New amendments to Data Protection Regulation are currently making their way through the European Parliament which could affect how researchers can access personal data. Beth Thompson, a Policy Adviser at the Wellcome Trust, explains why we believe this could have serious implications for medical research.
Personal data holds huge potential to help us understand health and disease through research. For example, since the 1990s, the European Prospective Investigation into Cancer and Nutrition (EPIC) has investigated the relationships between diet, lifestyle and environment and disease thanks to half a million participants across ten European countries allowing access to their data. EPIC has provided important evidence on the causes of breast and colon cancer and continues to advance knowledge related to cancer and other chronic diseases
The Trust has a long-standing interest in how to facilitate research like this, while making sure data is kept safe. Two years ago the European Commission…
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