The federal government is funding a sea change in health care by investing in interventions targeting social determinants of health, which are significant contributors to illness and health inequity. This funding power has encouraged states, professional and accreditation organizations, health care entities, and providers to focus heavily on social determinants. We examine how this shift in focus affects clinical practice in the fields of oncology and emergency medicine, and highlight potential areas of reform.

We consider the implications for the ethical evaluation of research programs of two fundamental changes in the revised research ethical guideline of the Council for International Organizations of Medical Sciences. The first is the extension of scope that follows from exchanging “biomedical” for “health‐related” research, and the second is the new evaluative basis of “social value,” which implies new ethical requirements of research. We use the example of antibiotic resistance interventions to explore the need to consider the (...) instances of what we term the pragmatic risks of such interventions to evaluate the social value of certain kinds of health‐related research. These (pragmatic) risks severely threaten the social value of interventions in every area where human and social responses significantly impact on their effectiveness. Thus, the social value of health‐related research needed to demonstrate its effectiveness depends on the extent and successful management of such risks. Research designed to take into account the management of pragmatic risks also gives rise to similar types of risks, and the potential for social value in light of those risks needs to be considered in ethical reviews based on the new guidelines. We argue that, to handle this new expanded task, the international system of research ethical review addressed by the guidelines needs institutional development. (shrink)

The development of artificial intelligence (AI) in medicine raises fundamental ethical issues. As one example, AI systems in the field of mental health successfully detect signs of mental disorders, such as depression, by using data from social media. These AI depression detectors (AIDDs) identify users who are at risk of depression prior to any contact with the healthcare system. The article focuses on the ethical implications of AIDDs regarding affected users’ health-related autonomy. Firstly, it presents the (...) (ethical) discussion of AI in medicine and, specifically, in mental health. Secondly, two models of AIDDs using social media data and different usage scenarios are introduced. Thirdly, the concept of patient autonomy, according to Beauchamp and Childress, is critically discussed. Since this concept does not encompass the specific challenges linked with the digital context of AIDDs in social media sufficiently, the current analysis suggests, finally, an extended concept of health-related digital autonomy. (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)

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)

Background The world is urbanizing rapidly; more than half the world’s population now lives in urban areas, leading to significant transition in lifestyles and social behaviours globally. While offering many advantages, urban environments also concentrate health risks and introduce health hazards for the poor. In Bangladesh, although many public policies are directed towards equity and protecting people’s rights, these are not comprehensively and inclusively applied in ways that prioritize the health rights of citizens. The country (...) is thus facing many issues that raise moral and ethical concerns. Methods A narrative literature review was conducted between October 2016 and November 2017 on issues related to social justice, health, and human rights in urban Bangladesh. The key questions discussed here are: i) ethical dilemmas and inclusion of the urban poor to pursue social justice; and ii) the ethical obligations and moral responsibilities of the state and non-state sectors in serving Bangladesh’s urban poor. Using a Rawlsian theory of equality of opportunity to ensure social justice, we identified key health-related ethical issues in the country’s rapidly changing urban landscape, especially among the poor. Results We examined ethical dilemmas in Bangladesh’s health system through the rural–urban divide and the lack of coordination among implementing agencies. The unregulated profusion of the private sector and immoral practices of service providers result in high out-of-pocket expenditures for urban poor, leading to debt and further impoverishment. We also highlight policy and programmatic gaps, as well as entry points for safeguarding the right to health for Bangladeshi citizens. Conclusions The urban health system in Bangladesh needs a reform in which state and non-state actors should work together, understanding and acknowledging their moral responsibilities for improving the health of the urban poor by engaging multiple sectors. The social determinants of health should be taken into account when formulating policies and programs to achieve universal health coverage and ensure social justice for the urban poor in Bangladesh. (shrink)

Amidst the climate of crisis surrounding the rise in opioid-related overdose in the USA, early in 2019, Google and Deloitte launched ‘Opioid360’. Here came a platform combining browser histories, credit, insurance, social media, and traditional survey data to sell the service of risk calculation in population health. Opioid360's approach to automating risk calculation not only promised to identify persons ‘at risk’ of opioid dependence, but also paved the way for broader applications anticipating common chronic diseases and coordinating (...) logistical operations involved in pandemic response. Beginning with this experimental platform, this paper develops an analysis of the Big Data mode of risk calculation - an epistemological and political shift that involves technology companies, investors, insurers, governments, and public health institutions. The analysis focuses on the re-emergence of ‘social determinants of health’ in the rhetoric accompanying novel analytic platforms that estimate, calculate, and compute individual health risks. While the treatment of SDOH has always been a site of political contestation within the discipline of public health, powerful interests are crystallising around the concept and instrumentalising it in platforms that sell algorithmic prediction. Silicon Valley's breed of asset-oriented technoscience appears not only to be amplifying the behaviouralist elements of public health. Among the stakes of the Big Data mode is the paradoxical retreat from changing social conditions that contribute to the prevalence of health and illness in populations; and instead, the promotion of an apparatus for pricing and exchanging individual risk or excluding from services those who bear risk most acutely. (shrink)

The ethics of health incentive research—a form of public health research—are not well developed, and concerns of justice have been least examined. In this paper, we explore what potential long term harms in relation to justice may occur as a result of such research and whether they should be considered as part of its ethical evaluation. ‘Long term harms’ are defined as harms that contribute to existing systematic patterns of disadvantage for groups. Their effects are experienced on a (...) long term basis, persisting even once an incentive research project ends. We will first establish that three categories of such harms potentially arise as a result of health incentive interventions. We then argue that the risk of these harms also constitutes a morally relevant consideration for health incentive research and suggest who may be responsible for assessing and mitigating these risks. We propose that responsibility should be assigned on the basis of who initiates health incentive research projects. Finally, we briefly describe possible strategies to prevent or mitigate the risk of long term harms to members of disadvantaged groups, which can be employed during the design, conduct and dissemination of research projects. (shrink)

