The issue of benefits in international clinical research is highly controversial. Against the background of wide recognition of the need to share benefits of research, the nature of benefits remains strongly contested. Little is known about the perspectives of research populations on this issue and the extent to which research ethics discourses and guidelines are salient to the expectations and aspirations existing on the ground. This exploratory study contributes to filling this void by examining perspectives of people in low-income South (...) African communities on benefits in international clinical research. Twenty-four individuals with and without experience of being involved in clinical research participated in in-depth interviews. Respondents felt that ancillary care should be provided to clinical research participants, while a clinical study conducted in particular community should bring better health to its members through post-trial benefits. Respondents' perspectives were grounded in the perception that the ultimate goal of international clinical research is to improve local health. We argue that perspectives and understandings of the respondents are shaped by local moral traditions rather than clinical research specificities and require attention as valid moral claims. It is necessary to acknowledge such claims and cultural worlds from which they emerge, thus building the foundation for equal and embracing dialogue to bridge different perspectives and handle contradicting expectations. (shrink)

Background Tuberculosis is a major cause of morbidity and mortality globally. Recent scholarly attention to public health ethics provides an opportunity to analyze several ethical issues raised by the global tuberculosis pandemic. Discussion Recently articulated frameworks for public health ethics emphasize the importance of effectiveness in the justification of public health action. This paper critically reviews the relationship between these frameworks and the published evidence of effectiveness of tuberculosis interventions, with a specific focus on the controversies engendered by the endorsement (...) of programs of service delivery that emphasize direct observation of therapy. The role of global economic inequities in perpetuating the tuberculosis pandemic is also discussed. Summary Tuberculosis is a complex but well understood disease that raises important ethical challenges for emerging frameworks in public health ethics. The exact role of effectiveness as a criterion for judging the ethics of interventions needs greater discussion and analysis. Emerging frameworks are silent about the economic conditions contributing to the global burden of illness associated with tuberculosis and this requires remediation. (shrink)

Western moral philosophy is driven by the attempt to sharply distinguish persons from the rest of the cosmos, and then to identify the ways in which persons must be treated. The traditional African approach is different on both counts.

In this article, I consider the virtual absence of an African voice and perspective in global discourses of medical research ethics against the backdrop of the high burden of diseases and epidemics on the continent and the fact that the continent is actually the scene of numerous and sundry medical research studies. I consider some reasons for this state of affairs as well as how the situation might be redressed. Using examples from the HIV/AIDS and Ebola epidemics, I attempt to (...) show that the marginalization of Africa in medical research and medical research ethics is deliberate rather than accidental. It is causally related, in general terms, to a Eurocentric hegemony derived from colonialism and colonial indoctrination cum proselytization. I end by proposing seven theses for the critical reflection and appraisal of the reader. (shrink)

Significant inequalities in health between and within countries have been measured over the past decades. Although these inequalities, as well as attempts to improve sub-standard health, raise profound issues of social justice and the right to health, those working in the field of bioethics have historically tended to devote greater attention to ethical issues raised by new, cutting-edge biotechnologies such as life-support cessation, genomics, stem cell research or face transplantation. This suggests that bioethics research and scholarship may revolve around issues (...) that, while fascinating and important, currently affect only a small minority of the world's population. In this article, we examine the accusation that bioethics is largely dominated by Anglophone and industrialized world interests, and explore what kinds of positive contributions a 'bioethics from below' (as Paul Farmer calls it) can make to the field of bioethics in general. As our guide in this exploration, we make use of some experiences and lessons learned in our collaborative bioethics project in the Democratic Republic of Congo, Building Bioethics Capacity and Justice in Health. We conclude that while there is some evidence of increased attention to bioethical challenges in developing countries, this development should be further cultivated, because it could help expand the horizons of the field and enhance its social relevance wherever it is practiced. (shrink)

This paper presents an integrated discussion of methods and ethics by drawing on participatory research with children in Ethiopia and Kenya. It examines the complex social, ethical, practical and methodological dilemmas of research with HIV-affected children, and explores how we confronted some of these dilemmas before, during and after fieldwork. The paper interrogates the role and limitations of ‘global’ ethical standards in childhood research, and the ways in which the researchers’ gender, ethnicity/race, material power, knowledge and insider-outsider position all intersect (...) to affect: (a) the level of children's involvement in the research process; (b) the generation of knowledge about the field; and (c) the negotiation of ethics in collaborative ways. We argue that doing ethical research with HIV-affected children should not be based solely on dominant and de-contextualised understandings of ethics, knowledge and social relations, but should be negotiated reflexively and through dialogue with participants, including the children, their guardians and ‘local’ community members—all with the aim of doing good and avoiding harm in the research process. (shrink)

