Background: The concept of digital twins has great potential for transforming the existing health care system by making it more personalized. As a convergence of health care, artificial intelligence, and information and communication technologies, personalized health care services that are developed under the concept of digital twins raise a myriad of ethical issues. Although some of the ethical issues are known to researchers working on digital health and personalized medicine, currently, there is no (...) comprehensive review that maps the major ethical risks of digital twins for personalized health care services. Objective: This study aims to fill the research gap by identifying the major ethical risks of digital twins for personalized health care services. We first propose a working definition for digital twins for personalized health care services to facilitate future discussions on the ethical issues related to these emerging digital health services. We then develop a process-oriented ethical map to identify the major ethical risks in each of the different data processing phases. Methods: We resorted to the literature on eHealth, personalized medicine, precision medicine, and information engineering to identify potential issues and developed a process-oriented ethical map to structure the inquiry in a more systematic way. The ethical map allows us to see how each of the major ethical concerns emerges during the process of transforming raw data into valuable information. Developers of a digital twin for personalized health care service may use this map to identify ethical risks during the development stage in a more systematic way and can proactively address them. Results: This paper provides a working definition of digital twins for personalized health care services by identifying 3 features that distinguish the new application from other eHealth services. On the basis of the working definition, this paper further layouts 10 major operational problems and the corresponding ethical risks. Conclusions: It is challenging to address all the major ethical risks that a digital twin for a personalized health care service might encounter proactively without a conceptual map at hand. The process-oriented ethical map we propose here can assist the developers of digital twins for personalized health care services in analyzing ethical risks in a more systematic manner. (shrink)

Breast cancer treatment is being transformed by artificial intelligence (AI). Nevertheless, most scientists, engineers, and physicians aren't ready to contribute to the healthcare AI revolution. In this paper, we discuss our experiences teaching a new American student undergraduate course that seeks to train the next generation for cross-cultural design thinking, which we believe is critical for AI to realize its full potential in breast cancer treatment. The main tasks of this course are preparing, performing and translating interviews with healthcare professionals (...) from both Portugal and the USA. Since the course is offered in Portugal as a short-term faculty-led study abroad program, students can explore the effect of culture on healthcare delivery and the design of healthcare technologies. The learning tests demonstrated student growth for breast cancer treatment in many areas important for the development of AI. In respect to understanding breast cancer care, most students had undervalued the effect of cancer and its treatment on the quality of life of women before taking this course and most were unaware of the importance of multidisciplinary care teams. Regarding AI in medical, students became more mindful of data privacy issues and the need to consider the effect of AI on healthcare professionals. (shrink)

Medicine is often thought of as a science of the body, but it is also a science of data. In some contexts, it can even be asserted that data drive health. This article focuses on a key piece of data technology central to contemporary practices of medicine: the medical record. By situating the medical record in the perspective of its history, we inquire into how the kinds of data that are kept at sites of clinical (...) encounter often depend on informational requirements that originate well outside of the clinic, in particular in health insurance records systems. Although this dependency of today's electronic medical records on billing requirements is widely lamented by clinical providers, its history remains little studied. Following the archaeology of medicine developed by Michel Foucault in The Birth of the Clinic and expanding his methodology in light of more recent contributions to the field of media archaeology, this article excavates some of the underexplored technological conditions that help constitute today's electronic medical record. If in some contexts, it is true that data drive health, then an archaeology of medical records helps reveal how health insurance records often impact clinical care and, by extension, health and disease. (shrink)

There are numerous ways in which “the particular”—particular individuals, particular ideologies, values, beliefs, and perspectives—are sometimes overlooked, ignored, or even driven out of the healthcare profession. In many such cases, this is bad for patients, practitioners, and the profession. Hence, we should seek to find a place for the particular in health care. Specific topics that I examine in this essay include distribution of health care based on the particular needs of patients, the importance of (...) protecting physicians’ right to conscientious objection, the value in tolerating a plurality of moral and medical perspectives within the field, and more. Ultimately, as the imagery in the essay’s title suggests, I argue that if one cares about the “well-being” of the medical profession, then one should seek to avoid destroying the many diverse and particular entities that constitute it. (shrink)

Healthcare systems across the globe are struggling with increasing costs and worsening outcomes. This presents those responsible for overseeing healthcare with a challenge. Increasingly, policymakers, politicians, clinical entrepreneurs and computer and data scientists argue that a key part of the solution will be ‘Artificial Intelligence’ (AI) – particularly Machine Learning (ML). This argument stems not from the belief that all healthcare needs will soon be taken care of by “robot doctors.” Instead, it is an argument that rests on (...) the classic counterfactual definition of AI as an umbrella term for a range of techniques that can be used to make machines complete tasks in a way that would be considered intelligent were they to be completed by a human. Automation of this nature could offer great opportunities for the improvement of healthcare services and ultimately patients’ health by significantly improving human clinical capabilities in diagnosis, drug discovery, epidemiology, personalised medicine, and operational efficiency. However, if these AI solutions are to be embedded in clinical practice, then at least three issues need to be considered: the technical possibilities and limitations; the ethical, regulatory and legal framework; and the governance framework. In this article, we report on the results of a systematic analysis designed to provide a clear overview of the second of these elements: the ethical, regulatory and legal framework. We find that ethical issues arise at six levels of abstraction (individual, interpersonal, group, institutional, sectoral, and societal) and can be categorised as epistemic, normative, or overarching. We conclude by stressing how important it is that the ethical challenges raised by implementing AI in healthcare settings are tackled proactively rather than reactively and map the key considerations for policymakers to each of the ethical concerns highlighted. (shrink)

Apple CEO Tim Cook claimed in 2019 that his company’s greatest achievement will be “about health.” But the pandemic has shown that Big Tech’s involvement in health care is all about data collection.

