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The amount of data circulating worldwide is growing rapidly. More and more devices are equipped with sensors and microchips, thus collecting data. At the same time, thanks to powerful processors, data centres, networks and algorithms, the opportunities for analysing large amounts of data quickly and effectively and for combining data from many different sources are increasing. Such approaches are also referred to as “big data”. Especially when many different types of data are brought together, deep insights can be gained into personal characteristics, circumstances and preferences. Digital representations are created both of individual persons – in medicine, for example – and of groups, for instance by companies analysing consumer preferences in order to provide individualised advertising or other recommendations to groups with similar user characteristics.
There are both opportunities and risks associated with utilising these possibilities. This is particularly evident in the healthcare sector. The availability of comprehensive health data can improve medical research and care. However, because they represent highly sensitive information worthy of protection, effective data security is particularly important. In practice, there is often uncertainty regarding the scope and interpretation of existing regulations. This can result in health data not being used, even though it would be legally permitted and even mandatory in view of patient welfare.
In addition, health data are no longer only collected in doctors’ surgeries and clinical studies, but also collected by private individuals – be it via fitness trackers and apps or social networks. Even data that at first glance have nothing to do with health can become medically relevant when viewed together, for example information about shopping behaviour, search queries on the internet, location data or the analysis of text, voice and video materials. However, unlike in the medical context, privately collected data, just like data traces on the Internet, can be used by commercial players, who sometimes have to comply with different data privacy standards.
From an ethical point of view, the question arises as to how the more and more continuous and often barely noticeable collection of (not just) health-related data affects our sense of self, freedom, and self-determination: How can individuals, researchers and companies handle such data responsibly? How can the quality and reliability of complex data analyses be ensured? What regulatory mechanisms or incentives can be used to appropriately manage the opportunities and risks of big data in the healthcare sector?
