Background The field of personal health monitoring (PHM) develops rapidly in different contexts, including the armed forces. Understanding the ethical dimension of this type of monitoring is key to a morally responsible development, implementation and usage of PHM within the armed forces. Research on the ethics of PHM has primarily been carried out in civilian settings, while the ethical dimension of PHM in the armed forces remains understudied. Yet, PHM of military personnel by design takes place (...) in a different setting than PHM of civilians, because of their tasks and the context in which they operate. This case study therefore focusses on obtaining insights into the experiences and related values of different stakeholders regarding an existing form of PHM, the Covid-19 Radar app, in the Netherlands Armed Forces. Methods We carried out an exploratory qualitative study, using semi-structured interviews with twelve stakeholders in the Netherlands Armed Forces. We focussed on participation in the use of PHM, reflections on the practical use and use of data, moral dilemmas and the need for ethics support, all in regard to PHM. The data was analysed using an inductive thematic approach. Results Three interlinking categories reflecting ethical dimensions of PHM emerged: (1) values, (2) moral dilemmas, and (3) external norms. The main values identified were: security (in relation to data), trust and hierarchy. Multiple related values were found. Some, but no broadly shared, moral dilemmas were identified and no strong need for ethics support was expressed. Conclusion This study shed light on key values, provide insights in the experienced and presumed moral dilemmas and bring to mind ethics support considerations when looking at PHM in the armed forces. Some values bring a certain vulnerability to military users when personal and organisational interests are not aligned. Furthermore, some identified values may hinder a careful consideration of PHM because they potentially conceal parts of ethical dimensions of PHM. Ethics support can assist in uncovering and addressing these concealed parts. The findings highlight a moral responsibility for the armed forces to devote attention to the ethical dimensions of PHM. (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)

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. (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)

The American Journal of Bioethics, Volume 12, Issue 9, Page 47-48, September 2012.

In this paper I investigate the web-rhetoric of companies offering home-based personal health monitoring to patients and elderly people. Two main rhetorical methods are found, namely a reference to practical benefits and a use of prestige words like “quality of life” and “independence”. I interpret the practical benefits in terms of instrumental values and the prestige words in terms of final values. I also reconstruct the arguments on the websites in terms of six different types of argument. (...) Finally, I articulate a general critique of the arguments, namely that the websites neglect the context of use of personal health monitoring technologies. Whether or not a technology is good depends on the use of the technology by a particular individual in a particular context. The technology is not good–or bad–in itself. I support this critique with a number of more specific arguments such as the risk for reduced personal contact. For some elderly people social contact with care providers is more valuable than the independent living made possible by remote monitoring, for others independence is more important. (shrink)

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)

Artificial intelligence (AI) has garnered tremendous attention in health care, and many hope that AI can enhance our health system’s ability to care for people with chronic and degenerative conditions, including Parkinson’s Disease (PD). This paper reports the themes and lessons derived from a qualitative study with people living with PD, family caregivers, and health care providers regarding the ethical dimensions of using AI to monitor, assess, and predict PD symptoms and progression. Thematic analysis identified ethical concerns (...) at four intersecting levels: personal, interpersonal, professional/institutional, and societal levels. Reflecting on potential benefits of predictive algorithms that can continuously collect and process longitudinal data, participants expressed a desire for more timely, ongoing, and accurate information that could enhance management of day-to-day fluctuations and facilitate clinical and personal care as their disease progresses. Nonetheless, they voiced concerns about intersecting ethical questions around evolving illness identities, familial and professional care relationships, privacy, and data ownership/governance. The multi-layer analysis provides a helpful way to understand the ethics of using AI in monitoring and managing PD and other chronic/degenerative conditions. (shrink)

The effective collection and management of personal data of rapidly migrating populations is important for ensuring adequate healthcare and monitoring of a displaced peoples’ health status. With developments in ICT data sharing capabilities, electronic personal health records (ePHRs) are increasingly replacing less transportable paper records. ePHRs offer further advantages of improving accuracy and completeness of information and seem tailored for rapidly displaced and mobile populations. Various emerging initiatives in Europe are seeking to develop migrant‐centric ePHR (...) responses. This paper highlights their importance and benefits, but also identifies a number of significant ethical, legal and social issues (ELSI) and challenges to their design and implementation, regarding (1) the kind of information that should be stored, (2) who should have access to information, and (3) potential misuse of information. These challenges need to be urgently addressed to make possible the beneficial use of ePHRs for vulnerable migrants in Europe. (shrink)