Ontologies are being ever more commonly used in biomedical informatics and we provide a survey of some of these uses, and of the relations between ontologies and other terminology resources. In order for ontologies to become truly useful, two objectives must be met. First, ways must be found for the transparent evaluation of ontologies. Second, existing ontologies need to be harmonised. We argue that one key foundation for both ontology evaluation and harmonisation is the adoption of a realist paradigm in (...) ontology development. For science-based ontologies of the sort which concern us in the eHealth arena, it is reality that provides the common benchmark against which ontologies can be evaluated and aligned within larger frameworks. Given the current multitude of ontologies in the biomedical domain the need for harmonisation is becoming ever more urgent. We describe one example of such harmonisation within the ACGT project, which draws on ontology-based computing as a basis for sharing clinical and laboratory data on cancer research. (shrink)

The study investigated factors that influence the uptake of maternal healthcare services by women in Zimbabwe, using a logit model. Data from the Zimbabwe Demographic Health Survey (ZDHS, 2015) was used. Deteriorating maternal health indicators motivated the study. The effect of socio-economic and demographic factors on the probability of utilising maternal healthcare services was examined. Descriptive statistics and a logit model were used for data analysis. Results from the logit model show that region of residence, insurance (...) cover, educational level, employment status, maternal age, birth order, place of residence, number of living children, maternal age and household income all influence the utilisation of maternal healthcare services by women in Zimbabwe. Basing on research findings, the study recommends that relevant authorities make more available vocational training centres and education institutions since education was found to influence the uptake of maternal healthcare services. There is need to encourage family planning so as to reduce the number of children, especially among the apostolic sect, which affects the uptake of maternal healthcare. Compulsory national health insurance schemes could be adopted to mitigate the effect of low income that discourages the use of institutional facilities for delivery. The issue of balanced regional development needs to be pursued through accelerating devolution to ensure equal access to maternal healthcare facilities in all provinces. (shrink)

Universal health coverage (UHC) is at the center of current efforts to strengthen health systems and improve the level and distribution of health and health services. This document is the final report of the WHO Consultative Group on Equity and Universal Health Coverage. The report addresses the key issues of fairness and equity that arise on the path to UHC. As such, the report is relevant for every actor that affects that path and governments in (...) particular, as they are in charge of overseeing and guiding the progress toward UHC. (shrink)

An estimated 700,000 people in the United States have "long COVID," that is, symptoms of COVID-19 persisting beyond three weeks. COVID-19 and its long-term sequelae are strongly influenced by social determinants such as poverty and by structural inequalities such as racism and discrimination. Primary care providers are in a unique position to provide and coordinate care for vulnerable patients with long COVID. Policy measures should include strengthening primary care, optimizing data quality, and addressing the multiple nested (...) domains of inequity. (shrink)

Objective: This main aim of the study is to explore COVID-19 pandemic problems from the perspective of public health-clinical care ethics through online mediareports in Turkey. Method: This research was designed as a descriptive and qualitative study that assesses COVID-19 through online media reports on critics between the periods of March 11, 2020 and April 2 2020 as a quantitative as number of reports and qualitative study, across Turkey. Reports were from Turkish Medical Association websites which included newspaper (...) reports. Study data were presented as statistically and qualitative data case and headlines. No ethical or ofTicial permission was sought as the study was conducted through open access internet news sites. Results: This online reports analysis retrieved about 6723 articles about the COVID-19. According to study data, information about COVID-19 were themed as follows: general deTiciencies in taking action and isolation, lack of isolation, passengers and transport vehicles not quarantined ; insufTicient diagnostic tests, decision to test after healthcare professionals become infected, lack of equipment, lack of evaluation outbreak countries [Table 2]. Conclusion and Suggestions: COVID-19 is a pandemic and is a global public health problem that concerns every individual and needs to be handled carefully. This requires a multi-faceted preparation and education. In this context, healthcare professionals should be well trained in this aspect and have all the necessary equipment throughout the process. Additionally, it should work systematically with the cooperation of all health organizations, the Ministry of Health, local governments and of course the media, in order to inform society, fairly distribute the resources and to implement the safety measures effectively. BrieTly, lack of transparency, insufTicient information, limited resources, lack of public health protection measures such as partial quarantine decision, partial implementation of the scientiTic board's re c ommenda ti on s fo r e c on omi c rea s on s, and contradiction of the explanations are revealed as serious ethical problems. (shrink)

Wearable devices are increasingly present in the health context, as tools for biomedical research and clinical care. In this context, wearables are considered key tools for a more digital, personalised, preventive medicine. At the same time, wearables have also been associated with issues and risks, such as those connected to privacy and data sharing. Yet, discussions in the literature have mostly focused on either technical or ethical considerations, framing these as largely separate areas of discussion, and the (...) contribution of wearables to the collection, development, application of biomedical knowledge has only partially been discussed. To fill in these gaps, in this article we provide an epistemic (knowledgerelated) overview of the main functions of wearable technology for health: monitoring, screening, detection, and prediction. On this basis, we identify 4 areas of concern in the application of wearables for these functions: data quality, balanced estimations, health equity, and fairness. To move the field forward in an effective and beneficial direction, we present recommendations for the 4 areas: local standards of quality, interoperability, access, and representativity. (shrink)

The COVID-19 pandemic demonstrated the benefits of international data sharing. Data sharing enabled the health care policy makers to make decisions based on real-time data, it enabled the tracking of the virus, and importantly it enabled the development of vaccines that were crucial to mitigating the impact of the virus. This data sharing is not the norm as data sharing needs to navigate complex ethical and legal rules, and in particular, the fragmented application (...) of the General Data Protection Regulation (GDPR). The introduction of the draft regulation for a European Health Data Space (EHDS) in May 2022 seeks to address some of these legal issues. If passed, it will create an obligation to share electronic health data for certain secondary purposes. While there is a clear need to address the legal complexities involved with data sharing, it is critical that any proposed reforms are in line with ethical principles and the expectations of the data subjects. In this paper we offer a critique of the EHDS and offer some recommendations for this evolving regulatory space. (shrink)

The translational research community, in general, and the Clinical and Translational Science Awards (CTSA) community, in particular, share the vision of repurposing EHRs for research that will improve the quality of clinical practice. Many members of these communities are also aware that electronic health records (EHRs) suffer limitations of data becoming poorly structured, biased, and unusable out of original context. This creates obstacles to the continuity of care, utility, quality improvement, and translational research. Analogous limitations to sharing (...) objective data in other areas of the natural sciences have been successfully overcome by developing and using common ontologies. This White Paper presents the authors’ rationale for the use of ontologies with computable semantics for the improvement of clinical data quality and EHR usability formulated for researchers with a stake in clinical and translational science and who are advocates for the use of information technology in medicine but at the same time are concerned by current major shortfalls. This White Paper outlines pitfalls, opportunities, and solutions and recommends increased investment in research and development of ontologies with computable semantics for a new generation of EHRs. (shrink)

