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)

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)

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)

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)

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)

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)

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)

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)

This article investigates whether or not theories of justice from political philosophy, first, support the position that health research should contribute to justice in global health, and second, provide guidance about what is owed by international clinical research (ICR) actors to parties in low- and middle-income countries. Four theories—John Rawls's theory of justice, the rights-based cosmopolitan theories of Thomas Pogge and Henry Shue, and Jennifer Ruger's health capability paradigm—are evaluated. The article shows that three of the four theories require the (...) conduct of health research for justice in global health. The theories help identify the ends of justice to which ICR is to contribute, but they cannot tell us how to organize ICR to promote these ends. Aside from Ruger's health capability paradigm, the theories also lack an allocative principle for assigning specific duties to specific actors. This creates difficulties for establishing obligations for certain types of ICR actors. (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)

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)

Undertaking engagement in public health research is ethically essential. There is a growing emphasis on practicing engagement as the co‐construction of knowledge, which goes beyond other common forms of engagement in health research practice: consulting and informing. Taking such an approach means researchers jointly construct knowledge with research users and beneficiaries; all parties design and conduct research together and share decision‐making power. This article makes the normative argument that such engagement is necessary to achieve the foundational moral aims of public (...) health research—building relations of equality and addressing the health needs of those considered disadvantaged—which reflect the field's underlying commitment to social justice. It next identifies and discusses three ways in which co‐constructing knowledge advances those moral aims: by facilitating self‐determination, supporting individuals’ right to research, and maximizing social knowledge to address cognitive and epistemic injustice. Objections to the arguments presented in the article are then articulated and defended against. (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)

Recent scholarship has considered what, if anything, rich people owe to poor people to achieve justice in global health and the implications of this for international research. Yet this work has primarily focused on international clinical research. Health systems research is increasingly being performed in low and middle income countries and is essential to reducing global health disparities. This paper provides an initial description of the ethical issues related to priority setting, capacity-building, and the provision of post-study benefits that arise (...) during the conduct of such research. It presents a selection of issues discussed in the health systems research literature and argues that they constitute ethical concerns based on their being inconsistent with a particular theory of global justice (the health capability paradigm). Issues identified include the fact that priority setting for health systems research at the global level is often not driven by national priorities and that capacity-building efforts frequently utilize one-size-fits-all approaches. (shrink)

In order to fulfill ABET requirements, Northern Arizona University’s Civil and Environmental engineering programs incorporate professional ethics in several of its engineering courses. This paper discusses an ethics module in a 3rd year engineering design course that focuses on the design process and technical writing. Engineering students early in their student careers generally possess good black/white critical thinking skills on technical issues. Engineering design is the first time students are exposed to “grey” or multiple possible solution technical problems. To identify (...) and solve these problems, the engineering design process is used. Ethical problems are also “grey” problems and present similar challenges to students. Students need a practical tool for solving these ethical problems. The step-wise engineering design process was used as a model to demonstrate a similar process for ethical situations. The ethical decision making process of Martin and Schinzinger was adapted for parallelism to the design process and presented to students as a step-wise technique for identification of the pertinent ethical issues, relevant moral theories, possible outcomes and a final decision. Students had greatest difficulty identifying the broader, global issues presented in an ethical situation, but by the end of the module, were better able to not only identify the broader issues, but also to more comprehensively assess specific issues, generate solutions and a desired response to the issue. (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)

Thus far, little work in bioethics has specifically focused on global health research priority-setting. Yet features of global health research priority-setting raise ethical considerations and concerns related to health justice. For example, such processes are often exclusively disease-driven, meaning they rely heavily on burden of disease considerations. They, therefore, tend to undervalue non-biomedical research topics, which have been identified as essential to helping reduce health disparities. In recognition of these ethical concerns and the limited scholarship and dialogue addressing them, we (...) convened an international workshop in September 2015. The workshop aimed to initiate discussion on the appropriate relationship between global and national levels of health research priority-setting and to begin exploring what might be ethically required for priority-setting at each of those levels. This paper comprises our reflections following the workshop. Its main objective is to launch a research agenda for the ethics of global health research priority-setting. We identify three domains of global health research priority-setting—scope, underlying values and substantive requirements, and procedural considerations. For each domain, specific research questions are highlighted and why they need to be explored is explained. Some preliminary thoughts and normative arguments as to how the research questions might be answered are also offered. For example, we provide initial ideas about the appropriate relationship between different priority-setting levels and what values and substantive considerations should guide or underpin global health research priority-setting as a matter of justice. We anticipate that framing a new research agenda for the ethics of global health research priority-setting will spur ethicists, researchers, and policymakers to refocus their efforts on developing more rigorous and ethically sound approaches to priority-setting. (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)

