Both autistic adults and families of autistic children rely heavily on blogs and other digital platforms to create community and gain experiential knowledge about autism, but research on autism blogs has failed to distinguish between the perspectives of autistic adults and neurotypical parent bloggers. Furthermore, intersections in the experiences of BIPOC autistics are rarely examined. Using a content analysis with a feminist Critical Disability Studies lens, I explore six autism parent blogs from diverse demographics: a white neurotypical father, a white (...) autistic mother in an interracial relationship, a white neurotypical mother, an Indigenous autistic trans father, a Black autistic nonbinary mother, and a Black neurotypical mother. I examine the attitudes of these bloggers to get a sampling of their opinions on autism, how they parent autistic children, and how their social location, specifically race, impacts their experiences. More intersectional research needs to be done to boost the perspectives of BIPOC autistics and the expertise of autistic parents. (shrink)

This article challenges what is now the orthodoxy concerning the heritage of Bourdieu (1930–2002): namely, the judgement that his distinctive sociological innovation has been his theory of social reproduction, and that he has failed to provide a necessary theory of social change. Yet Bourdieu consistently claimed to offer a theory of social transformation as well as accounting for continuities of power. Indeed, he provides two substantive keys for an understanding of historical transformation—first, a theory of prophets (religious or secular) as (...) the authors of heresies or “symbolic revolutions” that dispel current doxa; second, a theory of the “corporatism of the universal”: the role of intellectuals or other educated professionals in pursuit of social justice and other universalistic goals. Moreover, Bourdieu fuses his theories of “symbolic revolutions” with a materialist analysis of their social preconditions, including a fresh account of social crises. Crises—war, famine, recession, and especially the intensified precarity of the educated—have, for him, a profound impact, both within differentiated fields and across fields. Conflicts that become effectivelysynchronizedacross fields acquire great resonance within the wider field of power, particularly due to hysteresis or “maladjusted habitus.” Indeed, the appearance of crises, together with new prophetic heresies, leads the subordinate classes to question the taken-for-granted order of things and to orchestrate their resistance. Alongside his corpus of published writings, this article draws widely on Bourdieu’s posthumously published lectures. These cast a distinctive new light on how his well-known conceptual instruments can aid us in the study of historical change. They also expand on how social science itself might be used to facilitate progressive social movements. (shrink)

We are in the midst of a global crisis of climate change and environmental degradation to which the healthcare sector directly contributes. Yet conceptions of health justice have little to say about the environment. They purport societies should ensure adequate health for their populations but fail to require doing so in ways that avoid environmental harm or injustice. We need to expand our understanding of health justice to consider the environment and do so without reinforcing the epistemic injustice inherent in (...) the field of bioethics. This paper considers what work in philosophy related to the environment should be applied to help build that understanding and develops ideas about the healthcare sector’s responsibilities of justice to the environment. It first introduces the dominant multivalent environmental and ecological justice (EJ) concept in philosophy and each of its dimensions: distribution, participation, recognition and well-being. It then shows why applying that conception alone to broaden our understanding of health justice will reinforce epistemic injustice within bioethics. Drawing on EJ literature from the global South, the paper demonstrates that different ontological and experiential starting points identify additional EJ dimensions—power and harmony—and give rise to a nuanced understanding of the recognition dimension relative to the dominant EJ conception. The paper concludes by applying them to articulate healthcare sector responsibilities of justice to the environment, demonstrating they ground responsibilities beyond reducing its carbon emissions. (shrink)

With evidence of vaccine hesitancy in several jurisdictions, the option of making COVID-19 vaccination mandatory requires consideration. In this paper I argue that it would be ethical to make the COVID-19 vaccination mandatory for older people who are at highest risk of severe disease, but if this were to occur, and while there is limited knowledge of the disease and vaccines, there are not likely to be sufficient grounds to mandate vaccination for those at lower risk. Mandating vaccination for those (...) at high risk of severe disease is justified on the basis of the harm principle, as there is evidence that this would remove the grave public health threat of COVID-19. The risk–benefit profile of vaccination is also more clearly in the interests of those at highest risk, so mandatory vaccination entails a less severe cost to them. Therefore, a selective mandate would create fairness in the distribution of risks. The level of coercion imposed by a mandate would need to be proportionate, and it is likely that multiple approaches will be needed to increase vaccine uptake. However, a selective mandate for COVID-19 vaccines is likely to be an ethical choice and should be considered by policy-makers. (shrink)

