Bernd Hopfengärtner and Ludwig Zeller offer a speculative view on a Switzerland that decided to realize the right for informational self-determination. In four scenarios that are narrated through objects and speech from the perspectives of inhabitants of that world the cultural potential and consequences of Big Data in the context of medicine, property and literature are exemplified. The project originated through a commission by the Swiss Center for Technology Assessment (TA-SWISS) and was premiered in May 2015 at the H3K in Basel.
Life is Good for Now
The project is a 3D animated future scenario looking at the possible concurrence of mainstream Quantified-Self-style data collection and the full implementation of informational self determination in a near future Switzerland. Informational self determination means every citizen has total control of their personal data, granting or denying access to anyone else. In our scenario this is achieved by installing a high security offline data center in the swiss high Alps. There, detailed lifestyle data sets of every swiss citizen are stored and processed. In close proximity businesses and research centres are located and given access to the facility based on the rights the are granted by the citizens.
As is in so many fields Big Data seems to be the holy grail in public health and precision medicine. Its promise is that treatment costs for diseases can be lowered, prescriptions can be tailored to the actual needs based on the type of a disease, habits and personal genomes. Studying the relation of lifestyle, genomes and social factors on a big scale, recommendation systems can be built, giving advice on how to positively influence people's future health. These kind of systems are already being build although their quality is questionable at this point.
A problem that always seems to arise in that kind of scenario is the transparent citizen, meaning the availability of sensitive data to companies and the state and subsequently the danger of discrimination based on habits or health as a customer or a citizen. Let's assume this is taken care of. Let's assume there would be a functioning model of informational self determination. In our scenario this is implemented by the data center which is introduced in one scene, establishing the setting for three more scenes which speculating about:
1. A sanatorium specialised in the treatment of a psychological condition caused by the paranoid nature of medical predictions. Being unable to tolerate the persistent imminence of ever changing diseases any longer, patients have developed the urge to regain control over their lives by curating the medical conditions leading to their own deaths.
2. A data inheritance. Data collections of people's entire lives are especially valuable. Usually they are bequeathed to research institutes or charitable foundations. Inherited within a family they enable the detailed investigation of relationships and upbringing, from bad habits to the quality of parental love.
3. An interview with a writer creating a new type literature based on her reader's data and by involving them in real world situations that are statistically likely to become interesting sources of inspiration. The interview explores the idea of truth in her work between depiction and construction of reality.
The project was commissioned by TA-Swiss, the Centre for Technology Assessment of the Swiss Academies of Arts and Sciences. It was first presented in the exhibition The Poetics and Politics of Data at the House of Electronic Arts Basel (H3K).
Process In Switzerland there is a vivid discussion about the use of medical data for research purposes. One of the major contributors to this discussion is Prof. Dr. Ernst Hafen of the ETH Zurich. As a founding member of the Association Data and Health he is a strong proponent of informational self-determination developing ways to implement it in the medical context. We consulted with him in order to develop our understanding of the matter and learn about existing ideas on how to implement informational self-determination. We discussed and iterated our scenarios using video drafts, images and stories.
For organising research and ideas we used mural.ly and classic sketch books. Written text were very important. We wrote sketches for scenarios and tried to make one still images at the same time, trying to always think about the setting, possible objects and stories simultaneously.We used Modo and Cinema4D for modelling and animation, After Effects for compositing and Final Cut Pro for editing. The sound was produced with Ableton Live and an analog modular synthesizer. The speech was recorded in the sound studios of the Academy of Media Art Cologne. We used professional as well as non-professional actors.