Personal Genomes in Practice:Exploring Citizen and Healthcare Professionals’ Perspectives on Personalized Genomic Medicine and Personal Health Data Spaces Using a Mixed-Methods Design

Ongoing health challenges, such as the increased global burden of chronic disease, are increasingly answered by calls for personalized approaches to healthcare. Genomic medicine, a vital component of these personalization strategies, is applied in risk assessment, prevention, prognostication, and therapeutic targeting. However, several practical, ethical, and technological challenges remain. Across Europe, Personal Health Data Space (PHDS) projects are under development aiming to establish patient-centered, interoperable data ecosystems balancing data access, control, and use for individual citizens to complement the research and commercial focus of the European Health Data Space provisions. The current study explores healthcare users’ and health care professionals’ perspectives on personalized genomic medicine and PHDS solutions, in casu the Personal Genetic Locker (PGL). A mixed-methods design was used, including surveys, interviews, and focus groups. Several meta-themes were generated from the data: (i) participants were interested in genomic information; (ii) participants valued data control, robust infrastructure, and sharing data with non-commercial stakeholders; (iii) autonomy was a central concern for all participants; (iv) institutional and interpersonal trust were highly significant for genomic medicine; and (v) participants encouraged the implementation of PHDSs since PHDSs were thought to promote the use of genomic data and enhance patients’ control over their data. To conclude, we formulated several facilitators to implement genomic medicine in healthcare based on the perspectives of a diverse set of stakeholders.</p

Managing Sensitive Ecosystems: Honsinger v. State and the Need for Flexibility in the Rules of Real Property

The world’s increased energy storage demand, as well as the environmental concerns related to the combustion of fossil fuels, has triggered a transition to intermittent renewable energy sources as well as to electrical and hybrid vehicles. Current day rechargeable batteries are, due to the invention and development of lithium ion batteries, technologically well positioned to answer to some of these demands. Conventional batteries, however, utilize inorganic materials of limited supply that require large amounts of energy during refining and processing. The materials also add a significant cost to the final product, making the rechargeable batteries less attractive for large scale applications. During the last decade, significant efforts have been made to find suitable organic matter based electrode materials that can replace the inorganic materials. One class of organic materials that can be used for electrical energy storage, or be included as components in organic matter based energy storage systems, is conducting polymers. The aim of this thesis was to investigate the possibilities and limitations of using the conducting polymer polypyrrole in energy storage applications. The polymer was synthesized onto cellulose extracted from the Cladophora sp. algae, and the result was a flexible composite material. Symmetrical energy storage devices constructed with the composite material were shown to exhibit a pseudocapacitive behavior. The resistance in the cells was investigated and was found to scale linearly with the separator thickness. Cells could be cycled for 4,000 cycles without significant capacitance loss and cells that were overcharged to 1.8 V cell potential, were found to be protected by a resistive potential drop. Devices were constructed as proof-of-concept and were used to power a remote control and a digital thermometer. The self-discharge in polypyrrole was studied extensively. It was found that oxygen was responsible for the oxidation of the reduced electrode, while the positive electrode self-discharged due to a faradaic reaction. Through spectroscopy and the temperature dependence of the self-discharge, it was suggested that the self-discharge of oxidized polypyrrole is linked to the degradation at high potentials, commonly referred to as overoxidation

Socially Trusted Collaborative Edge Computing in Ultra Dense Networks

Small cell base stations (SBSs) endowed with cloud-like computing capabilities are considered as a key enabler of edge computing (EC), which provides ultra-low latency and location-awareness for a variety of emerging mobile applications and the Internet of Things. However, due to the limited computation resources of an individual SBS, providing computation services of high quality to its users faces significant challenges when it is overloaded with an excessive amount of computation workload. In this paper, we propose collaborative edge computing among SBSs by forming SBS coalitions to share computation resources with each other, thereby accommodating more computation workload in the edge system and reducing reliance on the remote cloud. A novel SBS coalition formation algorithm is developed based on the coalitional game theory to cope with various new challenges in small-cell-based edge systems, including the co-provisioning of radio access and computing services, cooperation incentives, and potential security risks. To address these challenges, the proposed method (1) allows collaboration at both the user-SBS association stage and the SBS peer offloading stage by exploiting the ultra dense deployment of SBSs, (2) develops a payment-based incentive mechanism that implements proportionally fair utility division to form stable SBS coalitions, and (3) builds a social trust network for managing security risks among SBSs due to collaboration. Systematic simulations in practical scenarios are carried out to evaluate the efficacy and performance of the proposed method, which shows that tremendous edge computing performance improvement can be achieved.Comment: arXiv admin note: text overlap with arXiv:1010.4501 by other author

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

Data protection and the legitimate interest of data controllers: much ado about nothing or the winter of rights?

EU data protection law is in a process of reform to meet the challenges of the modern economy and rapid technological developments. This study analyses the legitimate interest of data controllers as a legal basis for processing personal data under both the current data protection legislation and its proposed reform. The relevant provision expands the scope of lawful processing, but is formulated ambiguously, creating legal uncertainty and loopholes in the law. The new proposed regime does not resolve the problem.Taking a“rights” perspective, the paper aims to show that the provision should be narrowly interpreted in light of the ECJ case law, and to give effect to the Charter of Fundamental Rights; a rephrasing of the norm is desirable. The provision on the legitimate interest of data controllers weakens the legal protection of data subjects

Scenarios for the development of smart grids in the UK: synthesis report

‘Smart grid’ is a catch-all term for the smart options that could transform the ways society produces, delivers and consumes energy, and potentially the way we conceive of these services. Delivering energy more intelligently will be fundamental to decarbonising the UK electricity system at least possible cost, while maintaining security and reliability of supply. Smarter energy delivery is expected to allow the integration of more low carbon technologies and to be much more cost effective than traditional methods, as well as contributing to economic growth by opening up new business and innovation opportunities. Innovating new options for energy system management could lead to cost savings of up to £10bn, even if low carbon technologies do not emerge. This saving will be much higher if UK renewable energy targets are achieved. Building on extensive expert feedback and input, this report describes four smart grid scenarios which consider how the UK’s electricity system might develop to 2050. The scenarios outline how political decisions, as well as those made in regulation, finance, technology, consumer and social behaviour, market design or response, might affect the decisions of other actors and limit or allow the availability of future options. The project aims to explore the degree of uncertainty around the current direction of the electricity system and the complex interactions of a whole host of factors that may lead to any one of a wide range of outcomes. Our addition to this discussion will help decision makers to understand the implications of possible actions and better plan for the future, whilst recognising that it may take any one of a number of forms