The proportion of elderly in society is growing rapidly, leading to increasing health care costs. New remote monitoring technologies are expected to lower these costs by reducing the number of close encounters with health care professionals, for example the number of visits to health care centres. In this paper, I discuss issues of priority setting raised by this expectation. As a starting-point, I analyse the recent debate on principles for priority setting in Sweden. The Swedish debate (...) illustrates that developing an approach to priority setting is an ongoing process. On the basis of this analysis, I conclude that several different ethical principles, and specifications of these principles, can be appealed to for giving priority—over close encounters—to a large-scale introduction of remote monitoring technologies in health care services to elderly people, but also that many specifications can be appealed to against giving such priority. I propose that given the different views on principles, it is necessary to develop fair procedures of deliberation on these principles and their application, in particular in order to reach agreement on exactly how much resources should be allocated to remote monitoring and how much to close encounters. I also present a few points to consider in a large-scale introduction of remote monitoring. (shrink)

In this paper, we propose an Internet of Things to enhancing the experience of personal gardening as a method of therapy for mental-health patients, given a belief in its role in a person’s mood and general positivity, The proposed prototype continuously senses and monitors the state of an indoor plant through different sensors. The user is notified of the plant’s needs for water, sunlight, etc., through generated notifications from channels over cloud in-real time. Thus, we were able to (...) successfully create a humanised experience of recovery where the user can accessibly ‘talk’ with its plant through a smartphone. (shrink)

When it comes to improving the health of the general population, mHealth technologies with self-monitoring and intervention components hold a lot of promise. We argue, however, that due to various factors such as access, targeting, personal resources or incentives, self-monitoring applications run the risk of increasing health inequalities, thereby creating a problem of social justice. We review empirical evidence for “intervention-generated” inequalities, present arguments that self-monitoring applications are still morally acceptable, and develop approaches to (...) avoid the promotion of health inequalities through self-monitoring applications. (shrink)

This paper critically examines the extent to which health promoting wearable technologies can provide people with greater autonomy over their health. These devices are frequently presented as a means of expanding the possibilities people have for making healthier decisions and living healthier lives. We accept that by collecting, monitoring, analysing and displaying biomedical data, and by helping to underpin motivation, wearable technologies can support autonomy over health. However, we argue that their contribution in this regard is (...) limited and that—even with respect to their ‘autonomy enhancing’ potential—these devices may deliver costs as well as benefits. We proceed by rehearsing the distinction that can be drawn between procedural autonomy and substantive-relational autonomy. While the information provided by wearable technologies may support deliberation and decision-making, in isolation these technologies do little to provide substantive opportunities to act and achieve better health. As a consequence, wearable technologies risk generating burdens of anxiety and stigma for their users and reproducing existing health inequalities. We then reexamine the extent to which wearable technologies actually support autonomous deliberation. We argue that wearable technologies that subject their users to biomedical and consumerist epistemologies, norms and values also risk undermining processes of genuinely autonomous deliberation. (shrink)

Type 1 diabetes (T1D) is a chronic illness that requires intensive lifelong management of blood glucose concentrations by means of external insulin administration. There have been substantial developments in the ways of measuring glucose levels, which is crucial to T1D self-management. Recently, continuous glucose monitoring (CGM) has allowed people with T1D to keep track of their blood glucose levels in near real-time. These devices have alarms that warn users about potentially dangerous blood glucose trends, which can often be shared (...) with ther people. CGM is consistently associated with improved glycemic control and reduced hypoglycemia and is currently recommended by doctors. However, due to the costs of CGM, only those who qualify for hospital provision or those who can personally afford it are able to use it, which excludes many people. In this paper, I argue that unequal access to CGM results in: (1) unjust health inequalities, (2) relational injustice, (3) injustice with regard to agency and autonomy, and (4) epistemic injustice. These considerations provide prima facie moral reasons why all people with T1D should have access to CGM technology. I discuss the specific case of CGM policy in the Netherlands, which currently only provides coverage for a small group of people with T1D, and argue that, especially with additional considerations of cost-effectiveness, the Dutch government ought to include CGM in basic health care insurance for all people with T1D. (shrink)

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. (shrink)

When it comes to improving the health of the general population, mHealth technologies with self-monitoring and intervention components hold a lot of promise. We argue, however, that due to various factors such as access, targeting, personal resources or incentives, self-monitoring applications run the risk of increasing health inequalities, thereby creating a problem of social justice. We review empirical evidence for “intervention-generated” inequalities, present arguments that self-monitoring applications are still morally acceptable, and develop approaches to (...) avoid the promotion of health inequalities through self-monitoring applications. (shrink)

The European Union Data Protection Regulation will have profound implications for public health, health services research and statistics in Europe. The EU Commission's Proposal was a breakthrough in balancing privacy rights and rights to health and healthcare. The European Parliament, however, has proposed extensive amendments. This paper reviews the amendments proposed by the European Parliament Committee on Civil Liberties, Justice and Home Affairs and their implications for health research and statistics. The amendments eliminate most innovations brought (...) by the Proposal. Notably, derogation to the general prohibition of processing sensitive data shall be allowed for public interests such as the management of healthcare services, but not health research, monitoring, surveillance and governance. The processing of personal health data for historical, statistical or scientific purposes shall be allowed only with the consent of the data subject or if the processing serves an exceptionally high public interest, cannot be performed otherwise and is legally authorised. Research, be it academic, government, corporate or market research, falls under the same rule. The proposed amendments will make difficult or render impossible research and statistics involving the linkage and analysis of the wealth of data from clinical, administrative, insurance and survey sources, which have contributed to improving health outcomes and health systems performance and governance; and may illegitimise efforts that have been made in some European countries to enable privacy-respectful data use for research and statistical purposes. If the amendments stand as written, the right to privacy is likely to override the right to health and healthcare in Europe. (shrink)

