Public funders of health research have been widely criticized on the grounds that their allocations of funding for disease-specific research do not reflect the relative burdens imposed by different diseases. For example, the US National Institutes of Health spends a much greater fraction of its budget on HIV/AIDS research and a much smaller fraction on migraine research than their relative contribution to the US burden of disease would suggest. Implicit in this criticism is a (...) normative claim: Insofar as the scientific opportunities are equal, each patient merits research into their condition proportional to the burden of disease for which that condition is responsible. This claim—the proportional view—is widely accepted but has never been fully specified or defended. In this paper, I explain what is required to specify the view, attempt to do so in the most charitable way, and then critically evaluate its normative underpinnings. I conclude that a severity-weighted proportional view is defensible. I close by drawing out five key lessons of my analysis for health research priority-setting. (shrink)

Most public and non-profit organisations that fund health research provide the majority of their funding in the form of grants. The calls for grant applications are often untargeted, such that a wide variety of applications may compete for the same funding. The grant review process therefore plays a critical role in determining how limited research resources are allocated. Despite this, little attention has been paid to whether grant review criteria align with widely endorsed ethical criteria for allocating (...) health research resources. Here, we analyse the criteria and processes that ten of the largest public and non-profit research funders use to choose between competing grant applications. Our data suggest that research funders rarely instruct reviewers to consider disease burden or to prioritise research for sicker or more disadvantaged populations, and typically only include scientists in the review processes. This is liable to undermine efforts to link research funding to health needs. (shrink)

In this article we argue that the social value of health research should be conceptualized as a function of both the expected benefits of the research and the priority that the beneficiaries deserve. People deserve greater priority the worse off they are. This conception of social value can be applied for at least two important purposes: in health research priority setting when research funders, policy-makers, or researchers decide between alternative research projects; and in (...) evaluating the ethics of proposed research proposals when research ethics committees assess whether the social value of the research is sufficient to justify the risks and burdens to research participants and others. In assessing how far a proposed research project will advance the interests of people who are more disadvantaged, research priority setters and RECs should examine the diseases that the research targets and the type of research. Just as certain diseases impose a greater burden on people who are more disadvantaged, so certain types of intervention and forms of research are more likely to benefit people who are more disadvantaged. We outline which populations are likely to be representative of the global worst off and identify what types of health research, and which disease categories, are priorities for these populations. (shrink)

Background: Exposomics, the study of the exposome, is flourishing, but the field is not well defined. The term “exposome” refers to all environmental influences and associated biological responses throughout the lifespan. However, this definition is very similar to that of the term “environment”—the external elements and conditions that surround and affect the life and development of an organism. Consequently, the exposome seems to be nothing more than a synonym for the environment, and exposomics a synonym for environmental research. As (...) a result, some have rebranded their “standard” environmental health research with the neologistic exposome term, whereas others ignore or seek to abandon the seemingly redundant concept of the exposome. -/- Objectives: We argue that exposomics needs to sharpen its mission focus to counteract this apparent redundancy. Exposomics should be defined as a research program in environmental health aimed at enabling a comprehensive and discovery-driven approach to identifying environmental determinants of human health. Similar to the aim of the Human Genome Project, exposomics aims to analyze the complete complexity of exposures and their corresponding biological responses. Exposomics’ primary premise is that the existence of undiscovered, potentially interconnected, nongenetic (environmental) risk factors for health necessitates a comprehensive discovery-driven analysis approach. -/- Discussion: We argue that exposomics researchers should adopt our reconceptualization of exposomics and focus on the productiveness and integrity of their research program: its purpose and principles. We suggest that exposomics researchers should coordinate the writing of reviews that assess the program’s productiveness and integrity, as well as provide a platform for exposomics researchers to define their vision for the field. (shrink)

Environmental health research produces scientific knowledge about environmental hazards crucial for public health and environmental justice movements that seek to prevent or reduce exposure to these hazards. The environment in environmental health research is conceptualized as the range of possible social, biological, chemical, and/or physical hazards or risks to human health, some of which merit study due to factors such as their probability and severity, the feasibility of their remediation, and injustice in their distribution. (...) This paper explores the ethics of identifying the relevant environment for environmental health research, as judgments involved in defining an environmental hazard or risk, judgments of that hazard or risk's probability, severity, and/ or injustice, as well as the feasibility of its remediation, all ought to appeal to non-epistemic as well as epistemic values. I illustrate by discussing the case of environmental lead, a housing-related hazard that remains unjustly distributed by race and class and is particularly dangerous to children. Examining a controversy in environmental health research ethics where researchers tested multiple levels of lead abatement in lead-contaminated households, I argue that the broader perspective on the ethics of environmental health research provided in the first part of this paper may have helped prevent this controversy. (shrink)

We respond to open peer commentaries on our target article, "Health Research Priority Setting: The Duties of Individual Funders".

