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

Ethical Reflections of Human Brain Research and Smart Information Systems

open access journalThis case study explores ethical issues that relate to the use of Smart Infor-mation Systems (SIS) in human brain research. The case study is based on the Human Brain Project (HBP), which is a European Union funded project. The project uses SIS to build a research infrastructure aimed at the advancement of neuroscience, medicine and computing. The case study was conducted to assess how the HBP recognises and deal with ethical concerns relating to the use of SIS in human brain research. To under-stand some of the ethical implications of using SIS in human brain research, data was collected through a document review and three semi-structured interviews with partic-ipants from the HBP. Results from the case study indicate that the main ethical concerns with the use of SIS in human brain research include privacy and confidentiality, the security of personal data, discrimination that arises from bias and access to the SIS and their outcomes. Furthermore, there is an issue with the transparency of the processes that are involved in human brain research. In response to these issues, the HBP has put in place different mechanisms to ensure responsible research and innovation through a dedicated pro-gram. The paper provides lessons for the responsible implementation of SIS in research, including human brain research and extends some of the mechanisms that could be employed by researchers and developers of SIS for research in addressing such issues

A Short Review of Ethical Challenges in Clinical Natural Language Processing

Clinical NLP has an immense potential in contributing to how clinical practice will be revolutionized by the advent of large scale processing of clinical records. However, this potential has remained largely untapped due to slow progress primarily caused by strict data access policies for researchers. In this paper, we discuss the concern for privacy and the measures it entails. We also suggest sources of less sensitive data. Finally, we draw attention to biases that can compromise the validity of empirical research and lead to socially harmful applications.Comment: First Workshop on Ethics in Natural Language Processing (EACL'17

Rights in a Cloud of Dust: The Value and Qualities of Farm Data and How Its Property Rights Should Be Viewed Moving Forward

Historically, technology growth has been slower in agriculture than other industries. However, a rising demand for food and an increase in efficient farm practices has changed this, leading to a rise in precision farming technologies. Now, entities that provide services or information to farmers need precision farming technologies to compete, and more farmers are adopting precision farming technologies. These technologies help farmers, but questions still remain about ownership rights in the data that farmers create

End-to-End Privacy for Open Big Data Markets

The idea of an open data market envisions the creation of a data trading model to facilitate exchange of data between different parties in the Internet of Things (IoT) domain. The data collected by IoT products and solutions are expected to be traded in these markets. Data owners will collect data using IoT products and solutions. Data consumers who are interested will negotiate with the data owners to get access to such data. Data captured by IoT products will allow data consumers to further understand the preferences and behaviours of data owners and to generate additional business value using different techniques ranging from waste reduction to personalized service offerings. In open data markets, data consumers will be able to give back part of the additional value generated to the data owners. However, privacy becomes a significant issue when data that can be used to derive extremely personal information is being traded. This paper discusses why privacy matters in the IoT domain in general and especially in open data markets and surveys existing privacy-preserving strategies and design techniques that can be used to facilitate end to end privacy for open data markets. We also highlight some of the major research challenges that need to be address in order to make the vision of open data markets a reality through ensuring the privacy of stakeholders.Comment: Accepted to be published in IEEE Cloud Computing Magazine: Special Issue Cloud Computing and the La

Redescribing Health Privacy: The Importance of Health Policy

Current conversations about health information policy often tend to be based on three broad assumptions. First, many perceive a tension between regulation and innovation. We often hear that privacy regulations are keeping researchers, companies, and providers from aggregating the data they need to promote innovation. Second, aggregation of fragmented data is seen as a threat to its proper regulation, creating the risk of breaches and other misuse. Third, a prime directive for technicians and policymakers is to give patients ever more granular methods of control over data. This article questions and complicates those assumptions, which I deem (respectively) the Privacy Threat to Research, the Aggregation Threat to Privacy, and the Control Solution. This article is also intended to enrich our concepts of “fragmentation” and “integration” in health care. There is a good deal of sloganeering around “firewalls” and “vertical integration” as idealized implementations of “fragmentation” and “integration” (respective). The problem, though, is that terms like these (as well as “disruption”) are insufficiently normative to guide large-scale health system change. They describe, but they do not adequately prescribe. By examining those instances where: a) regulation promotes innovation, and b) increasing (some kinds of) availability of data actually enhances security, confidentiality, and privacy protections, this article attempts to give a richer account of the ethics of fragmentation and integration in the U.S. health care system. But, it also has a darker side, highlighting the inevitable conflicts of values created in a “reputation society” driven by stigmatizing social sorting systems. Personal data control may exacerbate social inequalities. Data aggregation may increase both our powers of research and our vulnerability to breach. The health data policymaking landscape of the next decade will feature a series of intractable conflicts between these important social values

Visions and Challenges in Managing and Preserving Data to Measure Quality of Life

Health-related data analysis plays an important role in self-knowledge, disease prevention, diagnosis, and quality of life assessment. With the advent of data-driven solutions, a myriad of apps and Internet of Things (IoT) devices (wearables, home-medical sensors, etc) facilitates data collection and provide cloud storage with a central administration. More recently, blockchain and other distributed ledgers became available as alternative storage options based on decentralised organisation systems. We bring attention to the human data bleeding problem and argue that neither centralised nor decentralised system organisations are a magic bullet for data-driven innovation if individual, community and societal values are ignored. The motivation for this position paper is to elaborate on strategies to protect privacy as well as to encourage data sharing and support open data without requiring a complex access protocol for researchers. Our main contribution is to outline the design of a self-regulated Open Health Archive (OHA) system with focus on quality of life (QoL) data.Comment: DSS 2018: Data-Driven Self-Regulating System

Guest Editorial: Ethics and Privacy in Learning Analytics

The European Learning Analytics Community Exchange (LACE) project is responsible for an ongoing series of workshops on ethics and privacy in learning analytics (EP4LA), which have been responsible for driving and transforming activity in these areas. Some of this activity has been brought together with other work in the papers that make up this special issue. These papers cover the creation and development of ethical frameworks, as well as tools and approaches that can be used to address issues of ethics and privacy. This editorial suggests that it is worth taking time to consider the often intertangled issues of ethics, data protection and privacy separately. The challenges mentioned within the special issue are summarised in a table of 22 challenges that are used to identify the values that underpin work in this area. Nine ethical goals are suggested as the editors’ interpretation of the unstated values that lie behind the challenges raised in this paper

The ethics of uncertainty for data subjects

Modern health data practices come with many practical uncertainties. In this paper, I argue that data subjects’ trust in the institutions and organizations that control their data, and their ability to know their own moral obligations in relation to their data, are undermined by significant uncertainties regarding the what, how, and who of mass data collection and analysis. I conclude by considering how proposals for managing situations of high uncertainty might be applied to this problem. These emphasize increasing organizational flexibility, knowledge, and capacity, and reducing hazard