The issue of the protection of communities in clinical research first arose 10 years ago in studies conducted in technologically developing countries by scientists from technologically developed nations. The question was, which ethical standards ought to apply, those of the Western investigators or local standards?

I reflect on the past, present, and future of the field of bioethics. In so doing, I offer a very situated overview of where bioethics has been, where it now is, where it seems to be going, where I think we could do better, and where I dearly hope the field will be heading. I also propose three ways of re‐orienting our theoretic tools to guide us in a new direction: (1) adopt an ethics of responsibility; (2) explore the responsibilities (...) of various kinds of actors and relationships among them; (3) expand the types of participants engaged in bioethics. (shrink)

An article by Warren Reich in the December 1994 issue of this journal concludes that the word "bioethics" and the field of study it names experienced a "bilocated birth" in 1970/1971 under Van Rensselaer Potter, at the University of Wisconsin, and André Hellegers, at Georgetown University. Further historical inquiry confirms (1) that there were, from the start, some major differences—even clashes—between the Potter and the Hellegers/Georgetown understandings of bioethics; and (2) that the Hellegers/Georgetown approach came to be the more widely (...) accepted meaning of the term, while Potter's idea of bioethics remained largely marginalized. However, this inquiry also results in a third, unanticipated, conclusion: that Hellegers (in contrast to the dominant model offered by the Georgetown scholars) actually proposed a global approach to bioethics, bringing his vision much closer to Potter's evolving view than previously has been acknowledged. (shrink)

In a prior issue of Developing World Bioethics, Cheryl Macpherson and Ruth Macklin critically engaged with an article of mine, where I articulated a moral theory grounded on indigenous values salient in the sub-Saharan region, and then applied it to four major issues in bioethics, comparing and contrasting its implications with those of the dominant Western moral theories, utilitarianism and Kantianism. In response to my essay, Macpherson and Macklin have posed questions about: whether philosophical justifications are something with which bioethicists (...) ought to be concerned; why something counts as ‘African’; how medicine is a moral enterprise; whether an individual right to informed consent is consistent with sub-Saharan values; and when thought experiments help to establish firm conclusions about moral status. These are important issues for the field, and I use this reply to take discussion of them a step or two farther, defending my initial article from Macpherson's and Macklin's critical questions and objections. (shrink)

I explore the possible meanings that the notion of the common morality can have in a contemporary communitarian approach to ethics and public policy. The common morality can be defined as the conditions for shared pursuit of the good or as the values, deliberations, traditions, and common construction of the narrative of a people. The former sense sees the common morality as the universal and invariant structures of morality while the second sense is much more contingent in nature. Nevertheless, the (...) communitarian sees both aspects as integral in devising solutions to public policy problems. I outline how both meanings follow from communitarian philosophical anthropology and illustrate how they work together when addressing a question such as that of providing universal health insurance in the United States. The common morality forms the basis of building an implicit consensus that is available to and reaffirmed by the shared reflections of the citizenry. (shrink)

Background There has been debate on whether a global or unified field of bioethics exists. If bioethics is a unified global field, or at the very least a closely shared way of thinking, then we should expect bioethicists to behave the same way in their academic activities anywhere in the world. This paper investigates whether there is a 'global bioethics' in the sense of a unified academic community. Methods To address this question, we study the web-linking patterns of bioethics institutions, (...) the citation patterns of bioethics papers and the buying patterns of bioethics books. Results All three analyses indicate that there are geographical and institutional differences in the academic behavior of bioethicists and bioethics institutions. Conclusion These exploratory studies support the position that there is no unified global field of bioethics. This is a problem if the only reason is parochialism. But these regional differences are probably of less concern if one notices that bioethics comes in many not always mutually understandable dialects. (shrink)

This article discusses what 'global bioethics' means today and what features make bioethical research 'global'. The article provides a historical view of the development of the field of 'bioethics', from medical ethics to the wider study of bioethics in a global context. It critically examines the particular problems that 'global bioethics' research faces across cultural and political borders and suggests some solutions on how to move towards a more balanced and culturally less biased dialogue in the issues of bioethics. The (...) main thesis is that we need to bring global and local aspects closer together, when looking for international guidelines, by paying more attention to particular cultures and local economic and social circumstances in reaching a shared understanding of the main values and principles of bioethics, and in building 'biodemocracy'. (shrink)

In the late 1960s Van Rensselaer Potter, a biochemist and cancer researcher, thought that our survival was threatened by the domination of military policy makers and producers of material goods ignorant of biology. He called for a new field of Bioethics—“a science of survival.” Bioethics did develop, but with a narrower focus on medical ethics. Recently there have been attempts to broaden that focus to bring biomedical ethics together with environmental ethics. Though the two have many differences—in habits of thought, (...) scope of concern, and value commitments—in this paper we argue that they often share common cause and we identify common ground through an examination of two case studies, one addressing drug development, the other food production. (shrink)