The context of international health research involving human subjects, and this should appear obvious, is the human community. As such, basic questions of how human beings should be treated by other human beings, particularly in situations of unequal power – e.g., in the form of control, choice, or opportunity – lay at the foundations of related ethical discourse when ethics are discussed at all. I trace a narrative that follows upon a recent revision process of international guidelines for (...) biomedical research involving human subjects. I focus in particular upon the issue of a standard of care. In the second section, I draw upon philosophers John Rawls, Claudia Card, and Allen Buchanan to discuss concerns regarding the 'least advantaged members of society' in the context of global inequality. The paper includes reflections upon pedagogy in courses focused upon international health research involving human subjects. (shrink)

This article identifies and examines a tension in mental health researchers’ growing enthusiasm for the use of computational tools powered by advances in artificial intelligence and machine learning (AI/ML). Although there is increasing recognition of the value of participatory methods in science generally and in mental health research specifically, many AI/ML approaches, fueled by an ever-growing number of sensors collecting multimodal data, risk further distancing participants from research processes and rendering them as mere vectors or collections (...) of data points. The imperatives of the “participatory turn” in mental health research may be at odds with the (often unquestioned) assumptions and data collection methods of AI/ML approaches. This article aims to show why this is a problem and how it might be addressed. (shrink)

In Québec, the Act Respecting Access to Documents Held by Public Bodies and the Protection of Personal Information provides an exception to transparency to most public institutions where public health research is conducted by allowing them to not disclose their uses of personal data. This exceptionalism is ethically problematic due to important concerns and we argue that all those who conduct research should be transparent and accountable for the work they do in the public interest.

This collection presents six case studies on the ethics of mental health research, written by scientific researchers and ethicists from around the world. We publish them here as a resource for teachers of research ethics and as a contribution to several ongoing ethical debates. Each consists of a description of a research study that was proposed or carried out and an in-depth analysis of the ethics of the study.

Now, the climate of Bangladesh has subtropical monsoon weather with extensive seasonal variations concerning humidity, temperature, and rainfall. Furthermore, it has altitudes from 600 to 1000 meters above sea level, whereas, at 1063 m(3,488 ft.) altitude, Saka Haphong at Mowdok range is the highest height in the southern part the hill there (Wasson, R., 2003). Bangladesh is an emerging market as a developing nation where approximately 30% of its GDP comes from agriculture to tell more about the country. However, Bangladesh (...) got its Independence from Pakistan in 1971, after the partition of British India in 1947 by a glorious liberation war. Before Independence, it had its map within a red circle surrounded by a rectangular green shape as the national flag. After Independence, the map got removed. The red circle signifies the blood sacrifice of the martyrs during the liberation war, while the green rectangle is the symbol of the country's green nature. (shrink)

Climate change, pollution, and deforestation have a negative impact on global mental health. There is an environmental justice dimension to this challenge as wealthy people and high-income countries are major contributors to climate change and pollution, while poor people and low-income countries are heavily affected by the consequences. Using state-of-the art data mining, we analyzed and visualized the global research landscape on mental health, climate change, pollution and deforestation over a 15-year period. Metadata of papers were exported (...) from PubMed®, and both relevance and relatedness of terms in different time frames were computed using VOSviewer. Co-occurrence graphs were used to visualize results. The development of exemplary terms over time was plotted separately. The number of research papers on mental health and environmental challenges is growing in a linear fashion. Major topics are climate change, chemical pollution, including psychiatric medication in wastewater, and neurobiological effects. Research on specific psychiatric syndromes and diseases, particularly on their ethical and social aspects is less prominent. There is a growing body of research literature on links between mental health, climate change, pollution, and deforestation. This research provides a graphic overview to mental healthcare professionals and political stakeholders. Social and ethical aspects of the climate change-mental health link have been neglected, and more research is needed. (shrink)

This article addresses the general ethical issues of accessing online personal data for research purposes. The authors discuss the practical aspects of online research with a specific case study that illustrates the ethical challenges encountered when accessing data from Kooth, an online youth web-counselling service. This paper firstly highlights the relevance of a process-based approach to ethics when accessing highly sensitive data and then discusses the ethical considerations and potential challenges regarding the accessing of public data from Digital (...) Mental Health services. It presents solutions that aim to protect young DMH service users as well as the DMH providers and researchers mining such data. Special consideration is given to service users’ expectations of what their data might be used for, as well as their perceptions of whether the data they post is public, private or open. We provide recommendations for planning and designing online research in an ethical manner that includes vulnerable young people as research participants. We emphasise the distinction between public, private and open data, which is crucial to comprehend the ethical challenges in accessing DMH data. Among our key recommendations, we foreground the need to consider a collaborative approach with the DMH providers while respecting service users’ control over personal data, and we propose the implementation of digital solutions embedded within the platform for explicit opt-out/opt-in recruitment strategies and ‘read more’ options. (shrink)