The revision of the Council of International Organizations of Medical Sciences (CIOMS) International ethical guidelines for health‐related research (2016) heralds a paradigm shift from the ‘protectionist’ policies that emerged following historical research atrocities of the 20th century, towards a more nuanced and inclusive approach to research participation. Adopting this modified approach will enable countries to secure the benefits of research for individuals and for society as a whole, while at the same time minimizing the potential for exploitation and (...) research‐related harms. This article considers the potential impact of Guideline 16 of the CIOMS 2016 from a New Zealand perspective, with respect to research involving adults with impaired capacity and who are incapable of giving informed consent. While the CIOMS 2016 apply a ‘minimal risk’ threshold to guide research involving adults who lack capacity to consent, New Zealand law currently adopts a ‘best interests’ standard which significantly restricts the scope of permissible research that may be performed in this context. This article argues that the CIOMS 2016 should influence change to New Zealand’s legal framework for ethical review of research. CIOMS 2016 provides useful guidance for the necessary standards and processes to enable the responsible and ethical inclusion of adults with impaired capacity in research. (shrink)

Background We aimed to examine the ethical concerns Singaporeans have about sharing health-data for precision medicine and identify suggestions for governance strategies. Just as Asian genomes are under-represented in PM, the views of Asian populations about the risks and benefits of data sharing are under-represented in prior attitudinal research. Methods We conducted seven focus groups with 62 participants in Singapore from May to July 2019. They were conducted in three languages and analysed with qualitative content and thematic analysis. (...) Results Four key themes emerged: nuanced understandings of data security and data sensitivity; trade-offs between data protection and research benefits; trust in the public and private sectors; and governance and control options. Participants were aware of the inherent risks associated with data sharing for research. Participants expressed conditional support for data sharing, including genomic sequence data and information contained within electronic medical records. This support included sharing data with researchers from universities and healthcare institutions, both in Singapore and overseas. Support was conditional on the perceived social value of the research and appropriate de-identification and data security processes. Participants suggested that a data sharing oversight body would help strengthen public trust and comfort in data research for PM in Singapore. Conclusion Maintenance of public trust in data security systems and governance regimes can enhance participation in PM and data sharing for research. Contrary to themes in much prior research, participants demonstrated a sophisticated understanding of the inherent risks of data sharing, analysed trade-offs between risks and potential benefits of PM, and often adopted an international perspective. (shrink)

There is a growing interest in researching the plight, health, and social care needs of forced migrants and the complex ethical issues related to researching this vulnerable group. Conducting health and social care research with forced migrants is a sensitive and complex issue and can place emotional demands on contributors, requiring high ethical and moral standards which safeguard participants, researchers and the integrity of the study. Researchers and those who review research need to be sensitive (...) to the needs, privacy and fears of participants. In addition to the medical and personal benefits that can be obtained from undertaking research with forced migrants, there comes the risk of stigmatization, exploitation and harm. This paper identifies some, but by no means all, key ethical issues confronting researchers, these dilemmas include the complex issues of language and translation, immigration status, contextual issues, lack of familiarity with the research process, issues of informed consent and safeguarding anonymity. Confidentiality, sensitivity to cultural traditions and values, and avoiding re-traumatization also need to be considered as this knowledge can minimize research risks and protect the rights and welfare of research participants. This paper will draw upon experience of working with refugees and asylum seekers for many years and from experience gained from small-scale qualitative research undertaken with Somali and Ethiopian forced migrants. It argues for the need for a consistent, robust, ethical framework to ensure that the ‘researcher’ does not inadvertently ‘do harm’ by infringing on the security, privacy and well-being of the subjects of the research. This paper in turn adds to the knowledge base on good practice and research ethics and is hoped that it will provide useful guidance for those undertaking the ethical review for this type of research. (shrink)

In this paper we will be discussing the ethical risks of the transcendental quality of virtual spaces as they apply to digital health, especially in relation to new attempts to construct a “social mediome.” As we will discuss in the following section, phenomenology has raised criticisms against the context-lessness and ethical opacity of technology. The creation of a social mediome seems to come as an answer to this criticism as it creates a context that gives voice (...) and flesh to human beings within their virtual lives. Yet, as we will discuss in this paper, the transcendental quality of this social mediome might involve the risk of normalizing health in a way that would prevent individuals from achieving well-being according to the meaning that they personally attribute to it. (shrink)

ObjectiveTo apply a socioecological approach to identify risk and protective factors across levels of the “sports-ecosystem,” which are associated with mental health outcomes among athletes in para-sports and non-para sports. A further aim is to determine whether para athletes have unique risks and protective factor profiles compared to non-para athletes.MethodsA cross-sectional, anonymous online-survey was provided to all categorized athletes aged 16 years and older, registered with the Australian Institute of Sport. Mental health outcomes included mental health (...) symptoms, general psychological distress, risky alcohol consumption and eating disorder risk. Risk and protective factors across multiple levels of the socioecological model, including individual, microsystem, exosystem and macrosystem level factors were assessed via self-report.ResultsA total of 427 elite athletes participated in the study. No significant differences in the rates of mental health problems were observed between para and non-para athletes. Both differences and similarities in risk and protective factor profiles were found across the multiple levels of the sports-ecosystem. Weak evidence was also found to support the hypothesis that certain risk factors, including experiencing two or more adverse life events in the past year, sports related concussion, high self-stigma, inadequate social support and low psychological safety conferred a greater risk for poorer mental health outcomes for para athletes in particular.ConclusionRisk factors occurring across various levels of the sports ecosystem, including individual, interpersonal and organizational level risk factors were found to be associated with a range of poorer mental health outcomes. The association between mental ill-health and certain risk factors, particularly those at the individual and microsystem level, appear to be greater for para athletes. These findings have important implications for policy and mental health service provision in elite sports settings, highlighting the need for more nuanced approaches to subpopulations, and the delivery of mental health interventions across all levels of the sports ecosystem. (shrink)

