Cancer Research UK cautions that revisions to EU Data Protection Regulation will prevent or severely impair scientific research studies which use personal data.
These concerning changes were agreed by the European’s Parliament LIBE committee.
Professor Peter Johnson, Cancer Research UK’s chief clinician, said: “These changes to European Law could put essential medical research at risk – halting medical advances and ultimately costing lives. The new proposals are designed to give individuals more rights in how information about them is used, but their impact on health research is an unintended and alarming consequence. For health research, these changes are unnecessary. In the UK, robust research ethics systems are already used which protect patients but also allow vital research to take place.
“Clinical trials and population studies are an essential part of finding new ways to prevent and treat cancer. These trials rely on having access to data about people’s age, gender, where they live, health conditions and lifestyles. This regulation would make it almost impossible to access these. We must ensure the public can continue to benefit from the world-class research that takes place in this country, and this legislation puts it under threat.
“We’re calling on the UK and EU Governments to take action and ensure the Regulation is changed in order to protect medical research in Europe.”
The types of research that would be affected include large studies which use patient data. For example studies which rely on individuals’ data being examined in order to identify appropriate participants. This would be extremely difficult (or potentially impossible) to do under the new Regulation. And studies like, CONCORD-2*, would be seriously affected as they rely on the cancer registries which, in turn, rely on data being collected for anyone with a diagnosis of cancer. Our comprehensive system of cancer registration will be severely affected by this Regulation, with knock on effects on this and other studies which rely on it for data.
- The Million Women Study. A national study of women’s health, involving more than one million UK women aged 50 and over. It is a collaborative project funded by Cancer Research UK, with additional funding from the Medical Research Council and the Health and Safety Executive, which aims to answer many questions about the factors affecting women’s health in this age group. The main focus of the study relates to the effects of hormone replacement therapy use, but the large size of the study means that a very broad range of health issues can be addressed.
- UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS). Patient data was used to recruit participants into a trial assessing ovarian cancer screening, funded by Cancer Research UK. Early results seem to suggest that screening may be feasible. Final results are expected in 2015.
- *CONCORD-2, a study which is comparing cancer survival in different countries. It will allow us to look at how cancer affects countries across the world and allows policy makers to look at how our health service can be improved to deliver better cancer outcomes. In 2008, the study became the first worldwide analysis of cancer survival, estimating relative survival for 1.9 million adults, using 101 population-based cancer registries in 31 countries on five continents.
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