lASSIST Newsletter, Vol. 3, No. 2 (Spring 1979) USER NEEDS AND CONFIDENTIALITY IN SWEDEN Erika von Brunken The issue of data confidentiality has become an important problem for discussion and legislation in many nations. Legislation dealing with data confidentially can have an impact on social science research as well as on methods for archiving and retrieving data. Erika von Brunken, in a paper delivered originally in Ottawa, discusses Sweden's response to the issue . --Ed itor . INTRODUCTION Since May 1973 Sweden has a Data Protection Act (Datalagen, 1973) [1]. As questions related to registration of personal data have attracted considerable attention since the passing of this law, it became obvious that amendments would be needed in a near future. Several parliamentary bills on this subject have been proposed during the past years. In May 1976 a Swedish Government Commission on Data Legislation (DALK) was set up for a general review of the Data Protection Law and of the activi- ties and experience of the Data Inspection Board. DALK examined the legal regulation of the protec- tion of privacy in conjunction with registration of personal data, chiefly problems associated with the use of ADP. As a result of this investigation the report "Per- sonregister - Datorer - Integritet" (Person registers - computers integrity) [2] was submitted (June 1978). Emanating from this report, a Government Proposal[3] on certain amendments in the Data Act was sub- mitted on March 22, 1979, which will come into force on July 1, 1979. DALK is now investigating the way in which computerization affects the principle of public access to official records, as well as the use of computers in public administration and by the business community as an international phe- nomenon. In the following I shall not dwell on the concepts of privacy, integrity, confidentiality, ranging from "the right to be left alone" to "being able to decide and act on one's own", but restrict myself to the legal aspects of privacy pro- tection and their impact • on research in the social sciences. TH E IDENTITY NUMBER AND THE PRINCIPLE OF PUBLIC ACCESS TO OFFICIAL RECORDS . Discussions on privacy and data protection in Sweden revolve around two basic problems: the identity number, assigned to every person living in Sweden, and the principle of public access to official records, confirmed by law in 1766. The identity number, in Sweden called "person-nummer" , has existed since January 1, 1947, and com- prises the birth date (year, month, day) and four digits, e.g. 650213-1193. The last four digits are coded information on country of birth, sex, and a control figure. As all information on an individual is stored by this identity number, it was easy to sort immigrants by their national origin. This dis- crimination has been cancelled 23 - lASSIST Newsletter, Vol. 3, No. 2 (Spring 1979) lately, so that now even immigrants get their identity number from the Swedish series. The identity num- ber, the name, address and family relations are entered in a personal file drawn up by the registration office of the parish in which the individual is registered. In the personal file instances of mar- riage, children, divorce, change of address and death are recorded. If the person moves to another parish, this file is transferred to its registration office. While in most countries the population statistics are still based on censuses, Sweden now has a fully developed system for the continuous recording of population changes in local, regional and national registers. A vast amount of personal data has so been stored in Sweden in machine- readable files, and the identity number makes it technically easy to merge information from different files, originally stored for other purposes. The principle of public access to official records was established by the Press Law ( tryckf r ihetsl a- gen) in 1766. According to this law any Swedish citizen has the right to take part of, to read or to copy official records and to publish their content. [2] Even the records of the nunicipal adminis- tration are official records due to this law. Certain records, how- ever, are not official, as docu- ments concerning state security, central financial policies, inter- ests to prevent crime or legal action against it, the economic interests of the society, etc. These documents are classified as secret material by the Secrecy Law and are not accessible. Informa- tion stored on machine-readable media can be obtained in the form of printouts for a fee. Personal data are not accessible. The Press Law has been amended several times. The latest amendment has been made in 1976 with special application to automatic data processing and other technical recording. The new rules came into force in January 1978. The Data Inspection Board and its role in the protecTion oT pr i vacy . The Data Inspection Board is a central administrative agency for examination of matters relating to licenses and supervision in accor- dance with the Data Act, the Credit