Research on human subjects,exploitation, and global principles of ethics

Abstract

In 1997, 5.8 million people became infected with HIV, 30.6 million people were living with HIV/AIDS, and infection was running at about sixteen thousand new infections a day, of which more than 90% were in low income countries. Against this background the urgency and importance of the fight against HIV/AIDS can scarcely be exaggerated. While a cure for AIDS remains elusive research to discover more effective treatment and possible vaccines is vital. It is at this crucial moment that moral criticism has emerged of some of the most promising research towards treatments and vaccines for HIV/AIDS. This criticism has focused on, and purports to be justified by, the major current international principles and protocols on the ethics of research on human subjects. If this criticism is valid and no better ways of prosecuting successful research on AIDS can be found, the consequences, as the figures above indicate, are truly bleak. This paper will attempt to provide an appropriate framework for assessing the ethics of research on human subjects generally and in doing so will assess the relevance and force of the major ethical criticisms that have been levelled at current research on human subjects in the context of HIV/AIDS therapy and vaccines.     

HIV/AIDS financing: a case for improving the quality and quantity of aid

There is no doubt that increasing amounts of funding are needed to provide a full package of HIV/AIDS prevention, treatment and mitigation interventions to Africa. However, even the existing funding flows are posing considerable challenges at a national level. In the quest for rapid results, donors have too often chosen to alleviate the lack of local capacity by bringing in foreign technical assistance or building parallel systems for delivering commodities such as drugs that may not be sustainable over the long term once external assistance stops. Even when such interventions may be relevant, they do not address the biggest challenge, namely how to build up the capacity and the systems needed for large-scale implementation of the AIDS response. This article argues that to attain the needed efficacy in HIV/AIDS mitigation programmes, further sustainable increase in external financing is certainly required (particularly for treatment programmes), but even more important is the need to implement them.     

Beyond the Washington Consensus? Asia and Latin America in search of more autonomous development

International economic power (the ability to shape rules of global economic conduct) needs to be understood in terms of the interactions between rule‐makers and rule‐takers in the global economy. Attempts to reshape development paradigms through interventions during financial crisis have been highly significant for the domestic political economy of the developing world. In the 1980s and early 1990s, the primary question was how much countries would liberalize in response to financial crisis. Reactions to the crises of the late 1990s in Asia and Latin America were more varied. This article explores domestic political responses to crises in both regions in the 1980s and late 1990s. It argues that countries are finding it increasingly difficult to trump domestic political pressure for change with arguments about technocratic necessity. Popular pressure is pushing governments into new experiments in economic nationalism, not a radical rejection of global economic integration, but a reshaping of relationships in an attempt to secure national interests and, in some cases, to devote more resources to welfare. Experiments to date are modest, but could presage more significant change in the future.     

An international public health crisis: can global institutions respond effectively to HIV/AIDS?

The United Nations Millennium Project (2005 UN Millennium Project , 2005 . Combating AIDS in the developing world ( London : Taskforce on HIV/AIDS, Malaria, TB, and Access to Essential Medicines: Working Group on HIV/AIDS, Earthscan ). [Google Scholar]) describes the HIV/AIDS epidemic as a ‘global catastrophe, threatening social and economic stability in the most affected areas, while spreading relentlessly into new regions’. Multilateral institutions under the leadership of the Joint United Nations Program on HIV/AIDS and World Health Organization have been charged with coordinating the worldwide response. Yet with attention and funding diverted between bilateral, regional and multilateral aid providers, and little discernible success in containing the global epidemic to date, it remains an open question whether traditional global institutions are able to effectively combat HIV/AIDS. It is argued that bilateral relationships are still heavily relied upon at present as traditional multilateral arrangements struggle for resources and political attention. The critical questions discussed here are whether global institutions should, can and will respond effectively to the HIV/AIDS crisis. This analysis finds that the most readily organised and deployed global response will likely involve an alliance of public and private agencies that can escape some of the domestic, political and organisational constraints inherent in existing HIV/AIDS funding arrangements. Ultimately, newer hybrid arrangements that have emerged recently, like the Global Fund to Fight AIDS, Tuberculosis and Malaria, may offer a more enduring global regime to control the HIV/AIDS epidemic. The corollary is that UN agencies alone in their traditional form, hampered by multilateral practicalities, will be less effective.     