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)

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)

Engaging citizens is vital to achieving people‐centred health research. This paper aims to put attention to dynamics of power and dynamics of difference back at the centre of citizen engagement in health research priority‐setting. Without attention to power and difference, engagement can lead to presence without voice and voice without influence, particularly for disadvantaged and marginalised groups. By analysing six key bodies of literature, the paper first identifies the different components of engagement—who initiates, for what purpose, who participates, and how (...) they participate—and the dynamics of power and dynamics of difference relevant to them. For each component of engagement, the ethical considerations relating to those dimensions of power and dimensions of difference are characterised for the research priority‐setting context and preliminary guidance on how they might be addressed is provided. An initial framework comprised of a series of questions reflecting these ethical considerations has been developed for use by researchers and citizens when designing engagement processes for research projects. Where researchers and citizens attend to the framework's questions and then revise their priority‐setting processes’ design to better represent diversity and mitigate power disparities, more inclusive citizen engagement is promoted. Disadvantaged and marginalised groups are more likely to be present and heard, which, in turn, will help generate research projects with topics and questions that encompass and more accurately reflect their health needs. (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)

Bioethicists have long debated the content of sponsors and researchers' obligations of justice in international clinical research. However, there has been little empirical investigation as to whether and how obligations of responsiveness, ancillary care, post-trial benefits and research capacity strengthening are upheld in low- and middle-income country settings. In this paper, the authors argue that research ethics guidelines need to be more informed by international research practice. Practical guidance on how to fulfil these obligations is needed if research groups and (...) other actors are to successfully translate them into practice because doing so is often a complicated, context-specific process. Case study research methods offer one avenue for collecting data to develop this guidance. The authors describe how such methods have been used in relation to the Shoklo Malaria Research Unit's vivax malaria treatment (VHX) trial (NCT01074905). Relying on the VHX trial example, the paper shows how information can be gathered from not only international clinical researchers but also trial participants, community advisory board members and research funder representatives in order to: (1) measure evidence of responsiveness, provision of ancillary care, access to post-trial benefits and research capacity strengthening in international clinical research; and (2) identify the contextual factors and roles and responsibilities that were instrumental in the fulfilment of these ethical obligations. Such empirical work is necessary to inform the articulation of obligations of justice in international research and to develop guidance on how to fulfil them in order to facilitate better adherence to guidelines' requirements. (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)

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)

The rapid development and roll-out of COVID-19 vaccines has been a surprising success of the pandemic and has likely saved hundreds of thousands of lives. Although most people were eager to receive a vaccine, many jurisdictions introduced mandates to ensure rapid uptake in the population, especially among key workers including healthcare workers. In some instances, individuals who can prove they have recovered from COVID-19 have been exempt from vaccine mandates, but in other cases such exemptions have not been made. Pugh (...) et al argue that such exemptions for those already immune ought to be included in COVID-19 vaccine mandates.1 They review the evidence on infection-induced and vaccine-induced immunity and show that that there is not evidence that vaccines offer better protection against severe COVID-19 or of SARS-CoV-2 infection. They argue that to treat people differently based on the source of their COVID-19 immunity is wrongful discrimination, with this discrimination bringing harms in the form of unjust restriction of liberty and negative consequences such as lost employment. I agree with Pugh et al ’s view that, given the available evidence, infection-induced immunity to SARS-CoV-2 ought to be treated as equivalent to vaccine-induced immunity for the purposes of most COVID-19 vaccine mandates. However, their article highlights the need for clarity in the rationale for mandates. This clarity is necessary to be able to identify when exemptions are appropriate. It may be the case that in some instances infection-induced immunity ought not to be grounds for exemption. Pugh et al ’s argument also suggests that collection of data on infection-induced immunity may be a requirement for ethical vaccine mandates. To be confident in such exemptions, we need evidence that infection-induced immunity is comparable to vaccine-induced immunity in the …. (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)

The American Journal of Bioethics, Volume 11, Issue 12, Page 48-50, December 2011.

