Volume 20, Issue 10, October 2020, Page 5-6.

Studying national and local contexts is essential for understanding the ending of epidemics and related policy responses. This article examines HIV/AIDS in the 1980s and 1990s and swine flu in 2009-2010 in the UK as comparative “tracer epidemics” to understand the multiplicity of endings from the perspective of the contemporary history of policy. Such endings can include: the political ending, changes in definition away from epidemic, the medical end, different endings for different “risk groups,” local endings, and (...) media endings. This multiplicity of endings throws light on the nature of political and institutional structures and their change over time. (shrink)

The author reviews various conceptions of autonomy to show that humans are actually not autonomous, strictly speaking. He argues for a need to rethink the personal autonomy approaches to HIV testing in sub-Saharan Africa (SSA) countries. HIV/AIDS has remained a leading cause of disease burden in SSA. It is important to bring this disease burden under control, especially given the availability of current effective antiretroviral regimens in low- and middle-income countries. In most SSA countries the ethic or value of personal (...) autonomy or self-determination is promoted as primary in HIV testing decision-making. SSA policymakers have an ontological and moral duty to adopt HIV testing policies that reflect human and medical realities, relationships, local contexts, and respect human rights for both individuals and others who are affected by HIV in society. Without rethinking the value of autonomy in HIV testing decision-making, the article cautions that attainment of the Sustainable Development Goal (SDG) 3 and the UNAIDS fast-track strategy that explicitly call to end the epidemic by 2030 will not be feasible for SSA. (shrink)

Background The emergence of molecular HIV surveillance (MHS) and cluster detection and response (CDR) programs as key features of the United States (US) HIV strategy since 2018 has caused major controversies. HIV surveillance programs that re-use individuals’ routinely collected clinical HIV data do not require consent on the basis that the public benefit of these programs outweighs individuals’ rights to opt out. However, criticisms of MHS/CDR have questioned whether expanded uses of HIV genetic sequence data for prevention reach beyond traditional (...) public health ethics frameworks. This study aimed to explore views on consent within MHS/CDR among critical stakeholders.Methods In 2021 we interviewed 26 US HIV stakeholders who identified as being critical or concerned about the rollout of MHS/CDR. Stakeholders included participants belonging to networks of people living with HIV, other advocates, academics, and public health professionals. This analysis focused on identifying the range of positions among critical and concerned stakeholders on consent affordances, opt-outs, how to best inform people living with HIV about how data about them are used in public health programs, and related ethical issues.Results Participants were broadly supportive of introducing some forms of consent into MHS/CDR. However, they differed on the specifics of implementing consent. While some participants did not support introducing consent affordances, all supported the idea that people living with HIV should be informed about how HIV surveillance and prevention is conducted and how individuals’ data are used.Conclusions MHS/CDR has caused sustained controversy. Among critical stakeholders, consent is generally desirable but contested, although the right for people living with HIV to be informed was centrally supported. In an era of big data-driven public health interventions and routine uses of HIV genetic sequence data in surveillance and prevention, CDC and other agencies should revisit public health ethics frameworks and consider the possibility of consent processes. (shrink)

During the AIDS epidemic in the 1980s, it was crucial that providers take steps to protect patients by managing HIV with the perspective of ‘HIV exceptionalism’. However, in 2020, the social and historical barriers erected by this concept, as demonstrated in this patient’s case, are considerably impeding progress to end the epidemic. With significant medical advances in HIV treatment and prevention, the policies informed by HIV exceptionalism now paradoxically perpetuate stigma and inequities, particularly for people of colour. To (...) improve overall HIV care, the medical community must move past HIV exceptionalism by liberalising diagnostics, instituting clinician implicit bias training and advocating to fully decriminalise HIV non-disclosure. (shrink)

With the struggle against apartheid achieved, South Africa faced the new struggle of overcoming the HIV/AIDS pandemic. This paper examines the response of government, the innovation system and civil society in rising to the challenge. The response included a fatal denialism concerning the etiology of AIDS, a fatalism that constitutes political market failure. This political market failure was counteracted through the emergence of social entrepreneurship in the form of the Treatment Action Campaign that mobilized civil society and like-minded health practitioners (...) and researchers within the innovation system. Dependency Theory coupled with a Quadruple Helix model of the innovation system offer possible explanations of this complex human tragedy and the way that government was compelled to embark on a massive program of providing anti-retroviral therapy that has now significantly improved life expectancy. The paper provides socio-economic context, appraisal of the innovation system, and a sketch of how the Quadruple Helix took form. Of special importance is the independence of South Africa’s ‘Republic of Science.’ Independent courts were critical in allowing TAC to obtain remedy against government, Big Pharma, and AIDS dissident scientists. It is argued that its Republic of Science met its obligation of objectivity by shifting emphasis to the cause of AIDS research in the face of official denialism. In effect, the system of innovation and social entrepreneurs are shown to have acted in concert in constituting a Quadruple Helix. (shrink)