All too often, the requirements for actionability and accountability of data infrastructures are conceptualised as incompatible and leading to a trade-off situation where increasing one will unavoidably decrease the other. Through a comparative analysis of two data infrastructures used to share genomic data about the SARS-COV-2 virus, we argue that making data actionable for knowledge development involves a commitment to ensuring that the data in question are representative of the phenomena being studied and accountable to data subjects and users. This (...) in turn presupposes that: (1) enough data are contributed by a wide and diverse set of relevant sources; (2) mechanisms of feedback and inclusion are set up to ensure that data contributors can participate data governance and interpretation, thereby helping to adequately contextualise data; and (3) accountability extends to the ways in which data infrastructures are run, financed and positioned vis-à-vis the communities they are meant to serve. Such a model of data sharing can only work on the understanding that data do not need to be easily accessible to be actionable; rather, actionability depends on the responsiveness and accountability of data infrastructures, and the efforts invested in ensuring open communication among contributors. (shrink)

The future of health research will be characterised by three continuing trends: rising demand for health data; increasing impracticability of obtaining specific consent for secondary research; and decreasing capacity to effectively anonymise data. In this context, governments, clinicians and the research community must demonstrate that they can be responsible stewards of health data. IRBs and RECs sit at heart of this process because in many jurisdictions they have the capacity to grant consent waivers when (...) research is judged to be of particular value. However, several different terms are used to refer to this value, indicating a lack of conceptual clarity regarding the appropriate test for access to health data for research without consent. In this paper we do three things. First we describe the current confusion and instability in terminology relating to public interest in the context of consent waivers. Second we argue for harmonisation of terminology on the grounds of clarity, transparency and consistency. Third we argue that the term ‘public interest’ best reflects the normative work required to justify consent waivers because it is the broadest of the competing terms. ‘Public interest’ contains within its scope positive and negative implications of a study, as well as welfare, justice and rights considerations. In making this argument, we explain the normative basis for consent waivers, and provide a starting place for further discussion about the precise conditions in which a given study can be said to advance the public interest. Ipsos MORI study found that: … the public would be broadly happy with administrative data linking for research projects provided Those projects have social value, broadly defined. Data are de-identified. Data are kept secure. Businesses are not able to access the data for profit. (shrink)

While there has been significant discussion in the health sciences and ethics literatures about problems associated with publication practices (e.g., ghost- and gift-authorship, conflicts of interest), there has been relatively little practical guidance developed to help researchers determine how they should fairly allocate credit for multi-authored publications. Fair allocation of credit requires that participating authors be acknowledged for their contribution and responsibilities, but it is not obvious what contributions should warrant authorship, nor who should be responsible for the quality (...) and content of the scientific research findings presented in a publication. In this paper, we review arguments presented in the ethics and health science literatures, and the policies or guidelines proposed by learned societies and journals, in order to explore the link between author contribution and responsibility in multi-author multidisciplinary health science publications. We then critically examine the various procedures used in the field to help researchers fairly allocate authorship. (shrink)

The predominant view is that a study using health data is observational research and should require individual consent unless it can be shown that gaining consent is impractical. But recent arguments have been made that citizens have an ethical obligation to share their health information for research purposes. In our view, this obligation is sufficient ground to expand the circumstances where secondary use research with identifiable health information is permitted without explicit subject consent. As (...) such, for some studies the Institutional Review Board/Research Ethics Committee review process should not assess the practicality of gaining consent for data use. Instead the review process should focus on assessing the public good of the research, public engagement and transparency. (shrink)

One of the great challenges for students of any discipline is to be able to put into practice the knowledge learned in theory. Public health does not escape this challenge. Research Methods for Public Health is a book that seeks to help students understand in a simple way how to enter into the practice of public health research. This book stands out for its easy reading, but especially because it emphasizes the existence of quantitative and (...) qualitative methods, as well as the combination of both methods. On the other hand, the authors show between the lines, and sometimes more clearly, the importance of teamwork in research groups, a key element to avoid errors, validate procedures or instruments and increase the reliability of the results, as well as the importance of criteria of validity, reliability, precision, relevance, transparency and credibility, among others. -/- Uno de los grandes retos para los estudiantes de cualquier disciplina es poder poner en práctica los conocimientos aprendidos en la teoría. La salud pública no se escapa de este desafío. Research Methods for Public Health es un libro que busca ayudar a comprender de manera sencilla cómo introducirse en la práctica de la investigación en salud pública. Este libro se destaca por su fácil lectura, pero especialmente porque pone el énfasis en la existencia de los métodos cuantitativos y cualitativos, así como en la combinación de ambos métodos. Por otro lado, los autores dejan ver entrelíneas, y a veces más claramente, la importancia del trabajo en equipo en los grupos de investigación, elemento clave para evitar errores, validar procedimientos o instrumentos y aumentar la confia-bilidad de los resultados, así como la importancia de criterios de validez, confiabilidad, precisión, relevancia, transparencia y credibilidad, entre otros. (shrink)

