Doctoral Thesis by Brent Daniel Mittelstadt.
Centre for Computing and Social Responsibility. De Montfort University, Leicester, UK.
Recent years have seen an influx of medical technologies capable of remotely monitoring the health and behaviours of individuals to detect, manage and prevent health problems. Known collectively as personal health monitoring (PHM), these systems are intended to supplement medical care with health monitoring outside traditional care environments such as hospitals, ranging in complexity from mobile devices to complex networks of sensors measuring physiological parameters and behaviours. This research project assesses the potential ethical implications of PHM as an emerging medical technology, amenable to anticipatory action intended to prevent or mitigate problematic ethical issues in the future.
PHM fundamentally changes how medical care can be delivered: patients can be monitored and consulted at a distance, eliminating opportunities for face-to-face actions and potentially undermining the importance of social, emotional and psychological aspects of medical care. The norms evident in this movement may clash with existing standards of ‘good’ medical practice from the perspective of patients, clinicians and institutions. By relating utilitarianism, virtue ethics and theories of surveillance to Habermas’ concept of colonisation of the lifeworld, a conceptual framework is created which can explain how PHM may be allowed to change medicine as a practice in an ethically problematic way. The framework relates the inhibition of virtuous behaviour among practitioners of medicine, understood as a moral practice, to the movement in medicine towards remote monitoring.
To assess the explanatory power of the conceptual framework and expand its borders, a qualitative interview empirical study with potential users of PHM in England is carried out. Recognising that the inherent uncertainty of the future undermines the validity of empirical research, a novel epistemological framework based in Habermas’ discourse ethics is created to justify the empirical study. By developing Habermas’ concept of translation into a procedure for assessing the credibility of uncertain normative claims about the future, a novel methodology for empirical ethical assessment of emerging technologies is created and tested. Various methods of analysis are employed, including review of academic discourses, empirical and theoretical analyses of the moral potential of PHM. Recommendations are made concerning ethical issues in the deployment and design of PHM systems, analysis and application of PHM data, and the shortcomings of existing research and protection mechanisms in responding to potential ethical implications of the technology.