One of the aims of the impending changes to EU data protection regulation is to define a framework for a consistent approach across Europe. A number of new concerns have been raised that the proposed framework will have a negative impact and undermine research that heavily relies on personal data.
Several of Europe’s top scientific institutes have sent a letter to the EU warning that the proposed changes will significantly hinder research. The main area of concern relates to the legal requirement that would require consent to use personal information in research studies. It is also felt that even if consent was obtained the restrictions the new regulations impose would make it very difficult for institutes to maintain contact with the participants taking part in the research.
The greatest impact will be seen in the collaboration between institutes in medical research. In recent years links have been made between socio economic characteristics and health. For example, research has demonstrated links between unemployment and general health, smoking and the birth weight of babies, as well as being able to demonstrate the benefits of breast feeding on child development. Restrictions on how personal data can be used in such studies would hinder the evidence that is the basis of the research and, in some cases would totally invalidate the research.
With the emergence and growth in data analytics “Big Data”, the potential to unlock hidden benefits from vast volumes of data (especially in developing countries) may sadly remain unlocked.
The proposed changes to data protection regulation have been pending for over 18 months and have yet to be finalised. It is clear there are key areas (e.g. research) that urgently need to be considered, otherwise the benefits to our health and well being and of the generations to come may remain undiscovered.