Referent Tracking (RT) advocates the use of instance unique identifiers to refer to the entities comprising the subject matter of patient health records. RT promises many benefits to those who use health record data to improve patient care. To further the adoption of the paradigm we provide an illustration of how data from an EHR application needs to be decomposed in order to make it accord with the tenets of RT. We describe the ontological principles (...) on which this decomposition is based in order to allow integration efforts to be applied in similar ways to other EHR applications. We find that an ordinary statement from an EHR contains a surprising amount of “hidden” data that are only revealed by its decomposition according to these principles. (shrink)

As health systems around the world turn towards highly distributed, specialized and cooperative structures to increase quality and safety of care as well as efficiency and efficacy of delivery processes, there is a growing need for supporting communication and collaboration of all parties involved with advanced ICT solutions. The Electronic Health Record (EHR) provides the information platform which is maturing towards the eHealth core application. To meet the requirements for sustainable, semantically interoperable, and trustworthy EHR solutions, different (...) standards and different national strategies have been established. The workshop summarizes the requirements for such advanced EHR systems and their underlying architecture, presents different strategies and solutions advocated by corresponding protagonists, discusses pros and cons as well as harmonization and migration strategies for those approaches. It particularly highlights a turn towards ontology-driven architectures. (shrink)

It has been argued that ethical frameworks for data science often fail to foster ethical behavior, and they can be difficult to implement due to their vague and ambiguous nature. In order to overcome these limitations of current ethical frameworks, we propose to integrate the analysis of the connections between technical choices and sociocultural factors into the data science process, and show how these connections have consequences for what data subjects can do, accomplish, and be. Using healthcare (...) as an example, attention to sociocultural conversion factors relevant to health can help in navigating technical choices that require broader considerations of the sociotechnical system, such as metric tradeoffs in model validation, resulting in better ethical and technical choices. This approach promotes awareness of the ethical dimension of technical choices by data scientists and others, and that can foster the cultivation of 'ethical skills' as integral to data science. (shrink)

One branch of bioethics assumes that mainly agents of the state are responsible for public health. Following Susan Sherwin’s relational ethics, we suggest moving away from a “state-centered” approach toward a more thoroughly relational approach. Indeed, certain agents must be reconstituted in and through shifting relations with others, complicating discussions of responsibility for public health. Drawing on two case studies—the health politics and activism of the Black Panther Party and the work of the Common Ground Collective in (...) post-Katrina New Orleans—we argue for the need to attend more carefully to the limitations of states and state-driven public health programs. (shrink)

In recent years there has been an explosion of interest in Artificial Intelligence (AI) both in health care and academic philosophy. This has been due mainly to the rise of effective machine learning and deep learning algorithms, together with increases in data collection and processing power, which have made rapid progress in many areas. However, use of this technology has brought with it philosophical issues and practical problems, in particular, epistemic and ethical. In this paper the authors, (...) with backgrounds in philosophy, maternity care practice and clinical research, draw upon and extend a recent framework for shared decision-making (SDM) that identified a duty of care to the client's knowledge as a necessary condition for SDM. This duty entails the responsibility to acknowledge and overcome epistemic defeaters. This framework is applied to the use of AI in maternity care, in particular, the use of machine learning and deep learning technology to attempt to enhance electronic fetal monitoring (EFM). In doing so, various sub-kinds of epistemic defeater, namely, transparent, opaque, underdetermined, and inherited defeaters are taxonomized and discussed. The authors argue that, although effective current or future AI-enhanced EFM may impose an epistemic obligation on the part of clinicians to rely on such systems' predictions or diagnoses as input to SDM, such obligations may be overridden by inherited defeaters, caused by a form of algorithmic bias. The existence of inherited defeaters implies that the duty of care to the client's knowledge extends to any situation in which a clinician (or anyone else) is involved in producing training data for a system that will be used in SDM. Any future AI must be capable of assessing women individually, taking into account a wide range of factors including women's preferences, to provide a holistic range of evidence for clinical decision-making. (shrink)

Public health care interventions—regarding vaccination, obesity, and HIV, for example—standardly take the form of information dissemination across a community. But information networks can vary importantly between different ethnic communities, as can levels of trust in information from different sources. We use data from the Greater Pittsburgh Random Household Health Survey to construct models of information networks for White and Black communities--models which reflect the degree of information contact between individuals, with degrees of trust in information from (...) various sources correlated with positions in that social network. With simple assumptions regarding belief change and social reinforcement, we use those modeled networks to build dynamic agent-based models of how information can be expected to flow and how beliefs can be expected to change across each community. With contrasting information from governmental and religious sources, the results show importantly different dynamic patterns of belief polarization within the two communities. (shrink)

Most people are completely oblivious to the danger that their medical data undergoes as soon as it goes out into the burgeoning world of big data. Medical data is financially valuable, and your sensitive data may be shared or sold by doctors, hospitals, clinical laboratories, and pharmacies—without your knowledge or consent. Medical data can also be found in your browsing history, the smartphone applications you use, data from wearables, your shopping list, and more. At (...) best, data about your health might end up in the hands of researchers on whose good will we depend to avoid abuses of power.2 Most likely, it will end up with data brokers who might sell it to a future employer, or an insurance company, or the government. At worst, your medical data may end up in the hands of criminals eager to commit extortion or identity theft. In addition to data harms related to exposure and discrimination, the collection of sensitive data by powerful corporations risks the creation of data monopolies that can dominate and condition access to health care. -/- This chapter aims to explore the challenge that big data brings to medical privacy. Section I offers a brief overview of the role of privacy in medical settings. I define privacy as having one’s personal information and one’s personal sensorial space (what I call autotopos) unaccessed. Section II discusses how the challenge of big data differs from other risks to medical privacy. Section III is about what can be done to minimise those risks. I argue that the most effective way of protecting people from suffering unfair medical consequences is by having a public universal healthcare system in which coverage is not influenced by personal data (e.g., genetic predisposition, exercise habits, eating habits, etc.). (shrink)

