There is an ongoing increase in the use of mobile health technologies that patients can use to monitor health-related outcomes and behaviours. While the dominant narrative around mHealth focuses on patient empowerment, there is potential for mHealth to fit into a growing push for patients to take personal responsibility for their health. I call the first of these uses ‘medical monitoring’, and the second ‘personal health surveillance’. After outlining two problems which the use of mHealth might seem to enable us (...) to overcome—fairness of burdens and reliance on self-reporting—I note that these problems would only really be solved by unacceptably comprehensive forms of personal health surveillance which applies to all of us at all times. A more plausible model is to use personal health surveillance as a last resort for patients who would otherwise independently qualify for responsibility-based penalties. However, I note that there are still a number of ethical and practical problems that such a policy would need to overcome. The prospects of mHealth enabling a fair, genuinely cost-saving policy of patient responsibility are slim. (shrink)

Aging populations have become a major concern in the developed world and are expected to require novel care strategies. Public policies, health-care regimes and technology developers alike stress the need for a more individualized care to meet the increased demand for care services in response to demographic change. Increasingly, care services are offered to individuals with diseases and or disabilities in their homes by means of Personalized Health-Monitoring (PHM) technologies. PHM-based home care is typically portrayed as the key to a (...) cost-effective future care that better can accommodate the needs of an aging population and promote care recipients’ independence. In light of the emerging technology-based home care, this article sets forth to investigate the significance and implications of a strong emphasis on independence in relation to this novel care form. Notions of independence as used by care planners, care providers and technology developers are examined in relation to ICT-based home care and the reasonableness of independence as an aim for future health-care is critically discussed. In conclusion, the need for a shift from a strong emphasis on independence to a right to healthy dependence is advocated. (shrink)

Technological approaches are increasingly discussed as a solution for the provision of support in activities of daily living as well as in medical and nursing care for older people. The development and implementation of such assistive technologies for eldercare raise manifold ethical, legal, and social questions. The discussion of these questions is influenced by theoretical perspectives and approaches from medical and nursing ethics, especially the principlist framework of autonomy, non-maleficence, beneficence, and justice. Tying in with previous criticism, the present contribution (...) is taking these principles as a starting point and as a frame of reference to be critically re-examined. It thus aims to outline how existing ethical frameworks need to be extended or reconsidered to capture the ethical issues posed by technological developments regarding care for older people. In a first step, we provide a brief overview of assistive technologies in eldercare according to their purposes and functions. In the next step, we discuss how the questions and problems raised by new technologies in eldercare call for an expansion, re-interpretation, and revision of the principlist framework. We underline that the inclusion of ethical perspectives from engineering and computer science as well as a closer consideration of socio-political dimensions and fundamental anthropological and praxeological questions are needed. (shrink)

The standard approach to protecting privacy in healthcare aims to control access to personal information. We cannot regain control of information after it has been shared, so we must restrict access from the start. This ‘control’ conception of privacy conflicts with data-intensive initiatives like precision medicine and learning health systems, as they require patients to give up significant control of their information. Without adequate alternatives to the control-based approach, such data-intensive programmes appear to require a loss of privacy. This paper (...) argues that the control view of privacy is shortsighted and overlooks important ways to protect health information even when widely shared. To prepare for a world where we no longer control our data, we must pursue three alternative strategies: obfuscate health data, penalise the misuse of health data and improve transparency around who shares our data and for what purposes. Prioritising these strategies is necessary when health data are widely shared both within and outside of the health system. (shrink)

The concept of privacy by design is becoming increasingly popular among regulators of information and communications technologies. This paper aims at analysing and discussing the ethical implications of this concept for personal health monitoring. I assume a privacy theory of restricted access and limited control. On the basis of this theory, I suggest a version of the concept of privacy by design that constitutes a middle road between what I call broad privacy by design and narrow privacy by design. The (...) key feature of this approach is that it attempts to balance automated privacy protection and autonomously chosen privacy protection in a way that is context-sensitive. In personal health monitoring, this approach implies that in some contexts like medication assistance and monitoring of specific health parameters one single automatic option is legitimate, while in some other contexts, for example monitoring in which relatives are receivers of health-relevant information rather than health care professionals, a multi-choice approach stressing autonomy is warranted. (shrink)

Purpose– The medical advances and historical fluctuations in the demographics are contributing to the rise of the average age. These changes are increasing the pressure to organize adequate care to a growing number of individuals. As a way to provide efficient and cost-effective care, eHealth systems are gaining importance. However, this trend is creating new ethical concerns. Major issues are privacy and patients’ control over their data. To deploy these systems on a large scale, they need to offer strict privacy (...) protection. Even though many research proposals focus on eHealth systems and related ethical requirements, there is an evident lack of practical solutions for protecting users’ personal information. The purpose of this study is to explore the ethical considerations related to these systems and extract the privacy requirements. This paper also aims to put forth a system design which ensures appropriate privacy protection.Design/methodology/approach– This paper investigates the existing work in the area of eHealth systems and the related ethical considerations, which establish privacy as one of the main requirements. It lists the ethical requirements and data protection standards that a system needs to fulfil and uses them as a guideline for creating the proposed design.Findings– Even though privacy is considered to be a paramount aspect of the eHealth systems, the existing proposals do not tackle this issue from the outset of the design. Consequently, introducing privacy at the final stages of the system deployment imposes significant limitations and the provided data protection is not always to the standards expected by the users.Originality/value– This paper motivates the need for addressing ethical concerns in the eHealth domain with special focus on establishing strict privacy protection. It lists the privacy requirements and offers practical solutions for developing a privacy-friendly system and takes the approach of privacy-by-design. Additionally, the proposed design is evaluated against ethical principles as proposed in the existing literature. The aim is to show that technological advances can be used to improve quality and efficiency of care, while the usually raised concerns can be avoided. (shrink)

Purpose – This paper has three purposes: to identify and discuss values that should be promoted and respected in personal health monitoring, to formulate an ethical checklist that can be used by stakeholders, and to construct an ethical matrix that can be used for identifying values, among those in the ethical checklist, that are particularly important to various stakeholders. Design/methodology/approach – On the basis of values that empirical studies have found important to various stakeholders in personal health monitoring, the author (...) constructs an ethical checklist and an ethical matrix. The author carries out a brief conceptual analysis and discusses the implications. Findings – The ethical checklist consists of three types of values: practical values that a technical product in personal health monitoring must have, quality of life values to be promoted by the development and use of the product, and moral values to be respected in this development and use. To give guidance in practice, the values in the checklist must be interpreted and balanced. The ethical matrix consists of the values in the checklist and a number of stakeholders. Originality/value – The overall ambition is to suggest a way of categorizing values that can be useful for stakeholders in personal health monitoring. In order to achieve this, the study takes empirical studies as a starting-point and includes a conceptual analysis. This means that the proposals are founded on practice rather than mere abstract thinking, and this improves its usability. (shrink)