This article considers whether there is a specific demand for migrant domestic workers in the UK, or for workers with particular characteristics that in theory could be met by citizens. It discusses how immigration status can make it easier not only to recruit domestic workers, but also to retain them. `Foreignness' may also make the management of the employment relation easier with employers anxious to discover a coincidence of interest with the worker. Employers are not only looking for generic `foreignness' (...) however, but typically also seek particular nationalities or ethnicities of worker, which can raise difficulties for agencies who are not allowed to discriminate on the basis of `race'. (shrink)

Community engagement is gaining prominence in global health research. So far, a philosophical rationale for why researchers should perform community engagement during such research has not been provided by ethics scholars. Its absence means that conducting community engagement is still often viewed as no more than a ‘good idea’ or ‘good practice’ rather than ethically required. In this article, we argue that shared health governance can establish grounds for requiring the engagement of low‐ and middle‐income country (LMIC) community members in (...) global health research, where such research aims to help reduce health disparities. This philosophical basis has important implications for the ethical goals ascribed to engagement and the approach adopted to undertake it. We suggest the ethical goals of engagement in equity‐oriented global health research should include: (a) generating research topics and questions that reflect the key problems disadvantaged groups face in accessing healthcare, services and broader social determinants of health and (b) promoting the translation of research findings into policy and practice in ways that benefit the health of disadvantaged groups. We propose engagement practice should have the following features: deliberation with LMIC community members to make a range of project decisions, beginning with setting research topics and questions; inclusion of members of disadvantaged groups and those with the power to change policy and practice to benefit them; and purposeful structuring of deliberations to minimize the impact of power disparities between LMIC community members. Finally, we reflect on how these features differ from those typical of much current community engagement practice in LMICs. (shrink)

Nuestro interés radica en hacer un examen, básicamente teórico, de las condiciones en las que tanto os operadores como los estudiosos del Derecho -en cuanto es este parte de nuestra realidad o forma de vida actual- tienen acceso a él (el Derecho), tanto para utilizarlo efectivamente en sus prácticas -cual sucede con los operadores-, como para comprenderlo, bien con una finalidad puramente teórica o con el propósito de sentar bases sólidas para su uso -que es lo que, de una y (...) otra parte, parecen llevar a cabo teóricos y doctrinantes, respectivamente. Con base en una diferenciación que intentaremos mostrar más adelante, el derecho puede ser considerado una parte -importantísima, por cierto- de nuestra realidad y, como tal, un factor casi indispensable de la forma de vida a la que hemos llegado los hombres desde hace tiempo. En esta última condición, buena parte del uso que hacemos del derecho resulta de procesos que han arraigado tan profundamente en dichas formas ie vida que bien puede afirmarse que buena parte de cuienes lo usamos no tiene una clara consciencia de en qué consiste ese aspecto de nuestra realidad o ce nuestras prácticas y, por supuesto, muchísimo menos de cuáles son las razones últimas que justifican hoy su existencia y su necesidad. (shrink)

El orden social -- Derecho y moral -- La justicia -- La eticidad -- La justicia en la perspectiva de la ética.

This book presents scientific research in psychology and education and identifies effective teaching practices that address the emotional, psychological, and social needs of children. This book is written for teachers, administrators, and those interested in giving children stimulating and nurturing environments that foster life-long learning.

This book brings together research on the topic of causation from experts in the fields of linguistics, philosophy, and psychology. It draws on data from a wide range of languages and seeks to arrive at a more sophisticated understanding of how causal concepts are expressed in causal meanings, and how those meanings are organized into structures.