In times of crises, public health leaders may claim that trials of public health interventions are unethical. One reason for this claim can be that equipoise—i.e. a situation of uncertainty and/or disagreement among experts about the evidence regarding an intervention—has been disturbed by a change of collective expert views. Some might claim that equipoise is disturbed if the majority of experts believe that emergency public health interventions are likely to be more beneficial than harmful. However, such beliefs (...) are not always justified: where high quality research has not been conducted, there is often considerable residual uncertainty about whether interventions offer net benefits. In this essay we argue that high-quality research, namely by means of well-designed randomized trials, is ethically obligatory before, during, and after implementing policies in public health emergencies (PHEs). We contend that this standard applies to both pharmaceutical and non-pharmaceutical interventions, and we elaborate an account of equipoise that captures key features of debates in the recent pandemic. We build our case by analyzing research strategies employed during the COVID-19 pandemic regarding drugs, vaccines, and non-pharmaceutical interventions; and by providing responses to possible objections. Finally, we propose a public health policy reform: whenever a policy implemented during a PHE is not grounded in high-quality evidence that expected benefits outweigh harms, there should be a planned approach to generate high-quality evidence, with review of emerging data at preset time points. These preset timepoints guarantee that policymakers pause to review emerging evidence and consider ceasing ineffective or even harmful policies, thereby improving transparency and accountability, as well as permitting the redirection of resources to more effective or beneficial interventions. (shrink)

Consistent and well-designed frameworks for ethical oversight enable socially valuable research while forestalling harmful or poorly designed studies. I suggest some alterations that might strengthen the valuable checklist Rattani & Hyder propose for the ethical review of health policy and systems research (HPSR), or prompt future work in the area.

As opposed to a ‘one size fits all’ approach, precision medicine uses relevant biological, medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone’s disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating to (...) the balancing of interests, viability of anonymization, familial and group implications, as well as genetic discrimination. This article analyses these issues in light of the values of public benefit, justice, harm minimization, transparency, engagement and reflexivity and applies the deliberative balancing approach found in theEthical Framework for Big Data in Health and Research to a case study on clinical genomic data sharing. Please refer to that article for an explanation of how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. Our discussion is meant to be of use to those involved in the practice as well as governance and oversight of precision medicine to address ethical concerns that arise in a coherent and systematic manner. (shrink)

Researchers and practitioners are increasingly using machine‐generated synthetic data as a tool for advancing health science and practice, by expanding access to health data while—potentially—mitigating privacy and related ethical concerns around data sharing. While using synthetic data in this way holds promise, we argue that it also raises significant ethical, legal, and policy concerns, including persistent privacy and security problems, accuracy and reliability issues, worries about fairness and bias, and new regulatory challenges. The virtue of synthetic data is (...) often understood to be its detachment from the data subjects whose measurement data is used to generate it. However, we argue that addressing the ethical issues synthetic data raises might require bringing data subjects back into the picture, finding ways that researchers and data subjects can be more meaningfully engaged in the construction and evaluation of datasets and in the creation of institutional safeguards that promote responsible use. (shrink)

The implementation of actions for health is only possible by adequate policy development. There is a need to review the nature and development of policy in health political science gaze. Therefore, the present study aims to conduct a review on theory and researches to develop adequate policies in health care system. It provides a comprehensive review about the important theories with empirical research evidences for promoting health. The review analysis shows that it is important to (...) understand the theory and approach behind policy development to recognize the incremental nature of aspects involved in policy development. The health political science insights need to be embraced in the light of public health and promotion of health. The present study has provided deep understanding about the structuring and implementation of health policies in health care systems in the light of theory and research. (shrink)

