Press Release 08/2017
Ethics Council calls for making data sovereignty the guiding principle for big data in the healthcare sector
In an Opinion published today entitled "Big Data and Health – Data Sovereignty as the Shaping of Informational Freedom", the German Ethics Council proposes responsible ways of handling informational freedom when dealing with health-related data, taking into account big data’s opportunities and risks.
Big data, a key term in the current debate on technologically induced social change, describes a way of dealing with large volumes of data that aims to recognise patterns and use them to gain new insights. In the healthcare sector, an increasing number of researchers, companies and doctors are using information gained from big data. In addition, more and more individuals are recording health-related data, using mobile phone apps, for example, or sensors worn on the body. The German Ethics Council has spent two and a half years investigating these developments, discussing them with experts and interested members of the public.
The extensive decontextualisation and recontextualisation of data that are recorded, analysed and recombined for various purposes leads to a blurring of boundaries in health-related areas and is characteristic of big data. The processing of such a wide range of data can be used to provide deep insights into a person’s current state of health, personality and lifestyle, and sometimes even allow for predictions, for example about future illness.
On the one hand, then, the rapidly growing data basis, the concomitant development of innovative digital instruments and the interconnectedness of involved parties opens up opportunities for considerably improved diagnostics, therapy and prevention, enhanced efficiency and efficacy, and the promotion of healthy behaviour. On the other hand, however, variations in data quality, lack of transparency in data flows, loss of control, and uncertainty in requirements of coordination, regulation and qualification are also accompanied by risks. These range from a diminishing of solidarity and diffusion of responsibility to monopolisation and a loss of informational self-determination to data abuse and manipulative actions.
In its Opinion, the German Ethics Council examines such opportunities and risks in five health-related areas of big data application, and analyses the relevant legal standards and ethical aspects. It comes to the conclusion that the means of action and protective mechanisms offered by traditional data protection law can only inadequately address the challenges.
In order to guarantee the protection of and respect for values such as freedom, privacy, sovereignty, beneficence, justice, solidarity and responsibility within the framework of big data, the German Ethics Council recommends a governance concept that is oriented towards data sovereignty. The responsible handling of informational freedom described by the term ‘data sovereignty’ is understood by the Ethics Council as further development of the concept of informational self-determination towards a form of interactive personality development that safeguards privacy in a networked world.
Such a governance model must, more than in the past, take into account the context-dependent and variable sensitivity of data. Within this framework, the German Ethics Council regards the individual data provider as the main object of focus and protection. It considers it the duty of a wide range of institutional and state actors to make a comprehensive effort across society to create legal, paralegal and technological parameters that will allow people to develop and express their data sovereignty.
The proposed concept contains specific recommendations in four subject areas. The aim of these recommendations is firstly to tap the potential of big data, secondly to protect individual freedom and privacy, thirdly to secure justice and solidarity, and fourthly to promote responsibility and trust. The recommended measures should be adopted and financed in the near future.
In a minority vote one member of the German Ethics Council calls for refraining from the use of big data for purposes of research or other applications unless it is possible to guarantee comprehensive data protection, the implementation of effective anonymisation and pseudonymisation standards and the right to be forgotten.
The full text of the Opinion (in German) can be accessed here. Further material provided by the German Ethics Council on the topic of big data (in German) is available here.
A translation of the Opinion will be available in due course.