It has been suggested that to overcome the challenges facing the UK’s National Health Service (NHS) of an ageing population and reduced available funding, the NHS should be transformed into a more informationally mature and heterogeneous organisation, reliant on data-based and algorithmically-driven interactions between human, artificial, and hybrid (semi-artificial) agents. This transformation process would offer significant benefit to patients, clinicians, and the overall system, but it would also rely on a fundamental transformation of the healthcare system in (...) a way that poses significant governance challenges. In this article, we argue that a fruitful way to overcome these challenges is by adopting a pro-ethical approach to design that analyses the system as a whole, keeps society-in-the-loop throughout the process, and distributes responsibility evenly across all nodes in the system. (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)

This study analyzed the monitoring and evaluation of HIV/AIDS prevention programs in Southern Senatorial District of Cross River State, Nigeria. The study considered different levels of care/support and tested for locational variations in the monitoring/evaluation of HIV/AIDs prevention programs. A descriptive survey research design was utilized. This study covered 596 public health employees (doctors, nurses, pharmacists, and laboratory employees) in the study area. A sample of 239 respondents was chosen using the proportional stratified random sampling procedure. Data (...) was collected using a questionnaire constructed by the researchers and validated by specialists. Data gathered were analyzed using descriptive and inferential statistics. Results indicated that HIV/AIDs programs have been successfully monitored/evaluated to a high extent. High rates of success in the monitoring/evaluation of HIV/AIDs prevention programs are attributable to high rates of care/support provided to people living with HIV/AIDs. There was a significant variation in the monitoring/evaluation of HIV/AIDs prevention programs based on the location of health facilities, with higher rates recorded for urban areas. Based on the findings, it was concluded that the monitoring/evaluation of HIV/AIDs prevention programs in the Southern Senatorial District of Cross River State had recorded a significant level of success. The study recommended, among others, that there should be even distribution of medical facilities, resources and personnel to both urban and rural areas to promote equity and access to materials needed to contain or mitigate the spread of the pandemic across all locations. (shrink)

How do people understand the concepts of mental health and disorder? The objective of this paper is to examine the impact of several factors on people’s judgments about whether a condition constitutes a mental disorder or a healthy state. Specifically, this study examines the impact of the source of the condition, its outcome, individual valuation (i.e., the value the individual attaches to the condition), and group valuation (i.e., the value the relevant group attaches to the condition). While we find (...) that people’s health and disorder judgments are driven by perceived dysfunction, we also find that health and disorder judgments are impacted differently by these factors. Health judgements are impacted by outcome and individual valuation, and disorder judgments are impacted by condition source. These results suggest that the folk concept of mental health is positive (i.e., mental health is more than the absence of mental disorder) and normativist (i.e., value judgments play a significant role in determining whether a condition counts as healthy), while the concept of mental disorder aligns with a naturalist perspective, at least to the extent that dysfunction plays an important role in categorizing a condition as a disorder. However, our finding that people’s dysfunction judgments are influenced by individual valuation and outcomes poses a strong challenge to naturalist accounts. To provide access to our supplementary data, an appendix has been included. (shrink)

Ethics should guide the design of electronic health records (EHR), and recognized principles of bioethics can play an important role. This approach was adopted recently by a team of informaticists designing and testing a system where patients exert granular control over who views their personal health information. While this method of building ethics in from the start of the design process has significant benefits, questions remain about how useful the application of bioethics principles can be in this process, (...) especially when principles conflict. For instance, while the ethical principle of respect for autonomy supports a robust system of granular control, the principles of beneficence and non-maleficence counsel restraint due to the danger of patients being harmed by restrictions on provider access to data. Conflict between principles has long been recognized by ethicists and has even motivated attacks on approaches that state and apply principles. In this paper we show how using ethical principles can help in the design of EHRs by first, explaining how ethical principles can and should be used generally, and then by, discuss how attention to details in specific cases can show that the tension between principles is not as bad as it initially appeared. We conclude by suggesting further ways in which the application of these (and other) principles can add value to the ongoing discussion of patient involvement in their health care. This is a new approach to linking principles to informatics design that we expect will stimulate further interest. (shrink)

Background: The World Health Organization has endorsed a community-based health insurance scheme (CBHIS) as a shared financing plan to improve access to health services and ensure universal coverage of the healthcare delivery system. Such a contributory scheme is the most likely option to provide health insurance coverage when governments cannot offer direct health care support. Despite improvements in access to current healthcare services, Ethiopia’s healthcare delivery remained low, owing to the country’s underdeveloped healthcare finance (...) system. As a result, the present study assessed CBHIS coverage and its predictors in Ethiopia at the individual and community level. Methods: The availability of CBHIS was checked via a criterion: at least one of the cluster respondents had to be enrolled in CBHIS. This study was based on secondary data from the Ethiopia Mini Demography and Health Survey (EMDHS) 2019 and included 7724 respondents. The study population was described using percentage and frequency. Four multilevel mixed-effects logistic regression modelling stages were performed to control for variations due to heterogeneity across clusters, and determinant predictors of CBHIS enrollment were outplayed. Results: The prevalence of CBHIS enrollment in Ethiopia was 33.13%. Rural residents were 3.218 times (AOR = 3.218; 95% CI: 1.521, 6.809), male household heads were 1.574 times (AOR = 1.574, 95% CI: 1.105, 2.241), getting funds from the safety net program were times 2.062 (AOR = 2.062, 95% CI: 1.297, 3.279), attending the primary educational level was 1.686 times (AOR = 1.686, 95% CI: 1.007, 2.821), bank accounts were 1.373 times (AOR = 1.373, 95% CI: 1.052, 1.792), and wealth index was 1.356 times (AOR = 1.356, 95% CI: 1.001, 1.838) more likely associated with CBHIS coverage, whereas the regions, the other religions, and women aged 20– 24 had lower odds of CBHIS coverage. Conclusion: In Ethiopia, regional healthcare expenditure per capital, religious affiliation, women age range, residents, sex of household head, funds from the safety net program, formal educational level, and having bank accounts were associated with community-based health insurance scheme coverage. (shrink)