This article reconstructs the history of medical research in East Africa (Kenya, Tanganyika, Uganda), laying out the lies, rumours, and oppressive techniques that made research such a fraught enterprise during the colonial era. The focus is on the beginning stages of medical research: researchers' arrivals, villagers' responses, the gathering of subjects and consent. New archival and oral sources gathered in East Africa illuminate the research encounter and reintegrate the perspective of villagers cum subjects. Data from the 1950s shows that upon (...) arrival in a village, researchers regularly lied in order to avoid sensitive topics and sidestep potential opposition. Misinformation fuelled villagers' fears, skepticism and rumours of blood stealing researchers. When it came to gathering subjects, researchers were rarely involved in the challenging work of enticing villagers to participate, preferring to rely on chiefs. Chiefs, however, often relied on heavy‐handed and ethically questionable techniques. The article concludes by looking at the much‐discussed concept of group consent, and showing that historically a chief never had the authority to consent on behalf of villagers. (shrink)

Most writing on informed consent in Africa highlights different cultural and social attributes that influence informed consent practices, especially in research settings. This review presents a composite picture of informed consent in Nigeria using empirical studies and legal and regulatory prescriptions, as well as clinical experience. It shows that Nigeria, like most other nations in Africa, is a mixture of sociocultural entities, and, notwithstanding the multitude of factors affecting it, informed consent is evolving along a purely Western model. Empirical studies (...) show that 70–95% of Nigerian patients report giving consent for their surgical treatments. Regulatory prescriptions and adjudicated cases in Nigeria follow the Western model of informed consent. However, adversarial legal proceedings, for a multiplicity of reasons, do not play significant roles in enforcing good medical practice in Nigeria. Gender prejudices are evident, but not a norm. Individual autonomy is recognized even when decisions are made within the family. Consent practices are influenced by the level of education, extended family system, urbanization, religious practices, and health care financing options available. All limitations notwithstanding, consent discussions improved with increasing level of education of the patients, suggesting that improved physician's knowledge and increasing awareness and education of patients can override other influences. Nigerian medical schools should restructure their teaching of medical ethics to improve the knowledge and practices of physicians. More research is needed on the preferences of the Nigerian people regarding informed consent so as to adequately train physicians and positively influence physicians' behaviors. (shrink)

A communitarian approach to bioethics adds a core value to a field that is often more concerned with considerations of individual autonomy. Some interpretations of liberalism put the needs of the patient over those of the community; authoritarian communitarianism privileges the needs of society over those of the patient. Responsive communitarianism's main starting point is that we face two conflicting core values, autonomy and the common good, and that neither should be a priori privileged and that we have principles and (...) procedure that can be used to work out this conflict but not to eliminate it. Additionally, it favours changing behaviour mainly through the creation of norms and by drawing on informal social control rather than by coercion. (shrink)

: Recently, various suggestions have been made to respond to the increasingly great shortage of organs by paying for them. Because of the undesirable side effects of such approaches (commodification, injustice, and costs), a communitarian approach should be tried first. A communitarian approach to the problem of organ shortage entails changing the moral culture so that members of society will recognize that donating one's organs, once they are no longer of use to the donor, is the moral (right) thing to (...) do. This approach requires much greater and deeper efforts than sharing information and making public service announcements. It entails a moral dialogue, in which the public is engaged, leading to a change in what people expect from one another. Among the devices that could help to change the moral culture are a public statement, endorsed by community members and leaders, that expresses the community sense that donation "is what a good person does" and a community-specific web page that lists those who have made the commitment. A change in law so that a person's wishes in the matter are recognized as final and binding is also desired. This position paper deals only with cadaver organs and not living donors. (shrink)

Most writing on informed consent in Africa highlights different cultural and social attributes that influence informed consent practices, especially in research settings. This review presents a composite picture of informed consent in Nigeria using empirical studies and legal and regulatory prescriptions, as well as clinical experience. It shows that Nigeria, like most other nations in Africa, is a mixture of sociocultural entities, and, notwithstanding the multitude of factors affecting it, informed consent is evolving along a purely Western model.Empirical studies show (...) that 70–95% of Nigerian patients report giving consent for their surgical treatments. Regulatory prescriptions and adjudicated cases in Nigeria follow the Western model of informed consent. However, adversarial legal proceedings, for a multiplicity of reasons, do not play significant roles in enforcing good medical practice in Nigeria. Gender prejudices are evident, but not a norm. Individual autonomy is recognized even when decisions are made within the family. Consent practices are influenced by the level of education, extended family system, urbanization, religious practices, and health care financing options available. All limitations notwithstanding, consent discussions improved with increasing level of education of the patients, suggesting that improved physician's knowledge and increasing awareness and education of patients can override other influences.Nigerian medical schools should restructure their teaching of medical ethics to improve the knowledge and practices of physicians. More research is needed on the preferences of the Nigerian people regarding informed consent so as to adequately train physicians and positively influence physicians’ behaviors. (shrink)

