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

Although the world has experienced remarkable progress in health care since the last half of the 20th century, global health inequalities still persist. In some poor countries life expectancy is between 37-40 years lower than in rich countries; furthermore, maternal and infant mortality is high and there is lack of access to basic preventive and life-saving medicines, as well a high prevalence of neglected diseases, HIV/AIDS, tuberculosis, and malaria. Moreover, globalization has made the world more connected than before such that (...) health challenges today are no longer limited within national or regional boundaries, making all persons equally vulnerable. Because of this, diseases in the most affluent countries are closely connected with diseases in the poorest countries. In this paper, we argue that, because of global health inequalities, in a situation of equal vulnerability, there is need for global solidarity not only as a means of reducing health inequalities, but also as a way of putting up a united force against global health challenges. We argue for an African approach to solidarity in which the humanity of a person is not determined by his/her being human or rational capacity, but by his/her capacity to live a virtuous life. According to this view of solidarity, because no one is self-sufficient, no individual can survive alone. If we are to collectively flourish in a world where no individual, nation or region has all the health resources or protection needed for survival, we must engage in solidarity where we remain compassionate and available to one another at all times. (shrink)

This paper, which is based on an extensive analysis of the literature, gives a brief overview of the main ways in which solidarity has been employed in bioethical writings in the last two decades. As the vagueness of the term has been one of the main targets of critique, we propose a new approach to defining solidarity, identifying it primarily as a practice enacted at the interpersonal, communal, and contractual/legal levels. Our three-tier model of solidarity can also help to explain (...) the way in which crises of solidarity can occur, notably when formal solidaristic arrangements continue to exist despite ‘lower tiers’ of solidarity practices at inter-personal and communal levels having ‘broken away’. We hope that this contribution to the growing debate on the potential for the value of solidarity to help tackle issues in bioethics and beyond, will stimulate further discussion involving both conceptual and empirically informed perspectives. (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)

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)

International health research in malaria-endemic settings may include screening for sickle cell disease, given the relationship between this important genetic condition and resistance to malaria, generating questions about whether and how findings should be disclosed. The literature on disclosing genetic findings in the context of research highlights the role of community consultation in understanding and balancing ethically important issues from participants’ perspectives, including social forms of benefit and harm, and the influence of access to care. To inform research practice locally, (...) and contribute to policy more widely, this study aimed to explore the views of local residents in Kilifi County in coastal Kenya on how researchers should manage study-generated information on sickle cell disease and carrier status. (shrink)

BackgroundCommunity engagement in research has gained momentum as an approach to improving research, to helping ensure that community concerns are taken into account, and to informing ethical decision-making when research is conducted in contexts of vulnerability. However, guidelines and scholarship regarding community engagement are arguably unsettled, making it difficult to implement and evaluate.DiscussionWe describe normative guidelines on community engagement that have been offered by national and international bodies in the context of HIV-related research, which set the stage for similar work (...) in other health related research. Next, we review the scholarly literature regarding community engagement, outlining the diverse ethical goals ascribed to it. We then discuss practical guidelines that have been issued regarding community engagement. There is a lack of consensus regarding the ethical goals and approaches for community engagement, and an associated lack of indicators and metrics for evaluating success in achieving stated goals. To address these gaps we outline a framework for developing indicators for evaluating the contribution of community engagement to ethical goals in health research.SummaryThere is a critical need to enhance efforts in evaluating community engagement to ensure that the work on the ground reflects the intentions expressed in the guidelines, and to investigate the contribution of specific community engagement practices for making research responsive to community needs and concerns. Evaluation mechanisms should be built into community engagement practices to guide best practices in community engagement and their replication across diverse health research settings. (shrink)

: The debate over when medical research may be performed in developing countries has steered clear of the broad issues of social justice in favor of what seem more tractable, practical issues. A better approach will reframe the question of justice in international research in a way that makes explicit the links between medical research, the social determinants of health, and global justice.

The debate over when medical research may be performed in developing countries has steered clear of the broad issues of social justice in favor of what seem more tractable, practical issues. A better approach will reframe the question of justice in international research in a way that makes explicit the links between medical research, the social determinants of health, and global justice.

Biomedical research is increasingly globalized with ever more research conducted in low and middle-income countries. This trend raises a host of ethical concerns and critiques. While community engagement has been proposed as an ethically important practice for global biomedical research, there is no agreement about what these practices contribute to the ethics of research, or when they are needed.