Aims and Objectives. This article uses the concept of embodiment to demonstrate a conceptual approach to applied phenomenology. -/- Background. Traditionally, qualitative researchers and healthcare professionals have been taught phenomenological methods, such as the epoché, reduction, or bracketing. These methods are typically construed as a way of avoiding biases so that one may attend to the phenomena in an open and unprejudiced way. However, it has also been argued that qualitative researchers and healthcare professionals can benefit from phenomenology’s well-articulated theoretical (...) framework, which consists of core concepts, such as selfhood, empathy, temporality, spatiality, affectivity, and embodiment. -/- Design. This is a discursive article that demonstrates a conceptual approach to applied phenomenology. -/- Method. To outline and explain this approach to applied phenomenology, the Discussion section walks the reader through four stages of phenomenology, which progress incrementally from the most theoretical to the most practical. -/- Discussion. Part one introduces the philosophical concept of embodiment, which can be applied broadly to any human subject. Part two shows how philosophically trained phenomenologists use the concept of embodiment to describe general features of illness and disability. Part three illustrates how the phenomenological concept of embodiment can inform empirical qualitative studies and reflects on the challenges of integrating philosophy and qualitative research. Part four turns to phenomenology’s application in clinical practice and outlines a workshop model that guides clinicians through the process of using phenomenological concepts to better understand patient experience. -/- Conclusion and Relevance to Clinical Practice. A conceptual approach to applied phenomenology provides a valuable alternative to traditional methodological approaches. Phenomenological concepts provide a foundation for better understanding patient experience in both qualitative health research and clinical practice, and therefore provide resources for enhancing patient care. (shrink)

Ethical decision-making frameworks assist in identifying the issues at stake in a particular setting and thinking through, in a methodical manner, the ethical issues that require consideration as well as the values that need to be considered and promoted. Decisions made about the use, sharing, and re-use of big data are complex and laden with values. This paper sets out an Ethics Framework for Big Data in Health and Research developed by a working group convened by the Science, (...) Health and Policy-relevant Ethics in Singapore Initiative. It presents the aim and rationale for this framework supported by the underlying ethical concerns that relate to all health and research contexts. It also describes a set of substantive and procedural values that can be weighed up in addressing these concerns, and a step-by-step process for identifying, considering, and resolving the ethical issues arising from big data uses in health and research. This Framework is subsequently applied in the papers published in this Special Issue. These papers each address one of six domains where big data is currently employed: openness in big data and data repositories, precision medicine and big data, real-world data to generate evidence about healthcare interventions, AI-assisted decision-making in healthcare, public-private partnerships in healthcare and research, and cross-sectoral big data. (shrink)

Background Several jurisdictions, including Singapore, Australia, New Zealand and most recently Ireland, have a public interest or public good criterion for granting waivers of consent in biomedical research using secondary health data or tissue. However, the concept of the public interest is not well defined in this context, which creates difficulties for institutions, institutional review boards and regulators trying to implement the criterion. Main text This paper clarifies how the public interest criterion can be defensibly deployed. We first (...) explain the ethical basis for requiring waivers to only be granted to studies meeting the public interest criterion, then explore how further criteria may be set to determine the extent to which a given study can legitimately claim to be in the public interest. We propose an approach that does not attempt to measure magnitude of benefit directly, but rather takes into account metrics that are more straightforward to apply. To ensure consistent and justifiable interpretation, research institutions and IRBs should also incorporate procedural features such as transparency and public engagement in determining which studies satisfy the public interest requirement. Conclusion The requirement of public interest for consent waivers in secondary biomedical research should be guided by well-defined criteria for systematic evaluation. Such a criteria and its application need to be periodically subject to intra-committee and intra-institution review, reflection, deliberation and amendment. (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)

How ought we socially to categorize individuals with respect to sexual orientation? In this paper, I engage with philosophical work on the foundations of political solidarity as well as public health research on the treatment and prevention of HIV/AIDS in order to develop a categorization scheme conducive to the normatively important aims of LGBTQIA+ social movements.

There are a number of important links and similarities between public health and safety. In this extended essay, Gregg D. Caruso defends and expands his public health-quarantine model, which is a non-retributive alternative for addressing criminal behavior that draws on the public health framework and prioritizes prevention and social justice. In developing his account, he explores the relationship between public health and safety, focusing on how social inequalities and systemic injustices affect health outcomes and crime (...) rates, how poverty affects brain development, how offenders often have pre-existing medical conditions (especially mental health issues), how involvement in the criminal justice system itself can lead to or worsen health and cognitive problems, how treatment and rehabilitation methods can best be employed to reduce recidivism and reintegrate offenders back into society, and how a public health approach could be successfully applied within the criminal justice system. Caruso's approach draws on research from the health sciences, social sciences, public policy, law, psychiatry, medical ethics, neuroscience, and philosophy, and he delivers a set of ethically defensible and practically workable proposals for implementing the public health-quarantine model. The essay begins by discussing recent empirical findings in psychology, neuroscience, and the social sciences that provide us with an increased understanding of the social and neurological determinants of health and criminal behavior. It then turns to Caruso's public health-quarantine model and argues that the model provides the most justified, humane, and effective approach for addressing criminal behavior. Caruso concludes by proposing a capability approach to social justice grounded in six key features of human well-being. He argues that we cannot successfully address concerns over public health and safety without simultaneously addressing issues of social justice—including the social determinants of health (SDH) and the social determinants of criminal behavior (SDCB)—and he recommends eight general policy proposals consistent with his model. (shrink)

