Direct marketers may think they have got it tough – with the DMA estimating the proposed EU Data Protection Directive could cost UK business £47bn – but Cancer Research UK claims the laws will halt medical advances and ultimately cost lives.
Cancer Research UK’s chief clinician Professor Peter Johnson 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.
Professor Johnson said clinical trials and population studies are an essential part of finding new ways to prevent and treat cancer, adding that they rely on having access to data about people’s age, gender, where they live, health conditions and lifestyles.
He explained: “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.”
Large studies which use patient data will be illegal. These include the UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS), in which patient data was used to recruit participants into a trial assessing ovarian cancer screening, as well as the Million Women Study, a national study of women aged 50 and over, which aims to answer many questions about the factors affecting women’s health in this age group.
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