Background: Ethics support services are growing in Europe to help doctors in dealing with ethical difficulties. Currently, insufficient attention has been focused on the experiences of doctors who have faced ethical difficulties in these countries to provide an evidence base for the development of these services.Methods: A survey instrument was adapted to explore the types of ethical dilemma faced by European doctors, how they ranked the difficulty of these dilemmas, their satisfaction with the resolution of a recent ethically difficult case (...) and the types of help they would consider useful. The questionnaire was translated and given to general internists in Norway, Switzerland, Italy and the UK.Results: Survey respondents ranged in age from 28 to 82 years, and averaged 25 years in practice. Only a minority reported having access to ethics consultation in individual cases. The ethical difficulties most often reported as being encountered were uncertain or impaired decision-making capacity , disagreement among caregivers and limitation of treatment at the end of life . The frequency of most ethical difficulties varied among countries, as did the type of issue considered most difficult. The types of help most often identified as potentially useful were professional reassurance about the decision being correct , someone capable of providing specific advice , help in weighing outcomes and clarification of the issues . Few of the types of help expected to be useful varied among countries.Conclusion: Cultural differences may indeed influence how doctors perceive ethical difficulties. The type of help needed, however, did not vary markedly. The general structure of ethics support services would not have to be radically altered to suit cultural variations among the surveyed countries. (shrink)

Research is a global enterprise requiring participation of both genders for generalizable knowledge; advancement of science and evidence based medical treatment. Participation of women in research is necessary to reduce the current bias that most empirical evidence is obtained from studies with men to inform health care and related policy interventions. Various factors are assumed to limit autonomy amongst the Yoruba women of western Nigeria. This paper seeks to explore the experience and understanding of autonomy by the Yoruba women in (...) relation to research participation. Focus is on factors that affect women's autonomous decision making in research participation. An exploratory qualitative approach comprising four focus group discussions, 42 in-depth interviews and 14 key informant interviews was used. The study permits a significant amount of triangulation, as opinions of husbands and religious leaders are also explored. Interviews and discussions were audiotaped and transcribed verbatim. Content analysis was employed for data analysis. Findings show that concepts of autonomy varied amongst the Yoruba women. Patriarchy, religion and culture are conceived to have negative impact on the autonomy of women in respect to research participation. Among the important findings are: 1) male dominance is strongly emphasized by religious leaders who should teach equality, 2) while men feel that by making decisions for women, they are protecting them, the women on the other hand see this protection as a way of limiting their autonomy. We recommend further studies to develop culturally appropriate and workable recruitment methods to increase women's participation in research. (shrink)

A woman’s lack of or limited reproductive autonomy could lead to adverse health effects, feeling of being inferior, and above all being unable to adequately care for her children. Little is known about the reproductive autonomy of married Ikwerre women of Rivers State, Nigeria. This study demonstrates how Ikwerre women understand the terms autonomy and reproductive rights and what affects the exercise of these rights. An exploratory research design was employed for this study. A semi-structured interview schedule was used to (...) conduct thirty-four in-depth interviews and six focus group discussions with purposively sampled educated, semi-educated, and uneducated Ikwerre women in monogamous or polygynous marriages. The collected data was analysed qualitatively with MAXQDA 11 using open and axial coding. The interviews and focus group responses reveal a low level of awareness of autonomy and reproductive rights amongst the Ikwerre women in Nigeria. While some educated women were aware of their reproductive rights, cultural practices were reported to limit the exercise of these rights. Participants reported that Ikwerre culture is a patriarchal one where married women are expected to submit and obey their husbands in all matters; and a good married woman according to Ikwerre standard is one who complies with this culture. Women’s refusal of sexual advances from their husbands is described as not being acceptable in this culture; and hence rape in marriage is not recognized in Ikwerre culture. Education and awareness creation on the importance of women’s reproductive autonomy could improve their reproductive rights and autonomy in marital settings. Overcoming the patriarchal aspects of Ikwerre culture—for example, the greater value placed on male children than female children and treating women as incompetent individuals—is necessary to promote gender equality as well as help improve women’s reproductive autonomy. (shrink)