Traditional medical practices and relationships are changing given the widespread adoption of AI-driven technologies across the various domains of health and healthcare. In many cases, these new technologies are not specific to the field of healthcare. Still, they are existent, ubiquitous, and commercially available systems upskilled to integrate these novel care practices. Given the widespread adoption, coupled with the dramatic changes in practices, new ethical and social issues emerge due to how these systems nudge users into making (...) decisions and changing behaviours. This article discusses how these AI-driven systems pose particular ethical challenges with regards to nudging. To confront these issues, the value sensitive design approach is adopted as a principled methodology that designers can adopt to design these systems to avoid harming and contribute to the social good. The AI for Social Good factors are adopted as the norms constraining maleficence. In contrast, higher-order values specific to AI, such as those from the EU High-Level Expert Group on AI and the United Nations Sustainable Development Goals, are adopted as the values to be promoted as much as possible in design. The use case of Amazon Alexa's Healthcare Skills is used to illustrate this design approach. It provides an exemplar of how designers and engineers can begin to orientate their design programs of these technologies towards the social good. (shrink)

At the beginning of the COVID-19 pandemic, high hopes were placed on digital contact tracing. Digital contact tracing apps can now be downloaded in many countries, but as further waves of COVID-19 tear through much of the northern hemisphere, these apps are playing a less important role in interrupting chains of infection than anticipated. We argue that one of the reasons for this is that most countries have opted for decentralised apps, which cannot provide a means of rapidly informing users (...) of likely infections while avoiding too many false positive reports. Centralised apps, in contrast, have the potential to do this. But policy making was influenced by public debates about the right app configuration, which have tended to focus heavily on privacy, and are driven by the assumption that decentralised apps are “privacy preserving by design”. We show that both types of apps are in fact vulnerable to privacy breaches, and, drawing on principles from safety engineering and risk analysis, compare the risks of centralised and decentralised systems along two dimensions, namely the probability of possible breaches and their severity. We conclude that a centralised app may in fact minimise overall ethical risk, and contend that we must reassess our approach to digital contact tracing, and should, more generally, be cautious about a myopic focus on privacy when conducting ethical assessments of data technologies. (shrink)

On 8th August 2019, Secretary of State for Health and Social Care, Matt Hancock, announced the creation of a £250 million NHS AI Lab. This significant investment is justified on the belief that transforming the UK’s National Health Service (NHS) into a more informationally mature and heterogeneous organisation, reliant on data-based and algorithmically-driven interactions, will offer significant benefit to patients, clinicians, and the overall system. These opportunities are realistic and should not be wasted. However, they (...) may be missed (one may recall the troubled Care.data programme) if the ethical challenges posed by this transformation are not carefully considered from the start, and then addressed thoroughly, systematically, and in a socially participatory way. To deal with this serious risk, the NHS AI Lab should create an Ethics Advisory Board and monitor, analyse, and address the normative and overarching ethical issues that arise at the individual, interpersonal, group, institutional and societal levels in AI for healthcare. (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)

Patient preference predictors aim to solve the moral problem of making treatment decisions on behalf of incapacitated patients. This commentary on a case of an unrepresented patient at the end of life considers 3 related problems of such predictors: the problem of restricting the scope of inputs to the models (the “scope” problem), the problem of weighing inputs against one another (the “weight” problem), and the problem of multiple reasonable solutions to the scope and weight problems (the “multiple reasonable models” (...) problem). Each of these problems poses challenges to reliably implementing patient preference predictors in important, high-stakes health care decision making. This commentary also suggests a way forward. (shrink)

The internet of things is increasingly spreading into the domain of medical and social care. Internet-enabled devices for monitoring and managing the health and well-being of users outside of traditional medical institutions have rapidly become common tools to support healthcare. Health-related internet of things (H-IoT) technologies increasingly play a key role in health management, for purposes including disease prevention, real-time tele-monitoring of patient’s functions, testing of treatments, fitness and well-being monitoring, medication dispensation, and health research (...) data collection. H-IoT promises many benefits for health and healthcare. However, it also raises a host of ethical problems stemming from the inherent risks of Internet enabled devices, the sensitivity of health-related data, and their impact on the delivery of healthcare. This paper maps the main ethical problems that have been identified by the relevant literature and identifies key themes in the on-going debate on ethical problems concerning H-IoT. (shrink)

Background Bronchial asthma is one of the most common chronic conditions among children. Despite the improvement in asthma treatment regimens, its prevalence and related morbidity are increasing, especially among underserved, minority children. There are barriers in the management of asthma, which may impact the quality of outcomes. The goal of this study is to explore these barriers. Methods A cross-sectional study was conducted on interview data collected through 2019 from mothers of children (aged 6 - 12 years) with asthma (...) visiting, for convenience, a public shopping mall. The interviewees were randomly selected, because they met the inclusion criteria. Participants were considered if the mother answered “yes” to the following questions: Has your child had physician-diagnosed asthma? Is your child currently taking asthma medications of asthma? Two community nurses conducted the interviews. Data was obtained using administrative questionnaires. Data were analyzed using SPSS version 21.0 (IBM Inc., Chicago, IL, USA). Descriptive statistics of percentage, mean, frequency and standard deviation were applied for categorical and continuous variables. Results Three hundred mothers participated in this study. Their average age was 36.8 years, 55% were housekeepers by profession, and 34% had obtained less than high school education. The majority of children (61%) were males, 45% had moderate asthma, and 42% had mild asthma. The most frequent types of barriers identified by parents were environmental factors (67.7%), followed by health care providers (63%), the health care system (48%), and patient or family characteristics (43%). Mothers were specifically concerned about the use, safety, and long-term complications of medications, the impact of exercise limitation on their child’s quality of life, and their own quality of life. Conclusion This study showed several barriers against asthma care in Saudi Arabia, which mainly related to environmental or personal characteristics. This highlights the need to enhance current policies within the health care system in Saudi Arabia to overcome these barriers. (shrink)

This chapter provides a high-level overview of key ethical issues raised by the use of surveillance technologies, such as digital contact tracing, disease surveillance, and vaccine passports, to combat the COVID-19 pandemic. To some extent, these issues are entirely familiar. I argue that they raise old questions in new form and with new urgency, at the intersection of information ethics, research ethics, and public health. Whenever we deal with data-driven technologies, we have to ask how they fare (...) in relation to important values like privacy, fairness, transparency, and accountability—values emphasized by information ethics scholars. Likewise, when such technologies put individuals at risk in order to drive scientific research and knowledge construction, we have to ask how they implicate values such as autonomy, beneficence and non-maleficence, and justice—values central to research ethics. And as researchers focusing on health information have long argued, when the data collected by these technologies pertain to individuals and public health, these ethical issues take on a special cast. -/- It is also true, however, that the pandemic has placed these questions in a new and revealing light. I highlight three insights from information ethics and research ethics that can help us navigate this difficult terrain. First, the value of privacy is instrumental, not absolute—there is nothing wrong with asking how to balance privacy against other important values. Second, privacy has both individual and social importance. Weighing privacy, on one hand, and public health, on the other, is not, therefore, a contest between individual and collective interests. Rather, it is an attempt to balance disparate public goods. Third, we ought to put these kinds of ethical decisions in the hands of third parties, rather than leaving them up to those who directly stand to benefit from them. In the case of pandemic surveillance technologies, this should mean more public, democratic oversight. (shrink)