In this article, I address some infectious diseases that never really “ended,” even though their morbidity, their social impact, and their public visibility have faded away: AIDS, syphilis, and measles. I will use data from different projects I have conducted on each of those epidemics: HIV/AIDS at the doctoral training level in the 1990s, with a geographical focus on Brazil and the United States; syphilis in the context of a 2010 project on the social history of health in Lisbon in (...) the late 19th and early 20th centuries; and measles as part of my current project on labor migration in the 19th century, with a focus on epidemic outbreaks in migrant ships from Madeira to Hawaii. (shrink)

In this manuscript, “Intersectional Structural Stigma, Community Priorities, and Opportunities for Transgender Health Equity,” Poteat and Simmons outline the legal and policy barriers that impede efforts to end the HIV epidemic among transgender people in the South. They present qualitative and quantitative data from a community engaged research study conducted with transgender adults and other key stakeholders as well as finding from an analysis of policies impacting transgender people in both states. Violence prevention and decriminalization are highlighted as key (...) policy initiatives that would advance health equity for transgender people. (shrink)

SARS, like HIV, placed healthcare workers at risk and raised issues about the duty to treat. But philosophical accounts of the duty to treat that were developed in the context of HIV did not adequately address some of the ethical issues raised by SARS. Since the next epidemic may be more like SARS than HIV, it is important to illuminate these issues. In this paper, we sketch a general account of the duty to treat that arose in response to (...) HIV. Our purpose is not to defend or criticise this account, but to show that it needs to be developed in order to address three important issues. The first issue concerns how risks should be distributed among healthcare professionals. The second issue concerns the conflicts that arise between professional duties and family duties. The third issue concerns the forms of support that societies owe healthcare workers during epidemics. Our descriptions of these issues are drawn from our experience of the SARS epidemic in Taiwan. (shrink)

“An epidemic has a dramaturgic form,” wrote Charles Rosenberg in 1989, “Epidemics start at a moment in time, proceed on a stage limited in space and duration, following a plot line of increasing and revelatory tension, move to a crisis of individual and collective character, then drift towards closure.” Rosenberg's dramaturgic description has become an important starting point for critical studies of epidemic endings (Vargha, 2016; Greene & Vargha, 2020; Charters & Heitman, 2021) that, rightly, criticize this structure (...) for its neatness and its linearity. In this article, I want to nuance these criticisms by distinguishing between the term Rosenberg uses, “closure,” and its implicature, “ending.” I aim to show how many of the complications ensuing between the different forms of ending imagined may well be resolved by assessing whether they bring closure or not. (shrink)

This article examines bioethics in Tanzania, particularly in relation to the HIV/AIDS epidemic for the following reasons: First, not only is HIV/AIDS the most alarming health problem in most parts of Africa, but the complexity of issues involved in medical and research ethics clearly illustrates the various levels of problems that bioethics—more precisely, both professional medical ethics and research ethics—faces in a poor, developing country. The article defends uniformity in the general, international bioethical guidelines but calls for wider discussion (...) in their applicability in different economic and social conditions by claiming that in the present debates the issues of distributive justice, culture, and individual professional judgment have been tangled together in a manner that tends to justify double standards in practice. To avoid this confusion there is a need to find a more coherent approach to bioethics that brings together the normative requirements set by international guidelines, national policy planning, social ethics, and professional medical ethics. a. (shrink)

The aim of this study is to undertake an in-depth conceptual and ethical analysis of African philosophy of sex and the HIV/AIDS epidemic in Africa by taking the Oromo of Ethiopia as an example. The continent with just 10% of the world’s population is home to over 70% of the world’s HIV/AIDS infection. HIV/AIDS is a social, economic, demographic and moral problem as well as a health care issue. Some scholars hypothesise that the unique nature of African sexuality, sexual (...) promiscuity, the prevalence of other ailments, and the unique nature of the viral subtypes (known as clades) are the major reasons for Africa’s AIDS prevalence. However, there is little substance to their hypotheses. As of today there is no sound explanation for the prevalence of HIV/AIDS in Africa. So far the HIVintervention has largely focused on behaviours, systems and structures which are visible without fully taking into account culture, values, norms and traditions which are invisible but have a strong influence on visible aspects of individual behaviours and societal structures. Thus, this issue requires further research into people’s philosophy of sex and indigenous moral values. This study and the contributions of many scholars have shown that Africans have a diverse spectrum of sexual behaviour ranging from the very restrictive to the permissive. Although some ethnic groups have developed a profound philosophy of ex that can curb the expansion of HIV/AIDS, there have been some sexual and religious norms and expectations in Africa that have contributed to the rapid spread of HIV/AIDS. Social, economical, and political forces have also shaped the HIV/AIDS epidemic. This paper thus suggests that global fight against HIV/AIDS should go beyond a narrow focus on the behavioural and biological, and consider broader structural and underlying factors such as poverty, homelessness, widespread sex work, rural to urban migration, instability, a high rate of unemployment, unequal gender relations, harmful traditional practice and global injustice that have facilitated the spread of HIV/AIDS. African governments should involve the local people and civil society organisations in the fight against HIV/AIDS by using a wide range of participatory methodologies and culturally sensitive advocacy strategies. This study thus suggests that a multi-faceted approach is needed to deal with the challenges of the 21st century and address the HIV/AIDS epidemic in our world. This study relies on literature review, interviews and personal observation. (shrink)

