We have over the years provided comments to rules and regulations for data protection. We have especially provided information on the situation in Europe where new regulations is being negotiated. The rules have crucial importance for our access to use of data for research, especially for use of registers like the cancer Registry or the […]
Follow the links below to find 2 recent important documents about use of data for research. These influential bodies (Nature and ScienceEurope) provide strong support for making legislation that allows reuse of data for research.
The new developments in the saga on data protection in the EU have rightly generated lots of concern. Many years of investments in infrastructure to help improving our knowledge on how to improve treatment and prevention for diseases and ill health may all be wasted. Here is the latest report on the topic from […]
Observations of the IEA in reference totext of the GDRP as proposed by the European Commission (document COM(2012) 11 final – C7-0025/12 of 25.1.2012) and to the Draft Report by the Committee on Civil Liberties, Justice and Home Affairs of the European Parliament dated 16.1.2013 […]
The rapid response committee has kept IEA members up to date on important legal issues related to use of data in epidemiologic research, especially data collected for monitoring or administrative use. The proposed Regulation provided a legal framework that would not add new restrictions to our use of health data in research. That may unfortunately have changed. Albrecht’s revisions to the proposed text will have serious consequences for epidemiology if they are all accepted. Please note Welcome Trust’s concern below and have a look at the changes yourself – pay special attention to amendments 15,17,19,22 and 31. […]
The text on data protection for the EU is being debated and it is clear that several changes will be made. It is currently unclear whether we end up with a directive or a regulation. A directive will provide more flexibility for individual countries in how they practice the law. A regulation imposes a common law for all member states. By November 2012 6 countries support a ‘directive mode’. Not quite enough to avoid that a regulation will be implemented by parliament but many countries have not yet made their position clear. There are other part of the text being debated so the battle is far from over and we still run a risk of having less options for doing research after new legislation has been agreed upon next year. […]
At the IEA European Congress in Porto the new EU regulation was debated on Friday September 7th, 2012. At the session the Italian Judge Giovanni Buttarelli was present and took part in a panel debate with epidemiologists from Germany, Italy, Portugal and Denmark. He has worked as the supervisor and advisor (EDPS) for the […]
The matter of data protection regulation has been addressed in a workshop at the last WCE in Edinburgh and the impact that the EU proposal may have on the epidemiologists current work has been debated in some recent papers. The opportunity of harmonising data protection procedures among EU countries has been underlined by some researchers […]
Since our last report, several groups have been active in suggesting modification of the text to facilitate epidemiologic research in Europe.
Epidemiologists have contacted members of the European Parliament from their home countries. Ministers of Research have been contacted, and newspaper articles have been published on the topic.
Not only epidemiologists have been active. Large […]