43 Global health ethics and cross-cultural considerations in bioethics
The AIDS Clinical Trials Group Study 076 (ACTG 076) made an important contribution to prevention of HIV infection when it established that mother-to-child transmission of HIV (MTCT) in the USA and France could be significantly reduced by giving antiretroviral drugs to pregnant women orally for 8 weeks or more prior to childbirth (median 14 weeks) and intravenously during labor, as well as to the newborn child for 6 weeks in the absence of breast feeding (Connor et al., 1994). A major controversy developed when in subsequent studies of MTCT in developing countries shorter courses of treatment were compared with placebo. Although there is no reason to believe that the ACTG 076 regimen would not work in developing countries if it could be applied, placebo studies were undertaken instead. The rationale was that use of the ACTG 076 regimen was precluded in developing countries, not only by its extremely high cost but, more relevantly, because women do not present early enough in pregnancy to receive this prolonged and intensive regimen. In addition they are anemic and malnourished, unable to stop breast feeding, and have difficulty providing treatment to a child for a six-week period (Varmus and Satcher, 1997). Consequently, cheaper and more easily applied preventive methods needed to be studied to enable rapid application of this preventive method to save many lives in developing countries.
What is global health ethics?
Global health ethics is a suggested means through which to promote widely values that include meaningful respect for human life, human rights, equity, freedom, democracy, environmental sustainability, and solidarity (Benatar et al., 2003). It is contended that failure to pursue adequately such values that play an essential role in improving population health is the underlying basis for new threats to health, life, and security within nations and across the world. Global health ethics could promote this set of values – which combines genuine respect for the dignity of all people and a conception of human development that goes beyond that conceived within the narrow, individualistic “economic” model of human flourishing (Doyal and Gough, 1991; Bensimon and Benatar, 2006). Foremost among the values to promote is solidarity, without which we ignore distant indignities, violations of human rights, inequities, deprivation of freedom, undemocratic regimes, and damage to the environment.
A framework that combines an understanding of global interdependence with enlightened long-term self-interest has the potential to promote a broad spectrum of beneficial outcomes, especially in the area of global health. Health and ethics provide a framework within which such an agenda could be developed and promoted across borders and cultures. An extended public debate through a multidisciplinary approach to global health ethics could promote the new mindset needed to improve health and to deal with threats to health at a global level.
That mindset requires recognition that health, human rights, economic opportunities, good governance, peace, and development are all intimately linked within a complex, interdependent world. The challenge of the twenty-first century is to explore these links, to understand their implications, and to develop processes that could harness economic growth to human development, narrow global disparities in health, and promote peaceful coexistence. This process requires that interest in health and ethics be extended beyond the micro level of interpersonal relationships and individual health to include ethical considerations in relation to public and population health at the levels of institutions, nations, and international relations (Benatar et al., 2003).
A global agenda must, therefore, extend beyond interpersonal ethics and mere rhetoric on universal human rights to include greater attention to individual and institutional duties, social justice, and interdependence. The relatively new interdisciplinary field of bioethics, when expanded in scope to embrace widely shared foundational values, could make a valuable contribution to the improvement of global health. A vision, discussed in detail elsewhere, offers a way forward for global health reform through five transformational approaches (Benatar et al., 2003):
- developing a global state of mind
- promoting long-term self-interest and not merely short-term interests
- striking a balance between optimism and pessimism about globalization
- developing capacity in disadvantaged groups
- achieving widespread access to public goods such as education, basic subsistence needs, and work; this requires collective action, including financing (to make sure they are produced), and good governance (to ensure their optimum distribution and use).
Why is global health ethics important?