The aim of this study is to undertake an in-depth conceptual and ethical analysis of African philosophy of sex and the HIV/AIDS epidemic in Africa by taking the Oromo of Ethiopia as an example. The continent with just 10% of the world’s population is home to over 70% of the world’s HIV/AIDS infection. HIV/AIDS is a social, economic, demographic and moral problem as well as a health care issue. Some scholars hypothesise that the unique nature of African sexuality, sexual (...) promiscuity, the prevalence of other ailments, and the unique nature of the viral subtypes (known as clades) are the major reasons for Africa’s AIDS prevalence. However, there is little substance to their hypotheses. As of today there is no sound explanation for the prevalence of HIV/AIDS in Africa. So far the HIVintervention has largely focused on behaviours, systems and structures which are visible without fully taking into account culture, values, norms and traditions which are invisible but have a strong influence on visible aspects of individual behaviours and societal structures. Thus, this issue requires further research into people’s philosophy of sex and indigenous moral values. This study and the contributions of many scholars have shown that Africans have a diverse spectrum of sexual behaviour ranging from the very restrictive to the permissive. Although some ethnic groups have developed a profound philosophy of ex that can curb the expansion of HIV/AIDS, there have been some sexual and religious norms and expectations in Africa that have contributed to the rapid spread of HIV/AIDS. Social, economical, and political forces have also shaped the HIV/AIDS epidemic. This paper thus suggests that global fight against HIV/AIDS should go beyond a narrow focus on the behavioural and biological, and consider broader structural and underlying factors such as poverty, homelessness, widespread sex work, rural to urban migration, instability, a high rate of unemployment, unequal gender relations, harmful traditional practice and global injustice that have facilitated the spread of HIV/AIDS. African governments should involve the local people and civil society organisations in the fight against HIV/AIDS by using a wide range of participatory methodologies and culturally sensitive advocacy strategies. This study thus suggests that a multi-faceted approach is needed to deal with the challenges of the 21st century and address the HIV/AIDS epidemic in our world. This study relies on literature review, interviews and personal observation. (shrink)

At the end of the 1990s, Brazil was faced with a potentially explosive HIV/AIDS epidemic. Through an innovative and multifaceted campaign, and despite initial resistance from multinational pharmaceutical companies, the government of Brazil was able to negotiate price reductions for HIV medications and develop local production capacity, thereby averting a public health disaster. Using interview data and document analysis, the authors show that the exercise of corporate social responsibility can be viewed in practice as a dynamic negotiation and an (...) interaction between multiple actors. Action undertaken in terms of voluntary CSR alone may be insufficient. This finding highlights the importance of a strong role for national governments and international organizations to pressure companies to perform better. (shrink)

The response to the HIV/AIDS pandemic in Africa has so far ignored important traditional African values and attitudes toward disease and commerce. These values and attitudes are significantly different from the libertarian, market-driven, profit-oriented values and practices of important sectors of the Western world. To deal with this epidemic, the world should consider respect for, and possibly even adoption of those African values, which provide for people in genuine need, irrespective of their ability to pay. HIV/AIDS vaccine research indigenous (...) to Africa is also not always taken seriously, and struggles to find adequate funding for such research within or outside of the continent have been extremely difficult. A better appreciation of knowledge systems and values indigenous to the African experience is important in the fight against the HIV/AIDS pandemic. (shrink)

According to Native American myths, there once roamed an Eye Juggler—a humanoid deity who could detach his eyes and juggle them. His talents were of no special appeal to members of the various tribes, given that it is quite possible to hunt buffalo, prepare meals, or play stickball without tossing around your eyes. However, there was a white man who grew interested in the Eye Juggler. Sensing great utility in detachable eyes—for spying, or looking two ways at once—the white man (...) formulated a deal. He would trade away his wealth in return for the Eye Juggler's gift. To this proposition the Juggler agreed, but also issued a warning. If the eyes stay detached for very long, they rot and cannot be used. (shrink)

_Just Doctoring_ draws the doctor-patient relationship out of the consulting room and into the middle of the legal and political arenas where it more and more frequently appears. Traditionally, medical ethics has focused on the isolated relationship of physician to patient in a setting that has left the physician virtually untouched by market constraints or government regulation. Arguing that changes in health care institutions and legal attention to patient rights have made conventional approaches obsolete, Troyen Brennan points the way to (...) a new, more aware and engaged medical ethics. The medical profession is no longer isolated, even theoretically, from the liberal, market-dominated state. Old ideas of physician beneficence and altruism must make way for a justice-based medical ethics, assuming a relationship between equals more compatible with liberal political philosophy. Brennan offers clinical examples of many of today's most challenging medical problems—from informed consent to care rationing and the repercussions of the HIV epidemic—and gives his recommendation for a new ethical perspective. This lively and controversial plea for a rethinking of medical ethics goes right to the heart of medical care at the end of the twentieth century. (shrink)

