By 16 December 2015, representatives for the European parliament, the Council of Ministers, and the European Commission agreed on a common text which will replace national legislations on data protection by 2018 (in Sweden for instance PUL). The negotiations have been hard, and researchers have been up in arms about the threats to research that have been anticipated given the strict rules proposed by some during the negatioations. However, the final outcome seems beneficial for future research, and agrees largely with current regulation in Sweden. In some instances, there is even room for improvements when it comes to the possibility to build long term databases for research purposes.
Negotiations towards the end focused on requirement for pseudonymisation fo research databases, and on derogations from the generally extensive rights for individuals to get information, access, right of correction, and right of deletion from databases. The outcome will make it possible to prevserve and use data for important helth and othe reserach purposes, and it will make continued mandatory collection of data in the authorities to the extent of the current practices legal also in the future.
Among others, Sweden, Denmark, and the UK have been very active when it came to protect important life saving research on personal data in the future.
The text was taken by the parliament Committee on Civil Liberties, Justice and Home Affairs on 17 December, 2015 with 48 votes in favor, 4 against and 4 abstainers. The entire text is available via the link below under “Miscellaneous 4 – consolidated text”:
Article 83 is highly relevant, but also Articles 4, 5, 6, 9, 14, 15, 16, 17, and 19 are of importance for performing register-based research in the future.
Formal decisions by the entire parliament and the council are expected during early spring 2016.