According to the Swedish Personal Data Act, personal data is defined as all kinds of information that directly or indirectly may be referable to a natural person who is alive (cf. Section 3). The processing of non-sensitive personal data that is completely or partially automated is subject to a notification duty (cf. Section 36). Such notification is however not required if the controller has appointed a data representative and given notice of this to the Data Inspection Board (cf. Section 37). Many universities, university colleges and research institutions have appointed such a data representative. There is also exemption from the notification requirement if the data subject has consented to the processing.
Processing of sensitive personal data for research purposes can however only take place if approved by an ethics committee, due to the Ethical Review Act. This applies whether or not the subject of the research has explicitly given their consent (See Requirements to acquire approval from an ethics committee).
Data Inspection Board
The Personal Data Act
Central Ethical Review Board [online]. Available at: <http://www.epn.se/en/start/startpage/>. [Accessed 25. February 2014].
Concerning changes made to the Act (2003:460) concerning the Ethical Review of Research Involving Humans (the ethical review act) etc, 2008. Central Ethical Review Board [pdf] Available at: <http://www.epn.se/media/37337/letter_080526__rev.pdf>. [Accessed 4. March 2014].
Datainspektionens författningssamling, 2013. DIFS 2013:1. Datainspektionen [pdf] Available at: <http://www.datainspektionen.se/Documents/datainspektionen-foreskrifter-2... [Accessed 25. February 2014].Data Inspection Board [online]. Available at: <http://www.datainspektionen.se/in-english/>. [Accessed 25. February 2014].
Personuppgifter i forskningen – vilka regler gäller?, 2013 [pdf] Available at: <http://www.datainspektionen.se/Documents/faktabroschyr-pul-forskning.pdf>. [Accessed 4. March 2014].
The Ethical Review Act, 2003. The Act concerning the Ethical Review of Research Involving Humans [pdf] Available at: <http://www.epn.se/media/45159/the_etical_review_act.pdf>. [Accessed 4. March 2014].
The Personal Data Act, 1998 [pdf] Available at: <http://www.government.se/content/1/c6/01/55/42/b451922d.pdf>. [Accessed 25. February 2014].