The epidemic of COVID-19 appears to be reshaping the world, separating before and after, present and past. Its perceived novelty raises the question of what role the past might play in the present epidemic and in responses to it. Taking the view that the past has not passed, but is present in is material and immaterial remains, and continuously emerging from these, we argue that it should not be studied as closed narration but through the array of its (...) traces, which constitute the texture of the present. To that end, and building on long-term ethnographic research on past and present epidemics in western Kenya, we assemble here some preliminary observations on the first weeks of COVID-19 in Kenya. We explore how the acute epidemic crisis currently unfolding is intertwined with layered fragments of earlier epidemic events, attending to material infrastructures, institutional practices, and ritual responses, to the presence of virally loaded bodies, pharmaceuticals, and their residues, and to the resurgence of often painful memories and emotions. People in this region have experienced a long century of epidemics and anti-epidemic measures of varying duration and intensity, from colonial and postcolonial sleeping sickness and smallpox to HIV/AIDS and more recently cancer, alongside actual or anticipated outbreaks of cholera and Ebola. This local perception of one long epidemic qualifies the notion of a radical temporal break that the COVID-19 pandemic is often associated with in European conversations. (shrink)

HIV-related state laws are being created transnationally though the use of omnibus model laws. In 2004, the US Agency for International Development funded the creation of one such guidance text known as the USAID/Action for West Africa Region Model Law, or N'Djamena Model Law, which led to the rapid spread of HIV/AIDS laws, including the criminalisation of HIV transmission, across much of West and Central Africa . In this article, I explicate how an epidemic of highly problematic legislation spread (...) across the region as a result of a text-mediated work process enabled through model laws. I theorise the textual genre of model laws arguing that these texts are best understood as ‘preoperative documents’ which, when activated, can lead to swift legislative reform in and beyond the field of HIV/AIDS governance. The legislative process being investigated was made visible through participant observation, archival research, textual analysis and informant interviews with national and international stakeholders . This involved ethnographic research in Canada, the USA, Switzerland, Austria, South Africa and Senegal . The untold policy processes and narratives explored in this article make evident how the work of contesting problematic HIV/AIDS model laws and newly drafted state laws involves both creating new texts and contesting the legitimacy and efficacy of others. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The National Commission on AIDSDonald S. Goldman (bio) and Jeff Stryker (bio)A decade after the first cases were recognized in the United States, AIDS continues to vex policymakers and fascinate the public. It has been said that AIDS acts as a prism, refracting a spectrum of controversial topics. For bioethicists, these topics include: equity in the allocation of resources for treatment and research; forgoing life-sustaining care and proxy decision (...) making; informed consent in the context of HIV testing and screening; the ethical duties of health care workers to provide care for persons with HIV disease; and competing obligations of health care professionals to patients and to third parties who may be put at risk.The Role of CommissionsIf AIDS is the quintessential case study for bioethicists, it is a potential quagmire for politicians. The association of HIV disease with drug use and sexual behavior makes it a topic that all but the most courageous (or the most homophobic) politicians shy away from. A frequent political response is to form a commission.Alexander Capron, who was executive director of the President's Commission for the Study of Ethical Problems in Medicine, has described some roles commissions play: a watchdog, overseeing the work of particular government agencies; a crucible, providing a means for "publicly hammering out conclusions on controversial issues when consensus, both in the public and in the relevant disciplines, is not yet apparent"; and "a lightning rod for public concern—or viewed less charitably, dumping ground for an issue that is too difficult for the ordinary political process to handle" (Capron 1983, p. 9).Nearly every state has created a gubernatorial-level task force or commission on AIDS. The National Commission on AIDS was established under the Health Omnibus Program Extension (HOPE) Act of 1988, which was signed by President Reagan on November 4, 1988. The official charter of the commission was approved August 2, 1989 and its original two-year term was extended for a third year. The mission statement crafted by the commission to reflect its Congressional mandate reads: [End Page 339]The National Commission on Acquired Immune Deficiency Syndrome is an independent body of 15 members created to advise the President and Congress. The Commission seeks to build a broad public understanding on the magnitude, scope and urgency of the HIV/AIDS epidemic; provide and inspire leadership at all levels of both the public and private sectors; empower individuals and communities; and advocate for effective, cooperative and non-discriminatory resources required for prevention, comprehensive care, and the research necessary to halt the epidemic.As the mission statement implies, the National Commission on AIDS has viewed itself from the outset not only as a crucible for policy analysis, but also as a forum for those affected by HIV disease. In site visits and hearings the commissioners have met with hundreds of people living with HIV disease, and with caregivers on the front lines. This odyssey has taken the commission on visits to homeless shelters in New York City; to "shooting galleries" where intravenous drug users congregate in Seattle; to Native American communities in four states; to private homes in rural Georgia; and to hospitals, HIV antibody testing centers, drug treatment clinics, and hemophilia treatment centers throughout the nation. It quickly became clear during the commission's travels that HIV disease cannot be understood outside the context of the racism, homophobia, poverty and unemployment that provide the medium that fosters its spread. It also became apparent that issues of HIV prevention, care and treatment, and clinical research are inextricably intertwined and must be dealt with as such.Early InitiativesUnder the leadership of Chairperson June Osborn and Vice-chairperson David Rogers, the commission decided that the problems it saw in its first few meetings were too urgent to await a full-length annual report. Hence the commission entered the fray with a series of brief interim reports on particular aspects of AIDS. These reports enabled the commission to draw attention to urgent problems of limitations in access to health care and to underscore the plight of people with HIV disease who might otherwise garner little media attention, such as prisoners and drug users (National Commission... (shrink)