Health data processing fields face ethical and legal problems regarding fundamental rights. As we know, patients can benefit in the Digital Era from having health or medical information available, and medical decisions can be more effective with a better understanding of clinical histories, medical and health data thanks to the development of Artificial Intelligence, Internet of Things and other Digital technologies. However, at the same time, we need to guarantee fundamental rights, including privacy ones. The complaint about (...) ethical and legal requirements – including constitutional ones – is particularly relevant in the processing of health data. This paper is focused on the problem of the consent required to the processing of health data and the exceptions established in the new European Union General Data Regulation, which cover the processing of this special data -within other aims- for scientific, historical and statistical research as legitimate purposes, which include biomedical research. The conclusion is that these open concepts are problematic both for the protection of privacy rights and for the legal security/certainty of research. On one hand there are several interpretation problems, regarding the processing of health data and the protection of information privacy. On the other hand, professionals must follow the Multilevel legal framework and to guarantee fundamental rights in the processing of health data, so there are also problems of interpretation for researchers. Therefore, we need a clearer legal framework for biomedical research. (shrink)

The major objective of this study was to investigate whether visual impairments (VI) impact mental health literacy among first-generation university students (FGUS). A descriptive survey research method was used to examine the mental health literacy of 132 purposive sample of FGUS with and without VI from three federal universities in Southern Nigeria. A 35-item MHL Scale (MHLS) for university students (Crobach’s α=0.83) with 5-point response was used for data collection. Questionnaire distribution was achieved through the help of (...) two research assistants. Means, standard deviations, analysis of variance and regression plot were employed to analyze the research data. Participants’ mean age was 24.96±3.86 years. Results showed a higher level of mental health literacy across seven domains of the MHL Scale among students with VI compared to those without this disability. The students identified mental health literacy they possess including the ability to recognize specific disorders, the ability to seek mental health information, the ability to identify risk factors and causes, the ability to understand self-treatment options, the ability to access professional assistance, and positive behaviors that promote awareness and help-seeking. VI did not significantly impact the mental health literacy of FGUS with VI. VI explained only 6.31% of the variation in MHL among FGUS with VI. Accordingly, mental health literacy is an essential skill that should be acquired by everyone, including those who suffer from specific disorders and professionals who care for them. Further effort is required in order to improve the mental literacy of FGUS without VI in Nigerian universities. (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)

Much academic work (in philosophy, economics, law, etc.), as well as common sense, assumes that ill health reduces well-being. It is bad for a person to become sick, injured, disabled, etc. Empirical research, however, shows that people living with health problems report surprisingly high levels of well-being - in some cases as high as the self-reported well-being of healthy people. In this chapter, I explore the relationship between health and well-being. I argue that although we have (...) good reason to believe that health problems causing pain and death typically do reduce well-being, health problems that limit capabilities probably don't reduce well-being nearly as much as most people suppose. I then briefly explore the consequences of this conclusion for political philosophy and ethics. If many health problems don't significantly reduce well-being, why should governments go to great expense to prevent or treat them? Why should parents be obliged to ensure the health of their children? (shrink)

Several quantitative surveys have been conducted internationally to gather empirical information about physicians’ general attitudes towards health care rationing. Are physicians ready to accept and implement rationing, or are they rather reluctant? Do they prefer implicit bedside rationing that allows the physician–patient relationship broad leeway in individual decisions? Or do physicians prefer strategies that apply explicit criteria and rules?

Community-based participatory research (CBPR) and community engaged research (CEnR) are key to promoting community and patient engagement in actionable evidence-based strategies to improve research for health equity. Rapid growth of CBPR/CEnR research projects have led to the broad adoption of partnering principles in community-academic partnerships and among some health and academic organizations. Yet, transformation of principles into best practices that foster trust, shared power, and equity outcomes still remain fragmented, are dependent on individuals with (...) long term projects, or are non-existent. This paper describes how we designed our Engage for Equity PLUS intervention that leverages the leadership and membership of champion teams (including community-engaged faculty, community partners and patient advocates) to improve organizational policies and practices to support equity based CBPR/CEnR. (shrink)

Most mental health research largely ignores or minimises gender and age differences in depression. In ‘Don't mind the gap: Why do we not care about the gender gap in mental health?’, Patalay and Demkowicz identify a dearth of research on the causal factors of depression in young women. They attribute this to an over-reliance on biological accounts of gender differences in depression. Patalay and Demkowicz conclude that a person-centred approach that meaningfully engages with the reports of (...) young women with depression is more likely to expose the social drivers of depression that impact this group. This commentary focuses on Patalay and Demkowicz's call to examine the patient's lived experience. We argue that there is an urgent need to reflect upon the methodologies involved in examining lived experience and how they can be best utilised. Ultimately, we advocate for an approach known as ‘phenomenological psychopathology’, through a phenomenological investigation of depression in young women, we can go some way towards closing the gender gap. (shrink)