This article argues that governments in countries that currently permit intensive animal agriculture - especially but not exclusively high-income countries - are, in principle, morally justified in taking steps to restrict or even eliminate intensive animal agriculture to protect public health from the risk of zoonotic pandemics. Unlike many extant arguments for restricting, curtailing, or even eliminating intensive animal agriculture which focus on environmental harms, animal welfare, or the link between animal source food (ASF) consumption and noncommunicable disease, the (...) argument in this article appeals to the value of protecting populations from future global health emergencies and their broad social, economic, and health impacts, taking the SARS-CoV-2 virus as a particularly salient example. The article begins by identifying how intensive animal agriculture contributes to the outbreak (and risk of future outbreaks) of zoonotic diseases. Next, we explore three specific policy options: 1. Incentivizing plant-based and cell-based ASF alternatives through government subsidies; 2. Disincentivizing intensive ASF production through the adoption of a “zoonotic tax”; and 3. Eliminating intensive ASF production through a total ban. We argue that all three of these measures are permissible, although we remain agnostic as to whether these measures are obligatory. We argue for this conclusion on the grounds that each measure is justified by the same sorts of considerations that justify other widely accepted public health interventions, and each is compatible with a variety of theories of justice. We then address potential objections. Finally, we discuss how our novel argument relates to extant ethical arguments in favor or curtailing ASF production and consumption. (shrink)

Corporate social responsibility (CSR) is a comprehensive concept that aims at the promotion of responsible business practices closely linked to the strategy of enterprises. Although there is no single accepted definition of CSR, it remains an inspiring, challenging and strategic development that is becoming an increasingly important priority for companies of all sizes and types, particularly in Europe. Promotion of well-being at work is an essential component of CSR; however, the link between CSR, working conditions and work organisation is (...) still found to be unfamiliar to stakeholders. As CSR is strategic and is regarded by many companies and corporate leaders as an important development, it offers opportunities for psychosocial risk management, an area that is currently among the top priorities in working environment and well-being at work debates. However, the link between CSR and psychosocial risk management has not been addressed clearly before. This paper aims to explore the potential role of CSR in promoting well-being at work through the development of a framework for the management of psychosocial risks. As part of the research, key stakeholders [including the World Health Organization (WHO), the International Labour Organization (ILO), the European Agency for Safety and Health at Work (EU-OSHA), the European Commission (EC), employers’ associations, trade unions and other policy experts] across Europe participated in a survey, interviews and focus groups to assess and clarify the link between CSR and psychosocial risk management. On the basis of the findings, a CSR-inspired approach to the management of psychosocial issues at work is proposed. Such an approach can be a useful tool in contexts where, up until now, expertise and tradition in dealing with psychosocial issues have been lacking. (shrink)

This volume presents the ethical implications of risk information as related to genetics and other health data for policy decisions at clinical, research and societal levels. Ethical, Social and Psychological Impacts of Genomic Risk Communication examines the introduction of new types of health risk information based on faster, cheaper and larger sets of genetic or genomic analysis. Synthesising the results of a five-year interdisciplinary project, it explores the unsolved ethical and social questions around the sharing (...) of this data, such as: What is best practice in risk communication? What are the normative presumptions and ethical consequences of an increased individual responsibility for ones' health? And how does one deal with the gap between the knowledge of risk and the lack of therapeutic options which often exist for complex diseases, such as dementia or some types of cancer? Drawing on contributions from over twenty experts in the field, this collection examines these questions from a liberal bioethics' perspective, advocating for contextual and cultural-sensitive ethical discussions. This book will be of great interest to students and scholars of theoretical and clinical medical ethics, medical sociology, risk communication and ethics of risk, as well as professionals in clinical genetics. (shrink)

An issue that affects the academic engagement, performance, health and wellbeing of university undergraduates is bullying. Substantial literature has examined the predictors of bullying perpetration, but there is little research on the contributions of internet-related factors and the propensity to take risks in bullying. We examined the roles of IGD, risk-taking behavior, and internet addiction in social bullying. Four instruments were used for data collection, namely: Young Adult Social Behavior Scale, the Internet Gaming Disorder Scale, (...) Domain-Specific Risk-Taking Scale, and the Internet Addiction Test Scale. Participants were 552 undergraduate students from the University of Nigeria, Nsukka consisting of 143 males and 409 females. Results of regression analysis showed that gaming disorder and risk-taking behavior had positive associations with social bullying. Thus, the more people grow addicted to internet gaming and takes more risks, the more they are likely to become bullies. Internet addiction had no significant association with social bullying. Efforts should be made to minimize the rate of dysfunctional internet use, GD and risk-taking behaviors of undergraduates in order to curtail bullying perpetration. (shrink)