_Just Doctoring_ draws the doctor-patient relationship out of the consulting room and into the middle of the legal and political arenas where it more and more frequently appears. Traditionally, medical ethics has focused on the isolated relationship of physician to patient in a setting that has left the physician virtually untouched by market constraints or government regulation. Arguing that changes in health care institutions and legal attention to patient rights have made conventional approaches obsolete, Troyen Brennan points the way to (...) a new, more aware and engaged medical ethics. The medical profession is no longer isolated, even theoretically, from the liberal, market-dominated state. Old ideas of physician beneficence and altruism must make way for a justice-based medical ethics, assuming a relationship between equals more compatible with liberal political philosophy. Brennan offers clinical examples of many of today's most challenging medical problems—from informed consent to care rationing and the repercussions of the HIV epidemic—and gives his recommendation for a new ethical perspective. This lively and controversial plea for a rethinking of medical ethics goes right to the heart of medical care at the end of the twentieth century. (shrink)

During the late 20thcentury numerical rating scales became central to the diagnosis of dementia and helped transform attitudes about its causes and prevalence. Concentrating largely on the development and use of the Blessed Dementia Scale, I argue that rating scales served professional ends during the 1960s and 1970s. They helped old age psychiatrists establish jurisdiction over conditions such as dementia and present their field as a vital component of the welfare state, where they argued that ‘reliable modes of diagnosis’ were (...) vital to the allocation of resources. I show how these arguments appealed to politicians, funding bodies and patient groups, who agreed that dementia was a distinct disease and claimed research on its causes and prevention should be designated ‘top priority’. But I also show that worries about the replacement of clinical acumen with technical and depersonalized methods, which could conceivably be applied by anyone, led psychiatrists to stress that rating scales had their limits and could be used only by trained experts. (shrink)

This study evaluates the conflict between patient confidentiality and partner notification in sero‐discordant relationships, and argues the thesis that based on a theoretical formulation of Ubuntu, a health provider is obliged to facilitate friendly relationships in which individuals are true subjects and/or objects of communal friendship. In serodiscordant relationships, the health professional can fulfil this obligation by notifying “others” (particularly a partner with whom an HIV positive patient has a “present” and “actual relationship”) of their spouse's HIV seroconversion, since without (...) such relevant information a partner (subject) of an HIV positive patient cannot “appropriately” care for the patient's condition (object). There is a need to move away from the medical traditional emphasis that has for so long put primacy on doctor‐patient confidentiality as is the case with the Health Professions Council of South Africa Guidelines (Booklet 12) which favours patient confidentiality over partner notification. Given empirical evidence to support effectiveness of partner notification amongst sero‐discordant couples, there is thus, a need to focus emphasis on latter. This shift is necessary for achieving the United Nations’ Sustainable Development of Goal of ending HIV/AIDS epidemic by 2030. I proposed in this study that African ethics, specifically Ubuntu, will do a better job than current ethical frameworks at ensuring that partner notification receives more emphasis in the care of serodiscordant couples. If this framework is integrated into ethical guidelines and codes, it would significantly enhance the care of serodiscordant couples, as well as further boost global effort at ending HIV/AIDS epidemic by 2030. (shrink)

More than 25 years into the HIV epidemic, in excess of 2 million new infections continue to occur each year. HIV prevention research is crucial for groups at heightened risk for HIV, but the design and conduct of HIV prevention research with vulnerable populations worldwide raises considerable ethical challenges. The HIV Prevention Trials Network (HPTN) is a global collaborative network that conducts clinical and behavioural studies on non-vaccine interventions to reduce the transmission of HIV. In 2003, the HPTN developed (...) ethical guidance to enhance the responsible conduct of its research activities and as a distinctive contribution to global research ethics. In what follows, the developments that motivated the drafting of a revised ethics document in 2009 are described, including the process by which that revision took place and some of the key differences between the HPTN ethics guidance and other relevant guidelines in the field. (shrink)

Science and Community: Ending Obesity Improving Health (S&C) aimed to reduce obesity in Houston by developing community partnerships to identify research priorities and develop a sustainable obesity reduction program. Partnership members were recruited from S&C events and invited to participate in in‐depth interviews to gain insight into obesity prevalence, causes, and solutions. Members (n = 22) completed a 60–90‐min in‐depth interview. The interview guide consisted of 30 questions about pressing health problems in the community, potential solutions to health problems (...) and obesity and how the environment has impacted obesity and health behaviors in the community. Interviewees (n = 12 women and 10 men) were mostly Hispanic/Latino (n = 9) and African American (n = 7). Common problems identified were childhood obesity, balancing a healthy diet and physical inactivity. Interviewees identified obesity as a major problem in their communities and cited access to quality food and physical activity resources as both a problem and a solution. Additional emergent themes focused on solutions, including increasing awareness and education, coordinated efforts among organizations and using an ecologic approach to combat obesity. Community insight gleaned from this study may be used to enhance relevance and sustainability of programs developed to reduce obesity and suggests possible avenues for participatory research and intervention. (shrink)

