Background:To date, most research on aggression in mental disorders focused on active-aggressive behavior and found self-directed and other-directed active aggression to be a symptom and risk-factor of psychopathology. On the other hand, passive-aggressive behavior has been investigated less frequently and only in research on psychodynamic defense mechanisms, personality disorders, and dysfunctional self-control processes. This small number of studies primarily reflects a lack of a reliable and valid clinical assessment of passive-aggressive behavior. To address this gap, we developed the (...) Test of Passive Aggression (TPA), a 24-item self-rating scale for the assessment of self-directed and other-directed passive-aggressive behavior.Method:Study 1 examined the internal consistency and factorial validity of the TPA in an inpatient sample (N= 307). Study 2 investigated the retest-reliability, internal consistency, and construct validity (active aggression, personality traits, impulsivity) of the TPA in a student sample (N= 180).Results:In line with our hypothesis, Exploratory Structural Equation Modeling revealed an acceptable to good fit of a bi-factorial structure of the TPA (Chi-square-df-ratio= 1.98;RMSR= 0.05, fit.off = 0.96). Both TPA scales showed good to excellent internal consistency (α= 0.83–0.90) and 4-week retest-reliability (rtt= 0.86). Correlations with well-established aggression scales, measures of personality, and impulsivity support discriminant and convergent validity of the TPA.Conclusions:The TPA is a reliable and valid instrument for the assessment of self-directed and other-directed passive-aggressive behavior. (shrink)

This open access book offers insights into the development of the ground-breaking Global Code of Conduct for Research in Resource-Poor Settings (GCC) and the San Code of Research Ethics. Using a new, intuitive moral framework predicated on fairness, respect, care and honesty, both codes target ethics dumping – the export of unethical research practices from a high-income setting to a lower- or middle-income setting. The book is a rich resource of information and argument for any research (...) stakeholder who opposes double standards in research. It will be indispensable for applicants to European Union framework programmes, as the GCC is now a mandatory reference document for EU funding. (shrink)

Collaborative research practices in the field of plant genetic resources must follow the principles of fairness and equity as defined in the Convention on Biological Diversity (CBD) and in the International Treaty on Plant Genetic Resources for Food and Agriculture (ITPGRFA). In this context the concepts of fairness and equity generally refer to the substantive and procedural dimensions associated with sharing the benefits of this research. But neither term is clearly defined by these international treaties, and the meanings (...) attributed to the concepts vary among different societies. This paper looks at the question of how to account for the diversity among value systems when conducting research that implicates diverse stakeholders and respects the requirements of fairness and equity. We incorporated an auto-ethnography method developed as part of a multi-stakeholder network involved in research projects on plant genetic resources in West Africa. A theatrical device was used as a framework for testing the principles of fairness and equity, helping us to collectively identify feelings of injustice, and explore the conditions for making collaborative research practices more ethical in ways that respect the perspectives of different stakeholders. In an environment of extensive political and socio-cognitive inequality, this approach makes it possible to explain the criteria relating to interactional justice and expectations in terms of socio-political and socio-emotional benefits. It also invites us to consider the principles of fairness and equity in a framework of ethical competence that goes beyond international directives. (shrink)

COVID-19 vaccine research success and emergency use authorizations have shown the life sciences’ potential for positive health impact. But they also underscore potentially divergent and conf...

The earthquakes which struck Nepal’s capital in 2015 were humanitarian disasters. Not only did they inflict tragic loss of life and livelihoods, they also destroyed parts of the Kathmandu Valley’s unique UNESCO World Heritage site. These monuments were not just ornate structures but living monuments playing central roles in the daily lives of thousands, representing portals where the heavens touch earth and people commune with guiding deities. Their rehabilitation was also of economic importance as they represent a major source of (...) tourist income and employment. Unfortunately, the social and political desire for rapid reconstruction resulted in the swift removal of many traditionally constructed foundations and their replacement with modern materials without assessments of whether they contributed towards the collapse of individual monuments. These actions, combined with the wholesale removal, mixing and dumping of modern and historic debris, contributed to a second, equally destructive, cultural catastrophe – irreversible damage to Kathmandu’s Medieval fabric, in a process which frequently excluded local communities and custodians. This case study draws from our collective reflections and lessons learned from our attempts to enable equitable and ethical research partnerships between UK and Nepali colleagues as well as local communities in the debris of the Kasthamandap, Kathmandu’s eponymous monument. After briefly describing the potential of mobilising archaeologists in post-disaster contexts and outlining the challenges of undertaking research in such a setting, our case study utilises the TRUST Code to assess the character and success of our multidisciplinary collaboration in a time of crises. (shrink)

Objectives: To describe the concerns and priorities of key stakeholders in a developing country regarding ethical obligations held by researchers and perceptions of equity or “what is fair” for study participants in an HIV/AIDS clinical drug trial. Design: Qualitative study with focus groups. Setting: Teaching and referral hospital and rural health centre in western Kenya. Participants: Potential HIV/AIDS clinical trial participants, clinician researchers, and administrators. Results: Eighty nine individuals participated in a total of 11 focus groups over a four month (...) period. The desire for continued drug therapy, most often life long, following an HIV/AIDS clinical trial was the most common priority expressed in all focus groups. Patients with and without HIV/AIDS also thought subsidisation of drug therapies and education were critical forms of compensation for clinical trial participation. Financial incentives were considered important primarily for purchasing drug therapy as well as obtaining food. Patients noted a concern for the potential mismanagement of any money offered. Clinician researchers and administrators felt strongly that researchers have a moral obligation to participants following a trial to provide continued drug therapy, adverse event monitoring, and primary care. Finally, clinician researchers and administrators stressed the need for thorough informed consent to avoid coercion of study participants. Conclusions: Kenyan patients, clinician researchers, and administrators believe that it would be unfair to stop antiretroviral therapy following an HIV/AIDS clinical trial and that researchers have a long term obligation to participants. (shrink)

Qualitative researchers, particularly those researching business and society topics, should embrace artificial intelligence (AI) to conduct efficient, explicatory, and equitable research but also exercise caution to avoid its pitfalls.

