METADAC

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Some of the most important advances in our understanding of health and society are based on research studies that have been collecting information (or data) from ordinary people over many years. These studies are called longitudinal studies. The UK has a unique history of supporting longitudinal studies, with some starting as long ago as the 1930s. Longitudinal studies collect data about how people live, their health, well-being, education, as well as their social and physical environments. Some also collect biological samples (e.g. blood or urine) which can be processed to obtain data about inherited characteristics (genetics). For example, these studies have shown us that smoking in pregnancy leads to poorer health in babies and that inherited characteristics can affect health conditions such as diabetes and high blood pressure.Researchers from the UK and around the world can use these data and samples from longitudinal studies to answer important questions about human health and wellbeing. Some of these data collections contain information that is sensitive, especially when different types of data or samples are combined. For this reason access to the data and samples for research is restricted. Only qualified researchers working for recognised research institutions can use these data or samples. Independent committees exist to safeguard the people who contributed the data. The METADAC project runs such an independent committee to approve applications from researchers to access data and samples from UK longitudinal studies. METADAC designs the rules for making sure that access to data and samples for research is safe and secure based on the best practice and policies from around the world. METADAC also ensures that the process of applying for access is fair and transparent. METADAC includes experts in science, ethics, law and clinical practice who have an understanding of the complexities of sharing data and samples for research. METADAC also includes people who provide data and samples for longitudinal studies (the study participants) in developing rules about access and in granting permission for researchers to access data and samples.METADAC has already successfully completed three years of development - 2015 to 2018. In its second phase (2018 to 2020) METADAC will continue to provide safe and fair access for research which combines different types of data and uses samples. METADAC will strengthen and promote its systems so that more researchers can use data and samples from longitudinal studies to advance knowledge about health and society. As part of its commitment to safe use of data and samples, METADAC will also work closely with other organisations who are charged with keeping the data and samples from UK longitudinal studies safe and secure.