I mention this story also as the best method I can advise any person to take in such a case, especially if he be one that makes conscience of his duty, and would be directed what to do in it, namely, that he should keep his eye upon the particular providences which occur at that time, and look upon them complexly, as they regard one another, and as all together regard the question before him: and then, I think, he may (...) safely take them for intimations from Heaven of what is his unquestioned duty to do in such a case; I mean as to going away from or staying in the place where we dwell, when visited with an infectious distemper.Daniel Defoe's fictional narrator H.F. introduces his account of the 1665 plague with the... (shrink)

Muchas y disímiles explicaciones se han propuesto para dar cuenta de lo que parece ser un fenómeno evidente en nuestro ámbito Cultural latinoamericano: la ausencia de la Filosofía. Algunas concepciones simplemente aseguran la inexistencia y, aun, la imposibilidad de una forma de "pensamiento filosófico" en esta parte del mundo cultural, mientras que otras afirman la imposibilidad de hablar de compartimientos geográficos en un "hacer" que se pretende, por definición, de carácter universal.

Anglicanism's relationship with its Reformation heritage represents a tension. It looks to the Reformation as the movement from which an English Church, independent of papal authority, was inaugurated. At the same time, it refuses to be labelled as a “church of the Reformation”, pointing to its continuity with a much longer history of Christian practice in Britain. The growth of the Anglican Communion and current controversies over church order, the interpretation of scripture and the exercise of authority make Anglican identity (...) difficult to define. Identity would once have been sought in liturgy, but the view that liturgy completely enshrines Anglican doctrine has been convincingly put to rest by scholarship since the 1970s. This paper argues that the liturgical legacy of the Reformation offers categories that can help to form possible approaches to the current crisis of Anglican identity. (shrink)

Funders (located primarily in high‐income countries) and high‐income country researchers have historically dominated decision‐making within global health research collaborations: from setting agendas and research design to determining how data are collected and analysed and what happens with findings and outputs. The ethical principle of shared decision‐making has been proposed as a way to help address these imbalances within collaborations and to reduce semicolonial and exploitative forms of global health research. It is important to be clear about what shared decision‐making means (...) in order to ensure that it is not done in a tokenistic, shallow way. Thus far, the principle’s content has not been examined and articulated in detail. This paper aims to start the process of delineating a concept of fair shared decision‐making as a minimum standard for global health research. Using two hypothetical case examples, the paper will demonstrate that global health research practice is often inconsistent with ideal shared decision‐making. In such instances, it can be difficult to decide whether shared decision‐making within collaborations is fair. The paper describes how the two cases do not meet criteria for unfair or non‐ideal shared decision‐making, despite having potentially morally troubling features. The nuances of these examples of research practice help to generate clearer ideas about how to judge fairness in shared decision‐making. The paper concludes by presenting ideas about when soft power can be fairly employed between high‐income‐country and low‐ and middle‐income‐country partners and what fair compromise agreements may look like in shared decision‐making. (shrink)

The principle of providing post-trial access for research participants to successful products of that research is widely accepted and has been enshrined in various declarations and guidelines. While recent ethical guidelines recognise that the responsibility to provide post-trial access extends to sponsors, regulators and government bodies as well as to researchers, it is the researchers who have the direct duty of care to participants. Researchers may thus need to act as advocates for trial participants, especially where government bodies, sponsors, and (...) regulatory bodies have complex interests vested in decisions about whether or not new interventions are made available, how, and to whom. This paper provides an empirical account of post-trial access in the context of HIV prevention research. It describes both access to the successful products of research and the provision antiretroviral drugs for trial participants who acquire HIV. First, we provide evidence that, in the current system, there is considerable variation in the duration and timeliness of access. We then argue that by analysing the difficulties faced by researchers to this point, and their efforts to meet this obligation, much can be learned about how to secure post-trial access in HIV biomedical preventions trials. While researchers alone have a limited obligation, their advocacy on behalf of trial participants may be necessary to call the other parties to account. (shrink)

ABSTRACT Abduction as a method for sociological explanation is increasingly gaining interest, but questions remain as to what exactly it is and how it differs from other methods of inquiry. This paper compares abduction as conceived in Peircean pragmatism with the critical realist concept of retroduction. I argue that abduction in the Peircean sense and retroduction in the critical realist sense refer to different, but complementary, modes of inference. Abductive conclusions provide the starting point for retroductive inferences; the latter inform (...) the tenability of the former. Together, abduction and retroduction contribute to theoretical explanation. (shrink)