Global health: disparities and implications
Since the birth of modern bioethics in the 1960s, the world has changed profoundly. Major expansion of the world economy has been associated with spectacular progress in science, technology, knowledge, healthcare, and in speed of travel and communication, which have been beneficial for many. The dark side of progress includes widening disparities in wealth and health, rapid population growth, the emergence of new infectious diseases, escalating ecological degradation, numerous local and regional wars, a stockpile of nuclear weapons, and dislocation of millions of people (Benatar, 1998). The gap between the income of the richest and poorest 20% of people in the world increased from a nine-fold difference at the beginning of the twentieth century to 30-fold by 1960 – and since then to almost 80-fold by 2000. The gap in health status across the world has also widened (Benatar, 2001). This is illustrated by the fact that although life expectancy improved dramatically worldwide during the second half of the twentieth century this trend has been reversed in the poorest countries in recent years (Kaiser Network, 2006). The emergence and spread of new infectious diseases pose déjà vu dilemmas and, together with new terrorist threats, demonstrate how interconnected we all are (Singer, 2002). The recent epidemic of severe acute respiratory distress syndrome (SARS) (Booth et al., 2003; Lee et al., 2003) is a small-scale example of the new, acute, rapidly fatal infectious diseases that may, like the 1918–19 influenza epidemic, sweep through the world with high mortality rates in all countries and accompanying profound social and economic implications. This recrudescence of a public health threat also provided ethical insights into the implications of the interconnectedness of individuals and society and the need to reconsider the ethics of overriding individual rights (Singer, et al., 2003). Consequently, in the first decade of the new millennium we face the grim reality of human life, health, and security being under severe threat.
Growing global instability and threats to human security and well-being from the widening gulf between the world’s “haves” and the “have-nots” call for new ways of thinking and acting. Distinctions between domestic and foreign policy have become blurred, and the need for coherence between local and international policies is increasingly being acknowledged. Public health, even in the most privileged nations, is arguably now more closely linked than ever to health and disease in impoverished countries. Under such circumstances, linkage of local action to an expanded global health agenda based on shared values and the application of new concepts in public health ethics (Nixon et al., 2005) could facilitate significant improvements in global health.
Cross-cultural considerations in bioethics
In a world characterized by many different value systems and cultures, wide disparities in wealth and health, and common threats (for example new pandemics and environmental degradation), it is of special importance to give consideration to whether there are universal ethical principles that potentially bind us all more closely than we appreciate. If there are, how could these be applied rationally in specific social contexts? This is important both in relation to clinical care of patients (Berger, 1998; Bowman, 2004) and in international collaborative research (Benatar, 2004a).
Rather that attempting to review the extensive debate on ethical universalism and moral relativism (Horton, 1995; Macklin, 1999; Beauchamp, 2003; DeGrazia, 2003; Turner, 2003; Hinman, 2006), I explore here whether areas of disagreement in making ethical decisions may be explicable by failure to understand others and by differing perceptions of social relations. I shall suggest that universal ethical principles applied through moral reasoning, with appropriate consideration of morally relevant local factors, could allow us to find a rational middle ground between the seemingly polarized perspectives of ethical universalism and ethical relativism.
There are two requirements for finding such middle ground. Firstly, it is necessary for scholars to acquire deeper insights into their own value systems and the value systems of others. Secondly, and of equal importance, is the need to avoid either uncritically accepting the moral perspectives of all cultures as equally valid or rejecting them all as invalid. Instead, and despite the shortcomings perceived by some of such an approach, moral reasoning should be used to evaluate when and how local considerations can be morally relevant in the application of universal principles in local contexts.
Understanding others
Understanding others is essential in a globalizing world. Understanding ourselves and others requires what Ninian Smart (1995) has called “structured empathy” and “cross-disciplinary study of world views/belief systems.” Belief systems provide ways of “seeing” the world that, “through symbols, actions, and mobilization of feelings and wills to act … serve as engines of social and moral continuity and change” (Smart, 1995). As world views represent powerful and different starting points from which people think and argue (and generate conflict), it is necessary to understand how they are constructed, used, and abused. While Smart describes several dimensions of world views with special emphasis on these dimensions within religions, his analysis is also relevant for secular world views (Smart, 1995).