In the UK, over 70% of AIDS, including new cases, is located in a few Districts in central London where the distribution of previously occurring and new cases is essentially confined to the original risk groups of homosexual/bisexual men, drug addicts of both sexes, and some of their sexual partners and consorts. But control policy is still based on the assumption that HIV has already spread from persons in these risk groups into the general population, and that it will spread (...) hereafter at an increased rate because of heterosexual transmission to cause a widespread epidemic of AIDS.The basis and implications of this policy were investigated in the South East region adjacent to London, Analysis of demographic and epidemiological data shows that, with one exception, there is very little extension of AIDS from affected Districts in London to the surrounding region or even to the suburban fringe. Where AIDS is prevalent, as in this exception, the distribution follows the same, original pattern which relates essentially to risks arising from life-styles. There is no significant association between the prevalence or spread of AIDS and conventional markers of deprivation, economic and social disadvantage.Allocations of personnel, services and expenditure, assessed from returns required under the AIDS Control Act of 1987 and official registration data, continue to follow the original policy assumptions. They are therefore unrelated to the numbers of existing and new cases, disproportionate and unrealistic. Claims that this widespread excess of effort is justified by the fact that AIDS has not spread to the general population are falsified by the continuation of cases almost exclusively in risk groups. There is nothing in the data required under the Act or in registrations in this main locus of AIDS in the UK to suggest any change in this or to justify continuation of current expenditure and redundant activities.There is no evidence in these data that ethnic variations in the resident populations of Districts are associated with variations in the prevalence of AIDS. However, the larger figures available in some of the national data do indicate a disproportionate increase in some minority ethnic groups. Further detail about risks factors in these groups are required and, meanwhile, effort and expenditure should be re-orientated toward treatment, contact tracing and other public health measures for more effective containment of the continuing spread of AIDS in all the high risk groups. (shrink)

In the UK, over 70% of AIDS, including new cases, is located in a few Districts in central London where the distribution of previously occurring and new cases is essentially confined to the original risk groups of homosexual/bisexual men, drug addicts of both sexes, and some of their sexual partners and consorts. But control policy is still based on the assumption that HIV has already spread from persons in these risk groups into the general population, and that it will spread (...) hereafter at an increased rate because of heterosexual transmission to cause a widespread epidemic of AIDS.The basis and implications of this policy were investigated in the South East region adjacent to London, Analysis of demographic and epidemiological data shows that, with one exception, there is very little extension of AIDS from affected Districts in London to the surrounding region or even to the suburban fringe. Where AIDS is prevalent, as in this exception, the distribution follows the same, original pattern which relates essentially to risks arising from life-styles. There is no significant association between the prevalence or spread of AIDS and conventional markers of deprivation, economic and social disadvantage.Allocations of personnel, services and expenditure, assessed from returns required under the AIDS Control Act of 1987 and official registration data, continue to follow the original policy assumptions. They are therefore unrelated to the numbers of existing and new cases, disproportionate and unrealistic. Claims that this widespread excess of effort is justified by the fact that AIDS has not spread to the general population are falsified by the continuation of cases almost exclusively in risk groups. There is nothing in the data required under the Act or in registrations in this main locus of AIDS in the UK to suggest any change in this or to justify continuation of current expenditure and redundant activities.There is no evidence in these data that ethnic variations in the resident populations of Districts are associated with variations in the prevalence of AIDS. However, the larger figures available in some of the national data do indicate a disproportionate increase in some minority ethnic groups. Further detail about risks factors in these groups are required and, meanwhile, effort and expenditure should be re-orientated toward treatment, contact tracing and other public health measures for more effective containment of the continuing spread of AIDS in all the high risk groups. (shrink)

Despite advances in the treatment of heart failure, the physical symptoms and stress of the disease continue to negatively impact patients’ health outcomes. Technology now offers promising ways to integrate personalized support from health care professionals via a variety of platforms. Digital health technology solutions using mobile devices or those that allow remote patient monitoring are potentially more cost effective and may replace in-person interaction. Notably, digital health methods may not only improve clinical outcomes but (...) may also improve the psycho-social status of HF patients. Using digital health to address biopsychosocial variables, including elements of the person and their context is valuable when considering chronic illness and HF in particular, given the multiple, cross-level factors affecting chronic illness clinical management needed for HF self-care. (shrink)

