Abstract

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.

Highlights

  • 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, fitness and well-being monitoring, patient and carer alerts, among other applications [1]

  • To contribute to the ethical design of the H-IoT, this paper proposes nine ethical principles for the design of H-IoT devices and data protocols: 1

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Summary

Introduction

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. Data that do not directly describe health, but from which health-related inferences can be drawn, appear to fall within the scope, and will likely be subject to greater restrictions and protections as a “special category of personal data” (Article 9 GDPR) Recognising these types of challenges, the H-IoT needs to be designed to be technologically robust and scientifically reliable, while remaining ethically responsible, trustworthy, and respectful of user rights and interests. Ethical design is essential to ensure user interests are afforded sufficient protection by H-IoT devices and data protocols By adopting these guidelines, developers can demonstrate a serious commitment to meeting their legal and moral responsibilities to users, care providers and other stakeholders.

Principles for Ethical Design of the H-IoT
Non-Maleficence and Beneficence
Respect Autonomy and Avoid Subtle Nudging of User Behaviour
Respect Individual Privacy
Respect Group Privacy
Embed Inclusiveness and Diversity in Design
Collect the Minimal Data Desired by Users
Ensure Data Processing Protocols Are Transparent and Accountable
Guidelines for Ethical Design of the H-IoT
Give Users Control over Data Collection and Transmission
Relationship between between Principles
Design Devices and Data Sharing Protocols to Protect User Privacy by Default
Use Alternative Consent Mechanisms when Sharing H-IoT Data
Report the Uncertain Utility of H-IoT Data to Users at the Point of Adoption
Two Examples
H-IoT for Elderly Users
H-IoT for Children
Conclusions
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