Understanding others also requires mutually respectful dialogue. Martha Nussbaum (1997) eloquently argued that three capacities are essential for intelligent dialogue and cooperation between people from different backgrounds in today’s interdependent world: (i) the capacity for critical examination of oneself and one’s traditions, (ii) the capacity to see oneself as bound to all other human beings, and (iii) the capacity to imagine what it might be like to be in the shoes of a person very different from oneself. Jonathan Glover (2001), in his descriptions of numerous genocides across the world during the twentieth century and his quest for understanding why these are perpetrated, concluded that it is only our moral imagination that could enable us to significantly alter our outlook and actions.
Bioethics in the context of a more nuanced understanding of social relations
Anthropologists and social scientists have been critical of modern bioethics on the grounds that it is based on Western moral philosophy and western biomedical perspectives. An additional criticism is that bioethics is located within a theoretical framework that emphasizes the application of scientifically rigorous medical care to people who are sufficiently autonomous to make self-interested decisions about themselves in a context of minimal social connectedness. It is claimed that such a highly reductionist and individualistic approach takes insufficient consideration of the social and cultural contexts of illness or associated ethical dilemmas. In addition, it isolates bioethical issues from spiritual perspectives on health and neglects the dynamic nature of relationships between individuals, their families, and their communities (Fox and Swazey, 1985, 2005; Hoffmeister, 1990; Lieban, 1990; Weisz, 1990; Christakis, 1992; Marshall, 1992).
Some critics of modern bioethics favor a more embracing communitarian conception of the individual that acknowledges and values closer links with other people. As an example, the African notion of a person values links with the past (ancestors), the present (family and community), and with other animate beings (and even inanimate objects such as earth) within a “web of relations” that has been labeled as an “eco-bio-communitarian perspective” (Tangwa, 2000). Within this more embracing context of the African perspective, and similarly within many other traditional cultures, illness represents more than mechanical dysfunction. Here understanding and dealing with illness requires an explanatory model that includes attention to the influence of external social interactions, luck, fate, and magico-religious considerations. These arguments also apply in clinical practice, where ethical decision making could be facilitated in cross-cultural contexts by considering differences in how people in various cultures understand the meaning of personhood, what they view as harms and benefits, how the human body and illness are to be interpreted, and the role of religion and belief systems in health and alleviation of suffering (Helman, 1990). It is necessary to understand that such differences may give rise to abhorrence in some cultures of issues that are taken for granted in others – for example truth telling about fatal diseases, the use of advance directives, removal of life support, and donation of organs (Berger, 1998; Bowman, 2004).
These two views of people, within social relationships defined in a polarized manner either as individualistic or communitarian along a single dimension, have generated much debate in relation to ethical considerations in cross-cultural research (Loue et al., 1996; Nairn, 1998; Tangwa, 2002). Some scholars insist that the individualistic approach is the best universal model and that it must be rigorously applied (Macklin, 1999). Others argue that this is a “particular rationality” about human life; one that is attractive in its abstract form but lacks resemblance to the real world in which people live (Fox and Swazey, 1985).
Mary Douglas and colleagues have offered a more complex framework for understanding social relations and interactions. This framework hopes to bridge the gap between a conception of all humans as fundamentally the same in being rational and self-interested and another conception that views people as differing greatly in what they consider to be rational and what is indeed in their own self-interest (Douglas et al., 2003). These scholars posit that both polar views rest on shaky foundations because cultures and societies vary across time, such that social differences cannot be explained so simply. They also make the case that if we are indeed all totally different it would be hard to understand history and to cooperate across cultures and that it is not necessary to have to choose between these extremes.
They propose a cultural theory in which four basic ways of life can be derived from two dimensions (Figure 43.1), and from which a large variety of ultimate forms of social and cultural life can be derived. Each of the four ways of life identified in this analysis, “consists of a specific way of structuring social relations and a supporting cast of particular beliefs, values, emotions, perception and interests” (Douglas et al., 2003). This analysis illustrates the wider spectrum of middle ground that lies between the usually described extremes of individualism and community, and the inadequacy of always focusing on the polar extremes of dichotomous options.