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)

We are in the midst of a crisis of climate change and environmental degradation that will only get worse, unless significant changes are rapidly made. Globally, the healthcare sector causes a large share of our total environmental footprint: 4.4% of greenhouse gases. Sustainable healthcare has emerged as a way for healthcare sectors in high‐income countries to help mitigate climate change by reducing their emissions. Whether global health should be sustainable and what ethical grounds might exist to support such a claim (...) are not questions that have been investigated. The paper argues that global health practice—the delivery of health services to underserved populations in resource‐poor areas of the world—should be sustainable as a matter of climate justice and solidarity. Reducing climate change‐related risks and harms for the vulnerable is integral to the mission of global health and thus it is necessary to consider the climate impact of its practice. The field has a duty to provide sustainable health services that are responsive to climate change‐related changes in the local burden of disease and to build sustainable health system infrastructure. Specific responsibilities for global health funders, managers, and implementers to uphold the duty are proposed. To conclude, the paper considers what limits might be placed on the duty to deliver sustainable global healthcare. (shrink)

Engagement in health research is increasingly practised worldwide. Yet many questions remain under debate in the ethics field about its contribution to health research and these debates have largely not been informed by those who have been engaged in health research. This paper addresses the following key questions: what should the ethical goals of engagement in health research be and how should it be performed? Qualitative data were generated by interviewing 22 people with lived experience, members of the public, and (...) engagement managers about power sharing in health research. Thematic analysis of study data identified the following five themes: the value of engagement in research, ideal engagement, tokenistic engagement, terms to describe those engaged, and engagement roles in research. The paper presents that data and then considers what insights it offers for what engagement should look like—its ethical goals and approach—according to those being engaged. (shrink)

In many countries around the world, people who inject drugs remain at high risk of HIV acquisition not because effective forms of prevention are unknown, nor because they find effective prevention undesirable, but because those in charge, mainly politicians but also bureaucrats, find evidence-based practice politically unacceptable. The evidence for preventive efficacy of harm reduction strategies, most prominently needle and syringe programmes but also treatment programmes such as opiate substitution, is irrefutable.1 However, political responses to drug use issues are varied (...) and complex, so the will to implement appropriate harm reduction programmes in the interests of public health remains lacking in too many jurisdictions. As a consequence, the discussion of how best, in the context of research, to reduce HIV incidence in populations of people who inject drugs but are not offered comprehensive access to known prevention strategies is—tragically—an important one. Dawson et al 2 focus on access to sterile injecting equipment and recognise that this should remain the ‘default’ standard of prevention for HIV prevention trials involving people for whom injecting drug use is the primary risk factor for HIV acquisition. ‘Standard of prevention’ means the background or minimal HIV risk reduction interventions offered to all participants in a trial, regardless of what other investigational interventions they are assigned to receive. The standard of prevention concept is grounded in the ethical principle of beneficence—that researchers and sponsors are obliged to maximise benefits and minimise risks to participants in research studies.3 …. (shrink)

Research from cognitive science and geoscience education has shown that sketching can improve spatial thinking skills and facilitate solving spatially complex problems. Yet sketching is rarely implemented in introductory geosciences courses, due to time needed to grade sketches and lack of materials that incorporate cognitive science research. Here, we report a design-centered, collaborative effort, between geoscientists, cognitive scientists, and artificial intelligence researchers, to characterize spatial learning challenges in geoscience and to design sketch activities that use a sketch-understanding program, CogSketch. We (...) developed 26 CogSketch worksheets that use cognitive science–based principles to scaffold problem solving of spatially complex geoscience problems and report observations of an implementation in an introductory geoscience course where students used CogSketch or human-graded paper worksheets. Overall, this research highlights the principles of interdisciplinary design between cognitive scientists, geoscientists, and AI researchers that can inform the collaborative design process for others aiming to develop effective educational materials. (shrink)

