The EU General Data Protection Regulation (GDPR) and new Data Protection Act come into force on 25 May. Both apply in the UK and will influence research involving personal data. So what’s changing and how should you, as a researcher, prepare? Sarah Dickson, Head of the MRC Regulatory Support Centre, is here to help.
What is GDPR?
The EU General Data Protection Regulation (GDPR), along with the new UK Data Protection Act, will govern the processing (holding or using) of personal data in the UK.
Although the new regulations haven’t been designed specifically for research, we’ll need to make some changes to research practice. The Information Commissioner’s Office (ICO) is the UK regulator. The Health Research Authority (HRA), in collaboration, is providing official guidance for people working in health and social care research. We‘re working with both organisations.
Dr Andy Skinner and Chris Stone believe that new technology has the potential to transform health data collection in the longitudinal community – and that there are already promising signs of this among early adopters.
In the last decade or so advances in bioinformatics have made it easier for health researchers to study people’s genetic make-up (genotype) in detail. For example, it is now possible – and has become almost routine – for health researchers to identify genes associated with specific diseases using genome-wide association studies. Read more
The information that gathers in our wake as we move through life and health centre or hospital waiting rooms is a powerful tool for medical research. Cecily Berryman tells us how a health emergency brought discussions about data science to the heart of her family.
Three years ago my husband suddenly became very ill. He needed emergency surgery to fix a tear in his aorta, the huge artery that carries blood as it pumps away from the heart. Afterwards the surgeon called it an ‘acute aortic dissection’ and mentioned it was likely to be a connective tissue disorder that has a genetic cause. Extensive testing revealed it was not a known disorder.