FIFTH SECTION

Application no. 32384/11 B.N. and O.N. against Sweden lodged on 19 May 2011

STATEMENT OF FACTS

The applicants, B.N. and O.N., are Swedish nationals born in 1960 and 1961, respectively, and they live in Stockholm.

A. The circumstances of the case

The facts of the case, as submitted by the applicants, may be summarised as follows.

In October 2007, the first applicant gave birth to a son, X, after having received an egg donation abroad. In connection with the birth, X fell ill and needed surgery and the applicants then informed the medical staff that the egg donation had taken place. This information was entered in X ’ s medical record.

In February 2008, the applicants requested the National Board of Health and Welfare ( Socialstyrelsen ) to remove the information about the egg donation from X ’ s medical record, claiming that it was not medically justified to keep the information and that it never should have been noted in the record in the first place.

The Board requested the hospital where X had been born to present X ’ s medical record which it did. Moreover, the Head of Division of Surgery at the hospital submitted his observations on the matter, dated 18 February 2008, in which he considered that there was no reason to keep the parts highlighted in the record which referred to the egg donation (“born after egg donation”, recorded on 24 October 2007, “pregnant after egg donation”, recorded on 31 October 2007, as well as a specific highlighted section in the record).

On 7 April 2008, the Board found that the applicants had given acceptable reasons for their application and that the information clearly was not needed for X ’ s continued medical treatment. However, it considered that there were general reasons for the information to remain in the medical record. In this respect, the Board observed that if the egg donation had taken place in Sweden it would, according to the Genetic Integrity Act ( lagen om genetisk integritet , 2006:351), have been documented in a special medical record ( särskild journal ), with information about the donor, in order to enable the child to obtain information about his or her genetic origin. Since in the present case, the donation had taken place in another country, the above-mentioned Swedish legislation was not applicable and the information did not appear in a special medical record. For that reason, and since the Board found that this was important information which concerned the child, both medically and genetically, the information should be preserved in X ’ s medical record.

The applicants appealed to the County Administrative Court ( länsrätten ) in Stockholm, maintaining their claim and adding that the reasoning of the Board had been erroneous and contradictory since the Board, on the one hand, correctly had noted that their specific case was not covered by Swedish law while, on the other hand, had continued by concluding that if the egg donation had been carried out in Sweden, it would have been covered by Swedish law. In addition, the case had not concerned a special medical record, but X ’ s general medical record. The different types of records could by no means be considered equivalent since the access to the records differed considerably. In their case, a special medical record had not been issued and the information in X ’ s general medical record would not have been recorded in the first place, if X had not needed the surgery. Further, several specialist physicians, unanimously, had found that the information recorded lacked relevance in relation to the further medical treatment of X and therefore could be deleted. Despite this, the Board had found that the information was of medical significance, and, thus, should remain in the record. Lastly, in their view, it was unclear what genetic significance the information could ever have.

On 23 April 2009, the County Administrative Court upheld the Board ’ s decision and, with reference to Chapter 8, Section 4, third paragraph of the Patient Data Act ( patientdatalagen , 2008:355), found that from a general viewpoint there was obviously no reason not to keep the information in the record.

The applicants made a further appeal to the Administrative Court of Appeal ( kammarrätten ) in Stockholm, maintaining their claims.

On 20 July 2009, the appellate court granted leave to appeal and, on 13 April 2010, it rejected the appeal. The court reiterated the travaux preparatoires of the Patient Data Act (Government Bill 2007/08:126 p. 100), which stated that it was possible to consider various public interests that concerned a medical record, i.e. transparency, research and the economy of public health care. It then found that, from a general viewpoint, there was obviously no reason not to keep the information in the record.

The applicants appealed to the Supreme Administrative Court ( Högsta förvaltningsdomstolen ) which, on 7 December 2010, refused leave to appeal.

B. Relevant domestic law

According to Chapter 8, Section 4 of the Patient Data Act, as in force at the time, the National Board of Health and Welfare could, upon a request from a patient or another person mentioned in a medical record, decide that a record should be partly or entirely destroyed under the conditions that:

1. acceptable grounds were invoked;

2. it was obvious that the record, or part of the record covered by the patient ’ s request, was not needed for the purpose of the patient ’ s care; and

3. from a general viewpoint, there was obviously no reason to keep the record.

COMPLAINTS

The applicants complain under Article 8 of the Convention that the right to respect for their family life has been violated by the national authorities ’ decision. They further invoke Article 14, in conjunction with Article 8, arguing that X has been discriminated against by the refusal to delete the information from his medical record and by not transferring the information to a special medical record.

QUESTIONS TO THE PARTIES

1. Has there been a violation of the applicants ’ right to respect for their family life, contrary to Article 8 of the Convention, through the national authorities ’ decision not to delete the information, in X ’ s medical record, concerning the egg donation conducted abroad?

2. Does there exist, in Sweden, a legal basis for processing data relating to egg donations carried out abroad?

3. How is data in a general medical record protected under the Public Access to Information and Secrecy Act and the Patient Data Act, as compared to data in a special medical record, in particular in relation to medical staff and to the public? If there is wider access to a general medical record, does this difference amount to a violation of Article 14 of the Convention, taken in conjunction with Article 8 of the Convention?