Data collection and storage, the process of combining different sets of data, and the use and application of data promise great progress in medicine, but also entail ethical and legal challenges.
"Let us work together to ensure that people do not leave themselves behind as a result of the biologization and numerification of their self-perception and their lifestyle, or as a result of data-driven efficiency hype and optimization mania, but that they are able to find themselves and come together with others in a fulfilled life", said the Chair of the German Ethics Council, Christiane Woopen, at the start of the conference.
The presentations in the morning focused on epistemological principles, on the socio-political perspective, ethical considerations and considerations of data protection. The Vice-Chair, Peter Dabrock, expressed the fear that, without international regulation, the quantitative expansion of big-data-driven prognoses could lead to a qualitative loss of freedom – a loss of freedom that was, however, being sold as an increase in self-determination.
There was broad consensus among the speakers that there is an urgent need for social debate, both on the benefits and opportunities and on the shortcomings and risks that arise from the availability of comprehensive sets of data, especially in a medical context.
European Commissioner Günther Oettinger observed in his keynote speech: "If you examine the entire value chain, we Europeans have too little digital sovereignty, too little digital authority and too much digital import." He stressed the importance of a European digital union and held out the prospect that the General Data Protection Regulation would soon be passed. He invited the German Ethics Council to help shape the debate on a European level as well.
In the afternoon, the conference participants discussed three key topics on parallel panels: "Life-Logging and Self-Tracking", "Research on the Open Data Sea" and "The Patient as a Dataset".
The results of the panels were then discussed in greater detail in a final panel discussion on the topic of "Big Data = Big Health?".
In her closing remarks, Council member Katrin Amunts said that the results reinforced the German Ethics Council’s intention to continue to pursue the ethical and other normative questions raised and to publish an opinion on the topic.