Public Commerce With Our Privacy
In late November, the Uppsala District Court will hear a case in which a cancer patient’s last battle with death became television entertainment. The background to this is an episode of the television series The Hospital on TV3. It showed a sick man suffering from acute respiratory distress and how hospital staff were rushing to save him. We got see how the breathing equipment malfunctions and took part in the staff discussions about the man’s condition in the staff room and in the hallway. They described the hopeless situation. Someone mentioned that they called his wife. Two days after the video recording, the man died. A few weeks later, the hospital drama was shown on television. With an advertising break for products including winter tyres, party hats and fruit puree. Neither the now-deceased man nor his relatives were aware of or had consented to the filming or television broadcast. The night the programme was shown, the deceased’s widow and daughter were sat on the sofa. TV3 was on by chance. The shock when they suddenly saw the segment with their husband and father was stunning to them. When, shortly thereafter, they contacted the council to ask for an explanation, and an apology, the answer was that no errors had been committed. The council made ??reference to a contract with the production company, Titan. Through this agreement, the council had allowed the care, the patients and the medical records to be used for television entertainment. Finally, the family decided to sue the council in court. A critical issue that the court must consider is whether the public sector, through an agreement with a company, may waive confidentiality rules, whose purpose, among other things, is to protect the individual, whose life is affected by government acts or activities. So far, the Parliamentary Ombudsman has stated, ”it is highly remarkable that the university hospital, because of an agreement, has approved that the applicable privacy policy can be overridden”. But, above all, the court’s decision is about the determination of liabilities, and preventing similar transgressions in the future. The families argue that the county council has violated their right to a private life and personal integrity under the European Convention. At first, the county council said that the right to privacy under the European Convention was not at all an issue in the case. The council has now backed away from this position. Since then, the council has brought in a lawyer who had previously represented TV3. And then launched instead its defence that the whole thing is about the county council’s freedom of expression. A classic conflict between privacy and freedom, one might think. But what is really happening in this case? To avoid liability in a case involving violations of individual rights, a county council, that is a part of the public sector, is attempting to invoke rules whose purpose it is to protect individual rights against the public sector. The Data Inspection Board is the authority that works to ensure the individual’s right to privacy in society, and it has previously held that the public sector cannot invoke constitutional protection to avoid legal obligations that are intended to protect personal privacy. This is now also one of the issues Uppsala District Court must consider. But more is at stake in the Uppsala trial; namely, millions of kronor. The case in Uppsala is far from unique – twelve of Sweden’s twenty-one county councils and regions have similar agreements, which are also in conflict with applicable privacy legislation. This, at the same time, provides TV production companies a very large space in which to play. And the contracts can be very profitable, even for county councils. Uppsala County Council claims to have banked advertising revenue of approximately 60 million kronor through the series Hospital. It is difficult to estimate exactly how many millions are rolling in if you add up all the contracts and television productions in all of the country’s counties and regions –but it’s a lot. Unfortunately, it is not just hospital patients who are at risk of sensitive personal data being spread to unauthorised parties through television broadcasts or publications in other media. The Chancellor of Justice (CJ), for example, criticised the police, who let TV crews film body searches in connection with arrests. In other contexts, CJ has criticised that information about people suspected of crimes (whom later turn out to be completely innocent), is leaked to the press very early, and in violation of the confidentiality provisions. The Data Inspection Board is currently involved in other legal proceedings, which are also about commerce with personal data. When an entrepreneur from Sollentuna reached his 62nd birthday, he received a letter with commercials for incontinence aids. In the letter, he was asked several questions: ”Do you have to get up at night to urinate? Do you feel you do not have the same pressure in the jet as before?” He called the company and asked where it had got hold of his personal data. The company said that it had bought the details from market analysis company, Bisnode, which in turn bought them from the Companies Registration Office (CRO). The data the CRO sold were from the authority’s compulsory register of authorised signatories and directors of limited companies. The CRO is not alone in forcing individuals to give personal information and then sell it on. This without the individuals concerned giving their consent or even being informed about what is happening. This summer, the Daily News reported that the Transport Agency, CSN and the Tax Office do the same thing. The Transport Agency sells personal data for 30 million kronor a year. Large customers receive a discount. The Tax Office doesn’t only sell information about living people. This summer, a 27-year-old man from Stockholm died after a brief illness. It was not long before the deceased man’s 23-year-old former partner received letters from several competing stonemasons. They wanted to sell headstones. The promotion was made possible by the Tax Office, which had sold information about the death, the partner’s address, and more to the companies. The Daily News’ disclosure of Skåne police’s registration of Roma has resulted in a fierce debate about the true state of the protection of privacy in Sweden. But even if registration on ethnic grounds is particularly shocking, the issue of personal integrity in itself is nothing new. A few years ago, a government investigation, led by the Justice Department’s former legal chief, Olle Abrahamsson, concluded that there were significant shortcomings in the protection of privacy in Sweden. The report pointed out that the previous regulation of privacy in government – and our own Constitution – was mainly motivated by interests other than strengthening the individual’s right to self-determination over their own personal information. It was concluded that the legislature had not put enough emphasis on the privacy aspects of the new legislation and that the protection of privacy in general was valued low. The investigation did result in legislation. On 1 January, 2011, a governmental provision was introduced that prohibits monitoring and mapping of people’s personal circumstances to a significant degree, which occurs without consent. And so, through the Constitution, the police’s ethnic records are linked together with the cases of cancer patients who were exposed to television because of the authorities’ sale of mandatory personal information to commercial entities. The constitutional protection against the handling of personal data (that substantially involves mapping of the individual’s privacy) applies not only to the enforcement operations, but also, for example, to the management of information about an individual’s health in patient records. And the Constitution now requires that there is a proportionality test of its purpose and the extent to which personal information will be disclosed. Making television programmes about health care and policing need not in itself be a bad thing. They can certainly be of great value both as entertainment and as sources of community information. Companies may also have a legitimate interest in being able to target advertising to selected audiences. But it should never be done in such a way that individual human rights are likely to be undermined. It is crucial that a big-money industry around medical records and state-collected personal data does not drive the public sector to compromise confidentiality and integrity protection. When the relatives of the deceased man at Uppsala University Hospital in November take their places in the district court, everything is at stake. But above all, it is, for their part, about restitution for a loved and missed husband and father. Clarence Crafoord is a lawyer and director of the Centre for Justice