In clinical research there is a tension between the role of a doctor, who must serve the best interests of the patient, and the role of the researcher, who must produce knowledge that may not have any immediate benefits for the research participant. This tension is exacerbated in HIV research in low and middle income countries, which frequently uncovers comorbidities other than the condition under study. Some bioethicists argue that as the goals of medicine and those of research are distinct, (...) it is a mistake for researchers to assume therapeutic responsibilities while engaging in research. Others propose that there is a duty of care, but disagree as to how this is limited and specified. In this qualitative study, principal investigators from HIV prevention trials discuss their experience of providing medical benefits to participants within the context of conducting research into HIV biomedical prevention technologies. They describe the limitations imposed at times by funders and at times by infrastructure constraints, and canvass the importance of ancillary care provision and capacity building in trial communities. The views of the principal investigators are compatible with the perspective that there is a duty of care, limited by the nature of the research, the depth of the relationship between research and participant, and the capacity of the research site. The therapeutic orientation in HIV prevention trial appears to be indivisible from competent research practise by making concrete and appropriate benefits available to trial participants and their communities that support rather than compete with local infrastructure. (shrink)

BackgroundEngagement of people with lived experience and members of the public is an ethically and scientifically essential component of health research. Authentic engagement means they are involved as full partners in research projects. Yet engagement as partnership is uncommon in practice, especially during priority-setting for research projects. What is needed for agenda-setting to be shared by researchers and people with lived experience and/or members of the public (or organisations representing them)? At present, little ethical guidance exists on this matter, particularly (...) that which has been informed by the perspectives of people with lived experience and members of the public. This article provides initial evidence about what they think are essential foundations and barriers to shared decision-making in health research priority-setting and health research more broadly.MethodsAn exploratory, qualitative study was conducted in 2019. 22 semi-structured interviews were performed with key informants from the UK and Australia.ResultsThree main types of foundations were thought to be essential to have in place before shared decision-making can occur in health research priority-setting: relational, environmental, and personal. Collectively, the three types of foundations addressed many (but not all) of the barriers to power sharing identified by interviewees.ConclusionsBased on study findings, suggestions are made for what researchers, engagement practitioners, research institutions, and funders should do in their policy and practice to support meaningful engagement. Finally, key international research ethics guidelines on community engagement are considered in light of study findings. (shrink)

One of the most prominent strands in contemporary work on the virtues consists in the attempt to develop a distinctive—and compelling—account of practical reason on the basis of Aristotle’s ethics. In response to this project, several eminent critics have argued that the Aristotelian account encourages a dismissive attitude toward moral disagreement. Given the importance of developing a mature response to disagreement, the criticism is devastating if true. I examine this line of criticism closely, first elucidating the features of the Aristotelian (...) account that motivate it, and then identifying two further features of the account that the criticism overlooks. These further features show the criticism to be entirely unwarranted. Once these features are acknowledged, a more promising line of criticism suggests itself—namely, that the Aristotelian account does too little to help us to resolve disputes—but that line of objection will have to be carried out on quite different grounds. (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)

Health research has been identified as a vehicle for advancing global justice in health. However, in bioethics, issues of global justice are mainly discussed within an ongoing debate on the conditions under which international clinical research is permissible. As a result, current ethical guidance predominantly links one type of international research (biomedical) to advancing one aspect of health equity (access to new treatments). International guidelines largely fail to connect international research to promoting broader aspects of health equity – namely, healthier (...) social environments and stronger health systems. Bioethical frameworks such as the human development approach do consider how international clinical research is connected to the social determinants of health but, again, do so to address the question of when international clinical research is permissible. It is suggested that the narrow focus of this debate is shaped by high-income countries' economic strategies. The article further argues that the debate's focus obscures a stronger imperative to consider how other types of international research might advance justice in global health. Bioethics should consider the need for non-clinical health research and its contribution to advancing global justice. (shrink)