Cultures are also dynamic and undergoing continuous change. Some traditional hierarchical societies are moving towards greater democracy and placing more emphasis on individualism, for example in the new South Africa with its liberal constitution and Bill of Rights. In addition, multicultural modern societies are acknowledging the need for more emphasis on community, and the need for solidarity is increasingly appreciated in a globalizing and interdependent world. However, it is important to note that in such pluralistic societies respect for democracy should take precedence over the preservation of cultural traditions that undermine democracy and human rights. Under these circumstances, egalitarianism (see Figure 43.1) is becoming an attractive and challenging common ground on which diverse cultures could hopefully meet.
How should I approach global health ethics in practice?
In a multicultural, pluralistic world, it is proposed that healthcare professionals and researchers should have a deeper understanding of the global forces that profoundly influence health. They should also be educated about the social, economic, and political milieu that frames the context in which the clinical practice of medicine and the conduct of international collaborative research take place and be sensitive to the differing perceptions of research and healthcare that prevail in such contexts (Benatar, 2002; Marshall and Koenig, 2004; Fox and Swazey, 2005).
The example of international collaborative research illustrates the need to understand others and for finding a middle ground between ethical universalism and ethical relativism, because it is in this field more than in any other that serious efforts have been made to understand what it means to do research on vulnerable people in developing countries (Benatar, 2004a; Fogarty International Center, 2005). In addition, given the high profile of, and interest in, research, the example of standards set in the research context and linkage of research to improvements in healthcare could provide the stimulus towards achieving greater commitment to improving global health.
I have proposed a two-dimensional framework, along the lines of the analysis offered by Douglas and colleagues, to facilitate understanding disagreements about some of the ethical dilemmas that arise in cross-cultural collaborative research (Figure 43.2; Benatar, 2004a). One dimension of this framework stretches from a pole representing the abstract philosophical construction of universal ethical concepts and principles to a contrasting pole where the local ethos (defined as the “mores” that are influenced by time, geographical location, culture, and other social forces) defines the different worlds that have been studied and described by anthropologists and social scientists. A second intersecting dimension stretches from the ability to use moral reasoning to negotiate the application of universal principles within local contexts to positions of moral dogmatism and “instruction manual” approaches to ethics.
This is a more nuanced analysis than one that pits ethical universalism against moral relativism along a single dimension. It enables distinctions to be drawn between four broad positions: moral absolutism, moral relativism, reasoned global universalism, and reasoned contextual universalism. Moral absolutism describes the position taken by those who believe in ethics as prescribed and immutable. Moral relativism contends that morality is entirely relative to time, place, and culture. The position of reasoned global universalism is reached through the application of a set of abstract ethical principles that have been developed and justified through a reasoned process. The position of reasoned contextual universalism is reached by taking morally relevant local factors into consideration in applying reasoned global universalism.
Seeking morally justified practical applications within the position of reasoned contextual universalism acknowledges the relevance of history, geography, culture, economics, and other factors to the interpretation of universal principles so that they can be utilized effectively and progressively in differing contexts (Benatar, 2002). The influence of such factors on shaping values, belief systems, and the real world is evident in the evolution of bioethics and its methodology in the western world since the early 1960s (Sugarman and Sulmasy, 2001).
Many continue to seek research ethics guidelines that can be uniformly adopted to resolve controversial ethical dilemmas. However, it should be more widely acknowledged that just as it is not possible to spell out precisely in any particular jurisdiction what is constitutional or unconstitutional in all situations and at all times without judicial interpretation so it is a fruitless exercise to attempt to write detailed “instruction manual” type directions spelling out precisely what is ethical or unethical in all situations at all times. The place of ethical universalism is at the abstract and conceptual levels, and then there is the need to seek reasoned ways of specifying how abstract principles are to be applied at the local level.