There is growing interest for a communitarian approach to the governance of genomics, and for such governance to be grounded in principles of justice, equity and solidarity. However, there is a near absence of conceptual studies on how communitarian-based principles, or values, may inform, support or guide the governance of genomics research. Given that solidarity is a key principle in Ubuntu, an African communitarian ethic and theory of justice, there is emerging interest about the extent to which Ubuntu could offer (...) guidance for the governance of genomics research in Africa. To this effect, we undertook a conceptual analysis of Ubuntu with the goal of identifying principles that could inform equity-oriented governance of genomics research. Solidarity, reciprocity, open sharing, accountability, mutual trust, deliberative decision-making and inclusivity were identified as core principles that speak directly to the different macro-level ethical issues in genomics research in Africa such as: the exploitation of study populations and African researchers, equitable access and use of genomics data, benefit sharing, the possibility of genomics to widen global health inequities and the fair distribution of resources such as intellectual property and patents. We use the identified the principles to develop ethical guidance for genomics governance in Africa. (shrink)

In this article I articulate and defend an African moral theory, i.e., a basic and general principle grounding all particular duties that is informed by sub-Saharan values commonly associated with talk of "ubuntu" and cognate terms that signify personhood or humanness. The favoured interpretation of ubuntu (as of 2007) is the principle that an action is right insofar as it respects harmonious relationships, ones in which people identify with, and exhibit solidarity toward, one another. I maintain that this is the (...) most defensible moral theory with an African pedigree at the time, and that it should be developed further with an eye to rivalling dominant Western theories such as utilitarianism and Kantianism. (NB: a mildly revised version, avoiding some typos and phrases that invite misinterpretation, appeared as a chapter in Isaac Ukpokolo, ed., _Themes, Issues and Problems in African Philosophy_ London: Palgrave Macmillan, 2017, pp. 97-119.). (shrink)

This article defends an alternative account of ubuntu and makes a novel proposition about African morality and ethics. In doing so, it refutes the normative account of ubuntu premised on the aphorism umuntu ngumuntu ngabantu. According to this “greatest harmony” account, Africans are harmonic collectivists and sharers, linked together by community-defining conveyor-belts of moral and ethical goodwill “gifts.” It is assumed that an African theory of right action produces harmony and reduces discord. I aver, however, that such a prima facie (...) interpretation, notwithstanding its intuitive appeal, is still open to some rather strong doubt. (shrink)

It is nearly two decades now since the publication of Godfrey Tangwa's article, ‘Bioethics: African Perspective’, without a critical review. His article is important because sequel to its publication in Bioethics, the idea of ‘African bioethics’ started gaining some attention in the international bioethics literature. This paper breaks this relative silence by critically examining Tangwa's claim on the existence of African bioethics. Employing conceptual and critical methods, this paper argues that Tangwa's account of African bioethics has some conceptual, methodic and (...) substantive difficulties, which altogether do not justify the idea of African bioethics, at least for now. Contra Tangwa, this article establishes that while African bioethics remains a future possibility, it is more cogent that current efforts in the name of ‘African bioethics’ be primarily re-intensified towards ‘Healthcare ethics in Africa’. (shrink)

We identify the ways the policies of leading international bioethics journals limit the participation of researchers working in the resource-constrained settings of low- and middle-income countries in the development of the field of bioethics. Lack of access to essential scholarly resources makes it extremely difficult, if not impossible, for many LMIC bioethicists to learn from, meaningfully engage in, and further contribute to the global bioethics discourse. Underrepresentation of LMIC perspectives in leading journals sustains the hegemony of Western bioethics, limits the (...) presentation of diverse moral visions of life, health, and medicine, and undermines aspirations to create a truly “global” bioethics. Limited attention to this problem indicates a lack of empathy and moral imagination on the part of bioethicists in high-income countries, raises questions about the ethics of bioethics, and highlights the urgent need to find ways to remedy this social injustice. (shrink)

This paper presents a pedagogical framework for teaching cross-cultural clinical ethics. The approach, offered at the intersection of anthropology and bioethics, is innovative in that it takes on the “social sciences versus bioethics” debate that has been ongoing in North America for three decades. The argument is made that this debate is flawed on both sides and, moreover, that the application of cross-cultural thinking to clinical ethics requires using the tools of the social sciences within a principles-based framework for clinical (...) ethics. This paper introduces the curriculum and provides guidelines for how to teach cross-cultural clinical ethics. The learning points that are introduced emphasize culture in its relation to power and underscore the importance of viewing both biomedicine and bioethics as culturally constructed. (shrink)