This article examines the relationship between bioethics and the therapeutic standards in HIV prevention research in the developing world, focusing on the closure of the pre-exposure prophylaxis (PrEP) trials in the early 2000s. I situate the PrEP trials in the historical context of the vertical transmission debates of the 1990s, where there was protracted debate over the use of placebos despite the existence of a proven intervention. I then discuss the dramatic improvement in the clinical management of HIV and the (...) treatment access movement, and consider how these contexts have influenced research practice. I argue that as HIV prevention trials oblige researchers to observe the rate at which vulnerable people under their care acquire HIV, there is an obligation to provide antiretroviral treatment to seroconverters and other health care benefits that fall within the scope of researchers' entrustment, both to avoid exploitation and to enact reciprocal justice. I argue against propositions that the obligations to provide specific benefits are vague, fall only upon researchers and sponsors, and create injustices by privileging the few over the many. Finally, I contend that the realisation of a broader standard of care in HIV prevention research broadens the role of research from being a simple tool to produce knowledge to a complex intervention that can play a part in the reduction of health disparities. (shrink)

The silencing of the epistemologies, theories, principles, values, concepts and experiences of the global South constitutes a particularly egregious epistemic injustice in bioethics. Our shared responsibility to rectify that injustice should be at the top of the ethics agenda. That it is not, or only is in part, is deeply problematic and endangers the credibility of the entire field. As a first step towards reorienting the field, this paper offers a comprehensive account of epistemic justice for global health ethics. We (...) first introduce several different conceptions of justice and decolonisation in relation to knowledge, purposefully drawing on work emanating from the global South as well as the global North. We then apply those conceptions to the global health ethics context to generate a tripartite account of the layers of epistemic justice in the field: who is producing ethics knowledge; what theories and concepts are being applied to produce ethics knowledge; and whose voices are sought, recorded and used to generate ethics knowledge. These layers reflect that the field spans conceptual and empirical research. We conclude by proposing that, going forward, three avenues are key to achieve greater epistemic justice at each layer and to help decolonise global health ethics: namely, understanding the problem, dialogue and structural change. (shrink)

It has been suggested that community advisory boards can play a role in minimising exploitation in international research. To get a better idea of what this requires and whether it might be achievable, the paper first describes core elements that we suggest must be in place for a CAB to reduce the potential for exploitation. The paper then examines a CAB established by the Shoklo Malaria Research Unit under conditions common in resource-poor settings – namely, where individuals join with a (...) very limited understanding of disease and medical research and where an existing organisational structure is not relied upon to serve as the CAB. Using the Tak Province Border Community Ethics Advisory Board as a case study, we assess the extent to which it might be able to take on a role minimising exploitation were it to decide to do so. We investigate whether, after two years in operation, T-CAB is capable of assessing clinical trials for exploitative features and addressing those found to have them. The findings show that, although T-CAB members have gained knowledge and developed capacities that are foundational for one-day taking on a role to reduce exploitation, their ability to critically evaluate studies for the presence of exploitative elements has not yet been strongly demonstrated. In light of this example, we argue that CABs may not be able to perform such a role for a number of years after initial formation, making it an unsuitable responsibility for many short-term CABs. (shrink)

Scholarship focusing on how international research can contribute to justice in global health has primarily explored requirements for the conduct of clinical trials. Yet health systems research in low- and middle-income countries has increasingly been identified as vital to the reduction of health disparities between and within countries. This paper expands an existing ethical framework based on the health capability paradigm – research for health justice – to externally-funded health systems research in LMICs. It argues that a specific form of (...) health systems research in LMICs is required if the enterprise is to advance global health equity. “Research for health justice” requirements for priority setting, research capacity strengthening, and post-study benefits in health systems research are derived in light of the field's distinctive characteristics. Specific obligations are established for external research actors, including governments, funders, sponsors, and investigators. How these framework requirements differ from those for international clinical research is discussed. (shrink)

