The phrase “digital self-measurement” or “quantified self” describes a mass market that contains both opportunities and dangers for society. Beyond personal applications (such as fitness trackers), self-measurement tools may also be employed in the realm of telemedicine.

The research project TESTER (Digitale Selbstvermessung selbstbestimmt gestalten) pursued the goal to investigate a privacy assistant as a demonstrator with the purpose of establishing transparency and intervenability in relation to data obtained from self-measurement. To achieve transparency, personalized processing of self-measurement data and facilitation of rights to handle said data for self-measurers through user-friendly tools was necessary.

The aim of the legal sub-project at the University of Kassel was to design a privacy assistant that complies with legal requirements. This was accomplished through the four-step KORA process to concretize legal mandates. Initial identification of legal risks and opportunities was followed by the formulation of regulatory requirements. These requirements were then transformed into specific legal criteria which inform technical design objectives and proposals, developed in close collaboration with technical partners.

From a legal standpoint, there has been ongoing discussion on how to effectively manage the rising complexity of ubiquitous data processing, including the overwhelming barrage of information (data protection declarations) and the imminent presence of consent declarations, with the aid of suitable technical support. Furthermore, a broader discourse has emerged concerning general legal matters relating to software assistants. This encompasses specific matters, including consumer protection law. However, the discussion regarding lawful potentialities and restrictions of privacy assistants, and their integration into the European Union's data protection law established by the General Data Protection Regulation is currently in its early stages. The project was able to gain insights from corresponding preliminary research conducted thus far. However, further elaboration on this matter was required. The connection between self-measurement technologies and the legal concerns they raise in the health industry has not yet been clearly determined.

Moreover, there were allusions to the general legal discourse on wearables, fitness trackers, et cetera. There was potential for further research, particularly in relation to the utilization of health-oriented data. However, these guidelines usually aimed to strictly comply with data minimisation and therefore avoid personal data. Conversely, the TESTER project focused specifically on the self-determined disclosure of such data.

Additional legal issues arose in telemedicine, such as dealing with individuals who opt out of self-measurement. In addition, the question of whether or not the health insurance tariffs for “self-insurers” are permissible in this scenario had to be examined.

The Fraunhofer Institute for Industrial Engineering (IAO) coordinated this project, with additional partners including Actimi GmbH and the University of Stuttgart, Institute of Human Factors and Technology Management (IAT).

Further details can be found on the website of the Federal Ministry of Education and Research.

Funding:
Federal Ministry of Education and Research

Duration:
August 2021 - November 2024

Project leader:
Prof. Dr. Gerrit Hornung, LL.M.

Staff:
Fabiola Böning