Swedish doctor prosecuted for refusal to hand over patient data

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Tuesday, January 18, 2005

Stockholm — A well-known Swedish doctor and researcher at Gothenburg University has been prosecuted, together with the Vice-Chancellor and the President of the University Council, for failing to hand over sensitive data on patients to outside critics.

The Parliamentary Ombudsman, an official appointed by the Parliament, decided to press charges against Professor Christopher Gillberg, MD, Professor Gunnar Svedberg, (Vice-Chancellor) and Arne Wittlöv (President), for failing to comply with a court order from February 2003.

The court had ordered Gillberg and his colleagues to hand over sensitive data on patients and their relatives to two critics of their research: Eva Kärfve, a sociologist, and Leif Elinder, a pediatrician. The basis for the court's decision was the section of the Swedish constitution relating to freedom of the press. Since the university was a public body, it was obliged to turn over any documents to any citizen upon request unless the document was protected by a specific paragraph in the Secrecy Law.

The university argued that the material should be protected by a paragraph referring to the confidentiality of information about patients. The courts decided, however, that they could hand over the data (about 70 shelf feet of documents) if they specified a proviso that would preserve confidentiality. The university was thus ordered to first write a proviso (set of conditions) for Kärfve and Elinder and then hand over the data.

Gillberg and the other members of the research group refused to comply. They referred to the promise they had given to the participants in their studies that all the data would be kept completely confidential. They also argued that the data was particularly sensitive since the research concerned psychological and psychiatric disorders among children, and that it was impossible to anonymize the data beyond possible identification. When they had pursued all legal avenues without success, someone apparently destroyed the documents in May 2004.

The Gillberg group received considerable support from other medical researchers and from their university. They felt that important clinical research could be jeopardized unless complete confidentiality could be promised to the patients.

Eva Kärfve stated that she was happy with the prosecution and that it would "strengthen the protection of research in Sweden."