Governments and citizens of nearly every nation have been compelled to respond to COVID-19. Many measures have been adopted, including contact tracing and risk assessment algorithms, whereby citizen whereabouts are monitored to trace contact with other infectious individuals in order to generate a risk status via algorithmic evaluation. Based on 38 in-depth interviews, we investigate how people make sense of Health Code, the Chinese contact tracing and risk assessment algorithmic sociotechnical assemblage. We probe how people accept or resist (...) class='Hi'>Health Code by examining their ongoing, dynamic, and relational interactions with it. Participants display a rich variety of attitudes toward privacy and surveillance, ranging from fatalism to the possibility of privacy to trade-offs for surveillance in exchange for public health, which is mediated by the perceived effectiveness of Health Code and changing views on the intentions of institutions who deploy it. We show how perceived competency varies not just on how well the technology works, but on the social and cultural enforcement of various non-technical aspects like quarantine, citizen data inputs, and cell reception. Furthermore, we illustrate how perceptions of Health Code are nested in people’s broader interpretations of disease control at the national and global level, and unexpectedly strengthen the Chinese authority’s legitimacy. None of the Chinese public, Health Code, or people’s perceptions toward Health Code are predetermined, fixed, or categorically consistent, but are co-constitutive and dynamic over time. We conclude with a theorization of a relational perception and methodological reflections to study algorithmic sociotechnical assemblages beyond COVID-19. (shrink)

Vietnam, with a geographical proximity and a high volume of trade with China, was the first country to record an outbreak of the new Coronavirus disease (COVID-19), caused by the Severe Acute Respiratory Syndrome Coronavirus 2 or SARS-CoV-2. While the country was expected to have a high risk of transmission, as of April 4, 2020—in comparison to attempts to contain the disease around the world—responses from Vietnam are being seen as prompt and effective in protecting the interests of its citizens, (...) with 239 confirmed cases and no fatalities. This study analyzes the situation in terms of Vietnam’s policy response, social media and science journalism. A self-made web crawl engine was used to scan and collect official media news related to COVID-19 between the beginning of January and April 4, yielding a comprehensive dataset of 14,952 news items. The findings shed light on how Vietnam—despite being under-resourced—has demonstrated political readiness to combat the emerging pandemic since the earliest days. Timely communication on any developments of the outbreak from the government and the media, combined with up-to-date research on the new virus by the Vietnamese science community, have altogether provided reliable sources of information. By emphasizing the need for immediate and genuine cooperation between government, civil society and private individuals, the case study offers valuable lessons for other nations concerning not only the concurrent fight against the COVID-19 pandemic but also the overall responses to a public health crisis. (shrink)

This paper discusses ethical issues related to social work practice in the area of mental health. It does so via the use of a case study taken from my practice whilst I was on placement. Ethical issues are explored within a practice context that is becoming increasingly proceduralised and risk averse, and where protectionist responses contribute to undermining the rights of service users to self-determination. The paper explores the relationship between utilitarian and Kantian ethical theory and ethical (...) decision-making as well as commenting on the usefulness of an anti-oppressive ethical perspective. (shrink)

BackgroundThe rise of Big Data-driven health research challenges the assumed contribution of medical research to the public good, raising questions about whether the status of such research as a common good should be taken for granted, and how public trust can be preserved. Scandals arising out of sharing data during medical research have pointed out that going beyond the requirements of law may be necessary for sustaining trust in data-intensive health research. We propose building upon the use of (...) a social licence for achieving such ethical governance.Main textWe performed a narrative review of the social licence as presented in the biomedical literature. We used a systematic search and selection process, followed by a critical conceptual analysis. The systematic search resulted in nine publications. Our conceptual analysis aims to clarify how societal permission can be granted to health research projects which rely upon the reuse and/or linkage of health data. These activities may be morally demanding. For these types of activities, a moral legitimation, beyond the limits of law, may need to be sought in order to preserve trust. Our analysis indicates that a social licence encourages us to recognise a broad range of stakeholder interests and perspectives in data-intensive health research. This is especially true for patients contributing data. Incorporating such a practice paves the way towards an ethical governance, based upon trust. Public engagement that involves patients from the start is called for to strengthen this social licence.ConclusionsThere are several merits to using the concept of social licence as a guideline for ethical governance. Firstly, it fits the novel scale of data-related risks; secondly, it focuses attention on trustworthiness; and finally, it offers co-creation as a way forward. Greater trust can be achieved in the governance of data-intensive health research by highlighting strategic dialogue with both patients contributing the data, and the public in general. This should ultimately contribute to a more ethical practice of governance. (shrink)

Prevention of age-related disorders is increasingly in focus of health policies, and it is hoped that early intervention on processes of deterioration can promote healthier and longer lives. New opportunities to slow down the aging process are emerging with new fields such as personalized nutrition. Data-intensive research has the potential to improve the precision of existing risk factors, e.g., to replace coarse-grained markers such as blood cholesterol with more detailed multivariate biomarkers. In this paper, we follow an attempt (...) to develop a new aging biomarker. The vision among the project consortium, comprising both research and industrial partners, is that the new biomarker will be predictive of a range of age-related conditions, which may be preventable through personalized nutrition. We combine philosophical analysis and ethnographic fieldwork to explore the possibilities and challenges of managing aging through bodily signs that are not straightforwardly linked to symptomatic disease. We document how the improvement of measurement brings about new conceptual challenges of demarcating healthy and unhealthy states. Moreover, we highlight that the reframing of aging as risk has social and ethical implications, as it is generative of normative notions of what constitutes successful aging and good citizenship. (shrink)

The paper problematises the reliability and ethics of using social media data, such as sourced from Twitter or Instagram, to carry out health-related research. As in many other domains, the opportunity to mine social media for information has been hailed as transformative for research on well-being and disease. Considerations around the fairness, responsibilities and accountabilities relating to using such data have often been set aside, on the understanding that as long as data were anonymised, no real (...) ethical or scientific issue would arise. We first counter this perception by emphasising that the use of social media data in health research can yield problematic and unethical results. We then provide a conceptualisation of methodological data fairness that can complement data management principles such as FAIR by enhancing the actionability of social media data for future research. We highlight the forms that methodological data fairness can take at different stages of the research process and identify practical steps through which researchers can ensure that their practices and outcomes are scientifically sound as well as fair to society at large. We conclude that making research data fair as well as FAIR is inextricably linked to concerns around the adequacy of data practices. The failure to act on those concerns raises serious ethical, methodological and epistemic issues with the knowledge and evidence that are being produced. (shrink)

