Governance and information governance: some ethical considerations within an expanding information society

Governance and information governance ought to be an integral part of any government or organisations information and business strategy. More than ever before information and knowledge can be produced, exchanged, shared and communicated through many different mediums. Whilst sharing information and knowledge provides many benefits it also provides many challenges and risks to governments, global organisations and the individual citizen. Information governance is one element of a governance and compliance programme, but an increasingly important one, because many regulations apply to how information is managed and protected from theft and abuse, much of which resides with external agencies usually outside the control of the individual citizen. This paper explores some of the compliance and quality issues within governance and information governance including those ethical concerns as related to individual citizens and multiple stakeholders engaged directly or indirectly in the governance process

The Ethical Implications of Personal Health Monitoring

Personal Health Monitoring (PHM) uses electronic devices which monitor and record health-related data outside a hospital, usually within the home. This paper examines the ethical issues raised by PHM. Eight themes describing the ethical implications of PHM are identified through a review of 68 academic articles concerning PHM. The identified themes include privacy, autonomy, obtrusiveness and visibility, stigma and identity, medicalisation, social isolation, delivery of care, and safety and technological need. The issues around each of these are discussed. The system / lifeworld perspective of Habermas is applied to develop an understanding of the role of PHMs as mediators of communication between the institutional and the domestic environment. Furthermore, links are established between the ethical issues to demonstrate that the ethics of PHM involves a complex network of ethical interactions. The paper extends the discussion of the critical effect PHMs have on the patient’s identity and concludes that a holistic understanding of the ethical issues surrounding PHMs will help both researchers and practitioners in developing effective PHM implementations

Young people and sexting in Australia: ethics, representation and the law

The Young People and Sexting in Australia report presents the findings of a qualitative study of young people’s understandings of, and responses to, current Australian laws, media and educational resources that address sexting. The project, led by Dr Kath Albury involved a review of both international local and academic research as well as popular media addressing sexting, and a review of educational resources for young people. Three focus groups were conducted with young people aged 16 and 17 in 2012, and a working paper based on those findings was then distributed to adult stakeholders in the fields of law enforcement, youth and children’s legal support, education, criminology, media and communications, youth work, youth health care, counseling and youth health promotion

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

The Serums Tool-Chain:Ensuring Security and Privacy of Medical Data in Smart Patient-Centric Healthcare Systems

Digital technology is permeating all aspects of human society and life. This leads to humans becoming highly dependent on digital devices, including upon digital: assistance, intelligence, and decisions. A major concern of this digital dependence is the lack of human oversight or intervention in many of the ways humans use this technology. This dependence and reliance on digital technology raises concerns in how humans trust such systems, and how to ensure digital technology behaves appropriately. This works considers recent developments and projects that combine digital technology and artificial intelligence with human society. The focus is on critical scenarios where failure of digital technology can lead to significant harm or even death. We explore how to build trust for users of digital technology in such scenarios and considering many different challenges for digital technology. The approaches applied and proposed here address user trust along many dimensions and aim to build collaborative and empowering use of digital technologies in critical aspects of human society

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

Young people's views regarding participation in mental health and wellbeing research through social media

Social media is a central component in the lives of many young people, and provides innovative potential to conduct research among this population. Ethical issues around online research have been subject to much debate, yet young people have seldom been consulted to provide a youth perspective and voice. Eight (8) focus groups involving 48 Grade 9 Western Australian secondary school students aged 13-14 years were held in 2012, to investigate how young people perceive the feasibility and acceptability of social media when used as a research tool to investigate various issues relevant to their mental health and wellbeing. Whilst young people recognise many benefits of researchers using social media in this way, such as its relevance, innovation and accessibility, there were salient issues of privacy, consent, and practicality that require careful negotiation. There is a need for continued exploration and scientific debate of the moral and ethical implications of using social media for research, to help ensure this is employed in an appropriate and effective way that is respectful of and sensitive to the needs and views of young peoplepeer-reviewe

Legitimizing radical new medical services

Physicians enjoy considerable liberty in the creation of entrepreneurial ventures in the new frontiers of medicine. Professional societies may opine about a new procedure but professionals may feel free to ignore their counsel as well. Two case studies are used to discuss this method of new venture creation; the cases are trait selection through pre-implantation genetic diagnosis and female cosmetic genital surgery (FCGS), both controversial practices. We discuss the ethics and legitimacy of both and how one can use theory to analyze whether or not these are legitimate businesses and how to develop them