Approaching mental health on a global scale with particular reference to low- and mid-income countries raises issues concerning the disregard of the local context and values and the imposition of values characteristic of the Global North. Seeking a philosophical viewpoint to surmount these problems, the present paper argues for a value-laden framework for psychiatry with the specific incorporation of value pluralism, particularly in relation to the Global South context, while also emphasizing personal values such as the choice of treatment. (...) In sketching out this framework, the paper aims to overcome the clash between universalism and relativism about psychiatric categories by focusing on how overlaps between cultures can contribute to ontology-building. A case study analyzing ethnopsychiatric research in the context of South India will illustrate the proposed view, while also pointing out avenues for further research on the causal efficacy of local shared beliefs about mental disorder. If approaches across different traditions and theoretical frames are shown to work in treating similar ailments, causal connections appear to cut across the different ontologies. Ethnopsychiatry would play a central role in such research, namely in disclosing the variables and mechanisms at work within the local approaches. (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)

We must resist thoroughly reframing climate change as a health issue. For human health–centric ethical frameworks omit dimensions of value that we must duly consider. We need a new, an environmental, research ethic, one that we can use to more completely and impartially evaluate proposed research on mitigation and adaptation strategies.

PURPOSE—A substantial fraction of the observations made by clinicians and entered into patient records are expressed by means of negation or by using terms which contain negative qualifiers (as in “absence of pulse” or “surgical procedure not performed”). This seems at first sight to present problems for ontologies, terminologies and data repositories that adhere to a realist view and thus reject any reference to putative non-existing entities. Basic Formal Ontology (BFO) and Referent Tracking (RT) are examples of such paradigms. The (...) purpose of the research here described was to test a proposal to capture negative findings in electronic health record systems based on BFO and RT. METHODS—We analysed a series of negative findings encountered in 748 sentences taken from 41 patient charts. We classified the phenomena described in terms of the various top-level categories and relations defined in BFO, taking into account the role of negation in the corresponding descriptions. We also studied terms from SNOMED-CT containing one or other form of negation. We then explored ways to represent the described phenomena by means of the types of representational units available to realist ontologies such as BFO. RESULTS—We introduced a new family of ‘lacks’ relations into the OBO Relation Ontology. The relation lacks_part, for example, defined in terms of the positive relation part_of, holds between a particular p and a universal U when p has no instance of U as part. Since p and U both exist, assertions involving ‘lacks_part’ and its cognates meet the requirements of positivity. CONCLUSION—By expanding the OBO Relation Ontology, we were able to accommodate nearly all occurrences of negative findings in the sample studied. (shrink)

This study aimed to determine the health practices among the secondary school teachers during the Covid-19 pandemic in Ichon National High School. This considered the socio - demographic profile of the teachers in terms of age, sex, civil status and teaching load and the extent of practice employed by the teachers in the said health dimensions. A total of 53 teachers from Ichon National High School participated as respondents in the evaluative method of research that consists in (...) three parts questionnaires. The statistical treatment used in the computation and analysis of gathered data to determine the socio-demographic profile of the respondents are the descriptive statistics such as frequency and percentage. As to the significance of health practices during COVID-19 pandemic, Kruskal Wallis and Mann-Whitney U test was used to analyze the significant differences on the extent of practices among the different health dimensions. The very high extent of the implementation on the health practices during COVID-19 pandemic shows that the teachers are frequently practiced the health practices. The highest mean in mental aspect is conclusive that teacher during the pandemic exert effort to stay healthy on this and other areas as well. It is recommended to conduct further study regarding on the health practices among the secondary school teachers. (shrink)

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)

In this chapter, I first outline the public health workflow from assessment via goal definition and intervention to evaluation. Further, I discuss the types and subtypes of explanation used in public health research and practice: scientific, justificatory, methodological, and prospective. In doing this, I take the discussion far beyond the usual focus in philosophy of science as answers to “why?”-questions. The chapter ends with a few comments on my proposal.

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)

In order to support health interventions, biomedical and population health researchers need to collect solid evidence. This article asks what type of evidence this should be and expands on previous work that focused on etiological explanations, or causal-mechanical explanations of why and how illness occurs. The article proposes adding predictive evidence to the explanatory evidence, in order to form a joint evidence set, or JES = [A,B,C,D], which consists of four different types of evidence: association [A], biology [B], (...) confirmation [C], and difference-making [D]. The article discusses explanatory coherence as a backbone for this proposal, suggests criteria for each type of evidence, and offers a rubric for multi-evidence mapping. (shrink)

