Towards value sensitive dynamic e-consent in eHealth solutions

Current traditional informed e-consent is seen as a one-time agreement for participating in a research project over a limited period of time. Within the context of Citizen Science, research is done in a significantly different way, with a lot more variables in play, which makes it more complex, thus, traditional informed e-consent is not a good approach for it. A new solution is necessary that is more dynamic and allows for more personalisation as to fit all the data usage contexts of Citizen Science. A prototype for a solution combining dynamic e-consent with user values, needs and expectations was developed. This implementation has been tested twice, using two different prototypes. The results showed a very positive reception of implementing dynamic consent and a good indication that combining it with a user-centred focus is beneficial. Moreover, the research done shows that such a solution can work and a good design for it would most likely implement a focus on user values, needs and expectations. There is still room for improvement, so such systems should be explored more in research perhaps with a particular focus on personification. Regardless, this thesis provides a good first step in the relative infancy of such systems.