Gillberg v. Sweden: conviction of professor for refusal to grant access to sensitive research data not in breach of ECHR

This guest post on freedom of expression, academic research, privacy protection and access to official documents has been written by Professor Dirk Voorhoof. Professor Voorhoof is affiliated to both Ghent University (Belgium) and Copenhagen University (Denmark). He is also a Member of the Flemish Regulator for the Media. Further information on Professor Voorhoof can be found on his personal webpage here.

For further information on the topic of the post, see the website of the International Conference “Privacy and Scientific Research: from Obstruction to Construction”, taking place tomorrow, 23 November 2010 in Brussels, Belgium.

The European Court of Human Rights has delivered a judgment in an interesting case with a peculiar mix of issues related to freedom of expression, academic research, medical data, privacy protection and access to official documents. The defendant state is Sweden, a country very familiar with the principle and practice of access to official documents. The right of access to official documents has a history of more than two hundred years in Sweden and is considered one of the cornerstones of Swedish democracy. The case shows how access to official documents, included research documents containing sensitive personal data, can be granted to other researchers, albeit under strict conditions. The case furthermore demonstrates that Sweden applies effective procedures to implement orders granting access to official documents : those who refuse to open access to official documents after a court decision has ordered to do so can be convicted on the basis of criminal law. The case clearly reflects the idea that progress in scientific knowledge would be hindered unduly if the research methodology or scientific data analysis and the conclusions build on the data were not open to scrutiny, discussion and debate, albeit under strict conditions of privacy protection regarding medical data.

In this case, a Swedish professor at the University of Gothenburg (Sweden), Mr. Gillberg, has been responsible for a long-term research project on hyperactivity and attention-deficit disorders in children. Certain assurances were made to the children’s parents and later to the young people themselves concerning the confidentiality of the collected data. According to Mr. Gillberg, the university’s ethics committee had made it a precondition for the project that sensitive information about the participants would be accessible only to him and his staff, and he had therefore promised absolute confidentiality to the patients and their parents. The research papers, called the Gothenburg study, were voluminous and consisted of a large number of records, test results, interview replies, questionnaires and video and audio tapes. It contained a very large amount of privacy-sensitive data about the children and their relatives.

Some years later, two other researchers not connected to the University of Gothenburg requested access to the research material. One had no interest in the personal data as such but in the method used and the evidence the researchers had for their conclusions, the other wanted access to the material to keep up with current research. Both requests were refused by the University of Gothenburg, but the two researchers appealed against the decisions. The Administrative Court of Appeal found that the researchers should be granted access to the material, as they had shown a legitimate interest and could be assumed to be well acquainted with the handling of confidential data. It was also considered important to the neuropsychiatric debate that the material in question could be exposed to independent and critical examination. A list of conditions was set for each of the two researchers, which included restrictions on the use of the material and the prohibition to remove copies from the university premises. Notified by the university’s vice-chancellor that the two researchers were entitled to access by virtue of the judgments, first Mr. Gillberg and later the university refused to give access to the researchers. The university decisions were annulled however by two judgments of the Administrative Court of Appeal. A few days later, the research material was destroyed by a few colleagues of Mr. Gillberg.

The Swedish Parliamentary Ombudsman brought criminal proceedings against Mr. Gillberg, and short time later he was convicted of misuse of office. Mr. Gillberg was given a suspended sentence and a fine of the equivalent of 4,000 euros. The university’s vice president and the officials who had destroyed the research material were also convicted. Mr. Gillberg’s conviction was upheld by the Court of Appeal and leave to appeal to the Supreme Court was refused. Short time later Mr. Gillberg lodged an application with the Strasbourg Court of Human Rights. He complained in particular that his criminal conviction breached his rights under Articles 8 and 10, because his promise of confidentiality to the participants in the research was allegedly imposed on him by the university’s ethics committee, as a precondition for carrying out his research. While on the face of it the case raised important ethical issues involving the interest of the children participating in the research, medical research in general and public access to information, the Court considered itself only being in a position to examine whether Mr. Gillberg’s criminal conviction for refusing to execute a court order granting access to official documents was compatible with the Convention.