As COVID-19 drags on and new vaccines promise widespread immunity, the world's attention has turned to predicting how the present pandemic will end. How do societies know when an epidemic is over and normal life can resume? What criteria and markers indicate such an end? Who has the insight, authority, and credibility to decipher these signs? Detailed research on past epidemics has demonstrated that they do not end suddenly; indeed, only rarely do the diseases in question actually end. This (...) article examines the ways in which scholars have identified and described the end stages of previous epidemics, pointing out that significantly less attention has been paid to these periods than to origins and climaxes. Analysis of the ends of epidemics illustrates that epidemics are as much social, political, and economic events as they are biological; the “end,” therefore, is as much a process of social and political negotiation as it is biomedical. Equally important, epidemics end at different times for different groups, both within one society and across regions. Multidisciplinary research into how epidemics end reveals how the end of an epidemic shifts according to perspective, whether temporal, geographic, or methodological. A multidisciplinary analysis of how epidemics end suggests that epidemics should therefore be framed not as linear narratives—from outbreak to intervention to termination—but within cycles of disease and with a multiplicity of endings. (shrink)

The beginnings of epidemics are often told as if they are simple to locate in time. They take the form of a crisis, and as such, function as great synchronisers of different temporalities, bringing social temporalities “in line” with biological ones. In the case of the COVID-19 pandemic, for example, political processes that are usually slow were accelerated in order to “catch up with” the fast pace of the virus's reproduction, as policymakers saw a need to contain the virus. The (...) end of an epidemic, on the other hand, is more difficult to pinpoint. This can be attributed to the fact that the myriad actors involved in and affected by an epidemic operate on diverging time scales. Although seemingly synchronised from its outset, these lifetimes become un-synchronised as the epidemic unfolds. Some effects of an epidemic outbreak are easily observed, such as infection rates and the number of deceased. Others-psychological or medical after-effects, or the lasting memory in a population-may be harder to spot. Declaring that an epidemic has “ended” usually relies on the ceasing of the former, not the latter. However, as this article argues, the ending(s) of an epidemic should be regarded in the plural, each operating within its own rhythm and scale. This article explores the multiplicity of lifetimes involved in epidemics-human, microbial, institutional-and tries to give an explanation as to how epidemics end (or linger on) using an approach of multiple temporalities. (shrink)

The recent Ebola outbreak in West Africa began in the spring of 2014 and has since caused the deaths of over 6,000 people. Since there are no approved treatments or prevention modalities specifically targeted at Ebola Virus Disease , debate has focused on whether unproven interventions should be offered to Ebola patients outside of clinical trials. Those engaged in the debate have responded rapidly to a complex and evolving crisis, however, and this debate has not provided much opportunity for in-depth (...) analysis. Additionally, the existing literature on access to unproven therapies has focused on contexts like HIV/AIDS and oncology, which are very different than the Ebola epidemic. In this paper, we examine the ethical issues surrounding access to unproven therapies in the context of the recent Ebola outbreak to yield new insights about this controversial and unsettled issue. We argue first that, in this context, the interests of patients in obtaining access to unproven therapies are not fully aligned.. (shrink)

The seriousness of the risk that healthcare workers faced during SARS, and their response of service in the face of this risk, brings to light unrealistic assumptions about duty and risk that informed the debate on duty to care in the early years of HIV/AIDS. Duty to care is not based upon particular virtues of the health professions, but arises from social reflection on what response to an epidemic would be consistent with our values and our needs, recognizing our (...) shared vulnerability to disease and death. Such reflection underwrites a strong duty of care, but one not to be borne solely by the altruism and heroism of individual healthcare workers. (shrink)

Australia and Thailand have made great progress in partnering with NGOs to respond to HIV/AIDS through the protection of human rights. Unquestionably, the Australian experience is more advanced. However, it is important to note that Australia’s political institutions and traditions were able to empower and accept an NGO movement of this nature almost from the start of disease identification.Thailand did not have this advantage, having only moved toward political institutions that are open to public opinion and civil society’s input within (...) the last 15 years.In spite of their varied histories, both countries eventually traveled down similar paths. In Australia, HIV/AIDS NGOs moved rapidly forward from being standard-setting, fact-finding, and advocacy organizations to becoming capable of creating new HIV/AIDS umbrella organizations and influencing existing governmental organizations on HIV/AIDS human rights issues. Indeed, by the close of the 1980s, NGOs had established themselves firmly in all of these roles. The fact that Australia still struggles with addressing an emerging epidemic among indigenous people is more a sign that the movement has thus far been incomplete than that it is faltering or ineffective. Additionally, now that NGOs are actively working through AFAO on behalf of indigenous peoples, it is likely that there will finally be more movement on human rights and H1V/AIDS issues for this group. However, sex tourism and the illegal trafficking of women and children for purposes of prostitution continue to require ongoing proactive management by the partnership before they become a serious epidemic threat.Thailand’s situation is somewhat different from that of Australia. The HIV/AIDS NGO community has grown since the epidemic exploded in the 1990s, but the organizations themselves continue to have limited power, While they have been an important voice in human rights standard-setting, fact-finding and advocacy regarding HIV/AIDS, they remain unable to fully influence the governmental organizations that ultimately make and implement human rights policies in these areas. As the NGO experience in general is new to Thai politics, continuing human rights abuses are a sign of the miles left to travel on this road rather than an indicator that the road needs to be abandoned.Regardless of their differing experiences with creating HIV/AIDS partnerships, it is impossible to say that either effort has failed to use this mechanism successfully to at least begin seriously addressing HIV/AIDS human rights issues. What can be said is that each partnership can be placed at a differing point on a continuum of effectiveness that ultimately concludes with a fully integrated partnership capable of fundamentally influencing a country’s HIV/AIDS human rights policies on an ongoing basis. (shrink)

