The amount of data circulating worldwide doubles each year. In the health care sector too, an increasing number of researchers, companies, and doctors are working with huge amounts of data – a trend that is subsumed under the umbrella term big data. In addition, health data are not only collected in doctors' surgeries, hospitals and clinical studies but also recorded by individuals using mobile phone apps or body-sensors and sharing the results on social networks or in online "diaries".
At the same time, the possibilities of decontextualising, recombining and evaluating these data fast and effectively for various purposes are growing rapidly. The processing of such a wide range of recombinable health-related data – e.g. people's purchasing behaviour, online search queries, location data, or the analysis of text, speech, and video material – can provide deep insights into a person's lifestyle and their current state of health.
Facing the challenges that come along with this trend, the German Ethics Council has published an Opinion, showing how this wide-ranging and often unnoticed collection of health-related data affects our self-perception, freedom, and self-determination: How can individuals, scientists, and companies work with and handle these data responsibly? How can the quality and reliability of complex data analyses be ensured? Which regulatory measures or incentives are necessary to guarantee an appropriate handling of the chances and risks of big data in the healthcare sector?
Working group (dissolved after publication of the Opinion)
Steffen Augsberg (Chair of the Group)
Peter Dabrock (Vice-Chair of the Group)
Carl Friedrich Gethmann
External member: Prof. Dr. Thomas Hofmann · Data Analytics Laboratory, ETH Zürich