There is wide agreement that community engagement is important for many research types and settings, often including interaction with ‘representatives’ of communities. There is relatively little published experience of community engagement in international research settings, with available information focusing on Community Advisory Boards or Groups (CAB/CAGs), or variants of these, where CAB/G members often advise researchers on behalf of the communities they represent. In this paper we describe a network of community members (‘KEMRI Community Representatives’, or ‘KCRs’) linked to a (...) large multi-disciplinary research programme on the Kenyan Coast. Unlike many CAB/Gs, the intention with the KCR network has evolved to be for members to represent the geographical areas in which a diverse range of health studies are conducted through being typical of those communities. We draw on routine reports, self-administered questionnaires and interviews to: 1) document how typical KCR members are of the local communities in terms of basic characteristics, and 2) explore KCR's perceptions of their roles, and of the benefits and challenges of undertaking these roles. We conclude that this evolving network is a potentially valuable way of strengthening interactions between a research institution and a local geographic community, through contributing to meeting intrinsic ethical values such as showing respect, and instrumental values such as improving consent processes. However, there are numerous challenges involved. Other ways of interacting with members of local communities, including community leaders, and the most vulnerable groups least likely to be vocal in representative groups, have always been, and remain, essential. (shrink)

Many working in bioethics today are engaging in forms of normative interpretation concerning the meaningful contexts of relational agency and institutional structures of power. Using the framework of relational bioethics, this article focuses on two significant social practices that are significant for health policy and public health: the practices of solidarity and the practices of care. The main argument is that the affirming recognition of, and caring attention paid to, persons as moral subjects can politically motivate a society in three (...) respects. The recognition of solidarity and the attention of care can prompt progressive change toward a democratic willingness: (a) to provide for equal respect for rights and dignity; (b) to provide the social resources and services needed for just health and well‐being; and (c) to focus its creativity and wealth on the actualization of potential flourishing of each and all. Solidarity is discussed as a morally developmental stance that moves from standing up for another, standing up with another, and standing up as another. Care is discussed as a morally developmental stance that moves from the attentive rehabilitation of another, attentive companionship with and for another, and attentive commitment to another. (shrink)

How important is the concept of solidarity in our society's calculus of consent as regards the legitimacy and ethical and political support for public health, health policy, and health services? By the term “calculus of consent,” we refer to the answer that people give to rationalize and justify their obedience to laws, rules, and policies that benefit others. The calculus of consent answers questions such as, Why should I care? Why should I help? Why should I contribute to the public (...) provision of others? Consent here does not have to be a deliberate, explicit act of informed agreement. And a calculus does not have to be a quantifiable, quasimathematical operation; more often, such a calculus takes narrative form in stories that a society tells about itself and that individuals tell about their place in it. One vital function of bioethics is to inform and shape those stories. Bioethics has the potential to offer society a keener insight into and perception of what is ethically at stake in controversies concerning health, science, and society. This insight is what we shall refer to as a “moral imagination,” by which we do not mean make-believe or fantasy but, rather, the capacity to take a critical distance from the given, to think reality otherwise. The moral imagination enables one to see connections between factors at work in history, in large social and communal structures, and in the shape of one's own life, thoughts, and feelings. Here we are especially concerned with the contribution that the concept of solidarity can make to the moral imagination of bioethics. We contend that solidarity must become more widely active and explicit in bioethics analysis and argumentation as it endeavors to shape reasons for obeying norms and rules of common benefit in an open, diverse society. (shrink)

Public health involves the use of power to change institutions and redistribute resources and deliberately to shape individual thought and behavior. This requires normative legitimation and demands ethical critique. This article explores concepts that are vital to public health ethics, but have been relatively neglected. These are membership, solidarity and the concept of place. The article argues that the practice of public health should recognize the equal rights of membership in communities of health justice. Public health should also rely on (...) a sense of obligation and mutual aid in a world of shared vulnerability and reciprocal recognition. Finally, public health achieves its goals not merely—and perhaps not most fundamentally—through information and altering the logical ratiocination of individuals or groups, but rather through the reformation of sense and sensibility. (shrink)

The most widely debated conception of democracy in recent years is deliberative democracy--the idea that citizens or their representatives owe each other mutually acceptable reasons for the laws they enact. Two prominent voices in the ongoing discussion are Amy Gutmann and Dennis Thompson. In Why Deliberative Democracy?, they move the debate forward beyond their influential book, Democracy and Disagreement.What exactly is deliberative democracy? Why is it more defensible than its rivals? By offering clear answers to these timely questions, Gutmann and (...) Thompson illuminate the theory and practice of justifying public policies in contemporary democracies. They not only develop their theory of deliberative democracy in new directions but also apply it to new practical problems. They discuss bioethics, health care, truth commissions, educational policy, and decisions to declare war. In "What Deliberative Democracy Means," which opens this collection of essays, they provide the most accessible exposition of deliberative democracy to date. They show how deliberative democracy should play an important role even in the debates about military intervention abroad.Why Deliberative Democracy? contributes to our understanding of how democratic citizens and their representatives can make justifiable decisions for their society in the face of the fundamental disagreements that are inevitable in diverse societies. Gutmann and Thompson provide a balanced and fair-minded approach that will benefit anyone intent on giving reason and reciprocity a more prominent place in politics than power and special interests. (shrink)