Much contemporary nanotoxicology, nanotherapeutic and nanoregulatory research has been characterised by a focus on investigating how delivery of engineered nanoparticles (ENPs) to cells is dictated primarily by components of the ENP surface. An alternative model, some implications of which are discussed here, begins with fundamental physicochemical research into the interaction of a dynamic nanoparticle-protein corona (NPC) with biological systems. The proposed new model also requires, however, that any such fresh NPC physicochemical research approach should involve integration and (...) targeted collaboration from the earliest stages with nanotoxicology, nanotherapeutics and nanoregulatory expertise. The justification for this integrated approach, we argue, relates not just to efficiency and promotion of innovation, but to an acknowledgement that public-funded basic physicochemical research in particular should now be accepted to incorporate strong higher order public goods elements from its inception, not merely after product development at the technology transfer stage. Issues, in other words, such as university research co-operation, commercialization and intellectual property (IP) protection, safety and cost-effectiveness regulatory assessment, as well as technology transfer should not be viewed as second tier considerations even in a ‘blue sky’ NPC basic research agenda. (shrink)

“Big ticket” items in medicine pose a moral puzzle. We can call it the “Coby Howard puzzle,” after the boy whose need for an expensive bone marrow transplant forced Oregonians to reassess their policy of prohibiting this and other expensive “big ticket” procedures in favor of more low-tech, apparently cost-efficient interventions. The Oregon rationing debate was stimulated by the concern that expenditures on “big ticket” medical treatments for life-threatening disease were coming at the expense of low-tech, preventive “basic” care like (...) immunizations, wellbaby clinics, and prenatal care.Another recent example was the public controversy over expenditures of over $1,800 per day on a project to try to separate Siamese twins conjoined at the heart. The physicians, prior to the procedure, claimed there was a one percent chance of success. It was reported that 50,000 children in Philadelphia could be immunized at the cost of that innovative therapy. Cost-benefit analysis suggests that much greater good would be done in the long run if we ignored the expensive, long-shot, high-risk projects and focused on basic medical needs. (shrink)

“Big ticket” items in medicine pose a moral puzzle. We can call it the “Coby Howard puzzle,” after the boy whose need for an expensive bone marrow transplant forced Oregonians to reassess their policy of prohibiting this and other expensive “big ticket” procedures in favor of more low-tech, apparently cost-efficient interventions. The Oregon rationing debate was stimulated by the concern that expenditures on “big ticket” medical treatments for life-threatening disease were coming at the expense of low-tech, preventive “basic” care like (...) immunizations, wellbaby clinics, and prenatal care.Another recent example was the public controversy over expenditures of over $1,800 per day on a project to try to separate Siamese twins conjoined at the heart. The physicians, prior to the procedure, claimed there was a one percent chance of success. It was reported that 50,000 children in Philadelphia could be immunized at the cost of that innovative therapy. Cost-benefit analysis suggests that much greater good would be done in the long run if we ignored the expensive, long-shot, high-risk projects and focused on basic medical needs. (shrink)

Recent studies highlight the need for ethical and equitable digital health research that protects the rights and interests of racialized communities. We argue for practices in digital health that promote data self-determination for these communities, especially in data collection and management. We suggest that researchers partner with racialized communities to curate data that reflects their wellness understandings and health priorities, and respects their consent over data use for policy and other outcomes. These data governance approach honors and builds (...) on Indigenous Data Sovereignty (IDS) decolonial scholarship by Indigenous and non-indigenous researchers and its adaptations to health research involving racialized communities from former European colonies in the global South. We discuss strategies to practice equity, diversity, inclusion, accessibility and decolonization (EDIAD) principles in digital health. We draw upon and adapt the concept of Precision Health Equity (PHE) to emphasize models of data sharing that are co-defined by racialized communities and researchers, and stress their shared governance and stewardship of data that is generated from digital health research. This paper contributes to an emerging research on equity issues in digital health and reducing health, institutional, and technological disparities. It also promotes the self-determination of racialized peoples through ethical data management. (shrink)

From its inception, genomics has been a speculative endeavor, fixated on a far-off horizon that would deliver on the promise of targeted diagnostics and individualized therapeutics (Fortun 2008). M...

BackgroundRapid data sharing can maximize the utility of data. In epidemics and pandemics like Zika, Ebola, and COVID-19, the case for such practices seems especially urgent and warranted. Yet rapidly sharing data widely has previously generated significant concerns related to equity. The continued lack of understanding and guidance on equitable data sharing raises the following questions: Should data sharing in epidemics and pandemics primarily advance utility, or should it advance equity as well? If so, what norms comprise equitable (...) data sharing in epidemics and pandemics? Do these norms address the equity-related concerns raised by researchers, data providers, and other stakeholders? What tensions must be balanced between equity and other values?MethodsTo explore these questions, we undertook a systematic scoping review of the literature on data sharing in epidemics and pandemics and thematically analyzed identified literature for its discussion of ethical values, norms, concerns, and tensions, with a particular emphasis on equity. We wanted to both understand how equity in data sharing is being conceptualized and draw out other important values and norms for data sharing in epidemics and pandemics.ResultsWe found that values of utility, equity, solidarity, and reciprocity were described, and we report their associated norms, including researcher recognition; rapid, real-time sharing; capacity development; and fair benefits to data generators, data providers, and source countries. The value of utility and its associated norms were discussed substantially more than others. Tensions between utility norms and equity norms were raised.ConclusionsThis study found support for equity being advanced by data sharing in epidemics and pandemics. However, norms for equitable data sharing in epidemics and pandemics require further development, particularly in relation to power sharing and participatory approaches prioritizing inclusion. Addressing structural inequities in the wider global health landscape is also needed to achieve equitable data sharing in epidemics and pandemics. (shrink)