This article undertakes a critical analysis of the work of Gisèle Sapiro, with reference to sociology of literature. From 1999 (Sapiro, 2014a), Sapiro has developed the Bourdieusian research tradition, amplifying especially Bourdieu’s theory of crisis. Focusing on the antagonisms between literary “prophets” and “priests”, she has drawn on a rich sample of 184 writers to elucidate the struggles inherent in World War II between writers from different field positions and literary habitus. Further, her historical analyses of the ethical commitments of (...) nineteenth century writers via a fresh microsociology of literary trials (Sapiro, 2011) has reminded us of the importance of popular poets in articulating the suffering of the subordinate classes. Her most recent book (Sapiro, 2018) has expanded on her earlier themes, whilst identifying the recuperation of certain 1930s’ fascist worldviews within contemporary literature. This article notes that there is a telling divergence between Bourdieu and Sapiro on the issue of interests behind disinterestedness, exemplified in the case of Zola. On this issue, Sapiro’s reading (Sapiro, 2011) is found convincing. Finally, the dialectic of avant-garde consecration and routinisation is questioned as a universal structure. It is suggested that certain avant-garde – the Harlem Renaissance, for example – did not undergo swift consecration or routinisation, although this contention deserves greater research. The paper concludes by showing that Sapiro’s conception of writers’ responsibility owes its origins less to Sartre than to the Durkheimian/ Bourdieusian notion of the expertise of the “specific intellectual”. It welcomes Sapiro’s concern for literature as a potential force for social change. (shrink)

Global health research partnerships are increasingly taking the form of consortia of institutions from high-income countries and low- and middle-income countries that undertake programs of research. These partnerships differ from collaborations that carry out single projects in the multiplicity of their goals, scope of their activities, and nature of their management. Although such consortia typically aim to reduce health disparities between and within countries, what is required for them to do so has not been clearly defined. This article takes a (...) conceptual approach to explore how the governance of transnational global health research consortia should be structured to advance health equity. To do so, it applies an account called shared health governance to derive procedural and substantive guidance. A checklist based on this guidance is proposed to assist research consortia determine where their governance practices strongly promote equity and where they may fall short. (shrink)

How international research might contribute to justice in global health has not been substantively addressed by bioethics. Theories of justice from political philosophy establish obligations for parties from high‐income countries owed to parties from low and middle‐income countries. We have developed a new framework that is based on Jennifer Ruger's health capability paradigm to strengthen the link between international clinical research and justice in global health. The ‘research for health justice’ framework provides direction on three aspects of international clinical research: (...) the research target, research capacity strengthening, and post‐trial benefits. It identifies the obligations of justice owed by national governments, research funders, research sponsors, and investigators to trial participants and host communities. These obligations vary from those currently articulated in international research ethics guidelines. Ethical requirements of a different kind are needed if international clinical research is to advance global health equity. (shrink)

Vaccination is a highly effective public health strategy that provides protection to both individuals and communities from a range of infectious diseases. Governments monitor vaccination rates carefully, as widespread use of a vaccine within a population is required to extend protection to the general population through “herd immunity,” which is important for protecting infants who are not yet fully vaccinated and others who are unable to undergo vaccination for medical or other reasons. Australia is unique in employing financial incentives to (...) increase vaccination uptake, mainly in the form of various childcare payments and tax benefits linked to timely, age-appropriate vaccination. Despite relatively high compliance with the childhood vaccination schedule, however, the Australian government has determined that rates should be higher and has recently introduced policy that includes removing certain tax and childcare benefits for non-vaccinators and formally disallowing conscientious objection to vaccination. In addition, it has raised the possibility of banning unvaccinated children from childcare centres. This article examines the impact of coercive approaches to childhood vaccination and raises the question of the ethical justification of health policy initiatives based on coercion. We consider the current evidence regarding childhood vaccination in Australia, the small but real risks associated with vaccination, the ethical requirement for consent for medical procedures, and the potential social harms of targeting non-vaccinators. We conclude that the evidence does not support a move to an increasingly mandatory approach that could only be delivered through paternalistic, coercive clinical practices. (shrink)