The current study provides data about the immediate risk perceptions and psychological effects of the COVID-19 pandemic among Italian participants. A sample of 1034 volunteers answered a web-based survey which aimed to investigate the many facets of risk perceptions connected to COVID-19 (health, work, economy, social and psychological), and risk-related variables such as knowledge, news seeking, perceived control, efficacy of containment measures, and affective states. Socio-demographic characteristics were also collected. Results showed that although levels of general concern (...) are relatively high among Italians, risk perceptions are highest with regards to the economy and work, and lowest concerning health. Cognitive and affective risk-related variables affected the several risk perception domains differently. COVID-19 knowledge did not affect any risk perception while the perceived control decreased health risk likelihood. The other risk-related variables amplified risk perceptions: News seeking increased work-economy risk; efficacy of containment measures increased all perceived risks; negative affective states of fear, anger and sadness increased health and psycho-social risks; anxiety increased only health risk, and uncertainty increased work-economy and psycho-social risk perceptions. Finally, positive affective states increased health risk perception. Socio-psychological implications are discussed. (shrink)

This book presents the promises of Precision Medicine (PM) and the challenges of its implementation in daily clinical routine, while addressing the anticipated ethical and social implications. It is the first book that critically analyzes the potential and the dilemmas relevant to genomics and precision medicine from healthcare, public health and global perspectives. The nine chapters presented in this book elaborate on pharmacogenomics' crucial role in maximizing the potential benefits and minimizing medication's potential risks in groups of (...) people, especially in cancer treatment and other health conditions. Infectious and non-communicable diseases (NCDs) are also discussed in this book by identifying challenges and ways to overcome them. Essential concepts are addressed, such as health-related benefits and harm to individuals and the broader community, including threats to individual privacy and autonomy, which warrant just distribution of scarce resources. The book also identifies and addresses the lack of competency in the healthcare workforce in the era of PM and discusses the path to laying the ethical foundation for the implementation of PM in healthcare organizations. (shrink)

It is almost universally acknowledged that risks have to be weighed against benefits, but there are different ways to perform the weighing. In conventional risk analysis, collectivist risk-weighing is the standard. This means that an option is accepted if the sum of all individual benefits outweighs the sum of all individual risks. In practices originating in clinical medicine, such as ethical appraisals of clinical trials, individualist risk-weighing is the standard. This implies a much stricter criterion for risk acceptance, (...) namely that the risk to which each individual is exposed should be outweighed by benefits for that same individual. The different choices of risk-weighing methods in different policy areas seem to have emerged from traditional thought patterns and social relations, rather than from explicit deliberations on possible justifications for the alternative ways to weigh risks against benefits. It is not obvious how the prevalent differences in risk-weighing practices can be reconstructed in terms of consistent underlying principles of preventive health or social priority-setting. (shrink)

Values are numerous, interrelated and hard to discern in professional practice. This article reports on key findings from research into locating professional values within health social work practice in Aotearoa New Zealand. The research explores how 15 health social workers experience and negotiate value demands when working with newborn infants. A staged methodology underpinned by constructivist grounded theory was utilised to generate theoretical knowledge through two phases of semi-structured individual interviews. The research firmly located health (...) social workers practice in the middle ground of a complex, tension-ridden practice environment with health social workers courageously striving to balance competing requirements. Within a health model influenced by neoliberal policy, key tensions related to challenges faced due to professionals oversimplifying social circumstances in risk-laden situations. This resulted in issues of judgements, bias and racism being a central concern for the participants’ social work practice. Despite these tensions, the place of social justice as a primary organising value was affirmed by the research. A stronger focus on the profession’s values would strengthen the collective voice of health social workers and their identity, in order to better address the systemic drivers of health inequities. (shrink)

In recent years, there has been a distinct shift in the relationship between science and society. We have moved away from the classic unidirectional “deficit” model (Simis et al. 2016) focused on t...

In this paper, we use the risk apportionment technique of Eeckhoudt, Rey and Schlesinger (2007) to study higher order risk preferences for others’ health as well as ex-ante and ex-post inequality preferences for social risky distributions, and their interaction. In an experiment on a sample of university students acting as impartial spectators, we observe risk aversion towards social health losses and a dislike of ex-ante inequality. In addition, evidence for ex-post inequality seeking is much weaker than (...) evidence for ex-ante inequality aversion. Because ex-ante inequality aversion is unrelated to risk aversion, we conclude that simple forms of utilitarianism are not relevant for individual judgment of social risk over health. Last, our investigation of precautionary distribution, which would occur when one particular group in the society suffers from background health risk, shows substantial polarization of preferences. (shrink)

Although big-data research has met with multiple controversies in diverse fields, political and security implications of big data in life sciences have received less attention. This paper explores how threats and risks are anticipated and acted on in biobanking, which builds research repositories for biomedical samples and data. Focusing on the biggest harmonisation cluster of biomedical research in Europe, BBMRI-ERIC, the paper analyses different logics of risk in the anticipatory discourse on biobanking. Based on document analysis, interviews with ELSI (...) experts, and field research, three types of framing of risk are reconstructed: data security, privacy, and data misuse. The paper finds that these logics downplay the broader social and political context and reflects on the limits of the practices of anticipatory governance in biobanking. It argues that this regime of governance can make it difficult for biobanks to address possible future challenges, such as access to biomedical data by authorities, pressures for integrating biobank data with other type of personal data, or their use for profiling beyond medical purposes. To address potential controversies and societal implications related to the use of big data in health research and medicine, the paper suggests to expand the vocabulary and practices of anticipatory governance, in the biobanking community and beyond. (shrink)

