Designing the Health-related Internet of Things: Ethical Principles and Guidelines

The conjunction of wireless computing, ubiquitous Internet access, and the miniaturisation of sensors have opened the door for technological applications that can monitor health and well-being outside of formal healthcare systems. The health-related Internet of Things (H-IoT) increasingly plays a key role in health management by providing real-time tele-monitoring of patients, testing of treatments, actuation of medical devices, and fitness and well-being monitoring. Given its numerous applications and proposed benefits, adoption by medical and social care institutions and consumers may be rapid. However, a host of ethical concerns are also raised that must be addressed. The inherent sensitivity of health-related data being generated and latent risks of Internet-enabled devices pose serious challenges. Users, already in a vulnerable position as patients, face a seemingly impossible task to retain control over their data due to the scale, scope and complexity of systems that create, aggregate, and analyse personal health data. In response, the H-IoT must be designed to be technologically robust and scientifically reliable, while also remaining ethically responsible, trustworthy, and respectful of user rights and interests. To assist developers of the H-IoT, this paper describes nine principles and nine guidelines for ethical design of H-IoT devices and data protocols

Ethics of the health-related internet of things: a narrative review

The internet of things is increasingly spreading into the domain of medical and social care. Internet-enabled devices for monitoring and managing the health and well-being of users outside of traditional medical institutions have rapidly become common tools to support healthcare. Health-related internet of things (H-IoT) technologies increasingly play a key role in health management, for purposes including disease prevention, real-time tele-monitoring of patient’s functions, testing of treatments, fitness and well-being monitoring, medication dispensation, and health research data collection. H-IoT promises many benefits for health and healthcare. However, it also raises a host of ethical problems stemming from the inherent risks of Internet enabled devices, the sensitivity of health-related data, and their impact on the delivery of healthcare. This paper maps the main ethical problems that have been identified by the relevant literature and identifies key themes in the on-going debate on ethical problems concerning H-IoT

On the Ethical Implications of Personal Health Monitoring

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.he research described in this thesis was sponsored and funded by the Centre for Computing and Social Responsibility of De Montfort University, and was linked to the research carried out in FP7 research projects PHM-Ethics (GA 230602) and ETICA (Ethical Issues of Emerging ICT Applications, GA 230318)