The concept of solidarity has recently come to prominence in the healthcare literature, addressing the motivation for taking seriously the shared vulnerabilities and medical needs of compatriots and for acting to help them meet these needs. In a recent book, Prainsack and Buyx take solidarity as a commitment to bear costs to assist others regarded as similar, with implications for governing health databases, personalized medicine, and organ donation. More broadly, solidarity has been understood normatively to call for ‘standing with’ or (...) assisting fellow community members and possibly also distant others in regard to their needs, whether for its own sake or in order to realize the demands of justice. I argue here that the understanding of solidarity in the existing bioethics literature is unduly restricted by not sufficiently theorizing the notion of structural (or systemic) injustice and its import for understanding solidarity. Extending traditional conceptions of labor and social movement solidarity, I contrast unitary solidarity within a given group with ‘networking solidarities’ across groups. I analyze the meaning of structural injustice and its significance for solidarity, including countering institutionally entrenched inequalities and economic exploitation. I then apply this broadened conception to healthcare, discussing structural problems with the U.S. insurance system and the solidarity movements addressing its deficiencies. I analyze some natural disasters and global health challenges that were aggravated by structural injustices, along with the solidarity movements they engendered. Finally, I revisit the questions of governing health databases and of personalized medicine with the enlarged conception of solidarity in view. (shrink)

Accounts of solidarity typically defend it in teleological or loyalty terms, justifying it by invoking its goal of promoting justice or its expression of support for a shared community. Such solidarity seems to be a moral option rather than an obligation. In contrast, A Moral Theory of Solidarity develops a deontological theory grounded in equity. With extended reflection on the Spanish conquest of the Americas and the US Civil Rights movement, Kolers defines solidarity as political action on others' terms. Unlike (...) mere alliances and coalitions, solidarity involves a disposition to defer to others' judgment about the best course of action. Such deference overrides individual conscience. Yet such deference is dangerous; a core challenge is then to determine when deference becomes appropriate.Kolers defends defernce to those who suffer gravest inequity. Such deference constitutes equitable treatment, in three senses: it is Kantian equity, expressing each person's equal status; it is Aristotelian equity, correcting general rules for particular cases; and deference is 'being an equitable person,' sharing others' fate rather than seizing advantages that they are denied. Treating others equitably is a perfect duty; hence solidarity with victims of inequity is a perfect duty. Further, since equity is valuable in itself, irrespective of any other goal it might promote, such solidarity is intrinsically valuable, not merely instrumentally valuable. Solidarity is then not about promoting justice, but about treating people justly. A Moral Theory of Solidarity engages carefully with recent work on equity in the Kantian and Aristotelian traditions, as well as the demandingness of moral duties, collective action, and unjust benefits, and is a major contribution to a field of growing interest. (shrink)

How can we confront the problems of diminished democracy, pervasive economic inequality, and persistent global poverty? Is it possible to fulfill the dual aims of deepening democratic participation and achieving economic justice, not only locally but also globally? Carol C. Gould proposes an integrative and interactive approach to the core values of democracy, justice, and human rights, looking beyond traditional politics to the social conditions that would enable us to realize these aims. Her innovative philosophical framework sheds new light on (...) social movements across borders, the prospects for empathy and solidarity with distant others, and the problem of gender inequalities in diverse cultures, and also considers new ways in which democratic deliberation can be enhanced by online networking and extended to the institutions of global governance. Her book will be of great interest to scholars and upper-level students of political philosophy, global justice, social and political science, and gender studies. (shrink)

This latest work from one of the world's leading political philosophers will appeal to audiences from a variety of fields, including philosophy, political science, women's studies, ethnic studies, sociology, and communications studies.

A new emphasis on diversity and difference is displacing older myths of nation or community. A new attention to gender, race, language or religion is disrupting earlier preoccupations with class. But the welcome extended to heterogeneity can bring with it a disturbing fragmentation and closure. Can we develop a vision of democracy through difference: a politics that neither denies group identities nor capitulates to them? In this volume, Anne Phillips develops the feminist challenge to exclusionary versions of democracy, citizenship and (...) equality. Relating this to the crisis in socialist theory, the growing unease with the pretensions of Enlightenment rationality, and the recent recuperation of liberal democracy as the only viable politics, she builds on debates within feminism to address general questions of difference. When democracies try to wish away group difference and inequality, they fail to meet their egalitarian promise. When yearnings towards an undifferentiated unity become the basis for radical politics and change, too many groups drop out of the picture. Through her critical discussions of recent feminist and socialist theory Anne Phillips rejects this democracy of denial. She also warns, however, of the dangers on the other side. The simpler celebrations of diversity risk freezing group differences as they are, encouraging a patchwork of local identities from which people can speak only to themselves. Her arguments then combine in a powerful restatement of the case for a more active and participatory democracy. It is only through enhanced communication and discussion that people can respect and learn from their differences. (shrink)