Risk perception is important in determining health-protective behavior. During the rise of the COVID-19 epidemic, we tested a comprehensive structural equation model of risk perception to explain adherence to protective behaviors in a crisis context using a survey of 572 Italian citizens. We identified two categories of protective behaviors, labeled promoting hygiene and cleaning, and avoiding social closeness. Social norms and risk perceptions were the more proximal antecedents of both categories. Cultural worldviews, affect, and experience of COVID-19 (...) were the more distal predictors. Promoting hygiene and cleaning was triggered by the negative affective attitude toward coronavirus and mediated by an affective appraisal of risk. The deliberate dimension of risk perception predicted only avoiding social closeness. Social norms predicted both types of behaviors and mediated the relations of cultural worldviews. Individualism, more than hierarchy, shaped the affective evaluation of coronavirus. The model was an acceptable fit to the data and accounted for 20% and 29% of the variance in promoting hygiene and cleaning, and avoiding social closeness, respectively. The findings were robust to the effect of sociodemographic factors. Taken together, our findings confirmed the empirical distinction between affective and deliberate processes in risk perception, supported the validity of the affect heuristic, and highlighted the role of social norms as an account for why individualistic people were less likely to follow the prescribed health-protective behaviors. Implications for risk communication are discussed. (shrink)

In this article, we argue that apart from evaluating the causes and the social determinants of health inequalities, an evaluation of the effects of health inequalities is due. For this, we propose the ideal of relational equality as an evaluative framework, and test to what extent health inequalities threaten this ideal of a society of equals. We identify three ways in which they do and argue that these risks are especially great for those lower down (...) the socio-economic strata. We thus conclude that equality in health is instrumental to social justice, and that socio-economic inequalities in health are not only unjust due to their causes but also due to their consequences. We continue to argue that our instrumental approach opens a perspective to mitigate the identified injustices by changing society, rather than reducing inequalities in health, and argue that this is an advantage in the light of the realistic assumption that of the socio-economic health inequalities will persist. The article thus offers a complementary approach to both the evaluation and the mitigation of the injustice of socio-economic inequalities in health. (shrink)

Recent social and cultural theory has emphasized that in risk culture the achievement of a reflexive self-identity is a key resource, for example, in terms of employment, citizenship and intimacy. Commentators on shifts in the organization of health have also stressed the significance of achieving a self-reflexive identity. So, for example, knowing, self-monitoring subjects have emerged as optimal citizens in relation to health. While there is certainly some critical commentary on these kinds of moves, nevertheless reflexive sexual (...) subjects in relation to health have received less critical attention. In this article, through an analysis of HIV antibody testing and, in particular, by looking at the making of reflexivity through the practice of testing, I consider the emergence of a heterosexuality defined in terms of reflexivity. In so doing I suggest that reflexivity should not be understood - as many commentators suggest - as an effect but rather as constitutive of risk culture. (shrink)

The complex regulatory framework governing the U.S. health care system can be an obstacle to programming that address health-related social needs. In particular, health care fraud and abuse law is a pernicious barrier as health care organizations may minimize or forego programming altogether out of real and perceived concern for compliance. And because health care organizations have varying resources to navigate and resolve compliance concerns, as well as different levels of risk tolerance, fears (...) related to the legal landscape may further entrench inequities in access to meaningful programs that improve health outcomes. This article uses food and nutrition programming as a case study to explore the complexities presented by this area of law and to highlight pathways forward. (shrink)

The complex health and social circumstances of living-at-risk, frequent users of emergency departments (aREDFUs) in the health jurisdictions of high-income countries, and the related, significant challenges posed for emergency departments and the health care providers working within them, are identified and explored in the paper. Ethical analyses of a set of relevant domains are performed, i.e., individual and relational autonomy considerations, relevant social construction and personal responsibility conceptions, patient welfare principles (beneficence, nonmaleficence, continuity of (...) care), harm reduction methodologies and their applications, health equity, and justice considerations of the distributive, formal and social types. The outcomes of these analyses demonstrate that there are ethically compelling reasons for emergency departments to adopt an ethics-informed, policy-based approach to the longitudinal care and management of living-at-risk, frequent users of emergency departments. From a formal justice perspective, the development and uses of such an approach are justified by a demonstrable relevant difference between living-at-risk, frequent users of emergency departments and other persons and groups of patients who visit emergency departments. We propose an example of such a policy-based approach. Examples of possible, pragmatic applications of this approach, which help ensure that aREDFUs who present to the ED are managed in a fair and optimally consistent manner, are provided for the consideration of an urban emergency department’s policymaking working group. (shrink)

Research highlights several risk and resilience factors at multiple ecological levels that influence individuals’ mental health and wellbeing in their everyday lives and, more specifically, in disaster or outbreak situations. However, there is limited research on the role of these factors in the early days of the COVID-19 crisis. The present study examined if and how potential risk factors and resilience factors are associated with mental health and well-being outcomes, and whether these resilience factors buffer the associations between (...) risk factors and said outcomes. One to two weeks after the government recommended preventative measures, 1,122 Canadian workers completed an online questionnaire, including multiple wellbeing outcome scales in addition to measures of potential risk and resilience factors. Structural equation models were tested, highlighting that overall, the considered risk factors were associated with poorer wellbeing outcomes, except social distancing which was associated with lower levels of stress. Each of the potential resilience factors was found to have a main effect on one or more of the wellbeing outcomes. Moderation analysis indicated that in general these resilience factors did not, however, buffer the risk factors. The findings confirm that the COVID-19 crisis encompasses several stressors related to the virus as well as to its impact on one’s social, occupational, and financial situation, which put people at risk for lower wellbeing as early as one to two weeks after the crisis began. While several resilience factors emerged as positively related to wellbeing, such factors may not be enough, or sufficiently activated at that time, to buffer the effects of the numerous life changes required by COVID-19. From an ecological perspective, while mental health professionals and public health decision-makers should offer/design services directly focused on mental health and wellbeing, it is important they go beyond celebrating individuals’ inner potential for resilience, and also support individuals in activating their environmental resources during a pandemic. (shrink)

The rapid expansion of computational tools and of data science methods in healthcare has, undoubtedly, raised a whole new set of bioethical challenges. As Laacke and colleagues rightly note,...