A trend called ‘African bioethics’ is growing on the continent due to perceptions of existing bioethics, especially guidelines for international collaborative research, as ‘ethical imperialism’. As a potential alternative to ‘Western Principlism,’ ‘African bioethics’ is supposed to be indigenous to Africa and reflective of African identity. However, despite many positive insights in the on-going discussions, it is feared that the growth of bioethics in Africa lacks a clear direction. Some of the views threaten to distort the essence of bioethics and (...) its development on the continent. This paper presents some of the dominant views on ‘African bioethics’, an examination of which reveals some valuable insights into the direction bioethics in Africa ought to take, but at the same time confirms some methodological challenges in some contributions to the discussion. On top of acknowledging critical insights in the discussion, the paper reveals that some views are characterized by arbitrariness and rhetorical discussions based on a strong negative and yet hard-to-accept assumption; doubtful designation; lack of a clearer problem being addressed and consequently obscure question and aim of the discourse. Finally, some methodological insights are proposed to guide bioethics research and scholarship in Africa. Specifically, the paper proposes that in search for the legitimacy of bioethics in Africa, we ought to protect the essence of bioethics by giving considerable attention to the utility of subsequent bioethics. To achieve this we need to specify the problem and proper designation for the discourse; focus on principles qua principles with impartiality and how to ensure their strict implementation; and encourage critical thinking as part of bioethics. In cultivating bioethics in Africa, the pursuit of identity is legitimate but must be conditional in light of other competing considerations. We should focus on an objective search for bioethical principles that can be effective in responding to African and global health challenges of moral significance, irrespective of the origin of the principles and at the same time focus more on strategies for ensuring compliance with resulting principles. (shrink)

Bioethics has now become a burgeoning interdisciplinary field of scholarly investigation which has in the past decades migrated from bedside consultations to public policy debates and wider cultural and social consultations that privilege all discourse about everyday life issues. It has made exponential progress in addressing moral issues in science, technology and medicine in the world. In spite of this progress, core bioethics issues, approaches and values are still exclusively Western dominated and largely foreign to most African societies. Although medical (...) ethics has existed since the time of Hippocrates, in Africa, there is a noted sluggish growth and low prestige of ethics education as bioethics is not taught in most higher educational systems of learning, low understanding of its processes as researchers manifest a general lack of appreciation for bioethics and general ignorance characterize those involved in research about ethical practices. This is unfortunate, considering that various research that aim at finding solutions to the multiple problems affecting African societies and the need to address and assess these problems in ethical terms are of crucial importance to Africans. In this work, I argue that Africa lacks human, institutional, infrastructural capacities and a real African authenticity in bioethics. Additionally, African views on bioethics are neither sufficiently developed nor heard. Africans need to confront these current challenges of bioethics to their lives and communities and to develop African conceptions to incorporate African specificities and approaches. (shrink)

A communitarian perspective, which is characteristic of African normative thought, accords some kind of primacy to society or a group, whereas human rights are by definition duties that others have to treat individuals in certain ways, even when not doing so would be better for others. Is there any place for human rights in an Afro-communitarian political and legal philosophy, and, if so, what is it? I seek to answer these questions, in part by critically exploring one of the most (...) influential theoretical works on human rights in a sub-Saharan setting, namely, Claude Ake’s ‘The African Context of Human Rights’. Ake famously maintains that a typically Western approach to rights is inappropriate in the sub-Saharan region, in two major respects. First, Ake contends that although a human rights legal framework might be suitable for an ‘individualistic’ society, it is not for one of the sort common among traditional black peoples, for whom group rights are alone apt. Second, Ake maintains that, insofar as rights are relevant, rights to socio-economic goods are of much more importance in an African context than rights to civil liberties, due process and the like. Using Ake’s article as a foil, I draw on values salient in sub-Saharan moral worldviews to construct a unified philosophy of rights that not only provides reason to doubt his two claims, but also offers a promising way to reconcile a communitarian framework with a robust prizing of human rights alongside ones that are more collectively oriented. In short, I aim to provide a principled foundation for the core elements of the African Charter of Human and Peoples’ Rights. (shrink)