We propose an account of dynamic predicates which draws on the notion of force, eliminating reference to events in the linguistic semantics. We treat dynamic predicates as predicates of forces, represented as functions from an initial situation to a final situation that occurs ceteris paribus, that is, if nothing external intervenes. The possibility that opposing forces might intervene to prevent the transition to a given final situation leads us to a novel analysis of non-culminating accomplishment predicates in a variety of (...) languages, including the English progressive. We then apply the force-theoretic framework to the composition of basic Vendlerian eventuality types within a lexical-decomposition syntax. The difference between predicates of forces and predicates of situations is argued to underlie the dynamic/stative contrast, and also to allow for a formal treatment of the difference between be and stay. Consequences for the relationship between language and cognition are discussed. (shrink)

Published data show that new HIV prevention strategies including treatment-as-prevention and pre-exposure prophylaxis (PrEP) using oral antiretroviral drugs (ARVs) are highly, but not completely, effective if regimens are taken as directed. Consequently, their implementation may challenge norms around HIV prevention. Specific concerns include the potential for ARV-based prevention to reframe responsibility, erode beneficial sexual norms and waste resources. This paper explores what rights claims uninfected people can make for access to ARVs for prevention, and whether moral claims justify the provision (...) of ARV therapy to those who do not yet clinically require treatment as a way of reducing HIV transmission risk. An ethical analysis was conducted of the two strategies, PrEP and treatment-as-prevention, using a public health stewardship model developed by the Nuffield Bioethics Council to consider and compare the application of PrEP and treatment-as-prevention strategies. We found that treating the person with HIV rather than the uninfected person offers advantages in settings where there are limited opportunities to access care. A treatment-as-prevention strategy that places all the emphasis upon the positive person's adherence however carries a disproportionate burden of responsibility. PrEP remains an important option for receptive partners who face increased biological vulnerability. We conclude that the use of ARV for prevention is ethically justified, despite imperfect global to drugs for those in clinical need. The determination of which ARV-based HIV prevention strategy is ethically preferable is complex and must take into account both public health and interpersonal considerations. (shrink)

Many nonhuman animals produce facial expressions which sometimes bear clear resemblance to the facial expressions seen in humans. An understanding of this evolutionary continuity between species, and how this relates to social and ecological variables, can help elucidate the meaning, function, and evolution of facial expression. This aim, however, requires researchers to overcome the theoretical and methodological differences in how human and nonhuman facial expressions are approached. Here, we review the literature relating to nonhuman facial expressions and suggest future directions (...) that could facilitate a better understanding of facial expression within an evolutionary context. (shrink)

In 2010, randomized controlled trials (RCTs) of two different biomedical strategies to prevent HIV infection had positive findings. However, despite ongoing very high levels of HIV infection in some countries and population groups, it has been made clear by regulatory authorities that the evidence remains insufficient to support either product being made available outside of research contexts in the developing world for at least two years. In addition, prevention trials in endemic areas will continue to test new interventions against placebo. (...) But the judgments of evidentiary standards are never value-neutral. Using the recent trials and their contexts as case studies, we examine the basis for these decisions, which will potentially delay access to scientific innovation to the people who are most urgently in need of it. (shrink)

Although history has been one of the main disciplines through which we can understand gender, the paucity of data written or recorded by women makes it more difficult for the historian to research women's lives in the past. In the Caribbean, this task has been made easier by the discovery of a few key sources which allow an insight into the private sphere of Caribbean women's lives. These records of women who have lived in the Caribbean since the 1800s consist (...) of memoirs, diaries and letters. The autobiographical writings include the extraordinary record of Mary Prince, a Bermuda-born enslaved African woman. Other sources which have been examined are the diaries of women who were members of the élite in the society, and educated women who worked either in professions or through the church to assist others in their societies. Through her examination of the testimonies of these women, the author reveals aspects of childhood, motherhood, marriage and sexual abuses which different women – free and unfree, white, black or coloured – experienced. The glimpses allow us to see Caribbean women who have lived with and challenged the definitions of femininity allowed them in the past. It demonstrates that the distinctions created between women's private and public lives were as artificial then as they are at present. (shrink)

Drawing on accounts from interviews with white women, this article explores the production of narratives of the self. It suggests that the story produced of the self is not inevitable and may revolve around notions of sameness and difference that, in turn, depend on the positionality of individuals in terms of normative discourses of `race', class and gender. Sally can be seen to be reciting the process of subjection in the way she creates herself as the subject of a narrative, (...) using tropes of difference and sameness to explain who she is and who she is not. However, for the others, the norms and conventions of lifestory do not conform with their experiences of subjection. This is because, in the case of Madeleine, she does not experience an easily retold sense of herself, while Deborah appears to want to present herself as so inevitable and conforming to dominant norms that there is no story to tell. (shrink)

The first serious academic study of obituaries, this book focuses on how societies remember.