This study assessed the relationship between ethical reasoning and the decision to grant equitable relief using an innocent spouse vignette where a wife had partial knowledge of her husband''s tax fraud. A path model derived from various ethics theories was tested using a sample of 357 accounting, legal, and human resource professionals, and after careful examination of the measurement and structural relationships in the path model, the results provided partial support for the study''s hypotheses. Moral intensity was marginally associated (...) with an increased recognition of an ethical issue and positively related ethical judgments made in an innocent spouse situation, and moral intensity was also negatively related to the decision to grant relief. The ethical judgment variable was positively related to the decision to grant relief, while ethical issue awareness was marginally associated with the decision to deny relief. The implications of these findings are discussed, along with the limitations of the study and suggestions for future research. (shrink)

Dementia is an ever-growing public health concern with significant impact on the quality of life of older adults and their families (Aranda et al. 2021). Research continues to investigate treatment...

The main question explored by the book is: How can cross-border access to human genetic resources, such as blood or DNA samples, be governed in such a way as to achieve equity for vulnerable populations in developing countries? The book situates the field of genomic and genetic research within global health and research frameworks, describing the concerns that have been raised about the potential unfairness in exchanges during recent decades. Access to and sharing in the benefits of human (...) biological resources are aspects not regulated by any international legal framework such as the Convention on Biological Diversity, which applies only to the exchange of plants, animals and microorganisms, as well as to associated traditional knowledge. Examples of genetic research perceived as exploitative are provided in order to illustrate the legal vacuum concerning the global governance of human genetic resources. The main conclusions drawn from the legal and ethical analysis are: - Benefit sharing is crucial in order to avoid the exploitation of developing countries in human genetic research. - With functioning research ethics committees, undue inducement is less of a concern in genetic research than in other areas of medical research (e.g. clinical trials). - Concerns remain over research involving indigenous populations; accordingly, recommendations are provided. In drawing these conclusions, the book addresses in detail a highly pressing topic in global bioethics and international law. In this regard, it combines bioethical arguments with jurisprudence, in particular with reference to the law of equity and the legal concepts of duress (coercion), unconscionable dealing, and undue inducement. (shrink)

The post‐genomics era promises a revolution characterized by precision medicine and the integration of genomics into almost every area of biomedical research. At the same time, there are concerns that if care is not taken, the genomics revolution may widen global inequities in science and health. In Africa, these concerns are primarily linked to the underrepresentation of African populations in genomics research, limited genomics research capacity in Africa and associated macro‐level justice issues such as benefit sharing, inequitable (...) international research collaborations, and the contribution of genomics to the health and research priorities of Africa. Addressing these concerns requires an in‐depth reflection on how the ideals of global justice and equity may be advanced in genomics research. To contribute to the limited but growing scholarship on global genomics equity, especially in the African context, we performed a conceptual analysis of three accounts of justice and governance namely, Ubuntu, shared health governance and global governance of health, with the aim of identifying principles that could inform genomics governance in Africa. We used a convergence approach in the conceptual analysis, resulting in the identification of nine principles namely: solidarity, furthering the ideals of health justice, reciprocity, shared decision‐making, shared resources, shared responsibility, mutual trust, transparency, and mutual collective accountability. Examples of how the principles may be applied are provided. We recommend that these principles should form the foundation of any mechanism that seeks to systematically advance justice, fairness and equity in genomics research in Africa and more broadly, global health and science equity. (shrink)

It is well established that demographic representation in clinical research is important for understanding the safety and effectiveness of novel therapeutics and vaccines in diverse patient populations. In recent years, the National Institutes of Health and Food and Drug Administration have issued guidelines and recommendations for the inclusion of women, older adults, and racial and ethnic minorities in research. However, these guidelines fail to provide an adequate explanation of why racial and ethnic representation in clinical research is (...) important. This article aims to both provide the missing arguments for why adequate representation of racial and ethnic minorities in clinical research is essential and to articulate a number of recommendations for improving diversity going forward.Appropriate racial and ethnic representation and fair inclusion help (1) increase the generalisability of clinical trial results, (2) equitably distribute any benefits of clinical research and (3) enable trust in the research enterprise. (shrink)

Bioethics, Volume 36, Issue 4, Page 411-422, May 2022.

Clinical trials emerged in rapid succession as the COVID-19 pandemic created an unprecedented need for life-saving therapies. Fair and equitable subject selection in clinical trials offering investigational therapies ought to be an urgent moral concern. Subject selection determines the distribution of risks and benefits, and impacts the applicability of the study results for the larger population. While Research Ethics Committees monitor fair subject selection within each trial, no standard oversight exists for subject selection across multiple trials for the (...) same disease. Drawing on the experience of multiple clinical trials at a single academic medical centre in the USA, we posit that concurrent COVID-19 trials are liable to unfair and inequitable subject selection on account of scientific uncertainty, lack of transparency, scarcity and, lastly, structural barriers to equity compounded by implicit bias. To address the critical gap in the current literature and international regulation, we propose new ethical guidelines for research design and conduct that bolsters fair and equitable subject selection. Although the proposed guidelines are tailored to the research design and protocol of concurrent trials in the COVID-19 pandemic, they may have broader relevance to single COVID-19 trials. (shrink)