Navigating the AIDS industry: being poor and positive in Tanzania

This article shows how poor people living with HIV/AIDS in Tanzania navigate a myriad of actors, agencies and organizations to obtain the aid they need to survive. It focuses on community-based organizations which establish networks of care through which people obtain care, treatment and financial support. A case study of a roadside town in Tanzania illustrates that these community-based networks of care — essential to the survival of many — are partly the product of the AIDS industry, which encourages the establishment of community-based organizations and voluntary service delivery rather than more formalized systems of care. Community-based organizations, however, are so poorly supported that they often deploy self-destructive strategies. The need to strategically navigate the AIDS industry creates tension and even conflict among HIV-positive activists, the people they represent and the wider community, which undermines rather than strengthens community-based interventions. Whilst the AIDS industry promises inclusion of HIV-positive people in the response to HIV/AIDS, it succeeds only partially, with the result that it may potentially do more harm than good.     

The Response to HIV/AIDS and the Construction of National Legitimacy: Lessons from Uganda

Uganda faces continual challenges as a low‐income nation reliant on international donors and non‐state actors. It was also one of the first countries to face a population‐wide HIV epidemic, a disease that can strain state capacity to its limits. One would expect that such a combination would weaken the governance structures in a developing country; yet, if anything, the Ugandan state has emerged from its HIV crisis with its legitimacy bolstered. This article reviews the Ugandan response to HIV/AIDS, analysing the ways in which the epidemic has provided a new arena for the Ugandan state to engage with international actors.     

After the Exception: HIV/AIDS Beyond Salvation and Scarcity

Abstract: Access to treatment for HIV/AIDS became a flashpoint for global justice struggles in the late 1990s. An expanding international response, premised to a significant extent on the idea of HIV/AIDS as an exceptional global problem, has since delivered treatment, care and prevention to growing numbers of people. HIV/AIDS exceptionalism, however, has increasingly been questioned, many aspects of the response have been critiqued and donor funding has started to decline. I argue that, having been framed as an exceptional humanitarian emergency, the question of HIV/AIDS as a global problem is increasingly located within a discourse of scarcity. Tracking the growing entanglement of global HIV/AIDS relief with neoliberal governmentality and the emergence of something I term therapeutic neoliberalism, I argue that the shift from a rationality of salvation to one of administration poses new challenges for global health activism. Questioning the discourse of scarcity remains essential to an alternative global health agenda.     

Feminizing risk at a distance: critical observations on the constitution of a preventive technology for HIV/AIDS

Distance is a key idea in contemporary literatures on geography and the government of risk, and it is central to the work presented in this paper, which focuses on Western media representations of an innovative ‘first-generation’ non-contraceptive microbicide, Carraguard. A preventive technology that has been developed under the auspices of the US Population Council and the Bill and Melinda Gates Foundation, Carraguard is represented in the media in ways that produce certain noteworthy cultural geographies of HIV/AIDS. Via an analysis of a selection of such media representations of Carraguard, and focusing on sexual citizenship, political subjectivity and three socio-spatial orderings of risk (displacement, replacement and reorientation), we posit that Carraguard has effected a feminization of the government of risk at a distance. Specifically, we contend that HIV/AIDS has been displaced from the marginalized spaces of metropolitan centres of the West and replaced at the world's under-developed margins, being reoriented from dangerousness/deviance and the masculine to risk and the feminine in that process. In this work, we have taken up Dean's (1999) call to use an analytics of government to highlight the effects of certain ways of thinking and acting, and have also sought to respond to observations by Craddock (2000) that the silences in geography about HIV/AIDS and the regional coordinates of risk and vulnerability need to be addressed. In the final analysis, it appears that media representations of Carraguard reproduce and intensify much older geopolitical and socio-spatial orderings and relations of power that give effect to conceptions and practices of political obligation and sexual citizenship.     

Patents and medicines: the relationship between TRIPS and the human right to health

The question of access to drugs in developing countries is at present largely influenced by the TRIPS Agreement. TRIPS compliance in the field of health requires substantial changes to existing patent laws in some countries. These changes must be analysed in the context of the spread of epidemics like HIV/AIDS and in relation to other international obligations that states have, for instance, with regard to the human right to health.
Intellectual property rights treaties today have significant impacts on the realization of some human rights like the right to health. This article examines the extent to which TRIPS encompasses flexibility for developing countries to be able to foster better access to medicines. It also examines these issues from the point of view of human rights and considers, in particular, the ways in which the relationship between human rights and intellectual property can be improved in international law.     

