made false allegations against me for years, allegations that have been refuted by all relevant authorities after extensive investigations.”

    The “inconsistencies” were “non-existent,” he wrote, adding that members of the church of Scientology had been running a lengthy campaign to discredit his research. Professor Kärfve's views reflected those espoused by certain Scientologists, he said.

    Professor Kärfve admitted attending a Scientology meeting on ADHD in Munich, but for research purposes only, she says. She denies any involvement in the group.

    Elias Eriksson, professor of pharmacology at Gothenburg University, said the destroyed files contained “very, very sensitive information.” Many study participants begged for it to be kept confidential, and “hundreds of medical researchers” believed that to hand it over “would violate the entire ethical basis for medical research in Sweden.”

    Both Professor Svedberg and Professor Gillberg told the BMJ that they did not know that the data were going to be destroyed.

    Professor Gillberg wrote: “I was completely unaware of the process… I am, of course, devastated by the fact that the data had to be destroyed.”

    Professor Svedberg contends that the safeguards for patient confidentiality “collided” with the legal requirement for total transparency in publicly funded activities. “Medical scientists say this is very dangerous for medicine,” he said, adding that the university had now turned to national educational and research bodies for help.

    The deputy director general of the Swedish Research Council, Professor Madeleine Leijonhufvud, said that “the idea of a scientist having to destroy data is very bad, and we have to do something about it.” But she was optimistic that the council's appeal to the government to establish an independent agency on scientific misconduct would be accepted.