Information Act and the Collection of Debts Act. [2] Because of the large amount of personal data stored on machine-readable media since the beginning of the 1960s, the use of ADP was considered to involve such risks of intrusion upon the privacy of a registered person, that special attention had to be paid. Special legislation was therefore demanded for regula- tion of both public and private personal registers kept by ADP. Since July 1, 1973, every person, firm or authority, who wants to register personal data by ADP, has to apply for a license at the Data Inspection Board. Now even for collection of personal data for automatic data processing at a later date a licence is needed. The Swedish Government Commis- sion on Data Legislation (DALK) recommends that the following con- siderations should be taken into account when licence applications are examined : - it should still be permis- sible to start a personal register if it can be assumed that - having regard to the various regulations which may be issued - the register involves no risk of undue 24 - lASSIST Newsletter, Vol. 3, No. 2 (Spring 1979) encroachment upon the privacy of the registered persons the significance of the term undue encroachment upon the personal privacy of those registered cannot be decided in general, but must as now, continue to be judged from case to case in making this judgment spe- cial consideration should be given to whether the purpose of the register complies with the activity conducted or to be con- ducted by the responsible keeper of the register special atte paid also and quanti sonal dat wh i c h pe r included i and to whe and quanit the categ concerned purpose of ntion should be to the nature ty of the per- a, as also to sons shall be n the register, ther the nature ty of data and ory of persons comply with the the register special attention, too, should be paid to whether the data to be included in the register were origi- nally collected for another purpose than the register is to serve special attention, finally, should be paid to the attitude to the register held by or assumed to be held by those who may be included in it." DALK proposed additions to Sec- tor 3 of the Data Act on these lines. The proposed additions have been included in the amendment to the Data Act. DALK emphasizes the significance of public interest when a licence is examined, saying "that certain very delicate per- sonal information may, under the Data Act, be registered if called for by a strong societal or other public interest". When a license has been given to set up and to handle a personal file by ADP technique, the Data Inspection Board gives instructions in accordance with Section 6 of the Data Act on following points: 1. collection of information for the person register 2. how to perform the auto- matic data processing 3. the hardware 4. processing of personal data allowed by ADP 5. notification of the per- sons concerned 6. the kind of personal data which may be made availa- ble 7. the handing out and other use of personal data 8. preservation and sorting out of personal data 9. control and security. Concerning the registration of soft data Section 6 was amended with the following: When considering if instructions are needed, special attention shall be paid in case the file contains personal data based on judgments or on appraised infor- mation on the registered person. - 25 lASSIST Newsletter, Vol. 3, No. 2 (Spring 1979) Person registers o Government or the Par need a license, but by the Data Inspectio Data Inspection Boar for the license proc ponding to the time n moment the fee is hour. Research wor pay reduced fees. Data Inspection Bo about 20,000 applicat died 18,000 of them, a simplified proc remaining 35 per cent lot of work. Researc to this group. rdered by the 1 iament do not are supervised n Board. The d takes a fee edures corres- eeded. At the skr . 315: - per kers sometimes Up to now the ard received ions and han- 65 per cent by edure. The often need a h files belong Obi igations of the holder of a person register . Every person, firm or authority who received a license for setting up or holding a person register on ADP is must follow paragraphs 8 - 14 of the Data Act. I present these paragraphs in an abbreviated form: 8. If it can be suspected that some personal data in the file are wrong, the holder is responsible for immediate investigation and correction of the data in question. If a file c sonal data incomplete wi the aim of t and which by pleteness m undue intrus personal int individual legal implic holder has t the missing i ontai wh i th re he its ight ion eg r i t r mig ation o su nform ns per- ch are spect to eg ister , incom- cause nto the y of an ht have s, the ppl emerit ation. requests it, the holder of the file has to inform the appl icant about the con- tent of the personal data stored on him/her. Even if no information has been stored, this has to be stated. Once information has been given, no new information has to be con- fered to the same person before 12 months later. This kind of information is free of charge. Cer- tain information is yet excepted from this rule. 11. Personal data may not be handed out if it can be suspected that the infor- mation will be handled by ADP in conflict with the law. In case information shall be handled by ADP in a foreign country, the consent of the Data Inspection Board is needed. Such a consent will only be given if no intrusion into personal integrity is involved. 