Convergence Is Not Equality

Despite the fall in global income inequality in the last two decades, levels of living among individuals in the world are still very different and are likely to remain so for a very long time. The uneven rate of decline in inequality and growth volatility in commodity‐dependent countries suggest that there is no reason to believe that global inequality will continue to fall until it reaches acceptably low levels. Global disparities in incomes and welfare, especially in social protection, are at the heart of the problem of migration and populism in Western democracies in recent years. They bring out in bold relief the lack of fit between claims of global convergence and people's perceptions on incomes and well‐being between the global North and South. In this regard, it is more realistic to talk about ‘multiple geographies of 21^st century development’ than a ‘one world’ or single geography of global development. Issues of power, and the way global and national relationships and rules allocate advantages and disadvantages, or promote convergence and divergence, between and within countries, need to be front and centre in the discussion on global convergence.     

Wealth alone does not buy health: Political capacity,democracy, and the spread of AIDS

Although there have been have numerous studies on AIDS documenting its mortality, its epidemiological features, and its relationship to poverty and development, few studies have systematically analyzed how political factors and policies may help curtail the spread of AIDS. In this paper I consider how a variety of domestic factors influence HIV infection rates across countries. I argue that states with higher state capacity are better able to reduce the spread of the HIV/AIDS epidemic. Moreover, I argue that while strong autocracies can implement efficient policies with fewer constraints, democracies tend to be more responsive to the needs of the population and can be more efficient in curtailing the spread of HIV/AIDS. I empirically evaluate the hypotheses using a cross-sectional time-series sample of 117 countries. The empirical results indicate that greater state capacity indeed appears to help curtail HIV/AIDS infection rates.     

HIV/AIDS and development: failures of vision and imagination

As early as the mid-1990s the US Bureau of the Census was making dire predictions as to the effect of AIDS on life expectancy, infant and child mortality and population size and structure in a number of AIDS affected countries. Despite this it was not until 1997 that the United Nations began to consider HIV/AIDS as a development issue. This article looks at how the international community (still) fails to take HIV/AIDS into account in setting development goals. The article argues that this myopic view means that in 2015, when we assess the development goals, we are certain to have 'failed' in a number of countries and, therefore, that a new realism in target setting is imperative. There is a need to understand better the impact of the disease by taking into account that it is a long-wave event with a complex current and future impact. Sustained equitable development will be essential in dealing with this impact.     

Globalization and the Rise of City-regions

A world-wide mosaic of large city-regions seems to be over-riding (though is not effacing entirely) an earlier core-periphery system of spatial organization. The economic dynamics of these city-regions are analysed with particular emphasis on the ways in which they tend to generate increasing-returns effects and competitive advantages for local producers. The managerial tasks that these city-regions face raise many new issues about local economic development policy and institution building in the interests of social order. These issues lead on to further questions about democracy and citizenship in the global mosaic of city-regions as well as in the new world system as a whole.     

‘Facing it Together’: Early Caregiving Responses to Vancouver's HIV/AIDS Epidemic

This article utilises oral history interviews with long-term survivors and caregivers in Vancouver, British Columbia to foreground the importance of gay men's early HIV/AIDS caregiving work. Caregiving was essential to the health and resilience of Vancouver's gay community and served as a political response to homophobic discourses that demonised gay men and devalued the lives of people living with HIV/AIDS. This analysis of the practical and political significance of HIV/AIDS caregiving demonstrates that historians must find better ways to recover the often-untold histories of men's caregiving and domesticity and appreciate their significance to the success of social movements.     

‘It's for the best’: child movement in search of health in Njabini,Kenya

Previous studies produced on the movement of individuals with HIV/AIDS for the obtainment of medical services have rarely been conducted in the Global South and have neglected the experiences of child patients. This article presents a new type of travel for medical care, where HIV+ children in Kenya are being placed or choose to be placed in orphanages in order to obtain constant access to antiretroviral (ARV) therapy, proper nutrition, and education. Through participant observation and photo-elicitation interviews with children in orphanages and their immediate family members in the surrounding Njabini community, this study focused on documenting children's agency in influencing movement decisions to orphanages for better health outcomes. Photo-elicitation interviews in particular allowed for greater insight into children's lives, their motivations for moving to an orphanage, and as a tool to facilitate discussion. Qualitative methods utilized with family members similarly privileged their interpretations of how child movement out of the house would help achieve the ‘best’ possible future for their children, particularly those living with HIV. Study findings shed light on the active role played by children in decisions to move to orphanages, the visualization of these facilities as the best place to secure access to ARV therapy and ensure proper child health, and the interaction that continues to take place between children and their family members once they enter these spaces.     