__Creating Safe, Equitable, Engaging Schools_ brings together the collective wisdom of more than thirty experts from a variety of fields to show how school leaders can create communities that support the social, emotional, and academic needs of all students._ It offers an essential guide for making sense of the myriad evidence‐based frameworks, resources, and tools available to create a continuous improvement system. Chapters illustrate how leaders can leverage the power of school-based teams to assess the needs of students in (...) their school and select appropriate interventions across a wide variety of domains, including social and emotional learning, trauma, restorative practices, cultural responsiveness, and student and family engagement. Filled with recommendations gleaned from research and ongoing work in every US state and territory, _Creating Safe, Equitable, Engaging Schools_ is a critical resource for understanding and adopting evidence-based practices and making programmatic decisions to ensure the ideal conditions for learning, growth, and development. (shrink)

Xenotransplant patient selection recommendations restrict clinical trial participation to seriously ill patients for whom alternative therapies are unavailable or who will likely die while waiting for an allotransplant. Despite a scholarly consensus that this is advisable, we propose to examine this restriction. We offer three lines of criticism: (1) The risk–benefit calculation may well be unfavorable for seriously ill patients and society; (2) the guidelines conflict with criteria for equitable patient selection; and (3) the selection of seriously ill patients (...) may compromise informed consent. We conclude by highlighting how the current guidance reveals a tension between the societal values of justice and beneficence. (shrink)

Animal behaviour and welfare research are part of a wider endeavour to optimize the health and wellbeing of humans, animals and ecosystems. As such, it is part of the One Health research agenda. This article applies ethical principles described by the One Health High Level Expert Panel to animal behaviour and welfare research. These principles entail that animal behaviour and welfare research should be valued equitably alongside other research in transdisciplinary and multisectoral collaboration. It should (...) include and promote a multiplicity of marginalized voices, including those of animals, and it should apply and describe a harmonious balance between human—animal-environment interactions. Lastly, it should describe how humans need to change behaviour, adopt sustainable solutions and recognize the importance of animal welfare and the integrity of the whole ecosystem. (shrink)

Prisoners are legally categorized as a vulnerable group for the purposes of medical research, but their vulnerability is not limited to the research context. Prisoner-patients may experience lower standards of care, fewer options for treatment, violations of privacy, and the use of inappropriate surrogates as a result of their status. This case study highlights some of the ways in which a prisoner-patient’s vulnerable status impacted the care he received. The article argues the following: (1) Prisoner-patients are entitled to (...) the same quality of care as all other patients, and healthcare providers should be vigilant to ensure that the stigma of incarceration does not influence care decisions. (2) Options for treatment should reflect what is most medically appropriate in the hospital or other healthcare setting, even when not all treatments would be available in the correctional setting. (3) The presence of guards at the bedside requires that additional measures be taken to protect the privacy and confidentiality of prisoner-patients. (4) When endof-life decisions must be made for an incapacitated patient, prison physicians are not well placed to act as surrogate decision makers, which heightens the obligations of the healthcare professionals in the hospital to ensure an ethically supportable process and outcome. Therefore, healthcare professionals should provide extra protection for those prisoner-patients who do not have decision-making capacity, by utilizing a robust process for decision making such as those used for incapacitated patients without surrogates, rather than relying solely on prison physicians as surrogates. (shrink)

Research has consistently shown ‘ability’ grouping (tracking) to be prey to poor practice, and to perpetuate inequity. A feature of these problems is inequitable and inaccurate practice in allocation to groups or ‘tracks’. Yet little research has examined whether such practices might be improved. Here, we examine survey and interview findings from a large-scale intervention study of grouping practices in 126 English secondary schools. We find that when schools are encouraged to allocate students and move them between groups (...) according to equitable principles by participation in a ‘best practice’ intervention, there is some increased equity of practice (i.e. a reduction in non-attainment factors used in allocation). However, the majority of schools continue to use subjective and potentially biased information to group students. Furthermore, some schools that claim to be using attainment setting appear to be using the inequitable practice of streaming. Our findings show that improvements in equity are constrained by operational and strategic factors, including timetabling, finance, and teachers’ values and beliefs relating to student ability and progression. We suggest strategies for encouraging schools to change their grouping practices, drawing on approaches for working with complex organisations. (shrink)

International research is an essential means of reducing health disparities between and within countries and should do so as a matter of global justice. Research funders from high-income countries have an obligation of justice to support health research in low and middle-income countries that furthers such objectives. This paper investigates how their current funding schemes are designed to incentivise health systems research in LMICs that promotes health equity. Semi-structured in-depth interviews were performed with 16 grants officers (...) working for 11 funders and organisations that support health systems research: the Alliance for Health Policy and Systems Research, Comic Relief, Doris Duke Foundation, European Commission, International Development Research Centre, Norwegian Agency for Development Cooperation, Research Council of Norway, Rockefeller Foundation, UK Department of International Development, UK Medical Research Council, and Wellcome Trust. Thematic analysis of the data demonstrates their funding schemes promote health systems research with five key features that advance health equity: being conducted with worst-off populations, focusing on research topics that advance equitable health systems, having LMIC ownership of the research agenda, strengthening LMIC research capacity, and having an impact on health disparities. The different types of incentives that encouraged proposed projects to have these features are identified and classified by their strength. It is suggested that research funders ought to create and maintain funding schemes with strong incentives for the features identified above in order to more effectively help reduce global health disparities. (shrink)