Digital phenotyping will potentially enable earlier detection and prediction of mental illness by monitoring human interaction with and through digital devices. Notwithstanding its promises, it is certain that a person’s digital phenotype will at times be at odds with their first-person testimony of their psychological states. In this paper, we argue that there are features of digital phenotyping in the context of psychiatry which have the potential to exacerbate the tendency to dismiss patients’ testimony and treatment preferences, which can (...) be instances of epistemic injustice. We first explain what epistemic injustice is, and why it is argued to be an extensive problem in health and disability settings. We then explain why epistemic injustice is more likely to apply with even greater force in psychiatric contexts, and especially where digital phenotyping may be involved. Finally, we offer some tentative suggestions of how epistemic injustice can be minimised in digital psychiatry. (shrink)

The COVID-19 pandemic and its related policies (e.g., stay at home and social distancing orders) have increased people’s use of digital technology, such as social media. Researchers have, in turn, utilized artificial intelligence to analyze social media data for public health surveillance. For example, through machine learning and natural language processing, they have monitored social media data to examine public knowledge and behavior. This paper explores the ethical considerations of using artificial intelligence to monitor social media to understand the (...) public’s perspectives and behaviors surrounding COVID-19, including potential risks and benefits of an AI-driven approach. Importantly, investigators and ethics committees have a role in ensuring that researchers adhere to ethical principles of respect for persons, beneficence, and justice in a way that moves science forward while ensuring public safety and confidence in the process. (shrink)

The Canadian medical assistance in dying program, based on an ambitious piece of legislation and detailed regulations, has failed to provide Canadians with sufficient publicly accessible evidence to show that it is operating as mandated by the requirements of the law, regulations, and expectations of all stakeholders. The federal law that was adopted in 2016 defined the eligibility criteria and put in place a number of safeguards that had to be satisfied before providing assisted dying to a person in order (...) not to transgress the Criminal Law. The responsibility of monitoring for the purpose of investigating compliance with the eligibility criteria and procedural safeguards was assigned by the Federal Ministry of Health to the provincial and territorial governments. Some of the governments have released statistical data concerning the program, but none have yet issued a comprehensive report on adherence to the eligibility criteria and its safeguards as required by the law and regulations. This paper explains the process, explores the possible reasons for this shortfall, and offers some suggestions for actions that could rectify this aspect of the MAID program. Accountability and transparency are integral to the delivery of MAID and the publications of the mandated federal as well as provincial/territorial monitoring reports are one important approach to achieving confidence and trust in the program. (shrink)

Mobile health (mHealth) apps for self-monitoring increasingly gain relevance for public health. As a mobile technology, they promote individual participation in health monitoring with the aim of disease prevention and the mitigation of health risks. In this paper, I argue that users of mHealth apps must engage in value trade-offs concerning their fundamental dimensions of well-being when using mobile health apps for the self-monitoring of health parameters. I particularly focus on trade-offs (...) regarding the user’s self-determination as well as their capacity to form personal attachments. Depending on the user’s level of advantage or disadvantage, value trade-offs can pose a threat to the users’ sufficient fulfillment of the dimensions of well-being. As such, value trade-offs can entrench existing structural injustices and prevent disadvantaged users to benefit from this technology. I argue that value trade-offs are, to some, a type of injustice that can drive disadvantaged users away from a sufficiency threshold of well-being, risk users to fall below the threshold, or have an accumulative effect on different dimensions of the user’s well-being. (shrink)

One in three university students experiences mental health problems during their study. A similar percentage leaves higher education without obtaining the degree for which they enrolled. Research suggests that both mental health problems and academic underperformance could be caused by students lacking control and purpose while they are adjusting to tertiary education. Currently, universities are not designed to cater to all the personal needs and mental health problems of large numbers of students at the start of (...) their studies. Within the literature aimed at preventing mental health problems among students (e.g., anxiety or depression), digital forms of therapy recently have been suggested as potentially scalable solutions to address these problems. Integrative psychological artificial intelligence (AI) in the form of a chatbot, for example, shows great potential as an evidence-based solution. At the same time, within the literature aimed at improving academic success, the online life-crafting intervention in which students write about values and passions, goals, and goal-attainment plans has shown to improve the academic performance and retention rates of students. Because the life-crafting intervention is delivered through the curriculum and doesn’t bear the stigma that is associated with therapy, it can reach larger populations of students. But life-crafting lacks the means for follow-up or the interactiveness that online AI-guided therapy can offer. In this paper, we propose to integrate the current literature on chatbot interventions aimed at the mental health of students with research about a life-crafting intervention that uses an inclusive curriculum-wide approach. When a chatbot asks students to prioritize both academic as well as social and health-related goals and provides personalized follow-up coaching, this can prevent -often interrelated- academic and mental health problems. Right on-time delivery, and personalized follow-up questions enhance the effects of both -originally separated- intervention types. Research on this new combination of interventions should use design principles that increase user-friendliness and monitor the technology acceptance of its participants. (shrink)