12. The responsible holder of the file has the obliga- tion to notify the Data Inspection Board if the register shall be closed. The Board will then give instructions what to do with the file. 13. The responsible holder or other persons working with a person register or col- lecting material for the file are not allowed to reveal information on an individual. The same is valid for persons who received information from a person register. 10. If a registered person 26 - lASSIST Newsletter, Vol. 3, No. 2 (Spring 1979) 14. If authorities ase ADP would lead to infringement or pri- records for handling or vacy instead. It has been recom- hearing a case, the mater- mended that the identity number ial shall be added to the should not be printed in data out- records in readable form, puts if not necessary, if not special reasons give rise to another DALK says: "As regards other procedure. aspects of linking, it has above all been pointed out in the debate that public agencies, with the aim Those who break the law can be admirable as such to fulfil their punished by fines or prison. An functions as justly and rationally individual has the right to claim as possible, have tended increas- damages if intrusion into personal ingly to make use of ADP and the integrity has occurred. The Data possibilities of linking registers Inspection Board may recall a in order to check the correctness license in case personal integrity of particulars submitted by the has been violated or cannot be individual in different contexts, secured. But it is not unusual that the pri- vate sector as well, e.g. insurance companies and credit information agencies, uses data in various MERGING INFORMATION FROM official registers to check infor- DIFFERENT FILES BY USE OF mation submitted by the individual THE IDENTITY NUMBER . relevant to a particular private sector. Apart from these The linking of files or merging instances, the linking and other of information from di'ferent joint use of data would appear to files, originally set up fo. other be commonly desired in scientific purposes, has aroused public opin- research, including community plan- ion and drawn attention to the need ning and the production of statis- for protection of privacy. It is tics. These aspects of the linkage technically easy in Sweden to merge problem involve, in DALK's opinion, selected information from different a broader political issue, namely file by using the identity number. which methods should be accepted All information on an individual is that public and private bodies use stored by this number. The tax for checking the correctness of office checks your declared income, particulars submitted by the indi- the social welfare authorities make vidual, often on oath or in similar sure you have not received undue forms, in a specific administrative allowances, etc. The Cancer-Envi- matter or a specific customer rela- ronment-Reg ister , conducted by the tionship." National Board of Health and Wel- fare, is the result of merging The question is to weigh the information from the Cancer Regis- infringement on privacy against the ter with census data on occupation, demands of the public interest, working place, living quarters, DALK proposed that governmental education, etc. A more restricted instructions should define mo-re use of the identity number, even clearly for which purposes data in its elimination, have been dis- official registers may be used, cussed, but the advantages are sur- This might quiet the public uneasi- passing the disadvantages. The ness concerning uncontrolled use of joint running of files would not be individual data. as easy as now, but name confusions - 27 - lASSIST Newsletter, Vol. 3, No. 2 (Spring 1979) SOFT DATA AND OTHER SENSITIVE be eliminated, research would be INFORMATION . made impossible, which in turn would endanger society. The Board The need for and the use of soft was afraid that DALK's way to data and other sensitive informa- balance the demand for integrity tion and their handling has been against the demand for research discussed thoroughly by the might become fatal for future research community and the authori- research in the social sciences in ties. The point of view differs, Sweden. Janson stressed further depending on who is discussing it. that the Data Protection Law Largely the authorities agree that already has affected research in a soft data should be handled with negative way, and that the protec- utmost care and should be judged tion of privacy has changed for the from case to case. The Data worse. He foresees