On the basis of PM2.5 data of the national air quality monitoring sites, local population data, and baseline all-cause mortality rate, PM2.5-related health economic benefits of the Air Improvement Action Plan implemented in Wuhan in 2013–2017 were investigated using health-impact and valuation functions. Annual avoided premature deaths driven by the average concentration of PM2.5 decrease were evaluated, and the economic benefits were computed by using the value of statistical life (VSL) method. Results showed that the (...) number of avoided premature deaths in Wuhan are 21,384 (95% confidence interval (CI): 15,004 to 27,255) during 2013–2017, due to the implementation of the Air Improvement Action Plan. According to the VSL method, the obtained economic benefits of Huangpi, Wuchang, Hongshan, Xinzhou, Jiang’an, Hanyang, Jiangxia, Qiaokou, Jianghan, Qingshan, Caidian, Dongxihu, and Hannan District were 8.55, 8.19, 8.04, 7.39, 5.78, 4.84, 4.37, 4.04, 3.90, 3.30, 2.87, 2.42, and 0.66 billion RMB (1 RMB = 0.1417 USD On 14 October 2019), respectively. These economic benefits added up to 64.35 billion RMB (95% CI: 45.15 to 82.02 billion RMB), accounting for 4.80% (95% CI: 3.37% to 6.12%) of the total GDP of Wuhan in 2017. Therefore, in the process of formulating a regional air quality improvement scheme, apart from establishing hierarchical emission-reduction standards and policies, policy makers should give integrated consideration to the relationship between regional economic development, environmental protection and residents’ health benefits. Furthermore, for improving air quality, air quality compensation mechanisms can be established on the basis of the status quo and trends of air quality, population distribution, and economic development factors. (shrink)

The increased complexity of health information management sows the seeds of inequalities between health care stakeholders involved in the production and use of health information. Patients may thus be more vulnerable to use of their data without their consent and breaches in confidentiality. Health care providers can also be the victims of a health information system that they do not fully master. Yet, despite its possible drawbacks, the management of health information (...) is indispensable for advancing science, medical care and public health. Therefore, the central question addressed by this paper is how to manage health information ethically? This article argues that Paul Ricœur’s ‘‘little ethics’’, based on his work on hermeneutics and narrative identity, provides a suitable ethical framework to this end. This ethical theory has the merit of helping to harmonise self-esteem and solicitude amongst patients and healthcare providers, and at the same time provides an ethics of justice in public health. A matrix, derived from Ricœur’s ethics, has been developed as a solution to overcoming possible conflicts between privacy interests and the common good in the management of health information. (shrink)

Women constituting almost half of the population of a country are the major human resource and accordingly the involvment of women in every sphere - economic, social, political is urgently felt for the development of a country. Health is one of the major infrastructures to constitute a strong human resource and is emerging as a significant element of human capital and a vital indicator of human development. Improvement in the health status of women plays a very important role (...) in the improvement of socio-economic condition of an economy. In India nearly 70% of the population are coming from rural areas and are suffering and dying from preventable diseases due to unavailability and inaccessibility of health care services. Among the rural population women are the most sufferer. They are trapped in poverty, malnutrition, low level of literacy, and are facing high rate of infant and maternal mortality rate with low expectancy of life at birth etc. Providing sound health care to these rural women is the urgent need and accordingly the Government of India has launched National Rural Health Mission to improve the availability of and access to quality health care by people, especially for those residing in rural areas, the poor, and women. ASHA – one of the stakeholders of NRHM play a very important role in smoothening the delivery of health care services to the rural population specially the woman. A female from a village acts as an ASHA in improvising the health condition of the rural women. The present paper is prepared with the following objectives: 1. To study how ASHA is functioning in providing health care services. Methodology and data base: The study will be based on both primary and secondary data. The primary data will be collected by using multistage sampling. In the first stage of sample selection 2 Community Blocks of Karimganj will be selected at random. From the selected 2(two) Community Blocks 1 Gaon Panchayat from each Blocks will be selected on the basis of simple random sampling. From each of 2 selected Gaon Panchayat 2 villages will be selected by using simple random sampling. From each village 10% of total household will be surveyed and the ASHA workers will be directly interviewed. The main sources of secondary data are the official publication of governments. (shrink)

Through this contribution I aim to explore the horizons and limits of digital medicine in light of an embodied approach to the issue of care. I will sketch the historical background of digital medicine and show the contemporary status of this interdisciplinary field, as well as its applications and outcomes. Then, I will address a critique of the computational theory of mind (CTM) upon which many contemporary mental health apps are designed. This approach to the mind is inscribed (...) into the modern trend of neuromania, which conceives the embodied, living human being as a mere series of data analyses and algorithms, with the brain as the seat of the person. Drawing on continental philosophy and classical phenomenology I will develop a notion of health conceived as a moral enterprise, showing how wellbeing and vitality are not reducible to a product made by technologies or doctors, but rather they are the results of an embodied encounter. As such, empathy and person-centered care cannot be achieved by digital medicine. They are the result of a journey into the regions of recognition, embodied presence and the aliveness constituting the person. Finally, I will show how the issue of care cannot be separated from an embodied encounter between people, especially in case of dementia. (shrink)