Race and ethnicity are well-established epidemiological categories that relate to the patients’ risk of exposure and their susceptibility/resistance to disease. However, this association creates the notion that factors other than a personal identity need not be held responsible for patients’ health problems. This work deconstructs the notion of race and ethnicity as risk factors for immigrant ill health, which is prevalent in current medical research and practice, by tracing its roots in Canadian history. The understanding that medical knowledge (...) is subject to diverse historical, social, cultural and political influences can change the way health professionals perceive their patients as a health threat. (shrink)

Assessing social risks has proven difficult for IRBs. We undertook a novel effort to empirically investigate social risks before an HIV prevention trial among drug users in Thailand and China. The assessment investigated whether law, policies and enforcement strategies would place research subjects at significantly elevated risk of arrest, incarceration, physical harm, breach of confidentiality, or loss of access to health care relative to drug users not participating in the research. The study validated the investigator's (...) concern that drug users were subject to serious social risks in the site localities, but also suggested that participation in research posed little or no marginal increase in risk and might even have a protective effect. Our experience shows that it is feasible to inform IRB deliberations with actual data on social risks, but also raises the question of whether and when such research is an appropriate use of scare research resources. (shrink)

In the last decade, a number of studies in the behavioural sciences, particularly in psychology and economics, have explored the complexity of individual risk behaviour and its underlying factors. Most previous studies have examined the influences of various socio-economic, cognitive, biological and psychological factors on human decision-making however, the relationship between the decision-makers’ risk preferences and occupational background has not received much empirical attention. Accordingly, in the current study, we investigated how occupational background, together with decision-making framing (e.g., variations in (...) decision domain, context, presentation of risk and utility ratios), influence participants’ risk preferences for decision options with equivalent expected utility. Our novel findings indicate that risk preferences may vary among individuals from different occupational backgrounds. As such, when the task was framed in gain terms, participants who mostly deal with health/safety-related risks on a day-to-day basis (high-risk occupations) were predominantly risk-averse (avoiding risky options), while participants who mostly deal with financial/social risks (white-collar occupations) were prone to risk-seeking behaviour (avoiding certain options). Specifically, in “high-risk” occupations, participants’ pattern of choices changed from risk-averse in gain scenarios to risk-seeking in loss scenarios. However, the opposite pattern of risk preferences was found in participants with “white-collar” occupations. Our findings indicate that decision-makers’ occupational backgrounds influence risk preferences under some circumstances. (shrink)

Determining Risk Factors and Demographic Patterns of Suicide in Tehran Suicide refers to the death of a person that is primarily achieved by self-harm. Today, it is considered one of the major public health issues. One of the important risk factors associated with attempted suicide is social relations. This study is a descriptive and analytical study that aims to identify the suicide rate, the risk factors in suicide, and the methods of suicide. The findings show that there is (...) a significant relationship between suicide and demographic variables that include age, sex, educational level, adherence to religion, and occupation. This research also shows the psychological factors that lead to suicide include depression, addiction, lack of social activities, and mental disorders caused by chronic disease. (shrink)

Research Ethics, Volume 18, Issue 1, Page 64-83, January 2022. Automated, wearable cameras can benefit health-related research by capturing accurate and objective information about individuals’ daily experiences. However, wearable cameras present unique privacy- and confidentiality-related risks due to the possibility of the images capturing identifying or sensitive information from participants and third parties. Although best practice guidelines for ethical research with wearable cameras have been published, limited information exists on the risks of studies using wearable (...) cameras. The aim of this literature review was to survey risks related to using wearable cameras, and precautions taken to reduce those risks, as reported in empirical research. Forty-five publications, comprising 36 independent studies, were reviewed, and findings revealed that participants’ primary concerns with using wearable cameras included physical inconvenience and discomfort in certain situations. None of the studies reviewed reported any serious adverse events. Although it is possible that reported findings do not include all risks experienced by participants in research with wearable cameras, our findings suggest a low level of risk to participants. However, it is important that investigators adopt recommended precautions, which can promote autonomy and reduce risks, including participant discomfort. (shrink)

I outline and defend two egalitarian theories, which yield distinctive and, I argue, complementary answers to why health-related inequalities matter: a brute luck egalitarian view, according to which inequalities due to unchosen, differential luck are bad because unfair, and a social egalitarian view, according to which inequalities are bad when and because they undermine people’s status as equal citizens. These views identify different objects of egalitarian concern: the brute luck egalitarian view directs attention to health-related (...) well-being, while social egalitarianism focuses on health-related capabilities that are central to a person’s status as a citizen. I argue that both views are correct and should jointly guide priority-setting in health. (shrink)