A few years ago, I wrote on the need for expansion of the environmental areas of bioethics, and covered some of the topics touched on here. Sadly, although it is possible to find some notable exceptions, bioethics does not provide much of an ethical base for considering human-nature relationships. Here I’m not going to deal with these philosophical issues or others about the nature of ethical decision-making. The rapid worsening of the human predicament means that applied ethical issues with a (...) significant environmental connection (what I call “ecoethics”), must be dealt with without waiting for the more interesting theoretical issues to be resolved. I define ecoethics very broadly to deal with dilemmas over a vast range of scales, and believe they now should penetrate virtually all areas of human activities. Ecoethics must struggle with issues of intra-generational (and interperson/group/nation) equity and the dilemmas of discounting by distance (valuing distant persons/events/costs/benefits less than those closer to the observer in physical or mental distance). Ecoethics also deals with the difficult dilemma of inter-generational equity—of discounting the future. That is especially troublesome when actions today can have significant environmental consequences 50 or more generations from now. Here I would like to highlight the ubiquity of those questions and the importance of seeking answers. (shrink)

In this paper, I explore one way to bring bioethics and environmental ethics closer together. I focus on a question at the interface of health, sustainability, and justice: How well does a society promote health with the use of no more than a just share of environmental capacity? To address this question, I propose and discuss a mode of assessment that combines a measurement of population health, an estimate of environmental sustainability, and an assumption about what constitutes a fair or (...) just share. This mode of assessment provides an estimate of the just and sustainable life expectancy of a population. It could be used to monitor how well a particular society promotes health within just environmental limits. It could also serve as a source of information that stakeholders use when they deliberate about programs, policies, and technologies. The purpose of this work is to focus attention on an ethical task: the need to fashion institutions and forms of life that promote health in ways that recognize the claims of sustainability and justice. (shrink)

While the 1970's have been called the environmental years, the 1990's could be seen as the genome years. As the challenge to map and to sequence the human genome mobilized the scientific community, risks and benefits of information and uses that would derive from this project have also raised ethical issues at the international level. The particular interest of the 1997 UNESCO Declaration relies on the fact that it emphasizes both the scientific importance of genetics and the appropriate reinforcement of (...) human rights in this area. It considers the human genome, at least symbolically, as the common heritage of humanity. (shrink)

Access to treatment, in HIV vaccine trials (HVTs), remains ethically controversial. In most prevention trials, including in South Africa, participants who seroconvert are referred to publicly funded programmes for treatment. This strategy is problematic when there is inadequate and uneven access to public sector antiretroviral therapy (ART) and support resources. The responsibilities, if any, of researchers, sponsors and public health authorities involved in HVTs has been hotly debated among academics, scholars, representatives of international organizations and sponsors. However, there is little (...) published on community perceptions. Recent guidance asserts that communities should make inputs into treatment and care decisions. This qualitative study explored a South African community's perceptions of who should provide what to HVT participants as well as how and why this should be done. Twenty-nine adults working at or attending five primary health care clinics in two rural areas in KwaZulu-Natal participated in in-depth interviews. Respondents expressed that researchers should ‘help participants to access’ treatment and care ‘because they are in a position to do so’ and ‘are in a relationship with’ trial participants. Respondents suggested that researchers could help by ‘facilitating referral’ until such time that participants can access care and treatment on their own. We highlight a series of implications for researchers in HVTs, including their need to be aware of prospective participants' considerable trust in and respect for researchers, the responsibility that this places on them, and the need for clear communication with communities so as not to erode community trust. (shrink)

This paper argues that there is a need to move yet further than has already been suggested by some from the individual to the collective as a base for public health. A communitarian approach is one way to achieve this. This has the advantage of allowing not only the community’s voice to have a say in setting the values for public health but also more formally the development of a constitution on which public health might then be built. It also (...) sees public health as a social institution which can be valued in its own right. (shrink)

Disease control has increasingly shifted towards large scale, disease specific, public health interventions. The emerging problems of HIV, hepatitis, malaria, typhoid, tuberculosis, childhood pneumonia, and meningitis have made community based trials of interventions a cost effective long term investment for the health of a population. The authors conducted this study to explore the complexities involved in obtaining informed consent to participation in rural north India, and how people there make decisions related to participation in clinical research.

Can genomics working with crop genetic resources, which can be relevant for developing countries, contribute in reducing the gap between rich and poor countries in using modern biotechnologies? In this paper we concentrate on the extent to which benefit sharing of genetic resources can be a mechanism to harness genomics for development and to reduce the “biotechnology divide” or “genomics divide”. First we analyze the existing arrangements and we conclude that these presuppose predominantly a concept of commutative justice, which is (...) at the basis of considerable drawbacks. Secondly we propose arrangements founded on another concept of justice, distributive justice, which forbids enhancing inequalities. Upstream benefit sharing of genetic resources is proposed as an interesting alternative, which connects with several coalitions of scientists and poor farmers in the third world. These alternatives offer good prospects to contribute to the reduction of the “genomics divide”. (shrink)