The European Court left it open whether there had been an interference with Mr. Gillberg’s right to respect for his private life for the purpose of Article 8, because even assuming that there had been such an interference, it found that there had been no violation of that provision. According to the Court Convention States had to ensure in their domestic legal systems that a final binding judicial decision did not remain inoperative to the detriment of one party; the execution of a judgment was an integral part of a trial. The Swedish State therefore had to react to Mr. Gillberg’s refusal to execute the judgments granting the two external researchers access to the material. The Court noted Mr. Gillberg’s argument that the conviction and sentence were disproportionate to the aim of ensuring the protection of the rights and freedoms of others, because the university’s ethics committee had required an absolute promise of confidentiality as a precondition for carrying out his research. However, the two permits by the committee he had submitted to the Court did not constitute evidence of such a requirement. The Swedish courts had moreover found that the assurances of confidentiality given to the participants in the study went further than permitted by the Secrecy Act. As regards Mr. Gillberg’s argument that the Swedish courts should have taken into account as a mitigating circumstance the fact that he had attempted to protect the privacy and integrity of the participants in the research, the European Court agreed with the Swedish criminal courts that the question of whether the documents were to be released had been settled in the civil proceedings. Whether or not the university considered that they were based on erroneous or insufficient grounds had no significance for the validity of the administrative court’s judgments. It had thus been incumbent on the university administration to release the documents and Mr. Gillberg had intentionally failed to comply with his obligations as a public official arising from the judgments. The Court therefore did not find that his conviction or sentence was arbitrary or disproportionate to the legitimate aims pursued. It concluded, by five votes to two, that there had been no violation of Article 8 of the Convention.

With regard to the alleged violation of the right to freedom of expression under Article 10 of the Convention, Mr. Gillberg invoked his “negative right” to remain silent. The Court accepted that some professional groups indeed might have a legitimate interest in protecting professional secrecy as regards clients or sources and it even observed that doctors, psychiatrists and researchers may have a similar interest to that of journalists in protecting their sources. However, Mr. Gillberg had been convicted for misuse of office for refusing to make documents available in accordance with the instructions he received from the university administration after a Court decision; he was thus part of the university that had to comply with the judgments of the administrative courts. Moreover, his conviction did not as such concern the university’s or his own interest in protecting professional secrecy with clients or the participants in the research. The Court unanimously concluded that there had been no violation of Article 10 of the Convention.

The judgment of the European Court is certainly an eye-opener for many actors in countries of the Council of Europe working in the domain of access to official or administrative documents, academic research, the processing of sensitive personal data and data protection authorities. The judgment indeed demonstrates the applicability of access to information laws on research material held by universities which can be considered as institutions with a public service task. The outcome of the case gives evidence to the fact that the assessment of a request for access to research material containing sensitive medical data cannot solely be based on the consensual agreements between the researchers and the data subjects or on the basis of data protection regulation. In handling a request in terms of granting or refusing access to the documents requested for application is also to be made of the provisions of access to official or administrative documents guaranteed under national law, constitutional law and Article 10 of the European Convention of Human Rights. Indeed according to recent case law of the European Court of Human Rights Article 10 of the European Convention is considered to include the right of access to documents held by authorities or public institutions (see also ECtHR 14 April 2009, Társaság a Szabadságjogokért v. Hungary, Application no. 37374/05 and ECtHR 26 May 2009, Kenedi v. Hungary, Application no. 31475/05). The jurisprudence of the Swedish Courts and of the European Court of Human Rights demonstrates that confidentiality of data used for scientific research and protection of sensitive personal data must be balanced with the interests and guarantees related to transparency and access to documents of interest for the research society or society as a whole. The concurring opinion of judge Ann Power which is annexed to the judgment in the case of Gillberg v. Sweden elaborates the importance of this approach by emphasizing that “the public has an obvious interest in the findings and implications of research. Progress in scientific knowledge would be hampered unduly if the methods and evidence used in research were not open to scrutiny, discussion and debate. Thus, the requests for access, in my view, represented important matters of public interest”, without however disregarding the principles and values of protection of personal data. The European Court’s judgment implies the approval of the approach by the Swedish authorities having balanced these interests, with the outcome of giving access to sensitive data of a research project.

5 thoughts on “Gillberg v. Sweden: conviction of professor for refusal to grant access to sensitive research data not in breach of ECHR

  1. All scientific results must, if not just for the sake of confidence in science, be open to an independent scientific review. If not, scientists could come up with any results they like. Objective scrutiny by an impartial party is one of the most basic foundations in all science.

    What complicated this case, though, was that the diagnosis being researched (DAMP = Deficits in Attention, Motor control and Perception) is not generally accepted and the two persons who wanted accesss to the reusults had their own agenda (is DAMP genetic or a condition mainly depending on the social circumstances).

    Hans L

  2. In an instance of the safety of a person(s) health, not only do the immediate individuals(family) have the right to privacy and the right to have ‘research’ exposed to the public, if the suspicion of malpractice/fraud exist, but to punish(fine) the person(s) responsible for the malpractice, is inevitable/feasable.

    With that, I agree, that the European Courts, were within ‘reason’ to deny Mr. Gilbert the opportunity to mass the corruption he expressed by NOT handing over the documents that he was ordered BY THE COURTS to adhere to.

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