In this systematic review, we summarized and evaluated the evidence for effects of, and associations between, immersive nature-experience on mental, physical and social health promotion outcomes. Immersive nature-experience was operationalized as non-competitive activities, both sedentary and active, occurring in natural environments removed from everyday environments. We defined health according to the World Health Organization’s holistic and positive definition of health and included steady-state, intermediate, and health promotion outcomes. An electronic search was performed for Danish, (...) English, German, Norwegian, and Swedish articles published between January 2004 and May 2017. Manual approaches, e.g., bibliographies from experts, supplemented the literature search. Data were extracted from 461 publications that met the inclusion criteria. To assess the status and quality of the evidence for health promotion effects of immersive nature-experience, we focused on the subset of studies based on controlled designs (n = 133). Outcome level quality of the evidence was assessed narratively. Interventions most often involved adventure-based activities, short-termed walking, and seated relaxation in natural environments. We found positive effects on a range of health promotion outcomes grouped under psychological wellbeing (n = 97; ≈55% positive; ≈13% mixed; ≈29% non-significant; 2% negative); psychosocial function (n = 67; ≈61% positive; ≈9% mixed; ≈30% non-significant); psychophysiological stress response (n = 50; ≈58% positive; ≈18% mixed; ≈24% non-significant), and cognitive performance (n = 36; ≈58% positive; ≈6% mixed; ≈33% non-significant; 3% negative); and social skills and relationships (n = 34; ≈70% positive; ≈7% mixed; ≈22% non-significant). Findings related to outcomes categorized under physical health, e.g., risk of cardiovascular disease, were less consistent (n = 51; ≈37% positive; ≈28% mixed; ≈35% non-significant). Across the types of interventions and outcomes, the quality of the evidence was deemed low and occasionally moderate. In the review, we identify, discuss, and present possible solutions to four core methodological challenges associated with investigating immersive nature-experience and health outcomes: 1) intervention and program complexity; 2) feasibility and desirability of randomization; 3) blinding of participants and researchers; and 4) transferability and generalizability. The results of the review have been published as a popular-scientific report and a scientific research overview, both in Danish language. (shrink)

Previous research suggests a higher perceived risk associated with a risky behavior predicts a lower likelihood of involvement in that behavior; however, this relationship can vary based on personality characteristics such as impulsivity and behavioral activation. During the COVID-19 pandemic, individuals began to re-evaluate the level of risk associated with everyday behaviors. But what about risks associated with “typical” risk-taking behaviors? In the present study, 248 undergraduate student participants completed measures of impulsivity, behavioral activation and inhibition, propensity to take (...) risks, numeracy, and perceptions of and involvement in both risk-taking behavior and health promoting behavior. Our study revealed that higher behavioral inhibition and greater propensity to take risks predicted greater likelihood of involvement in COVID-19-related risk behaviors, even after accounting for perceived risks and benefits of the behavior. Greater likelihood of involvement in social risk behaviors was predicted by greater numeracy and risk-taking propensity. Identifying as male, a greater propensity to take risks, and greater impulsivity predicted increased health/safety risk behaviors. Younger age, lower risk-taking propensity, and lower impulsivity were associated with a greater likelihood of donating blood. For the likelihood of registering to become an organ donor, increasing risk perception, both before and during the pandemic, was associated with greater likelihood of registering, but greater risk-taking propensity was associated with a decreased likelihood of organ donation registration. For flu vaccination, a greater propensity to take risks was associated with a greater likelihood of flu vaccination during the 2020–2021 flu season. Both cognitive and personality factors can predict involvement in risk-taking and health-promotion behaviors, warranting their continued examination. (shrink)

This survey was conducted in 2017 to investigate factors influencing social risk perception of biotechnologists and plant breeders in training toward GM food based on a conceptual model. A random sample of 210 biotechnologists and plant breeders in training was studied. Confirmatory factor analysis and the reliability tests have been used to verify the uni-dimensionality of the measurement scale, SEM also was carried out to determine the most parsimonious models with the best fit for social risk perception of (...) GM foods and path analysis was conducted to understand the exogenous variables introduced in the research model. The findings revealed that the engineers in training had moderate social risk perception regarding GM foods. Moreover, the results of structural equation modeling showed the capability of the model in predicting the social risk perceptions of engineers in training. The psychological attributes of risks, social benefit perception, attitude toward using technology, level of religiosity, and moral and ethical beliefs emerged as the most powerful predictors of the social risk perception. The social benefit perception and attitude toward using technology also mediated the effects of psychological attributes of risks, level of religiosity, and moral and ethical beliefs. The social benefit perception also had an indirect influence on the engineers in training’s social risk perception of GM foods. Finally, we recommend the application of the model developed by this study for better understanding of social risk perception of stakeholders to have a more informed view of the development and promotion of GM foods. (shrink)

Although health matters are commonly discussed in various social contexts, health-related interpersonal communication still remains a black box in health communication research. Bringing together research from the fields of health communication and interpersonal communication, we therefore examine how people communicate about health and illness in their everyday lives. Based on Channel Complementary Theory and the concept of communication repertoires, we focus on a) the communication partners, b) the communication channels, and c) the communication (...) patterns relevant to health-related interpersonal communication. We conducted a qualitative study with 22 semi-structured online interviews combined with ego-centered network maps. Findings show that a) what is discussed with whom depends on the intimacy of the relationship, topic sensitivity, and partners’ personal characteristics, b) face-to-face communication is the preferred way of communicating, and c) (a-)symmetry of roles, (in)formality, and intimacy of the relationship influence communication. (shrink)

In this article, I defend luck at the expense of risk. Or, more precisely, I try to make a distinction that gives both concepts fair treatment. I start by making it clear that luck stands in opposition to control and not to causation. Both luck and risk are related to causal uncertainty. But it is warranted to talk about risk only when the uncertainty involved is brought under control, as it is in some familiar forms of fair gambling such (...) as dicing and roulette. Life is however not a fair gamble. We rarely have the kind of control over the preconditions of life that we have over the preconditions of say dicing. Luck therefore has profound influence on our lives and our health. This means that the standard conception of responsibility - that is, that we stand responsible only for consequences that we control - breaks down far more often than what is usually acknowledged. I therefore end the article by arguing that the standard conception of responsibility ought to be supplemented with a different conception that I have called "responsibility because of social involvement.". (shrink)