Since uncertainty is a major challenge in medicine and bears the risk of causing incorrect diagnoses and harmful treatment, there are many efforts to tackle it. For some time, AI technologies have been increasingly implemented in medicine and used to reduce medical uncertainties. What initially seems desirable, however, poses challenges. We use a multimethod approach that combines philosophical inquiry, conceptual analysis, and ethical considerations to identify key challenges that arise when AI is used for medical certainty purposes. We identify several (...) challenges. Where AI is used to reduce medical uncertainties, it is likely to result in (a) patients being stripped down to their measurable data points, and being made disambiguous. Additionally, the widespread use of AI technologies in health care bears the risk of (b) human physicians being pushed out of the medical decision-making process, and patient participation being more and more limited. Further, the successful use of AI requires extensive and invasive monitoring of patients, which raises (c) questions about surveillance as well as privacy and security issues. We outline these several challenges and show that they are immediate consequences of AI-driven security efforts. If not addressed, they could entail unfavorable consequences. We contend that diminishing medical uncertainties through AI involves a tradeoff. The advantages, including enhanced precision, personalization, and overall improvement in medicine, are accompanied by several novel challenges. This paper addresses them and gives suggestions about how to use AI for certainty purposes without causing harm to patients. (shrink)

BackgroundSolitary death (kodokushi) has recently become recognized as a social issue in Japan. The social isolation of older people leads to death without dignity. With the outbreak of COVID-19, efforts to eliminate solitary death need to be adjusted in line with changes in lifestyle and accompanying changes in social structure. Health monitoring services that utilize wearable devices may contribute to this end. Our goals are to outline how wearable devices might be used to (1) detect emergency situations involving (...) solitary older people and swiftly connect them with medical treatment, to (2) reduce the frequency of deaths that remain undiscovered and (3) to reduce social isolation by promoting social interaction. MethodsTheoretical and philosophical approaches were adopted to examine ethical issues surrounding the application of wearable devices and cloud-based information processing systems to prevent solitary death in the world with/after COVID-19.Main body(1) Technology cannot replace social connections; without social support necessary to foster understanding of the benefits of health management through wearable devices among older adults, such devices may remain unused, or not used properly. (2) Maturity of the technology; systems face the difficult task of detecting and responding to a wide range of health conditions and life-threatening events in time to avert avoidable morbidity and mortality. (3) Autonomy and personhood; promoting the voluntary use of wearable devices that are a part of larger efforts to connect isolated individuals to a community or social services might be effective. Legal force should be avoided if possible. There is some concern that landlords may require an older person to sign a contract agreeing to wear a device. The autonomy of solitary older people should be respected. (4) Governance: policies must be developed to limit access to data from wearables and the purposes for which data can be used.ConclusionIf thoughtfully deployed under proper policy constraints, wearable devices offer a way to connect solitary older people to health services and could reduce cases of solitary death while respecting the personhood of the user. (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)

Human-Computer Interaction and games set a new domain in understanding people’s motivations in gaming, behavioral implications of game play, game adaptation to player preferences and needs for increased engaging experiences in the context of HCI serious games. When the latter relate with people’s health status, they can become a part of their daily life as assistive health status monitoring/enhancement systems. Co-designing HCI-SGs can be seen as a combination of art and science that involves a meticulous collaborative process. (...) The design elements in assistive HCI-SGs for Parkinson’s Disease patients, in particular, are explored in the present work. Within this context, the Game-Based Learning design framework is adopted here and its main game-design parameters are explored for the Exergames, Dietarygames, Emotional games, Handwriting games, and Voice games design, drawn from the PD-related i-PROGNOSIS Personalized Game Suite holistic approach. Two main data sources were involved in the study. In particular, the first one includes qualitative data from semi-structured interviews, involving 10 PD patients and four clinicians in the co-creation process of the game design, whereas the second one relates with data from an online questionnaire addressed by 104 participants spanning the whole related spectrum, i.e., PD patients, physicians, software/game developers. Linear regression analysis was employed to identify an adapted GBL framework with the most significant game-design parameters, which efficiently predict the transferability of the PGS beneficial effect to real-life, addressing functional PD symptoms. The findings of this work can assist HCI-SG designers for designing PD-related HCI-SGs, as the most significant game-design factors were identified, in terms of adding value to the role of HCI-SGs in increasing PD patients’ quality of life, optimizing the interaction with personalized HCI-SGs and, hence, fostering a collaborative human-computer symbiosis. (shrink)