The U.S. National Institute of Allergies and Infectious Diseases and the National Institute of Mental Health have a new research priority: inclusion of terminally ill persons living with HIV in HIV cure-related research. For example, the Last Gift is a clinical research study at the University of California San Diego for PLWHIV who have a terminal illness, with a prognosis of less than 6 months. As end-of-life HIV cure research is relatively new, the scientific community has a timely opportunity to (...) examine the related ethical challenges. Following an extensive review of the EOL and HIV cure research ethics literature, combined with deliberation from various stakeholders and our experience with the Last Gift study to date, we outline considerations to ensure that such research with terminally ill PLWHIV remains ethical, focusing on five topics: 1) protecting autonomy through informed consent, 2) avoiding exploitation and fostering altruism, 3) maintaining a favorable benefits/risks balance, 4) safeguarding against vulnerability through patient-participant centeredness, and 5) ensuring the acceptance of next-of-kin/loved ones and community stakeholders. EOL HIV cure-related research can be performed ethically and effectively by anticipating key issues that may arise. While not unique to the fields of EOL or HIV cure-related research, the considerations highlighted can help us support a new research approach. We must honor the lives of PLWHIV whose involvement in research can provide the knowledge needed to achieve the dream of making HIV infection curable. (shrink)

In 2009, in a provocative article in the Lancet , Granich et al . proposed a radical public health intervention to address the vast human toll exacted by the HIV epidemic in regions with generalized epidemics where millions are infected. The proposal, based on modeling, suggested that universal screening for HIV and immediate treatment for all found to be infected, regardless of immune status, could ultimately reverse an epidemiological course that has appeared resistant to efforts at prevention.

The recent statistics on the prevalence of HIV and AIDS shows that the number of people living with the virus keep on increasing amidst government’s interventions to deal with the epidemic. Pentecostal churches have a potential to deal with the problem, given their theology of experience, but are hindered by some myths about the factors associated with the epidemic highlighted in this article, such as the demonisation of sex and HIV and AIDS, judgemental views, denominationalism and condemnation of (...) condoms. Many scholars interested in the study of HIV and AIDS have researched these myths. The unique contribution that this article makes is a proposal for a strategy of demythologisation of the factors associated with the epidemic among Pentecostals. The article uses a literary analysis to discuss effective ways of dealing with the epidemic in South Africa, such as to talk openly about sex, encourage safer sex, adopt a tolerant approach, embrace a holistic view and reconstruct a theology of HIV and AIDS. (shrink)

BackgroundThe West African Ebola virus epidemic from 2014 to 2016 is unprecedented in its scale, surpassing all previous and subsequent Ebola outbreaks since 1976. This epidemic provoked a humanitarian emergency that extended to different spheres of life, making visible ethical challenges in addition to medical, economic, and social ones. The present article aims to identify and differentiate the scope of ethical issues associated with the Ebola epidemic.MethodsAn online media analysis was performed on articles published from March 2014 (...) to September 2015 in ten preselected academic journals (scientific press) and two online newspapers (lay press). Two methodological approaches were combined: a systematic literature search and a qualitative content analysis. An additional keyword search was conducted on the PubMed database for the period after the end of the Ebola epidemic (2016-2020) to obtain an overview of research dealing with medical ethics due to the epidemic and to compare these results with the identified ethical challenges.ResultsA total of 389 articles dealing with the subject fields “Ebola epidemic” and “ethics” were researched. For qualitative content analysis, the time span with the highest article density was selected and a total of 64 articles were included (15 scientific articles, 49 popular articles). Five core ethical challenges of the Ebola epidemic emerged: 1. Responsibility and Accountability, 2. Spillover Effects, 3. Research and Development, 4. Health Communication, and 5. Resource Allocation. Articles in academic journals were dominated by the discussion of normative aspects in the area of “research and development”, while newspaper articles focused on aspects of “responsibility and accountability”.ConclusionAn ethical discussion of the Ebola epidemic requires an examination of as many of the ethical dimensions involved as possible. The presented investigation of the two types of media with regard to the Ebola epidemic offers this possibility of a more comprehensive insight into this diversity as a basis for ethical discussions. (shrink)