Objectives The study aims to evaluate the impact of the Revised Health Insurance Law 2014 on the utilisation of outpatient and inpatient care services, healthcare services utilisation at different levels of providers, types of providers and types of visits across different entitlement groups. Design/setting Secondary data from two waves of the Vietnam Household Living Standard Survey (VHLSS) 2016, VHLSS 2014 were used. A cross-sectional study applying propensity score matching was conducted. Participants A total of 4900 individuals who (...) reported using healthcare services are analysed. Outcomes measure Numbers of outpatient and inpatient visits, frequency of healthcare service utilisation at commune health stations, district hospitals, provincial hospitals, public and private health facilities, number of visits at health facility for medical treatment and health checks per year. Results The result indicates that health insurance (HI) policy increased the number of outpatient visits for the enrolled between 0.87 and 1.29. The greatest impact was found on participants of heavily subsidised health insurance (HSHI) programmes with 1.29 visits per person per year. Similarly, an increase between 0.08 and 0.16 in the number of inpatient admissions was because of participation in HI. With regard to type of healthcare providers, the study found that participation in HI has the most effect on the use of healthcare services at district hospitals. However, the study demonstrated that the impacts of HI on the increase in the frequency of visiting commune health stations, number of visits at the provincial hospital for HSHI groups, and number of visits at health facilities for health check and consultation were sensitive to unobserved characteristics. Conclusion Our findings imply that policy-makers in Vietnam could continue expanding health insurance coverage to increase access to healthcare services for citizens, especially vulnerable groups. In addition, the government should draw more attention to primary healthcare level. (shrink)

This study presents a neural network-based model for predicting smoke potential in a specific area using a Kaggle-derived dataset with 15 environmental features and 62,631 samples. Our five-layer neural network achieved an accuracy of 89.14% and an average error of 0.000715, demonstrating its effectiveness. Key influential features, including temperature, humidity, crude ethanol, pressure, NC1.0, NC2.5, SCNT, and PM2.5, were identified, providing insights into smoke occurrence. This research aids in proactive smoke mitigation and public health protection. The model's accuracy and (...) feature analysis empower decision-makers, with potential applications in real-time smoke event monitoring and preparedness strategies. This work contributes to the field of air quality forecasting and environmental stewardship, offering a data-driven approach to address smoke-related challenges and enhance community well-being. (shrink)

Background Previous analyses of democracy and population health have focused on broad measures, such as life expectancy at birth and child and infant mortality, and have shown some contradictory results. We used a panel of data spanning 170 countries to assess the association between democracy and cause-specific mortality and explore the pathways connecting democratic rule to health gains. -/- Methods We extracted cause-specific mortality and HIV-free life expectancy estimates from the Global Burden of Diseases, Injuries, and Risk (...) Factors Study 2016 and information on regime type from the Varieties of Democracy project. These data cover 170 countries and 46 years. From the Financing Global Health database, we extracted gross domestic product (GDP) per capita, also covering 46 years, and Development Assistance for Health estimates starting from 1990 and domestic health spending estimates starting from 1995. We used a diverse set of empirical methods—synthetic control, within-country variance decomposition, structural equation models, and fixed-effects regression—which together provide a robust analysis of the association between democratisation and population health. -/- Findings HIV-free life expectancy at age 15 years improved significantly during the study period (1970–2015) in countries after they transitioned to democracy, on average by 3% after 10 years. Democratic experience explains 22·27% of the variance in mortality within a country from cardiovascular diseases, 16·53% for tuberculosis, and 17·78% for transport injuries, and a smaller percentage for other diseases included in the study. For cardiovascular diseases, transport injuries, cancers, cirrhosis, and other non-communicable diseases, democratic experience explains more of the variation in mortality than GDP. Over the past 20 years, the average country's increase in democratic experience had direct and indirect effects on reducing mortality from cardiovascular disease (−9·64%, 95% CI −6·38 to −12·90), other non-communicable diseases (−9·14%, −4·26 to −14·02), and tuberculosis (−8·93%, −2·08 to −15·77). Increases in a country's democratic experience were not correlated with GDP per capita between 1995 and 2015 (ρ=–0·1036; p=0·1826), but were correlated with declines in mortality from cardiovascular disease (ρ=–0·3873; p<0·0001) and increases in government health spending (ρ=0·4002; p<0·0001). Removal of free and fair elections from the democratic experience variable resulted in loss of association with age-standardised mortality from non-communicable diseases and injuries. -/- Interpretation When enforced by free and fair elections, democracies are more likely than autocracies to lead to health gains for causes of mortality (eg, cardiovascular diseases and transport injuries) that have not been heavily targeted by foreign aid and require health-care delivery infrastructure. International health agencies and donors might increasingly need to consider the implications of regime type in their efforts to maximise health gains, particularly in the context of ageing populations and the growing burden of non-communicable diseases. (shrink)

This phenomenological study aimed to determine the challenges, coping strategies, and significant insights of COVID-19 frontliners during the pandemic. The study utilized a qualitative phenomenological approach, and using purposive sampling technique, the eight (8) participants who worked as a COVID-19 frontliner in General Santos City were identified for an in-depth interview. Thematic analysis was used as a data analysis tool to interpret the data gathered. The results found that COVID-19 frontliners experienced different challenges during the pandemic, including the (...) fear of being infected with the disease, dealing with different patients, long and busy working hours, and mental health disturbance. As for their coping strategies in dealing with those challenges, the COVID-19 frontliners used their families’ support, taking care of themselves, as well as having strong faith in God. Also, valuing public health measures, the importance of self-care, and extending patience and understanding toward the patients were the significant insights shared by the COVID-19 frontliners. Moreover, understanding the impact of COVID-19 on the frontliners’ mental health can be the key to implementing plans and effective interventions to help them function more efficiently. (shrink)

A better understanding of the factors that mitigate the consequences of nutrition-related hazards and encourage resilience is required to prevent against or improve poor development outcomes. This study included a review of the literature. Dietary adequacy is essential for growth and development, but current data suggests that nutrition supplements alone is insufficient to generate resilience to defend against, alleviate, and recover from nutritional stressors, as well as to promote healthy development. It is vital to combine nutrition therapy with stimulation (...) and responsive care. Combined nutrition and psychosocial stimulation treatments may be successful in promoting protective factors and mitigating risks for impaired cognitive, motor, social, and affective functioning, hence assisting children in adapting to adversity. (shrink)