By the time you read this one million children infected with HIV will be living in the shadows

Every day, 1000 children become infected with HIV. UNAIDS therefore estimates that by the end of 1997, 1 million children under age 15 years will be living with HIV and experiencing the physical and psychological consequences of infection. Since the beginning of the pandemic, more than 2 million HIV-positive children have been born to HIV-positive mothers, and hundreds of thousands of children have acquired HIV from blood transfusions and through sex or drug use. More than 9 million children are estimated to have had a mother who died due to AIDS. Although AIDS is the most recognized disease in the world, insufficient attention has been given to the impact it is having upon children. Unless the spread of HIV is quickly checked, gains achieved in reducing infant and child death rates will be reversed in many countries. An UNAIDS report estimates that by 2010, AIDS may increase infant mortality by as much as 75% and under-5 child mortality by more than 100% in the worst affected countries in the world. It is clear that AIDS will soon be a major cause of death among children. Since about 90% of children under age 15 years acquire HIV from their mothers, either before or during birth or through breast feeding, reducing the vulnerability of infants to HIV infection means enabling women to prevent themselves from contracting HIV and to procure antiviral drugs which can reduce the risk of mother-to-child HIV transmission.     

Towards a jus in bello of Guerrilla Warfare

Abstract

Pentecostalism is the fastest growing form of Christianity in developing countries. Paralleling Pentecostalism's growth has been the HIV/AIDS pandemic. This paper examines how post-apartheid South Africans are responding to the conflicts born of the HIV/AIDS crisis. Fieldwork conducted in 2005 shows that Pentecostals who were not involved in efforts to address HIV/AIDS saw the church's mission as almost exclusively spiritual in nature. Pentecostals who were engaged in HIV/AIDS-related work were more likely to have an integrated worldview and to see the church's mission as relevant to the physical world. Beliefs about removing racism from the church and sin as structural as well as individual were also associated with this integrated worldview. These insights lay the foundation for constructing a Pentecostal social ethic for addressing HIV/AIDS.     

The space between: globalization,liminal spaces and personal relations in rural Costa Rica

Globalization facilitates the movement of people, goods, ideologies and even diseases across borders and into local communities. This article explores the liminal space created by tourism in the rural Costa Rican community of Monteverde as a site where the movement of people, especially Western women (women from the global North), intersects, contests and even reinforces existing heteropatriarchal ideologies. Theories from feminist geography and anthropology provide a lens for understanding and interpreting how Western women and local residents (both male and female) perceive, construct and interact with each other. We argue that ‘liminality’ or the sense of being ‘betwixt and between’ – physically, socially and ideologically – allows Western women a space to both challenge the hegemony of heteropatriarchal ideology and reconstitute it in their sexual relationships with local men. We also explore the implications that sexual relationships between Western women and local men have for local women. We stress the urgency to understand and articulate the nature of these sexual relationships in light of the growing HIV/AIDS epidemic.     

AIDS. Grim news for Asia

While Asia was the last region to be exposed to the global spread of HIV and AIDS, the incidence of HIV infection there is increasing fastest. The Asian Development Bank predicts mortality from AIDS will cause some town and village populations to begin declining by the year 2000. With an estimated 1 million people infected in India, and 400,000 in Thailand, these 2 countries are particularly exposed to the risk of epidemic HIV spread. In 5 years, more people may be affected by AIDS in India than anywhere else in the world. Concern over a growing presence of HIV is also merited for the Philippines, Indonesia, China, and the drug trade's Golden Triangle. The Second International Conference on AIDS in Asia and the Pacific in November 1992 stressed that AIDS no longer affects only homosexual and IV drug using populations. 50% of new infections worldwide in the first half of 1992 were among women, 65% of Thailand's AIDS cases are among heterosexuals, and 3-5% of Thailand's long-haul truck drivers have tested positive for HIV infection. HIV and AIDS robs economies and societies of their best workers. The immediate costs of caring for AIDS patients will pale next to the far greater losses to be realized in private sector economic productivity. Asia's more developed economies will probably be able to survive the epidemic, but small, poor countries like Laos will wilt. Prompt action must be taken to overcome public and religious ignorance and objections to promoting and using condoms throughout the region. For the first time, Beijing has organized an AIDS awareness conference for male homosexuals. Further, Singapore has implemented compulsory testing for lower-income foreign workers. Pakistan has even solicited educational assistance and support from Islamic religious leaders; similar action is being considered in Bangladesh.