Universities and research funders’ growing emphasis on community partnerships, engagement and outreach has seen a rise in collaborations between university researchers and staff of community organisations (COs) on research projects. What ethical issues and concerns are experienced as part of these collaborations has largely not been described,particularly from the perspective of COs. As part of a recent, broader qualitative study, several concerns arising during health research collaborations between COs and university researchers were captured during thematic analysis. The concerns were described (...) in semistructured interviews by four staff of three COs that work with marginalised groups (ie, migrants and refugees, women who experience domestic violence, indigenous populations) in a high-income country. In this paper, the three concerns are taken as the starting point for ethical analysis. Interview data are first used to illustrate the three concerns: being restricted to a recruitment role in studies, reinforcement of stereotypes of marginalised groups and weakening CO-community relationships. The paper then explores why the concerns are morally troubling and demonstrates how each concern generates feelings of disrespect, creates harm(s), and/or reflects or reinforces unfairness or injustice. It concludes by proposing three ethical criteria for CO-researcher partnerships: fair division of labour, balancing CO advocacy goals with research goals and balancing CO service goals with research goals. Where researchers and COs discuss how to meet these criteria at the start and during research collaborations, it can potentially help mitigate or prevent the occurrence of the concerns described in this paper. (shrink)

BackgroundCommunities’ engagement in priority-setting is a key means for setting research topics and questions of relevance and benefit to them. However, without attention to dynamics of power and diversity, their engagement can be tokenistic. So far, there remains limited ethical guidance on how to share power with communities, particularly those considered disadvantaged and marginalised, in global health research priority-setting. This paper generates a comprehensive, empirically-based “ethical toolkit” to provide such guidance, further strengthening a previously proposed checklist version of the toolkit. (...) The toolkit places community engagement and power-sharing at the heart of priority-setting for global health research projects.MethodsA two part method was used to generate a revised toolkit. Part one was conceptual, consisting of novel analysis of empirical data (previously collected as part of the same overall project) to identify additional concepts relevant to power-sharing between researchers and communities in global health research priority-setting. Part two was empirical, seeking feedback on the initial checklist version of the toolkit in interviews with researchers, ethicists, community engagement practitioners, and community organisation staff.ResultsThe conceptual process identified two additional components of engagement and six additional features that affect who defines, who participates, and who is heard in research priority-setting. New ethical considerations related to sharing power in global health research priority-setting are articulated in relation to those components and features. Interviewees provided suggestions for revising the toolkit’s content and language. The implications of these suggestions and the analytic process for the toolkit are described.ConclusionsThe resultant toolkit is a reflective project planning aid for researchers and their community partners to employ before priority-setting is undertaken for global health research projects. It consists of three worksheets (to be completed collectively) and a companion document detailing how to use them. It is more comprehensive than the initial toolkit, as worksheet questions for discussion cover all phases of priority-setting. (shrink)

Health systems research is widely identified as an indispensable means to achieve the goal of health equity between and within countries. Numerous health systems research consortia comprised of institutions from high-income countries and low and middle-income countries are currently undertaking programs of research in LMICs. These partnerships differ from collaborations that carry out single projects in the multiplicity of their goals, scope of their activities, and nature of their management. Recent conceptual work has explored what features might be necessary for (...) health systems research consortia and their research programs to promote health equity. Identified features include selecting research priorities that focus on improving access to high-quality health services and/or financial protection for disadvantaged populations in LMICs and conducting research capacity strengthening that promotes the independent conduct of health systems research in LMICs. Yet, there has been no attempt to investigate whether existing consortia have such characteristics. This paper describes the results of a survey undertaken with health systems research consortia leaders worldwide to assess how consistent current practice is with the proposed ethical guidance. The findings suggest that consortia may be fairly well organised to promote health equity, but have scope for improvement, particularly in terms of achieving inclusive priority-setting. (shrink)

