JOINT DISSENTING OPINION OF JUDGE S GYULUMYAN AND ZIEMELE

1. We do not share the view of the majority that the criminal conviction of the applicant was a proportionate measure and that his rights under Article 8 were therefore not violated.

2. First of all, we would point out that the reasons for the destruction of the research material by the applicant ’ s research team (see paragraph 31) concerned the best interests of the children and the protection of the families involved in this research at the University of Gothenburg . The researchers had promised confidentiality of the information collected about the individuals concerned. There is no question that the promise of confidentiality is essential for the purposes of medical, social and behavioural studies. It is only with this guarantee that researchers can expect research subjects to submit the most accurate data. In other words, if science is to make progress in areas that are important for human beings, the confidentiality and protection of research data is of key importance. Admittedly, the protection of research data for the advancement of science is another legitimate aim to be protected. However, the two aims are closely linked: the first sets the limits on the second. It has been repeatedly emphasised within the framework of professional debate and the World Health Organization in particular that “Advancement of medical knowledge depends, to a large extent, on expansion of research involving experimentation on human subjects. [However] it is not acceptable that the respect of the individuals be compromised in the pursuit of benefits that may accrue to science and society. ... The principle of respect implies that participation in the research should be completely voluntary and based on informed consent. Where research involves collection of data on individuals, privacy should be protected by ensuring confidentiality” (see http://whqlibdoc.who.int/emro/2004/9290213639_chap2.pdf visited on 18 October 2010).

3. Article 8 of the Convention in this case not only refers to the protection of the privacy of third persons, it also refers to the notion of privacy which covers the applicant ’ s work as a researcher in a sensitive medical sphere and his authority as a professional medical researcher. Therefore, the arguments advanced by the applicant in the criminal proceedings – namely, that his behaviour had been dictated by both medical and research ethics and the Convention – ought to have been examined in much more detail then the court actually did (paragraph 33). Likewise, the arguments advanced by the applicant to the effect that the promise of confidentiality given to the children and their families and the importance of upholding the value of confidentiality for the future of research in Sweden, which form the core of the professional debate on how to carry out medical research in compliance with human rights (see World Medical Association Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Subjects, as last amended in October 2008), were dismissed in two short paragraphs by the Court of Appeal.

4. We note that the Helsinki Declaration addresses the question of publication of the results of research. It provides that “Authors, editors and publishers all have ethical obligations with regard to the publication of the results of research. Authors have a duty to make publicly available the results of their research on human subjects and are accountable for the completeness and accuracy of their reports. They should adhere to accepted guidelines for ethical reporting. Negative and inconclusive as well as positive results should be published or otherwise made publicly available. Sources of funding, institutional affiliations and conflicts of interest should be declared in the publication. Reports of research not in accordance with the principles of this Declaration should not be accepted for publication.” The approach in the field of medical research is not to maintain secrecy. On the contrary, it is recognised that public debate about research results is important for quality, transparency and various other reasons. There is a duty to make public the results of research irrespective of whether the outcome has been positive or negative. However, this has to be balanced against the principle of confidentiality as it applies to research subjects (see point 2 above). The question arises whether the system, as developed in Sweden over a long period of implementing the principle of public access to official documents (see paragraphs 35-41) is adapted to the modern challenges of medical research and the right of privacy in its various forms in this context. The main aspects of this issue had to be debated within the framework of administrative proceedings which fall outside the Court ’ s competence. It is, in our view, misleading, however, to think that these questions are irrelevant in criminal proceedings (see point 3 above).

5. It is true that the values of science may clash with the values of law, as in the case before us. The national courts and the European Court of Human Rights should bear this in mind and accordingly be prepared to balance all the arguments. In our view, the Swedish courts, in adjudicating the criminal charges against the applicant, were too formalistic and, in a sense, self-righteous. Of course, the State has every right and obligation to see to it that order is maintained and that court judgments are complied with. We agree that the State had to make sure that the applicant complied with the judgment of the Administrative Court of Appeal, even if we have a number of questions regarding this judgment (see point 4 above). However, in the criminal proceedings the national courts should have had regard to the major chilling effect that an imposition of a criminal sentence on a researcher and the subsequent criminal record will have. A criminal sentence is clearly disproportionate in view of the important interests involved, even if balanced against the fundamental principle of access to information as regulated in Sweden . Surely, the State would want to promote medical science both in the interests of the population and also for reasons of competition and economic development. Surely, Sweden would want to be among those States which promote medical research in compliance with the human rights of those individuals who agree to participate in such research and with respect for the researchers. It is therefore desirable that a more nuanced approach to the principle governing access to information be called for today.

6. It may very well be that the applicant was liable to disciplinary punishment for his behaviour, but criminal responsibility for protecting at least equally important public and State interests seems to be an exaggerated reaction. It is relevant in this respect to note that there was an ongoing expert debate at the University concerned about the release of the documents ordered by the administrative courts. A Swedish Research Council report attested that there was no connection between the research carried out by one of the people requesting access to the applicant ’ s research data and the former ’ s research project as specified before the Administrative Court, and the University decided that this person should not have access; there is also no evidence that any disciplinary proceedings were brought between the beginning of 2004 and the start of criminal proceedings in 2005 (see paragraphs 28 and 32).

7. We consider that the protection of the right to privacy in the context of medical research is a complex matter and that the courts of law should try not to overlook all the interests at stake. Against this big picture, the line taken against the applicant in domestic criminal proceedings was clearly inadequate and the result disproportionate.

[1] Cited in the Court of Appeal’s Judgment, 8 February 2006.

[2] See summary of the administrative proceedings as set out in the Judgment of the Court of Appeal dated 8 February, 2006 as translated and referred to in Appendix I of the State’s submissions dated 14 October, 2008.

[3] The applicant contends, however, that the records were to be shared “in fully identifiable form” (paragraph 53 of his submissions dated 12 January, 2009). One could reasonably argue that constitutional and natural justice would require that the persons to whom the information in the records related ought to have been put on notice of the application for disclosure thereof.  One might also argue that fair procedures would require that before making such orders the person or persons likely to have been affected thereby ought to have been given notice by the Court of its intention to make such an order, and ought to have been afforded the opportunity of making representations in this regard.  That said, however, even where a subject’s consent to disclosure is withheld, a Court may nevertheless be justified in dispensing with it if, having regard to other important interests, the demands of justice so require.  It would appear that some of the persons whose records were the subject of the disclosure sought in this case did, in fact, apply to the Supreme Administrative Court for relief for substantive defects but that their applications were refused.  Problematic as this aspect of the background to the case may be, these persons have not raised complaints before this Court.

[4] This general rule may be subject to exceptions, namely, that disclosure may be permitted in circumstances where it is necessary to protect the interests of the patient and/or the welfare of society and/or the welfare of another individual.

[5] See paragraph 4 of the applicant’s submissions dated 12 January, 2009.

[6] For the approach of the Canadian Supreme Court see R. v Stinchcombe [1991] 3 SCR 326; R. v O’Connor [1995] 4 SCR 411; and R. v Beharriell [1995] 4 SCR 536.  See also, the Decision of the U.S. Supreme Court in Jaffee , Special Administrator for Allen, Deceased -v- Redmond et al (Decision of 13 June 1996) where that Court considered whether it was appropriate for federal courts to recognise the existence of “psychotherapist privilege” and whether statements made to a therapist were protected from compelled disclosure in a federal civil action.  See also the Judgment of the British House of Lords in D. v N.S.P.C.C. [1978] AC 171.