Data Donor Register


Experiment

The Data Donation Register (DDR) is developed to provide data ownership for the users of Prosthetic X.

However, the Data Donor Register has value on its own and is broader applicable towards wearables and IoT devices. Therefore, it is being developed as an additional project.

It is important to take into consideration when developing ‘data gathering devices’ where the data-ownership is located and how the data is treated. To do so in a responsible way, the data should be owned by the user.
Therefore, a wearable/ IoT device should not own your data and should be programmed in such a way that misuse of data is impossible.
You, the user, own your data, and you decide what purpose it will serve. The Data Donation Register supports you in defining your own, personal, terms of service. It gives you the power to truly decide what data you wish to share and with whom.

Data collected by your wearable is valuable to you as well as to others.
For yourself, it can act as an early warning for ill health. For your family, it can put them at ease knowing you are both happy and healthy. For your doctors and caretakers, it can help them 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. Therefore, your data is of great value and it is important to be able to choose who receives access to your 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.

The development of the DDR is a collaboration with Isaac Monté and supported by the SIDNfonds