The application of human right frameworks is an increasingly important part of efforts to accelerate progress in global mental health. Much of this has been driven by several influential legal and policy instruments, most notably the United Nations’ Convention on the Rights of Persons with Disabilities, as well as the World Health Organization’s QualityRights Tool Kit and Mental Health Action Plan. Despite these significant developments, however, much more needs to be done to prevent human rights violations. This (...) chapter focuses on a critical component of this broader challenge, which is the question of how best to regulate and reduce the use of coercive measures. The recent literature on coercion in psychiatry – which addresses involuntary commitment, seclusion, restraint, and forced medication – represents a useful resource that can help guide tractable solutions in global mental health. These issues are evaluated from the perspective of global health governance, and several general recommendations are made in order to improve monitoring and enforcement, provide guidance for domestic legislative reform, and strengthen health systems. (shrink)

Epigenetic markers could potentially be used for risk assessment in risk-stratified population-based cancer screening programmes. Whereas current screening programmes generally aim to detect existing cancer, epigenetic markers could be used to provide risk estimates for not-yet-existing cancers. Epigenetic risk-predictive tests may thus allow for new opportunities for risk assessment for developing cancer in the future. Since epigenetic changes are presumed to be modifiable, preventive measures, such as lifestyle modification, could be used to reduce the risk of cancer. Moreover, epigenetic markers (...) might be used to monitor the response to risk-reducing interventions. In this article, we address ethical concerns related to personal responsibility raised by epigenetic risk-predictive tests in cancer population screening. Will individuals increasingly be held responsible for their health, that is, will they be held accountable for bad health outcomes? Will they be blamed or subject to moral sanctions? We will illustrate these ethical concerns by means of a Europe-wide research programme that develops an epigenetic risk-predictive test for female cancers. Subsequently, we investigate when we can hold someone responsible for her actions. We argue that the standard conception of personal responsibility does not provide an appropriate framework to address these concerns. A different, prospective account of responsibility meets part of our concerns, that is, concerns about inequality of opportunities, but does not meet all our concerns about personal responsibility. We argue that even if someone is responsible on grounds of a negative and/or prospective account of responsibility, there may be moral and practical reasons to abstain from moral sanctions. (shrink)

Introduction. Eating Disorders (EDs) are serious psychiatric disorders, impacting physical and psychosocial functioning, often with a chronic course and high mortality rates. The two continua model of mental health states that mental health is a complete state, that is not merely the absence of mental illness, but also the presence of mental health. This model was studied among ED patients by comparing the levels of well-being to the Dutch general population and by examining the of well-being and (...) psychopathology. Method. A total of 468 female ED patients participated in this study during application and intake at a specialized ED treatment centre in the Netherlands. They filled out questionnaires about well-being (MHC-SF), general psychopathology (OQ-45), and ED psychopathology (EDE-Q). Categorical and mean well-being levels were calculated. Also, the correlates of these variables were examined with Pearson correlation and multiple hierarchical regression analysis. Results. ED patients showed lower levels of emotional, psychological and social well-being on average compared to the general population. About 26% of the ED patients experienced low levels of well-being (languishing). However, also 13% experienced high levels of well-being (flourishing), varying between 9% in Anorexia Nervosa to 25% in Binge Eating Disorder. ED psychopathology and general well-being showed a moderate negative correlation. For patients with Bulimia Nervosa and Binge Eating Disorder however no such correlation was found. Lower general psychopathology, not having a history of hospitalization for the ED, and adaptive personal functioning were correlated with well-being among ED patients. Conclusion This study shows initial support for the two continua model of mental health among ED patients. Psychopathology and well-being should be considered as related, but distinct dimensions of mental health in ED patients. Further research should focus on the possible reciprocal relationships between psychopathology and well-being during recovery. It is recommended to monitor well-being during treatment and to implement interventions for well-being to realize complete recovery for those patients with inadequate levels of well-being. (shrink)

Priority setting in health care means making distributional decisions, which inherently involves limiting access to some health services. Public health ethics involves many ethical principles like efficiency, equity and individual choice, which are frequently appealed to but rarely analysed. How these concepts are understood and applied impacts on healthcare planning and delivery policies. This article discusses findings of a research study undertaken in the context of the Iranian health system in which two main ethical values appear (...) to be operating: equity and personal choice. It asserts that the pro-market perspective, driven by individual choice appears to be dominant as it is influenced by the powerful medical profession. This is despite egalitarian intentions proclaimed in the Constitution and the majority of national laws. The study argues that the market influence in healthcare priority setting is unlikely to diminish because of weak implementation of existing laws. In conclusion, the article suggests that the private health sector could help to achieve the state’s proclaimed egalitarian goals only if new regulatory systems and new systems of governance are implemented. Such measures should be aimed at monitoring and controlling the performance of the private sector, to better manage and harness its capacities. (shrink)