Background Equitable care is a fundamental value in the nursing profession. Healthcare workers have both a moral and professional duty to ensure that they do not discriminate. Aim This study aimed to explore how patients perceive equitable nursing care. Research design, participants, and research context This descriptive phenomenological qualitative research study used purposeful sampling to select 17 patients from various departments of a general hospital in southern Iran. The participants were then interviewed using a semi-structured (...) in-depth interview format, which aimed to delve into their experiences with equitable nursing care. The collected data were analyzed using Colaizzi's seven-step method and MAXQDA20 software. Ethical considerations Oral and written information about the study was provided before the participants gave their written consent. The transcribed interviews were de-identified. The study was approved by the Ethics Committee of Jiroft University of Medical Sciences. Findings The data analysis of the study identified three main themes and six subthemes that were related to the experiences of patients with equitable nursing care. The first theme, equitable care, encompassed subthemes such as nurses’ dedicated efforts to facilitate patient recovery and adherence to ethical behavior. The second theme, unconscious causes of inequitable nursing care, included subthemes such as unintentional discrimination stemming from organizational constraints and unconscious biases resulting from a lack of knowledge and skills. The third theme, discriminatory care, comprised subthemes such as deliberate discrimination based on personal traits and selective discrimination. Conclusion The study findings indicate that achieving equitable nursing care requires a multifaceted approach. This includes effective hospital management, organizational reforms, and regulatory enhancements. Additionally, it is crucial to pay close attention to the needs of patients, enhance nurses’ theoretical and practical skills in providing equitable care, fostering a culture of equality within healthcare settings, and consider the personality dimensions and moral characteristics of nurses. (shrink)

Global supply chains often distribute value inequitably among the Global North and South. This perpetuates poverty and contributes to indecent work in raw material-producing countries, thus creating challenges to sustainable development. For decades, corporate social responsibility, social entrepreneurship, and sustainable business model innovations have aimed to distribute value more equitably across global value chains, for instance via fair trade, alternative trade, and direct trade. This article examines a novel and hitherto understudied innovation for equitable value distribution in global supply (...) chains: “value chain profit sharing.” We draw on interview and archival data from two cases of social entrepreneurs working in the coffee sector to develop a generalized model. One of the model's key features is that the entrepreneur pays suppliers in multiple installments that reflect market conditions (as opposed to a single lump sum based on prediction). We show how this can increase value creation, appropriation, and equitable distribution. Although our research suggests that this model may be highly contingent on leaders' skills, resources, sense of place, and accountability to suppliers, we find no evidence that its applications are limited to specific countries or sectors. Our research further extends extant theory by showing how “value chain profit sharing” may relieve some of the tensions often associated with sustainable business models, including distributing value to suppliers while maintaining financial solvency; creating value while pursuing a social mission; providing benefits to suppliers without curtailing their market opportunities; responding to market conditions while maintaining commitments to suppliers; and scaling without diluting benefits. It thereby contributes to the literatures on sustainable business model innovations, equitable value distribution in global supply chains, novel application of revenue-sharing contracts, and innovative methods of profit sharing. It furthermore provides actionable guidance for social entrepreneurs, corporate social responsibility practitioners, and supplier cooperatives aiming to achieve more equitable value distribution and sustainable supply chains. (shrink)

The foundations of research ethics are riven with fault lines emanating from a fear that if research is too closely connected to weighty social purposes an imperative to advance the common good through research will justify abrogating the rights and welfare of study participants. The result is an impoverished conception of the nature of research, an incomplete focus on actors who bear important moral responsibilities, and a system of ethics and oversight highly attuned to the dangers (...) of research but largely silent about threats of ineffective, inefficient, and inequitable medical practices and health systems. -/- In For the Common Good: Philosophical Foundations of Research Ethics, Alex John London defends a conception of the common good that grounds a moral imperative with two requirements. The first is to promote research that generates the information necessary to enable key social institutions to effectively, efficiently, and equitably safeguard the basic interests of individuals. The second is to ensure that research is organized as a voluntary scheme of social cooperation that respects its various contributors' moral claims to be treated as free and equal. Connecting research to the goals of a just social order grounds a framework for assessing and managing research risk that reconciles these requirements and justifies key oversight practices in non-paternalistic terms. Reconceiving research ethics as resolving coordination problems and providing credible assurance that these requirements are being met expands the issues and actors that fall within the purview of the field and provides the foundation for a more unified and coherent approach to domestic and international research. -/- This is an open access title available under the terms of a CC BY-NC-ND 4.0 license. It is free to read at Oxford Scholarship Online and offered as a free PDF download from OUP and selected open access locations. (shrink)

Gender inequity is a persistent problem in the United States. While the high school social studies classroom should be an important space for addressing gender inequity, there is significant underrepresentation of women in the curriculum. Thus, it is crucial that we understand how self-described feminist social studies teachers present women and gender-equity in their classrooms. In this mixed-methods study, the researchers examined the beliefs and practices of six feminist-identifying teachers. The results reveal commonalities across teachers related to classroom discourses, curricular (...) modifications, and professional practice, yet there were compelling differences based on whether or not the teacher subscribed to a critical feminist perspective or a liberal feminist perspective. While all the teachers in the study saw themselves as change agents, teachers who operated from a critical feminist lens focused more on structural gender inequity as a means to eliminate sexism, whereas teachers who operated from a liberal lens focused more on individual acts of sexism and greater inclusion of women—often individual women—in the curriculum. This study contributes to the scarce research on feminism in social studies and provides tools for practitioners who want practices that are more inclusive. (shrink)