Religion constitutes an important element in every society as regards coping with the demands as well as vicissitudes of life. Mental health issues are becoming a recurrent decimal in societies overwhelmed by stress and other social factors. This paper examines how the presence of religious beliefs affects how some Christians respond to cases that have to do mental health. At the same time, it surveys how a near absence of religious attitude, that is, clinical medicine approach to mental (...) health issues betters the state of those suffering from these psychopathologies. This work sees participatory partnership approach as an effective means of correcting unhealthy biases that prevent a better understanding of mental health care. Sociological theory of structural functionalism will be used in assessing how religion can reinvent itself in areas that are associated with mental health. Ethnographic methodology through quantitative analysis of administered questionnaire is used as a research tool for this research. Three persons were also interviewed. The research findings show that religion is a crucial agent of socialization that can change how religious beliefs impact on mental health and there is need for medical professionals to collaborate with pastoral agents. (shrink)

This paper focuses on Precision Public Health (PPH), described in the scientific literature as an effort to broaden the scope of precision medicine by extrap- olating it towards public health. By means of the “All of Us” (AoU) research pro- gram, launched by the National Institutes of Health in the U.S., PPH is being devel- oped based on health data shared through a broad range of digital tools. PPH is an emerging idea to harness the (...) data collected for precision medicine to be able to tai- lor preventive interventions for at-risk groups. The character of these data concern genetic identity, lifestyle and overall health and therefore affect the ‘intimacy’ of personhood. Through the concept of biological citizenship, we elucidate how AoU and its recruitment tactics, by resonating ‘diversity’, at the same time appeal to and constitute identity, defining individuals as ‘data sharing subjects’. Although PPH is called for; the type of bio-citizenship that is enacted here, has a particular definition, where participant recruitment focuses on ‘citizenship’ in terms of empowerment (front), it is the ‘bio’ prefix that has become the main focus in terms of research. i.e. biosubjectivities vs biocapital. This raises the question whether the societal chal- lenges that often underlie public health issues can be sufficiently dealt with based on the way ‘diversity’ is accounted for in the program. We suggest that the AoU still risks of harming underrepresented groups based on the preconditions and the design of the program. (shrink)

Surveillance programs supporting the management of One Health issues such as antibiotic resistance are complex systems in themselves. Designing ethical surveillance systems is thus a complex task (retroactive and iterative), yet one that is also complicated to implement and evaluate (e.g., sharing, collaboration, and governance). The governance of health surveillance requires attention to ethical concerns about data and knowledge (e.g., performance, trust, accountability, and transparency) and empowerment ethics, also referred to as a form of responsible self-governance. Ethics in (...) reflexive governance operates as a systematic critical-thinking procedure that aims to define its value: What are the “right” criteria to justify how to govern “good” actions for a “better” future? The objective is to lay the foundations for a methodological framework in empirical bioethics, the rudiments of which have been applied to a case study to building reflexive governance in One Health. This ongoing critical thinking process involves “mapping, framing, and shaping” the dynamics of interests and perspectives that could jeopardize a “better” future. This paper proposes to hybridize methods to combine insights from collective deliberation and expert evaluation through a reflexive governance functioning as a community-based action-ethics methodology. The intention is to empower individuals and associations in a dialogue with society, which operation is carried out using a case study approach on data sharing systems. We based our reasoning on a feasibility study conducted in Québec, Canada (2018–2021), envisioning an antibiotic use surveillance program in animal health for 2023. Using the adaptive cycle and governance techniques and perspectives, we synthesize an alternative governance model rooted in the value of empowerment. The framework, depicted as a new “research and design (R&D)” practice, is linking operation and innovation by bridging the gap between Reflexive, Evaluative, and Deliberative reasonings and by intellectualizing the management of democratizing critical thinking locally (collective ethics) by recognizing its context (social ethics). Drawing on the literature in One Health and sustainable development studies, this article describes how a communitarian and pragmatic approach can broaden the vision of feasibility studies to ease collaboration through public-private-academic partnerships. The result is a process that “reassembles” the One Health paradigm under the perspective of global bioethics to create bridges between the person and the ecosystem through pragmatic ethics. (shrink)

Recently, there has been a concerted effort to shift bioethics’ traditional focus from clinical and research settings to more robustly engage with issues of justice and health equity. This broader bioethics agenda seeks to embed health related issues in wider institutional and cultural contexts and to help develop fair policies. In this paper, we argue that bioethicists who ascribe to the broader bioethics’ agenda could gain valuable insights from the interdisciplinary field of environmental justice and transportation justice, (...) in particular. We then proceed to demonstrate the importance of adopting an intersectional approach to transportation and health. The paper concludes with the argument that intersectional gender inequality is of particular importance when studying both health equity and the unequal distribution of burdens associated with transportation systems in local contexts. This essay is meant to be the beginning of a robust conversation concerning health equity, transportation justice, and intersectional distributions of both benefits and burdens. (shrink)