An aging population is often taken to require a profound reorganization of the prevailing health care system. In particular, a more cost-effective care system is warranted and ICT-based home care is often considered a promising alternative. Modern health care devices admit a transfer of patients with rather complex care needs from institutions to the home care setting. With care recipients set up with health monitoring technologies at home, spouses and children are likely to become involved in (...) the caring process and informal caregivers may have to assist kin-persons with advanced care needs by means of sophisticated technology. This paper investigates some of the ethical implications of a near-future shift from institutional care to technology-assisted home care and the subsequent impact on the care recipient and formal- and informal care providers. (shrink)

Background. Ethics are rules or standards governing the conduct of a person or members of a profession. Medical research must be regulated to ensure that fundamental human rights are not breached in the quest for knowledge. Nigeria had no laws or specific guidelines to regulate health research until 2007, when a national regulatory body, the National Health Research Ethics Committee, was established. Its function is to ensure ethical conduct in research and to accredit institutional and state health (...) research ethics committees.Objective. To document the current role of HRECs in the ethical practice of health research in Nigeria, 4 years after the establishment of the NHREC.Methods. Functioning of the HRECs was evaluated via interviews of 14 members of state and institutional HRECs chosen from selected geopolitical zones of the country.Results. The HRECs surveyed had between nine and 15 members, with more males than females. Review meetings were held only occasionally owing to the competing interests of members, who receive no incentives for participation, and poor funding. Scientific and ethical reviews are conducted together by the same committee, but few members of the HRECs are trained in research ethics. Monitoring of research after approval is poor.Conclusion. Nigeria now has about 30 institutional HRECs, but their functioning is hampered by a shortage of both money and qualified individuals to serve on them. (shrink)

“Democratization” has recently become a popular trope in Western public discourses on medicine, where it refers to patient participation in the gathering and distribution of health-related data using various digital technologies, in order to improve healthcare technically and socially. We critically analyze the usage of the term from the perspective of the “politics of buzzwords.” Our claim is that the phrase works primarily to publicly justify the dramatic increase in the application of information and data technologies in healthcare and (...) therefore fosters the corresponding industry. As a buzzword, “democratizing healthcare” is characterized by vagueness, which is why it receives meaning only through a word collective—a group of words that provide it with a context and are often used together with it. We examine key terms associated with “democratization” in the healthcare discourse—participation, empowerment, and personalized medicine—and show that the buzzword receives rhetorical power through the ambiguous reference to these concepts. As a consequence, the idea of “democracy” becomes diluted into meaning merely “access to,” and “healthcare” is reduced to the notion of a preventive, nonacute, monitored form of medical care. (shrink)

Metro driver is the prime person who is responsible for metro operation safety. The mental health of a metro driver is very important for the operation of the subway and requires the driver to keep high mental alertness to monitor the surrounding environment and also handle emergencies under uncertain or dangerous conditions. After a long-term occupational strain, a metro driver is likely to suffer from some mental health problems, such as anxiety and depression, that ultimately threaten the lives (...) of passengers. Therefore, in this study, we focus on the psychological symptoms of metro drivers from the angle of occupational strain and neuroticism. A total of 396 metro drivers from Kunming Rail Transit Operation Co., Ltd. in China were investigated through a questionnaire survey. Symptom Checklist-90, Personal Strain Questionnaire, and NEO-Five-Factor Inventory-Neuroticism Subscale were applied to evaluate the psychological symptoms, occupational strain, and neuroticism in metro drivers, respectively. The surveyed data were analyzed by SPSS software. Based on the data, a path structural equation model was established to explore the correlation among occupational strain, psychological symptoms, and neuroticism. The results show that the scores for psychological symptoms and occupational strain are higher than the Chinese adult norm among metro drivers. The occupational strain, neuroticism, and psychological symptoms are all positively correlated in the metro drivers. Occupational stress has a direct influence on the psychological symptom, while neuroticism plays a partial mediation role between occupational strain and psychological symptoms. The results of this study can be applied to optimize the employee selection system and training system for metro operation companies. (shrink)

Background Immense volumes of personal health information are required to realize the anticipated benefits of artificial intelligence in clinical medicine. To maintain public trust in medical research, consent policies must evolve to reflect contemporary patient preferences. Methods Patients were invited to complete a 27-item survey focusing on: broad versus specific consent; opt-in versus opt-out approaches; comfort level sharing with different recipients; attitudes towards commercialization; and options to track PHI use and study results. Results 222 participants were included in (...) the analysis; 83% were comfortable sharing PHI with researchers at their own hospital, although younger patients were more uncomfortable than older patients. While 56% of patients preferred broad consent, 38% preferred specific consent; 6% preferred not sharing at all. The majority of patients preferred to be asked for permission before entry into a contact pool. Again, this trend was more pronounced for younger patients. Approximately half of patients were uncomfortable sharing PHI with commercial enterprises. Most patients preferred to track PHI usage, with the highest proportion once again reported by the youngest patients. A majority of patients also wished to be notified regarding study results. Conclusions While most patients were willing to share their PHI with researchers within their own institution, many preferred a transparent and reciprocal consent process. These data also suggest a generational shift, wherein younger patients preferred more specific consent options. Modernizing consent policies to reflect increased autonomy is crucial in fostering sustained public engagement with medical research. (shrink)