Arab researchers encounter formidable obstacles when conducting and publishing their scientific work. We conducted semi-structured interviews with 17 Arab researchers from various Arab Middle East countries to gain a comprehensive understanding of the difficulties they face in research and publication. We analyzed the transcripts using reflexive thematic analysis. Our findings revealed several key challenges. First, Arab researchers struggle to conduct high-quality research due to limited resources, inadequate funding, and a lack of a supportive research infrastructure. Furthermore, a (...) shortage of teamwork and mentoring diminishes research productivity. Perverse promotion policies, heavy teaching loads, and low salaries force many researchers to seek external income sources, leaving them with insufficient time for research. Regarding publishing in high-impact journals, Arab researchers confront challenges existing of insufficient scientific writing skills, underrepresentation on editorial boards, and unconscious biases against researchers from economically challenged areas. Finally, achieving research integrity is closely tied to lack of access to essential resources. To address these issues, our participants proposed targeted interventions at the institutional and external levels. For example, universities can implement mentoring programs, offer workshops on scientific writing and publishing, and foster a supportive institutional culture for research. Addressing the underrepresentation of Arabic researchers on editorial boards is crucial for equity in global scientific publishing. In conclusion, acknowledging and addressing these challenges will empower Arab researchers, elevate research quality, and promote equitable global scientific collaboration. Our findings provide guidance for universities, governments, and international donors seeking to enhance research and publication practices in the Arab Middle East. (shrink)

ABSTRACT The expansion of health research to low and middle income countries has increased the likelihood of exploitation and undue influence in economically vulnerable populations. In behavioral research, “reasonable availability”, which was originally developed for biomedical research and advocates for the equitable provision of any product developed during the research process, cannot always prevent exploitation. In such cases and settings, the informed consent process may lack cross-cultural validity and therapeutic misconceptions may arise. This article advocates (...) for a mutual learning framework where international researchers can gain cultural competence while training and empowering local partners, increasing community ownership of health research. (shrink)

This article discusses the ways in which healthcare professionals can use emotion as part of developing an ethical response to the COVID-19 pandemic. Affect theory, a growing approach to inquiry in the social sciences and humanities that appraises the historical and cultural contexts of emotions as expressed through art and politics, offers a frame for clinicians and researchers to consider ethical questions that surround the reopening of the United States economy in the wake of COVID-19. This article uses affect theory (...) to describe how healthcare workers’ emotions are useful for formulating a reopening plan grounded in collective action and a duty to do no harm. (shrink)

This article outlines challenges to benefitting developing countries that are hosts of international research. In the context of existing guidance and frameworks for benefit‐sharing, it aims to provoke dialog about socioeconomic factors and other background conditions that influence what constitute benefits in a given host setting, and about the proportionality between benefits to hosts and benefits to sponsors and researchers. It argues that capacity‐building for critical thinking and negotiation in many developing country governments, institutions, and communities is a benefit (...) because it can help to overcome background conditions that impinge on equitable international research negotiations, partnerships, and benefits. Enhancing the capacity for both critical thinking and negotiation can, like other targets of capacity‐building, nurture respectful and trusting partnerships that benefit all stakeholders in international research. (shrink)

Racial and ethnic disparities exist for many nervous system disorders that are intervention targets for neuromodulation investigators. Yet, to date, there has been both a lack of racial and ethnic diversity and a lack of emphasis on diversity in neuromodulation research. In this paper, we suggest three potential reasons for the lack of racial and ethnic diversity in neuromodulation research: 1) the lack of diversity in the neuromodulation workforce, 2) incompatibility between the technologies employed and phenotypic traits (e.g., (...) hair texture) commonly present in minoritized populations, and 3) minoritized populations’ reluctance to participate in clinical trials. We argue that increasing diversity in the neuromodulation workforce, in conjunction with mutual collaboration between current neuromodulation researchers and underrepresented communities in neuromodulation, can aid in removing barriers to diversity, equity, and inclusion in neuromodulation research. This is important, because greater diversity, equity, and inclusion in neuromodulation research brings with it the development of novel, yet safe and effective, treatment approaches for brain disorders and enhances the rigor and generalizability of discoveries in the field. (shrink)

This book discusses 'how' to respectfully and responsibly include pregnant women in clinical research. In sharp contrast, the existing literature predominantly focuses on the reasons 'why' the inclusion of pregnant women in clinical research is necessary - viz., to develop effective treatments for women during pregnancy, to promote fetal safety, to reduce harm to women and fetuses from suboptimal care, and to allow access to the benefits of research participation. This book supports the shift to a new (...) default position, whereby pregnant women are included in clinical research unless researchers argue convincingly for their exclusion. This shift raises many as yet unexplored ethical and policy questions about existing barriers to the equitable inclusion of pregnant women in research. This book is original in three key ways. First, it presents an unparalleled depth of analysis of the ethics of research with pregnant women, bringing together many of the key authors in this field as well as experts in research ethics and in vulnerability who have not previously applied their work to pregnant women. Second, it includes innovative theoretical work in ethics and disease specific case studies that highlight the current complexity and future challenges of research involving pregnant women. Third, the book brings together authors who argue both for and against including more pregnant women in formal clinical trials. (shrink)

Open access. This open-access book discusses vulnerability and the protection-inclusion dilemma of including those who suffer from serious poverty, severe stigma, and structural violence in research. Co-written with representatives from indigenous peoples in South Africa and sex workers in Nairobi, the authors come down firmly on the side of inclusion. In the spirit of leaving no one behind in research, the team experimented with data collection methods that prioritize research participant needs over researcher needs. This involved foregoing (...) the collection of personal data and community researchers being involved in all stages of the research. In the process, the term ‘vulnerability’ was illuminated across significant language barriers as it was defined by indigenous peoples and sex workers themselves. The book describes a potential alternative to exclusion from research that moves away from traditional research methods. By ensuring that the research is led by vulnerable groups for vulnerable groups, it offers an approach that fosters trust and collaboration with benefits for the community researchers, the wider community as well as research academics. Those living in low-income settings, in dire situations that are summarized with the term ‘vulnerability’ know best what their problems are and which priorities they have. To exclude them from research for their own protection is a patronizing approach which insinuates that researchers and research ethics committees know best. The team from this book have shown that minimally risky and minimally burdensome research tailored towards the needs of highly marginalized and stigmatized communities can be scientifically valuable as well as inclusive and equitable. I congratulate them. Prof. Klaus Leisinger, President Global Values Alliance, Former personal advisor to Kofi Annan on corporate responsibility. (shrink)