As with considerations of social solidarity, the position of reasoned contextual universalism allows for the rational application of universal approaches within local contexts. Achieving such middle ground avoids the abstraction that is blind to context while also avoiding the perils of moral relativism (London, 2000, 2001). An essential requirement here is to have deeper insights (a difficult task) into when and how it is morally appropriate to take local contexts (ethos/mores) into consideration in applying universal ethical principles. Considerations of major importance will include whether local cultural values inflict harms that could and should be avoided (or are harmless) and whether (or not) they infringe on human rights or abrogate respect for human dignity – in the full acknowledgement that these concepts too are not easily defined in acceptable ways to all (Benatar, 2004a; Ashcroft, 2005).
The case
The HIV/AIDS pandemic has had a powerful influence on expanding the discourse about global health and human interconnectedness across the globe. It has also sensitized researchers to the complexities of applying universal principles in medical research. The case study selected here is used to illustrate the need for a broader, more global approach to health and to bioethics and the need to find rational means of applying universal ethical principles in different contexts without resorting to moral relativism.
The ideas outlined above have been applied to facilitate resolution of persisting ethical dilemmas in international collaborative research and to assist in determining when a placebo control is justified in clinical research (Benatar, 2004b). I have suggested that under the very different circumstances in which pregnant mothers present for delivery in developing countries the research question that needs to be asked about preventing MTCT of HIV infection differs somewhat from the question asked about how to reduce MTCT in wealthy countries. So, the question to study becomes, “to what extent can MTCT of HIV be prevented in resource-poor settings where pregnant mothers only present to clinics a few weeks or hours before labor, are often anemic and malnourished, and where breast-feeding cannot be avoided?”
The balance of benefits and harms associated with a research project pursuing this question, and the feasibility of then introducing into everyday clinical practice an affordable preventive regimen, differ very significantly from the original studies. When few women present early enough to be treated with the full ACTG 076 regimen, the legitimacy of a different study design, which may include a placebo, is based on this significantly different research question being asked in a totally different social context with very different implications for the local society. Important relevant differences include inability to enroll enough women presenting early enough to receive the ACTG 076 regimen (those few who do present early could receive it), inability to prevent breast-feeding, and the great public health value of obtaining an answer to the research question as rapidly and efficiently as possible in the face of a major pandemic where many threatened lives in developing countries could be saved.
So, if we agree that (i) double standards should be avoided, (ii) that different standards may be acceptable when there are relevant contextual differences, and (iii) that consideration of relevant differences is part of the moral reasoning process, then we can agree that different standards may not be double standards. Such arguments can lead to the conclusion that the use of a placebo in the comparative arm of a study of short-course antiretroviral treatment in MTCT could be ethical (Benatar, 2004b).
This argument can also be taken one step further in the quest to link research to improvements in medical care in developing countries. For example, in the ACTG 076 study in wealthy countries, the researchers were not faced with needing to treat their research subjects for malaria, tuberculosis, or other concomitant diseases that may afflict them during the study, as treatment for these would be available to them through locally available health services. In developing countries, however, it would surely be unethical of researchers not to treat their research subjects for such conditions if treatment were not otherwise available to them. So we have provided a reasoned account of why and how researchers should be required to provide a broader and different standard of overall care in these two research situations (Shapiro and Benatar, 2005), and that this is not an example of double standards, but rather of morally legitimate different standards (Benatar, 2004a).
Making progress in global health will require new paradigms of thinking. Progress could be made through an extended notion of global bioethics and by coupling research to improvements in health through a broader conception of the standard of care that links research to sustainable development through partnerships and strategic alliances.
REFERENCES
This chapter utilizes material from the following previously published articles with permission from the publishers: Benatar, S. R., Daar, A. S., and Singer, P. A. (2003). Global health ethics: the rationale for mutual care. Int Affairs 79: 107–38; Benatar, S. R. (2004). Towards progress in resolving dilemmas in international research ethics. J Law Med Ethics 32: 574–82; Benatar, S. R. (2004). Rationally defensible standards for research in developing countries. Health Human Rights 8: 197–202.