Scientific Research Subject to Legislation
Researchers working in social sciences and the humanities are often faced with collecting and handling personal data. In Finland, their actions are regulated by both research ethics and legislation.
The right to privacy is safeguarded by the Finnish Constitution. The collection and handling of personal data is more specifically governed by the Personal Data Act (henkilötietolaki) enacted in 1999. It defines the guidelines for researchers who collect, store and analyse personal data.
As described by law, personal data is any information on a private individual identifiable as concerning him/her or the members of his/her family. Most obvious examples are names, addresses and social security numbers, but in some cases and contexts also other kinds of particulars may come into question.
Maija Kleemola, Head of Department from the Office of The Data Protection Ombudsman, emphasises proper data procession practices, and the importance of confidentiality and privacy. - There are three basic rules: Firstly, no outsider can have access to materials containing personal data. This should be assured in advance, before any data is collected. Secondly, one should avoid collecting unnecessary information, meaning that only the kind of data which is crucial to the research is asked. And thirdly, if the material is collected directly from the respondents, they should be given enough information regarding the contents and purpose of the study.
Maija Kleemola emphasises that the regulations and demands governing issues of privacy and confidentiality should not be seen as a nuisance. Explicit rules and candour ensure that also in the future it is possible to do interesting social science research by using multifarious materials.
Respondents have a right to know
Giving information is always voluntary, a fact that respondents should be aware of. The purpose of the research must be specified, and the person responsible for the study, as well as all the researchers named. If several organisations are involved, it is advisable to define the role of each. In addition, the respondents are told how the aspects of confidentiality and data protection are handled, and how long the personal particulars included in the research material will be stored. If the data are used in some future research project or in teaching, the respondents need to be told. All these issues should be agreed on with a separate consent form.
Research material can only be used for the purpose specified to the respondents. If, for example, it is stipulated that the data is collected for a dissertation, the material has to be disposed of or anonymised when the work is completed. The National Archive of Finland may also grant a special permission for storing personal data.
Anonymisation means that all the information in the data which can be used for identification is either changed or generalised, i.e. rare professions are generalised to broader concepts. The greatest advantage of anonymisation is that the material can be used in researcher's future studies. Furthermore, anonymised data can be archived at the Finnish Social Science Data Archive and made thus available to fellow researchers.
Technology creates new challenges
It is difficult for the legislators to keep up with the technology development, says Kleemola. In spite of this the prevalent laws on research practices are quite simply applicable to, for example, the Internet and e-mail. According to the basic principle, telecommunications is confidential if it is not meant to be public. Accessible to all chat pages are comparable to newspaper's Letters to the Editor, while closed mailing lists are subject to the Personal Data Act - if conversations are to be used as research material, each member of the list must agree to it.
Pirjo Nikander studies interdisciplinary co-operation and decision making, how matters concerning the health and competence of elderly customers are negotiated, and how the decisions are in practice made. Research material consists of videotaped authoritative meetings. Although Nikander's study does not directly concern those persons whose cases are reviewed on the tapes, legislation and research norms have required serious consideration.
First the representatives of the local social and heath care authorities had to agree to participate in the study. Nikander then contacted the ethical board of the Health and Social Services, and applied for a permission to gather information and carry out the study. Nikander's material includes a large number of personal data. Each person appearing on the tapes was thus asked to sign a written consent. In addition, the researcher agreed to delete all social security numbers, and alter personal names and diagnoses while transliterating the tapes. Each member participating in the videotaped meetings was also allowed to stipulate which parts of the material could not be used.
The respondents signed a consent which states that the tapes are made for a specific research. Nikander knows that when the study is completed the original tapes must be disposed of. Fortunately the transliterations have been anonymised, and the material which has required a lot of hard work can be used in the future.
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