The SARS-CoV-2 (COVID-19) pandemic continues to expose underlying inequities in healthcare for black, indigenous and Latinx communities in the USA. The gaps in equitable care for communities of colour transcend the diagnosis, treatment and vaccinations related to COVID-19. We are experiencing a continued gap across racial and socioeconomic lines for those who suffer prolonged effects of COVID-19, also known as ‘Long COVID-19’. What we know about the treatment for Long COVID-19 so far is that it is complex, requires a (...) multidisciplinary approach and there is still much research needed to fully understand the effects. In this paper, we discuss pragmatic considerations for including affected communities, relevant stakeholders, and leaders from communities of colour in the planning and implementation of Long COVID-19 research. (shrink)

Records the papers and commentaries, with an edited discussion, presented at an international consultation convened by the Council for International Organizations of Medical Sciences (CIOMS) to guide revision of the CIOMS International Ethical Guidelines for Biomedical Research Involving Human Subjects. The Guidelines, first issued in 1982 and then revised in 1993, are being updated and expanded to address a number of new and especially challenging ethical issues. These include issues raised by international collaborative trials of drugs in developing countries, (...) especially expensive drugs, and the use of placebo controls in randomized clinical trials. Others arise from the complexity of research in human genetics, including stem-cell research, and in reproductive biology. Throughout, particular attention is given to the difficult questions that arose during the heated debate over trials in developing countries, of short-duration zidovudine (AZT) therapy to reduce perinatal transmission of HIV. The International Ethical Guidelines for Biomedical Research Involving Human Subjects set out a code of research ethics that is widely used by ethical review committees and other bodies responsible for reviewing and overseeing the ethical design of studies and conduct of research. The revision of the Guidelines is being coordinated by CIOMS, in collaboration with WHO. The consultation centered on seven specially commissioned papers, authored by international experts that explore some of the more difficult issues in depth. Each is followed by an invited commentary, often expressing opposing views, and a summary of the issues or conclusions that emerged during the subsequent debate. The first paper, on justice in international research, deals with the question of whether proposals for research to be conducted in a developing country should make provision for future access of the population involved to the interventions under investigation. Also considered are questions that arise when research uses populations in developing countries to investigate interventions that will be of exclusive benefit to the industrialized world. Case studies of recent drug trials and their research protocols are discussed to illustrate circumstances in which use of populations in developing countries is justified or constitutes exploitation. Ethical challenges of the randomized controlled trial are considered in the second paper, which includes a discussion on the equitable distribution of benefits and risks, the use of placebo for controls, and the obligation to ensure that the participation of controls does not compromise their medical care or endanger their health. A paper on informed consent in international health research considers how cultural factors influence communication and language in the informed-consent process and respect for privacy and confidentiality in the research. Subsequent papers address issues in genetics research and reproductive biology, including the moral status of fetuses and the use of embryos in research, and examine the contribution which international human rights instruments can make in the application of the general principles of ethics to research involving human subjects. The final paper gives an overview of capacity building and the role of communities in international biomedical research. (shrink)

The Global Code of Conduct for Research in Resource-Poor Settings (GCC) aims to stop the export of unethical research practices from higher to lower income settings. Launched in 2018, the GCC was immediately adopted by European Commission funding streams for application in research that is situated in lower and lower-middle income countries. Other institutions soon followed suit. This article reports on the application of the GCC in two of the first UK-funded projects to implement this new code, (...) one situated in India and one in Pakistan. Through systematic ethics evaluation of both projects, the practical application of the GCC in real-world environments was tested. The findings of this ethics evaluation suggest that while there are challenges for implementation, application of the GCC can promote equity in international research collaborations. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Response to Lauren Kapalka Richerme, "The Diversity Bargain and the Discourse Dance of Equitable and Best," Philosophy of Music Education Review 27, no. 2 (Fall, 2019)Nasim NiknafsI was asked to write a response to Lauren Richerme's convincing research on why and how one should distinguish between "equitable educational practices"1 and what she calls following Ellen Berry the "diversity bargain" where equity as the second-best option has (...) always taken a hit from the more dashing diversity. If I may metaphorically put this conversation into a romantic comedy, equity is always the wingperson of color to diversity as the main protagonist; by the end of the show it is the main protagonist who survives the hardship and reaches salvation, be it a long-lost love, an oasis of sorts, or making it to the finish line. The rest of the cast have the function of complementing and highlighting the main actor but never substituting for it; or they are as Homi Bhabha would say, "almost the same but not quite."2 For the sake of filling in the blank of let's-add-more-color-into-it, the genuine conversation over the nuances of equitable practices gets undermined and diffused of its poignancy. And this is what Richerme is arguing against: let us not forget that a more significant challenge than a mere technicolor presence is at play. In that, my response to Richerme's essay would [End Page 215] not be so much of a response but a grand nod, a body gesture, an embedded signal of approval between two human beings born and raised in two different parts of planet earth who after years of diverse and perhaps un-equitable educational access ended up in the same room at the same time. Thus, my nod to Richerme also originated from personal experiences and intimate familiarities with unequitable educational access. Yes, people of color can be assets to their institutions and their corresponding fields who add to the diversity of knowledge creation practices, but it is not people of color's project or responsibility to act as the trophy to alleviate the unhappy conscience of educational malpractice or give a helping hand to the main protagonists for whom the scenario has already been written. Undoubtedly, they can take on that role if they want to, but it is only contingent upon where their desires lie not where they should lie.I strongly agree with Richerme's claim that music classrooms and I would add any classroom and learning environment should be a place and space for "sharing stories and insights"3 to not only learn about the content material whatever it may be but to learn to empathize with one another, understand positive and negative human behaviors toward humans and their environment, and act against discriminatory practices, racial, ethnic, religious, and gender prejudices, and to the point of Richerme's essay, unequitable practices that are insistent in today's political climate on a global scale.At this very juncture I diverge not from Richerme's fine thesis and argumentation, but from the larger issue of the premise of her arguments grounded on Thomas Green's educational framework.4 Green argues that the "rank order of political arguments that can be mustered in support of the [educational] system … [is] roughly as follows": (1) the fundamental or compelling interests of the state; (2) the aggregate of individual or parental interests; (3) societal interests; and (4) educational goods for their own sake."5 Following Green's framework Richerme analyzes contemporary music education initiatives in relation to the differing political strengths of each group of stakeholders: the state, parents, society, and educational goods for their own sake.There is a sense of mistrust in the local and national government implied by Green's framework, reminding one of the cumulative mistrust of the elite by U.S. citizens. Years of neglect, condescension, and lack of attention to the real and tangible needs of people amalgamated into what today one sees as white nationalism, plutocracy, and protectionism across borders. Green wrote his book, Predicting the Behavior of the Educational System, in 1980; historically the world order was increasingly metamorphosing and establishing itself... (shrink)

