10 Researchers must respect the requirement of freely given, informed consent

When research involves humans as research subjects, researchers must, as a general rule, obtain freely given, informed consent. General requirements regarding freely given, informed consent entail researchers ensuring that the person or persons taking part in the research

a) understand the purpose of the project and the part concerning their participation in the project

b) can evaluate their own situation

c) can make an independent decision as to whether they wish to participate, without external pressure, on the basis of information and their own preferences and values

d) can freely communicate their decision

11 Researchers must protect the privacy of their research subjects

Openness is a fundamental standard in research. At the same time, there are areas where it is necessary to safeguard the privacy of research subjects, particularly when sensitive information is collected. Information about the persons taking part in the research project, or about others with whom a researcher become acquainted during the research process, must be handled with care. The researcher must inform the participants about how the information will be protected and stored. The researcher must also provide confidentiality or anonymity for those who want it. Confidentiality means that all information and data are de-identified, i.e. no unauthorised persons will be able to know who has provided which data to the researcher. This procedure still allows the researcher to link data to particular individuals. Anonymity means that not even the researcher knows which individual has provided which data or material. As a general rule, this means that researchers must respect protection of privacy by de-identifying or anonymising personal data.

[4] When there is question of processing personal data, the Act relating to the processing of personal data (Personal Data Act) applies. The Act on medical and health research (Health Research Act) applies to medical and health research on humans, human biological material or health data. The National Committee for Research Ethics in the Social Sciences and the Humanities (NESH) has drawn up more detailed guidelines that concern respect for research subjects in the academic areas of social science, humanities, law and theology (Research ethics guidelines for the social sciences, humanities, law and theology).