The ethics of surveillance raises a number of issues but in PICASO we have focused on stigmatisation and human dignity. Both issues are extremely important in the context of healthcare in general and with specific focus on the patient, notably a chronic patient, in particular. Surveillance, monitoring, stigmatisation and human dignity cannot be separated from a discussion on privacy and protection of personal data, especially as the digitalisation of societies, and of healthcare, increases and spreads.
Deliverable D3.4 Ethical Analysis of Monitoring and Privacy Impact Assessment carried out an ethical analysis of these issues. The analysis was placed in context of the PICASO home-monitoring solutions used by the patients in the two trials. Patients tested and used the home-monitoring solution:
1) to measure and monitor blood pressure, weight and activity (steps per day) using the provided devices and the PICASO App for transferring data to the clinic
2) to monitor well-being and medication adherence with the use of very short questionnaires that were answered directly in the PICASO Patient Dashboard.
The analysis will help the reader understand why it is important to consider the ethical aspects of using surveillance and monitoring technologies in a healthcare context and how the PICASO project has approached these issues. The concept of (human) dignity was also be analysed as it is central to our understanding of privacy and data protection and the threats to these in a digital age. There is a clear link between the analysis and the Ethical Guidelines and Principles in the project.
The deliverable D3.4 Ethical Analysis of Monitoring and Privacy Impact Assessment will be available for download in the “Knowledge Centre” menu after the project’s final review scheduled for August 2019.