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

Analytical Framework for a Comparative Analysis of Accessible Technology Law and Policy

Deliverable 7.1 poses the basis of the comparative analysis to be conducted throughout the whole WP 7 and reviews existing studies on accessible technology and accessibility law and policy in Czech Republic, Germany, Ireland, Italy, Norway, Serbia, Sweden and the UK. Deliverable 7.1 is divided into two main sections: an Analytical Framework and an Annotated Bibliography. The Analytical Framework discusses the interrelation between accessible technology and ‘active citizenship’, and defines the scope, the main concepts and the methodology of the research conducted under WP 7. It also positions WP7 within current legal scholarship, highlighting its innovative contribution. The Annotated Bibliography, annexed to the Analytical Framework is composed of two main complementary parts (i.e. parts A and B), each one preceded by a roadmap. Part A reviews selected sources on accessibility law and policy in Czech Republic, Germany, Ireland, Italy, Norway, Serbia, Sweden and the UK. Even though it cannot be regard as exhaustive, it aims to give a ‘big picture’ of current official legislation and policy on accessibility, and scholarship on accessibility. It is intended to be an immediate and easy to read bibliographic tool for scholars approaching accessibility law and policy in Europe. Part B has complements Part A: it does not list legislation or policy programmes on accessible technology, but focusses on the most recent literature on accessible technology

State of the art on ethical, legal, and social issues linked to audio- and video-based AAL solutions - Uploaded on December 29, 2021

Ambient assisted living (AAL) technologies are increasingly presented and sold as essential smart additions to daily life and home environments that will radically transform the healthcare and wellness markets of the future. An ethical approach and a thorough understanding of all ethics in surveillance/monitoring architectures are therefore pressing. AAL poses many ethical challenges raising questions that will affect immediate acceptance and long-term usage. Furthermore, ethical issues emerge from social inequalities and their potential exacerbation by AAL, accentuating the existing access gap between high-income countries (HIC) and low and middle-income countries (LMIC). Legal aspects mainly refer to the adherence to existing legal frameworks and cover issues related to product safety, data protection, cybersecurity, intellectual property, and access to data by public, private, and government bodies. Successful privacy-friendly AAL applications are needed, as the pressure to bring Internet of Things (IoT) devices and ones equipped with artificial intelligence (AI) quickly to market cannot overlook the fact that the environments in which AAL will operate are mostly private (e.g., the home). The social issues focus on the impact of AAL technologies before and after their adoption. Future AAL technologies need to consider all aspects of equality such as gender, race, age and social disadvantages and avoid increasing loneliness and isolation among, e.g. older and frail people. Finally, the current power asymmetries between the target and general populations should not be underestimated nor should the discrepant needs and motivations of the target group and those developing and deploying AAL systems. Whilst AAL technologies provide promising solutions for the health and social care challenges, they are not exempt from ethical, legal and social issues (ELSI). A set of ELSI guidelines is needed to integrate these factors at the research and development stage

State of the art on ethical, legal, and social issues linked to audio- and videobased AAL solutions

Working Group 1. Social responsibility: Ethical, legal, social, data protection and privacy issuesAbstract Ambient assisted living (AAL) technologies are increasingly presented and sold as essential smart additions to daily life and home environments that will radically transform the healthcare and wellness markets of the future. An ethical approach and a thorough understanding of all ethics in surveillance/monitoring architectures are therefore pressing. AAL poses many ethical challenges raising questions that will affect immediate acceptance and long-term usage. Furthermore, ethical issues emerge from social inequalities and their potential exacerbation by AAL, accentuating the existing access gap between high-income countries (HIC) and low and middle-income countries (LMIC). Legal aspects mainly refer to the adherence to existing legal frameworks and cover issues related to product safety, data protection, cybersecurity, intellectual property, and access to data by public, private, and government bodies. Successful privacy-friendly AAL applications are needed, as the pressure to bring Internet of Things (IoT) devices and ones equipped with artificial intelligence (AI) quickly to market cannot overlook the fact that the environments in which AAL will operate are mostly private (e.g., the home). The social issues focus on the impact of AAL technologies before and after their adoption. Future AAL technologies need to consider all aspects of equality such as gender, race, age and social disadvantages and avoid increasing loneliness and isolation among, e.g. older and frail people. Finally, the current power asymmetries between the target and general populations should not be underestimated nor should the discrepant needs and motivations of the target group and those developing and deploying AAL systems. Whilst AAL technologies provide promising solutions for the health and social care challenges, they are not exempt from ethical, legal and social issues (ELSI). A set of ELSI guidelines is needed to integrate these factors at the research and development stage. Keywords Ethical principles, Privacy, Assistive Living Technologies, Privacy by Design, General Data Protection Regulation.publishedVersio