Genomics is increasingly becoming an integral component of health research and clinical care. The perceived difficulties associated with genetic research involving Aboriginal and Torres Strait Islander people mean that they have largely been excluded as research participants. This limits the applicability of research findings for Aboriginal and Torres Strait Islander patients. Emergent use of genomic technologies and personalised medicine therefore risk contributing to an increase in existing health disparities unless urgent action is taken. To allow the (...) potential benefits of genomics to be more equitably distributed, and minimise potential harms, we recommend five actions: ensure diversity of participants by implementing appropriate protocols at the study design stage; target diseases that disproportionately affect disadvantaged groups; prioritise capacity building to promote Indigenous leadership across research professions; develop resources for consenting patients or participants from different cultural and linguistic backgrounds; and integrate awareness of issues relating to Indigenous people into the governance structures, formal reviews, data collection protocols and analytical pipelines of health services and research projects. (shrink)

Individuals living with rare conditions are faced with important challenges derived from the rarity of their conditions and aggravated by the low priority given to rare disease research. However, current realities of rare disease research require consideration of the relationship between subjectivity and ‘traditional’ objectivity. Objectivity in research has traditionally been associated with processes and descriptions that are independent of the investigator. The need for researchers to provide unbiased knowledge and achieve a balance between objectivity and the (...) underlying values in nursing and scientific research requires an examination of how objectivity is conceptualized within the context of rare disease research. The aim of this paper is to examine scientific objectivity in rare disease research from a philosophical viewpoint and, in doing so, demonstrate the need to redefine it to reflect the current scientific environment. As such, healthcare providers working on this field need to redefine objectivity around ethical and moral obligation to advance science in an equitable manner with the end goal to produce knowledge that is trustworthy and beneficial to our patients. (shrink)

Research Ethics, Volume 18, Issue 1, Page 24-38, January 2022. Are social science, cross-border research projects, where recruitment and data collection are carried out remotely, required to follow similar ethical and data-sharing procedures as ‘on-the-ground’ studies that use traditional means of recruitment and participant engagement? This article reflects on our experience of dealing with this question when we had to switch to online data collection due to the restrictions posed by the COVID-19 pandemic, such as the inability to (...) travel or work in person with local communities and collaborators. Using social media platforms and online data collection when conducting research brings many advantages, such as being able to communicate remotely but directly with gatekeepers and collaborators, and in reaching potential participants on a global scale. However, neither the guidelines and advice for conducting ethically sound internet-based research, nor the academic literature focussed on building equitable research partnerships between the Global North and the Global South, offer much information regarding the ethical concerns, or address the grey areas, posed by this type of digital and distanced transnational research. In our experience, conducting research remotely made negotiations of access very challenging due to the politics of positionality between Global North and South researchers, lack of clarity on ethical processes and perceptions of gatekeepers who we could not meet in person. We hope the reflections on, and discussion of, our experience encourage deliberation on the present ethical challenges posed by online and social-media-disseminated data collection, particularly in cross-border circumstances. (shrink)

Objectives The study uses a qualitative empirical method to define Health Research for Development. This project explores the perspectives of stakeholders in an international health research partnership operating in Ghana and Tanzania. Methods We conducted 52 key informant interviews with major stakeholders in an international multicenter partnership between GlaxoSmithKline and the global health nonprofit organisation PATH and its Malaria Vaccine Initiative program,. The respondents included teams from four clinical research centres and various collaborating partners. This paper analyses (...) responses to the question: What is Health Research for Development? Results Based on the stakeholders’ experience the respondents offered many ways of defining Health Research for Development. The responses fell into four broad themes: i) Equitable Partnerships; ii) System Sustainability; iii) Addressing Local Health Targets, and iv) Regional Commitment to Benefit Sharing. Conclusion Through defining Health Research for Development six key learning points were generated from the four result themes: 1) Ensure there is local research leadership working with the collaborative partnership, and local healthcare system, to align the project agenda and activities with local research and health priorities; 2) Know the country-specific context - map the social, health, legislative and political setting; 3) Define an explicit development component and plan of action in a research project; 4) Address the barriers and opportunities to sustain system capacity. 5) Support decentralised health system decision-making to facilitate the translation pathway; 6) Govern, monitor and evaluate the development components of health research partnerships. Overall, equity and unity between partners are required to deliver health research for development. (shrink)