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Biomedical data collection, use and sharing

Data, data everywhere…

Throughout our daily lives, a wealth of data is being collected about us – but much of this happens without us realising it. At the same time, many of us are happy to share data about ourselves through social media and other avenues. Much of the data being shared is personal in nature, yet for many people it isn’t considered sensitive. However, when considering data that relates to biomedical study, linking through to an individual’s health and well-being, many people consider this to be highly sensitive in nature.

Is biomedical data different?

We can therefore consider biomedical research data as a subset of personal, sensitive data and it must be treated in a particular manner. Nevertheless, it is important to be able to use, interrogate and share such data if it is going to be translated into information that may provide important insight into disease susceptibility, disease status, or response to specific medicines. Such information may benefit not only the individual who ‘owns’ the data, but also to the wider scientific community and the population at large.

Why is data sharing important?

The importance of sharing data is evident through the funding of projects such as BioMedBridges and CORBEL.

The objective of these projects is to better enable researchers to access biomedical data and information by facilitating the process of sharing across organisations, scientific sectors and countries.

In their Ethical Governance Framework document, the BioMedBridges project explains the importance of enabling data access, highlighting that increasing the use of data ultimately provides more societal benefit. The example they provide is that of new health research discoveries “through the re-analysis of expensive, rare or unrepeatable investigations”.