Machines with Heart: Utilizing an STS Framework to Analyze Implementation and Design of Social Eldercare Robots in Germany and Japan

Robots are everywhere from car factories to cafes, but many people may not realize robots are quite popular in assisted living residencies for older adults. Social eldercare robots (SER) provide care to older adults without relying on human labor, offering a lucrative promise of technological efficiency during global labor crises. However, their adaptation into care settings is not this simple. Human trust in robots is rooted in nuanced social, cultural, and historical factors, making SER a highly interpretively flexible technology. This thesis analyzes social eldercare robot implementation in two countries, Germany and Japan, using a Science, Technology and Society (STS) framework. By investigating how service animals, perception of migrant labor, and religious factors impact social eldercare robot use, I argue acceptance of SER is highly bound to local beliefs about caretaking, spirituality, and what it truly means to be alive

Glossary of terms relating to children’s digital lives

The Digital Futures Commission created this glossary for researchers, policymakers and practitioners concerned with children’s digital lives. It concentrates on the topics addressed in our three workstreams: play, education data and innovation. To construct the glossary, we have been informed by definitions developed across different disciplines and domains

Ethical issues in assistive ambient living technologies for ageing well

Assistive Ambient Living (AAL) in ageing refers to any device used to support ageing related psychological and physical changes aimed at improving seniors’ quality of life and reducing caregivers’ burdens. The diffusion of these devices opens the ethical issues related to their use in the human personal space. This is particularly relevant when AAL technologies are devoted to the ageing population that exhibits special bio-psycho-social aspects and needs. In spite of this, relatively little research has focused on ethical issues that emerge from AAL technologies. The present article addresses ethical issues emerging when AAL technologies are implemented for assisting the elderly population and is aimed at raising awareness of these aspects among healthcare providers. The overall conclusion encourages a person-oriented approach when designing healthcare facilities. This process must be fulfilled in compliance with the general principles of ethics and individual nature of the person devoted to. This perspective will develop new research paradigms, paving the way for fulfilling essential ethical principles in the development of future generations of personalized AAL devices to support ageing people living independently at their home

Use of nonintrusive sensor-based information and communication technology for real-world evidence for clinical trials in dementia

Cognitive function is an important end point of treatments in dementia clinical trials. Measuring cognitive function by standardized tests, however, is biased toward highly constrained environments (such as hospitals) in selected samples. Patient-powered real-world evidence using information and communication technology devices, including environmental and wearable sensors, may help to overcome these limitations. This position paper describes current and novel information and communication technology devices and algorithms to monitor behavior and function in people with prodromal and manifest stages of dementia continuously, and discusses clinical, technological, ethical, regulatory, and user-centered requirements for collecting real-world evidence in future randomized controlled trials. Challenges of data safety, quality, and privacy and regulatory requirements need to be addressed by future smart sensor technologies. When these requirements are satisfied, these technologies will provide access to truly user relevant outcomes and broader cohorts of participants than currently sampled in clinical trials