a strong Inspection Board emphasizes that it bureaucratic impact on research, cannot be said generally which kind and as a consequence reduced empir- of information is sensitive, and ical research. Janson proposed which is not. Important is the that a distinction should be made feeling of the individual towards between administrative and pure it. It is that perception which research files, the latter ones should decide from case to case. should not need a licence. This The Data Inspection Board attaches idea had already earlier been pre- great importance to the viewpoints sented by him during a symposium on of the ethical committees at the "Forskning och integritet" respective faculties. These com- (Research and Interity), arranged mittees investigate research pro- by the Faculty of Jurisprudence at jects of sensitive nature, and exa- Stockholm University in March mine if they can be performed in 1978[5], where research workers accordance with ethical rules. Thi from different fields in the social restrictive view of the Data sciences had met and discussed Inspection Board is shared by DALK, their experiences. Several parti- which proposed the amendment to cipants of this symposium empha- Section 6 of the Data Act already sized the need for soft data and mentioned earlier. the necessity to store them for later use in longitudinal and panel As expected, the strongest cri- studies. The elimination of the ticism against the proposed amend- identity number would make such ments have been expressed bY studies impossible. Concerning research workers in the social sci- archiving and sorting out data ences. Professor Carl-Gunnar Jan- files it was pointed out that it son, sociologist and Dean of the should be born in mind what kind of Faculty for Social Sciences at data might be of value for research Stockholm University, expressed the 20 years or more ahead, and that view of the Board of the Faculty in the demands of future research an answer to the Department of Jus- should be met. tice, which submitted DALK's report for consideration. [4 ] He said that The Research Council for the neither freedom nor right are abso- Social Sciences, well aware of the lute, neither the freedom to do need to preserve research files, research, nor the individual's set up a working group on data right for privacy. The interests archiving matters in March 1978. of the society had to be taken into The final report of this group has consideration. If all risks should just been presented, but no deci- - 28 - lASSIST Newsletter, Vol. 3, No. 2 (Spring 1979) sion has yet been made. Ulf advertisements filling their mail- Christof fersson from the University boxes. of Gothenburg, a member of lASSIST, belongs to this group. Probably he Still we are an open society, will report on this work at a later Research workers, representatives date. The Board of the Research of the Data Inspection Board, the Councils, Forskn ingsradsnamnden. Research Councils and the Central set up a committee on longterm Bureau of Statistics have been most research for investigation of the helpful by providing me with infor- need for future access to data. mation. Summarizing my impressions The work of this committee has been very crudely I could say: the presented in a report "Forkningens farther away you are from research, framtida datatillgang" (Future the less you are worried about the access to data for research) [6] by impact of data legislation on Christer Winberg and Sune Akerman. future research. References FINAL REMARKS . 1. Datalagen SFS 1973:389. Sweden is known as an open 2. Pe rsonreg i ster-Da torer-In teg r i tet society where information is SOU 1978:54, Liber Forlag allowed to flow freely. It might seem astonishing to people from 3. Regeringens proposition other countries, that the Swedes 1978/79:109 om andring i data- are willing to accept the accumula- lagen (1973:289) Riksdagen tion of a vast amount of personal 1978/79. 1 saml. Nr 109. data on them in official files, which later on might be used for 4. Stock lolms universitet, Samhall- supervision by governmental or svetenskapl iga fakul tetsnamnd- local authorities. I think as the ens remi ssyttr ande over data- principle of public access to offi- lagsti fningskommi ttens cial records gives the citizen a betankande. 1978-11-01. possibility for insight into public administration, a feeling of reci- 5. Forskning och Integritet. Sym- procity is created. There have posium 9-10 mars 1978 anordnat been opinion polls after the Census av juridiska fakulteten vid of 1970 and 1975, as some questions Stockholms universitet asked in the census were seen as an 1878-1978. intrusion into privacy, but I think people are not yet aware what pos- 6. Winberg C. and Akerman S. For- sibilities for control are given by skningens framtida datatill- storage of those files by ADP tech- gang. Samarbetskommitten for nique. It just begins to dawn on 1 angsi ktsmot iverad forskning. them. What is embarrassing people Juni 1976. most, are the personally addressed - 29