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EpiBlog: Support for Reusing Shared Data from ScienceEurope and Nature

EpiBlog

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.

http://www.nature.com/news/privacy-in-the-digital-age-1.12978 http://www.scienceeurope.org/downloads

—Jørn Olsen

Observational research and informed consent

EpiBlog

Lessons learned from the legal protection of data In Europe

In June 2013 the European parliament will start the postponed voting on the New Regulation on Data Protection. More than 4000 amendments have been proposed and the Regulation is one of the most lobbied texts in the EU history. Not because of the problems it […]

Proposal of the International Epidemiological Association (IEA) on the proposed General Data Protection Regulation (GDRP) of the European Parliament and of the Council of the European Union

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 […]

EpiBlog: EU and Data Protection

EpiBlog

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. […]

Data protection in the EU, an update

EpiBlog

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. […]

Informed Consent

EpiBlog

Informed consent is a key concept in research ethics, and it has a central place in the Helsinki Declaration. In the randomized clinical trial, participants need to be informed about the potential risks and benefits of the treatment under study in order to make an informed decision before saying yes or no to the invitation […]

Making raw data widely available (BMJ 2011;342:d2323)

EpiBlog

In a recent editorial from the BMJ, arguments for sharing data were once more repeated (ensures reproducibility, allows testing of secondary hypotheses, facilitates development of new statistical methods, provides a resource for teaching, aids design of new studies, simplifies data acquisition for meta analysis, and helps prevent fraud and selective reporting). Although substantial support to […]

Back to School

EpiBlog

The really old-school epidemiologists will remember how influential epidemiologists in the 1980s complained about all these new methods that flooded our scientific papers, like the log-linear models, later the logistic regression model and then the Cox models.

Epidemiologists had been served well in aetiological studies by doing stratified analyses using first Cochran’s way of weighting […]

Mega studies – the new trend?

EpiBlog

Epidemiology has never been a static science in its more than 100 years of existence. Methods change over time, and research, focus, funding and infrastructures do not remain as they once were. Still, the changes we see now overshadow anything we have seen in the past. Large-scale cohorts are being planned, have started and will […]

A New EU Directive for Data Protection in Europe

EpiBlog

Many European epidemiologists will remember that the first draft EU proposed on Data Protection would have made it almost impossible to do epidemiologic research and many other types of research as well. Only after substantial consultations in Brussels by colleagues and patient organizations did we end up with a Directive that allowed (at least in […]