In this paper I attempt a new reading of the passage found in 1 Timothy 2.8-15, to try to show how it might be read by women today. The difficulties of reading such patriarchal texts from the canon of biblical literature are not trivialized or overlooked, and are addressed by a selective survey of how this passage has been read in different contexts through the history of interpretation. The resulting reading neither removes this problematic material from the canon, nor denies (...) the oppressive uses it has been put to in keeping women out of positions of power in various church communities. (shrink)

The successful demonstration that antiretroviral (ARV) drugs can be used in diverse ways to reduce HIV acquisition or transmission risks – either taken as pre-exposure prophylaxis (PrEP) by those who are uninfected or as early treatment for prevention (T4P) by those living with HIV – expands the armamentarium of existing HIV prevention tools. These findings have implications for the design of future HIV prevention research trials. With the advent of multiple effective HIV prevention tools, discussions about the ethics and the (...) feasibility of future HIV prevention trial designs have intensified. This article outlines arguments concerning the inclusion of newly established ARV-based HIV prevention interventions as standard of prevention in HIV prevention trials from multiple perspectives. Ultimately, there is a clear need to incorporate stakeholders in a robust discussion to determine the appropriate trial design for each study population. (shrink)

Debates about justice in international clinical research problematically conflate two quite different forms of obligation. International research ethics guidelines were intended to describe how to conduct biomedical research in a just manner at the micro or clinical level (within the researcher-participant interaction) but have come to include requirements that are clearly intended to promote justice at the global level. Ethicists have also made a variety of claims regarding what international research should contribute to global justice. This paper argues that the (...) conflation of debates about justice at the micro and macro-levels has not only resulted in the placement of obligations upon the wrong actors but has also served to exclude relevant actors from the ethical picture. Suggestions for who should properly bear macro-level obligations of justice in international clinical research are offered. The paper further contends that, unlike researchers who violate informed consent requirements, no similar type of accountability exists for obligations of global justice, even for those obligation-bearers (incorrectly) identified by current ethics guidelines. (shrink)

Community engagement (CE) is gaining prominence in global health research. A number of ethical goals–spanning the instrumental, intrinsic, and transformative–have been ascribed to CE in global health research. This paper draws attention to an additional transformative value that CE is not typically linked to but that seems very relevant: solidarity. Both are concerned with building relationships and connecting parties that are distant from one another. This paper first argues that furthering solidarity should be recognized as another ethical goal for CE (...) in global health research. It contends that, over time, CE can build the bases of solidaristic relationships—moral imagination, recognition, understanding, empathy—between researchers and community members. Applying concepts from existing accounts of solidarity, the paper develops preliminary ideas about who should be engaged and how to advance solidarity. The proposed approach is compared to current CE practice in global health research. Finally, the paper briefly considers how solidaristic CE could affect how global health research is performed. (shrink)

Much of the research that has been carried out on occupational health and safety involves studies of regulatory practices. OHS studies linearly maintain that early legislations were of minimal consequence. Implementation is a two-tier structure—policy-making and enforcement. This article considers the main themes and findings of this body of research. It is structured around a “natural history” approach to understanding law. This approach regards law as a process which starts with the recognition of a problem demanding legal intervention and the (...) subsequent enactment of legislation. Several jurisdictions additionally encourage workers to join the enforcement procedure. Law being intrinsic to OHS, enforcement emerges as the key to explain its impact, while evidence suggests the role of sanctions on it. The article highlights areas that remain relatively uncharted and those that warrant more research. (shrink)

In response to calls to expand the scope of research ethics to address justice in global health, recent scholarship has sought to clarify how external research actors from high-income countries might discharge their obligation to reduce health disparities between and within countries. An ethical framework—‘research for health justice’—was derived from a theory of justice (the health capability paradigm) and specifies how international clinical research might contribute to improved health and research capacity in host communities. This paper examines whether and how (...) external funders, sponsors, and researchers can fulfill their obligations under the framework. (shrink)