ObjectivesWuhan is the city where coronavirus disease was first reported and developed into a pandemic. However, the impact of the prolonged COVID-19 pandemic on medical staff burnout remains limited. We aimed to identify the prevalence and major determinants of burnout among medical staff 1 year after the beginning of the COVID-19 pandemic in Wuhan, China.Materials and MethodsA total of 1,602 medical staff from three hospitals in Wuhan, China, were included from November 1–28, 2021. Chi-square tests were conducted to compare the (...) prevalence of burnout across groups based on sociodemographic and professional characteristics. A multivariate analysis was performed using a forward stepwise logistic regression model.ResultsApproximately 37.39% of the medical staff experienced burnout 1 year after COVID-19 pandemic. Emotional exhaustion was the most common symptom of burnout, with 1,422 participants reporting a severe EE. Burnout was associated with insufficient social support and “neutral” or “dissatisfied” patient-physician relationships. Respondents who participated in the care of COVID-19 patients had a higher risk of burnout symptoms than those who did not participate. In particular, mental resilience was negatively associated with burnout among the medical staff.ConclusionNearly two-fifths of the participants had symptoms of burnout, with reduced personal accomplishment being the predominant symptom 1 year after COVID-19. Healthcare organizations should regularly measure and monitor burnout among the medical staff. In addition, creating positive work environments and improving the mental resilience of medical staff may be effective ways to reduce burnout. (shrink)

Reflections about the role of human choice in determining personal health occur in the writings of practitioners and laymen throughout history. The Greek and Roman writers emphasized the effect of life's activities. During the Middle Ages and Renaisance, disease continued to be seen as a consequence of disorder of the bodily humors, which were under the individual's control. The rise of the paternalistic national regimes in Europe produced the view that society had the responsibility to maintain health. (...) Jacksonian egalitarianism led to a reaction against the agressive therapies of established professional experts, a view furthered by the Thomsonian belief that people should wrest control of their health away from orthodox physicians. Among the twentieth century reactions was the movement to urge people to have doctors evaluate laypersons' health. By the 1970s a movement emerged emphasizing again personal responsibility, which, in turn, produced a concern that this was merely "victim-blaming". Views on the role of lay people in determining personal health are heavily influenced by prevailing social, political, and moral climates. Keywords: "responsibility for health: social, personal, or professional?", "causes of illness", "self-reliant health care", historical influences, responsibility for health, "victim-blaming" CiteULike Connotea Del.icio.us What's this? (shrink)

Mobile health devices pose novel questions at the intersection of philosophy and technology. Many such applications not only collect sensitive data, but also aim at persuading users to change their lifestyle for the better. A major concern is that persuasion is paternalistic as it intentionally aims at changing the agent’s actions, chipping away at their autonomy. This worry roots in the philosophical conviction that perhaps the most salient feature of living autonomous lives is displayed via agency as opposed to (...) patiency—our lives go well in virtue of what we do, rather than what happens to us. Being persuaded by a device telling us how to conduct our lives seemingly renders the agent passive, an inert recipient of technological commands. This agential bias, however, has led to a marginalization of patiential characteristics that are just as much part of our lives as are agential characteristics. To appreciate the inherent interlocking of acting and being acted upon, it is vital to acknowledge that agency and patiency are correlates, not mutually exclusive opposites. Furthermore, it is unclear whether an action can only count as agential so long as its causes are internal. Drawing on the extended mind and extended will framework, I argue that mHealth applications merely serve as volitional aids to the agent’s internal cognition. Autonomously set goals can be achieved more effectively via technology. To be persuaded by an mHealth device does not mainly—let alone exclusively—emphasize patiency; on the contrary, it can be an effective tool for technologically enhancing agency. (shrink)

Vaccines represent preventative interventions amenable to immunogenetic prediction of how human variability will influence their safety and efficacy. The genetic polymorphism among individuals within any population can render possible that the immunity elicited by a vaccine is variable in length and strength. The same immune challenge (virus and/or vaccine) could provoke partial, complete or even failed protection for some individuals treated under the same conditions. We review genetic variants and mechanistic relationships among chemokines, chemokine receptors, interleukins, interferons, interferon receptors, toll‐like (...) receptors, histocompatibility antigens, various immunoglobulins and major histocompatibility complex antigens. These are the targets for variation among macrophages, dendritic cells, natural killer cells, T‐ and B‐lymphocytes, and complement. The technology platforms (mRNA, viral vectors, proteins) utilized to produce vaccines against SARS‐CoV‐2 infections may each trigger genetically distinct immune reactogenic profiles. With DNA biobanking and immunoprofiling of recipients, global COVID‐19 vaccinations could launch a new era of personalized healthcare. (shrink)