Street life is a challenge for survival, even for adults, and is yet more difficult for children. They live within the city but are unable to take advantage of the comforts of urban life. This study focused primarily on access to health and education in street children from 6 to 18 years old in the Indian metropolises of Mumbai and Kolkata. The study also aimed to assess the role of social work interventions in ensuring the rights of street children. (...) A combination of quantitative and qualitative research methodologies was used. Convenience sampling was used to recruit 100 children. Data were collected on a one-to-one basis through semi-structured interview schedules and by non-participant observation. Findings revealed that extreme poverty was the primary cause for the increasing numbers of street children. Lack of awareness among illiterate parents regarding educational opportunities kept most children away from school attendance. Factors such as lack of an educational ambience at home made it difficult for the children to work on their lessons outside the premises of the institution. It was evident that those living with their parents had better access to health care facilities than did those living on their own; however, nongovernmental organizations made significant efforts to redress this imbalance, setting up health check-up camps at regular intervals. Although exposure to harsh reality at an early age had resulted in a premature loss of innocence in most, making them sometimes difficult to work with, the nongovernmental organizations were striving to ensure child participation and the growth of individual identity. The interventionists therefore focused on developing a rights-based approach, rather than a charitable one. (shrink)

Background: Educated women tend to have a greater awareness of the existence of ANC services, more aware of health problems, know more about the availability of health care services, and utilize the information more effectively than non-educated women. Moreover, higher levels of education tend to positively affect healthseeking behaviors, and education may increase a woman’s control over her pregnancy and expose women to more health education messages and campaigns, enabling them to recognize danger signs and complications (...) and take appropriate action. In this study, we tried to analyze to what level the maternal education can influence the antenatal care services and childcare. Methods: A community-based cross-sectional study was conducted on 93 randomly selected mothers who have children less than 7 years by using a pre-tested structured questionnaire for data collection at various tribal villages, at an average 25 kms away from Adilabad town from April-October 2019. Analysis was done using SPSS for windows version 16, Microsoft excel and Open epi website. Results: Out of 93 study subjects, 19.3% (18) of the study subjects were not registered for the antenatal services. Higher the maternal education higher the age at pregnancy (p<0.05), was associated with more preference for deliveries by doctors (p<0.05). More the frequency of exclusive breast feeding, long lasting breast feeding was associated more than a year (p<0.05), a smaller number of children with wasting (p<0.05). Conclusion: This study revealed that utilization of ANC services was relatively better for the mother’s educated higher than secondary school, but they are still low. Educational status is important in having more health seeking behavior. In this study, it proves that health education is more important than the mere school education which can help to improve knowledge on ANC. (shrink)

The Infectious Disease Ontology (IDO) is a suite of interoperable ontology modules that aims to provide coverage of all aspects of the infectious disease domain, including biomedical research, clinical care, and public health. IDO Core is designed to be a disease and pathogen neutral ontology, covering just those types of entities and relations that are relevant to infectious diseases generally. IDO Core is then extended by a collection of ontology modules focusing on specific diseases and pathogens. In this (...) paper we present applications of IDO Core within various areas of infectious disease research, together with an overview of all IDO extension ontologies and the methodology on the basis of which they are built. We also survey recent developments involving IDO, including the creation of IDO Virus; the Coronaviruses Infectious Disease Ontology (CIDO); and an extension of CIDO focused on COVID-19 (IDO-CovID-19).We also discuss how these ontologies might assist in information-driven efforts to deal with the ongoing COVID-19 pandemic, to accelerate data discovery in the early stages of future pandemics, and to promote reproducibility of infectious disease research. (shrink)

ABSTRACT Objectives There is little research on moral uncertainties and distress of palliative and hospice care providers (PHCPs) working in jurisdictions anticipating legalising voluntary assisted dying (VAD). This study examines the perception and anticipated concerns of PHCPs in providing VAD in the State of Queensland, Australia prior to legalisation of the practice in 2021. The findings help inform strategies to facilitate training and support the health and well-being of healthcare workers involved in VAD. Design The study used a (...) qualitative approach to examine and analyse the perception and anticipated concerns of PHCPs regarding challenges of providing assisted dying in Queensland. Fourteen PHCPs were recruited using a purposive sampling strategy to obtain a broad representation of perspectives including work roles, geographical locations and workplace characteristics. Data were collected via one in-depth interview per participant. The transcripts were coded for patterns and themes using an inductive analysis approach following the tradition of Grounded Theory. Setting The study was conducted in hospital, hospice, community and residential aged care settings in Queensland, Australia. These included public and private facilities, secular and faith-based facilities, and regional/rural and urban facilities. Participants Interviews were conducted with fourteen PHCPs: 10 nurses and 4 physicians; 11 female and 3 male. The median number of years of palliative care practice was 17, ranging from 2 to 36 years. For inclusion, participants had to be practising palliative and hospice care providers. Results PHCPs are divided on whether VAD should be considered part of palliative care. Expectations of moral distress and uncertainty about practising VAD were identified in five areas: handling requests, assessing patient capacity, arranging patient transfers and logistical issues, managing unsuccessful attempts, and dealing with team conflicts and stigma. Conclusions The possibility of having to practise VAD causes moral distress and uncertainty for some PHCPs. Procedural clarity can address some uncertainties; moral and psychological distress, however, remains a source of tension that needs support to ensure ongoing care of both patients and PHCPs. The introduction of VAD post-legalisation may present an occasion for further moral education and development of PHCPs. (shrink)

For smart cities, data-driven innovation promises societal benefits and increased well-being for residents and visitors. At the same time, the deployment of data-driven innovation poses significant ethical challenges. Although cities and other public-sector actors have increasingly adopted ethical principles, employing them in practice remains challenging. In this commentary, we use a virtue-based approach that bridges the gap between abstract principles and the daily work of practitioners who engage in and with data-driven innovation processes. Inspired (...) by Aristotle, we describe practices of data-driven innovation in a smart city applying the concepts of virtue and phronêsis, meaning good judgment of and sensitivity to ethical issues. We use a dialogic case-study approach to study two cases of data-driven innovation in the city of Helsinki. We then describe as an illustration of how our approach can help bridge the gap between concrete practices of data-driven innovation and high-level principles. Overall, we advance a theoretically grounded, virtue-based approach, which is practice oriented and linked to the daily work of data scientists and other practitioners of data-driven innovation. Further, this approach helps understand the need for and importance of individual application of phronêsis, which is particularly important in public-sector organizations that can experience gaps between principle and practice. This importance is further intensified in cases of data-driven innovation in which, by definition, novel and unknown contexts are explored. (shrink)

In this essay, we advocate that the issue of health data ethics should no longer be considered on the level of individual scientists or research labs, but rather as a problem involving all stakeholders, from publishers, funders, ethical committees to governments, for the sake of research integrity.