Data Donation Register

During the Dutch Design Week 2020, Oct 17-25, the project Prosthetic X  presents the first three proof-of-concepts of the prosthetics and the Data Donation Register.

Since Prosthetic X envision an ‘artificial data organ’, consisting of interactive prosthetics that use sensitive data for communication and preventive health monitoring, it should be designed for privacy. Therefore, in parallel, we develop the Data Donation Register.

The Data Donation Register is developed to provide data ownership for the users of Prosthetic X. However, Prosthetic X does not own the data and is programmed in such a way that misuse of data is impossible. The user should own the data and decides what purpose it will serve. The Data Donation Register, or DDR, supports in defining user centred terms of service. It gives the power to the user to truly decide who receives what access to the personal data in life and in death.

Hence, the Data Donor Register enables informed consent on data sharing. It defines the data donation rules and provides a legal framework to create user centred terms of service, in which the user is empowered to change its choice at any moment. It serves as an example of human-centric privacy policy and therefore, has a broader relevance, since it proposes user centred terms of service, that would require industry to change their policies and terms of service.

The Data Donor Register is work in progress and we are interested in your thoughts and feedback.

Below, we show a first draft in which we describe how the data can be of value.

For the user, it can act as an early warning for ill health. For family and friends, it can put them at ease. For medical professionals and caretakers, it can help to optimise diagnosis and treatment. For researchers, it can lead to new insights and knowledge. Finally, for commercial companies it can mean targeted marketing and improved algorithms.
Each choice would be supported with a seperate form stating the type of data and the purpose. Furthermore, the register would enable the user to select with whom the data is shared and this can be changed at any moment.