State of the art of audio- and video based solutions for AAL

Working Group 3. Audio- and Video-based AAL ApplicationsIt is a matter of fact that Europe is facing more and more crucial challenges regarding health and social care due to the demographic change and the current economic context. The recent COVID-19 pandemic has stressed this situation even further, thus highlighting the need for taking action. Active and Assisted Living (AAL) technologies come as a viable approach to help facing these challenges, thanks to the high potential they have in enabling remote care and support. Broadly speaking, AAL can be referred to as the use of innovative and advanced Information and Communication Technologies to create supportive, inclusive and empowering applications and environments that enable older, impaired or frail people to live independently and stay active longer in society. AAL capitalizes on the growing pervasiveness and effectiveness of sensing and computing facilities to supply the persons in need with smart assistance, by responding to their necessities of autonomy, independence, comfort, security and safety. The application scenarios addressed by AAL are complex, due to the inherent heterogeneity of the end-user population, their living arrangements, and their physical conditions or impairment. Despite aiming at diverse goals, AAL systems should share some common characteristics. They are designed to provide support in daily life in an invisible, unobtrusive and user-friendly manner. Moreover, they are conceived to be intelligent, to be able to learn and adapt to the requirements and requests of the assisted people, and to synchronise with their specific needs. Nevertheless, to ensure the uptake of AAL in society, potential users must be willing to use AAL applications and to integrate them in their daily environments and lives. In this respect, video- and audio-based AAL applications have several advantages, in terms of unobtrusiveness and information richness. Indeed, cameras and microphones are far less obtrusive with respect to the hindrance other wearable sensors may cause to one’s activities. In addition, a single camera placed in a room can record most of the activities performed in the room, thus replacing many other non-visual sensors. Currently, video-based applications are effective in recognising and monitoring the activities, the movements, and the overall conditions of the assisted individuals as well as to assess their vital parameters (e.g., heart rate, respiratory rate). Similarly, audio sensors have the potential to become one of the most important modalities for interaction with AAL systems, as they can have a large range of sensing, do not require physical presence at a particular location and are physically intangible. Moreover, relevant information about individuals’ activities and health status can derive from processing audio signals (e.g., speech recordings). Nevertheless, as the other side of the coin, cameras and microphones are often perceived as the most intrusive technologies from the viewpoint of the privacy of the monitored individuals. This is due to the richness of the information these technologies convey and the intimate setting where they may be deployed. Solutions able to ensure privacy preservation by context and by design, as well as to ensure high legal and ethical standards are in high demand. After the review of the current state of play and the discussion in GoodBrother, we may claim that the first solutions in this direction are starting to appear in the literature. A multidisciplinary 4 debate among experts and stakeholders is paving the way towards AAL ensuring ergonomics, usability, acceptance and privacy preservation. The DIANA, PAAL, and VisuAAL projects are examples of this fresh approach. This report provides the reader with a review of the most recent advances in audio- and video-based monitoring technologies for AAL. It has been drafted as a collective effort of WG3 to supply an introduction to AAL, its evolution over time and its main functional and technological underpinnings. In this respect, the report contributes to the field with the outline of a new generation of ethical-aware AAL technologies and a proposal for a novel comprehensive taxonomy of AAL systems and applications. Moreover, the report allows non-technical readers to gather an overview of the main components of an AAL system and how these function and interact with the end-users. The report illustrates the state of the art of the most successful AAL applications and functions based on audio and video data, namely (i) lifelogging and self-monitoring, (ii) remote monitoring of vital signs, (iii) emotional state recognition, (iv) food intake monitoring, activity and behaviour recognition, (v) activity and personal assistance, (vi) gesture recognition, (vii) fall detection and prevention, (viii) mobility assessment and frailty recognition, and (ix) cognitive and motor rehabilitation. For these application scenarios, the report illustrates the state of play in terms of scientific advances, available products and research project. The open challenges are also highlighted. The report ends with an overview of the challenges, the hindrances and the opportunities posed by the uptake in real world settings of AAL technologies. In this respect, the report illustrates the current procedural and technological approaches to cope with acceptability, usability and trust in the AAL technology, by surveying strategies and approaches to co-design, to privacy preservation in video and audio data, to transparency and explainability in data processing, and to data transmission and communication. User acceptance and ethical considerations are also debated. Finally, the potentials coming from the silver economy are overviewed.publishedVersio