For most of the 20th century, the condom in the United States was a cheap, useful, but largely unmentionable product. Federal and state statutes prohibited the advertising and open display of condoms, their distribution by mail and across state lines, and their sale for the purpose of birth control; in some states, even owning or using condoms was illegal. By the end of World War I, condoms were increasingly acceptable for the prevention of sexually transmitted disease, but their unique dual (...) function—for disease prevention and contraception—created ongoing ambiguities for sellers, consumers, and distributors as well as for legal, political, health, and moral leaders. Not until the 1970s did condoms emerge from the shadows and join other personal hygiene products on open drugstore and supermarket shelves and in national advertisements. Then came the 1980s and AIDS when, despite the rise of Ronald Reagan, the radical right’s demonization of condoms, and the initial reluctance of condom merchants to market to gay constituencies, the HIV/AIDS epidemic slowly but inexorably propelled the condom to the top of the prevention agenda. The condom’s journey from lewd device to global superstar was fitful, but colorful. The Comstock Act of 1873, prohibiting birth control information and devices, created a vast underground operation—periodically illuminated, however, by arrests, protests, legal proceedings, and media coverage. This essay chronicles one such moment of illumination: the legal battle in the 1920s and 1930s over the legitimacy and legality of the Trojan Brand condom trademark and the unusual series of advertisements produced by the Youngs Rubber Corporation, makers of Trojans, to dramatize the ethical and economic issues of the trademark battle. Culminating in Youngs Rubber Corporation v. C.I. Lee & Co., Inc. , this landmark case in trademark law established the right of the Trojan Brand condom, despite its ambiguous dual function, to the protection of a federal trademark. I seek to show how the Youngs antipiracy ad series illuminates the paradox of visibility by illuminating the paradox of any binary division: to establish the one depends inevitably on invoking or making visible—even if to suppress—the other. This essay is a case study in the negotiation of such a dialectic. (shrink)

Debates about what constitutes benefits in human research continue to be less informed due to a lack of empirical evidence from the developing world. This study aimed to explore what constitutes benefits in HIV vaccine trials in Tanzania and examine inherent ethical implications. A qualitative case study design was deployed and a total of 29 purposively selected study participants comprising of experienced researchers, institutional review board members and community advisory board members were included. Collected data were analyzed by thematic analysis (...) aided by computer software: MAXQDA version 20.4.0. The study findings indicate that there is a growing appreciation of benefits beyond actual vaccines to include 1) capacity building at individual, community, institutional and regulatory levels; and 2) non‐capacity building related benefits such as strengthened collaborations, ancillary care and employment opportunities. So, as the struggle for viable HIV vaccines continues, other benefits that have accrued from such trials are not to be blindsided especially for developing countries like Tanzania. (shrink)

What does it mean for an epidemic to end, and who gets to declare that it is over? This multidisciplinary spotlight issue provides 18 case studies, each examining specific epidemics and their ends as well as the methodologies used to measure, gauge, and define an epidemic's end. They demonstrate that an epidemic's end is often contentious, raising issues of competing authority. Various forms of expertise jostle over who declares an end, as well as what data and information (...) should be used to measure and define the end of an epidemic. As a result, it is more accurate to describe multiple endings to an epidemic: the medical end, the political end, and the social end. At the same time, multidisciplinary research into the ends of epidemics highlights the crucial role of information and measurement in an epidemic's end, as well as the ways in which ending forces observers to rethink and reconceptualize time. Whereas the declaration of an epidemic suggests a neatly defined period of emergency, the end is a messy process incorporating competing accounts of what went wrong and fears of the next epidemic, in which cycles of multiple diseases and overlapping social crises disrupt a simple return to normal life, articulating the nature of epidemics not just as medical phenomena, but also as fundamentally political and social ones. The end period therefore looks both forward and backward, often applying “lessons learned” from the history of the ended epidemic to the future, in anticipation of the next outbreak. Re-envisioning the future is a way to analyse and understand the past epidemic, and thereby to restore human agency into society's relationship with disease. (shrink)

The response many gay men took to the HIV epidemic in the United States was largely informal, especially given distant state and federal governments. The condom code, a set of informal norms that encouraged the use of condoms, is one instance of this informal response, which was wholly uncoordinated. Yet, it is not clear why these informal norms emerged or why they have since eroded. This paper explores how gay men in particular generated expectations and normative beliefs regarding condom (...) usage, which helped to establish the condom code as an informal norm. Furthermore, the erosion of the condom code is viewed as a result of changing expectations, which change as bio-medical means of HIV treatment and prevention develop and as online and digital communities facilitate serosorting, all of which provide alternatives to condoms as a means of prevention and their associated informal norms. Future HIV prevention campaigns should recognize the extent to which informal norms coordinate and encourage preventative behavior, as well as how beliefs and expectations alter the informal norms people adopt. (shrink)

The politics of epidemics in Chinese history not only involves competing interpretations about the meanings of disease, but also includes dynamic tensions between socio-political factors and the participants involved in emergency responses. This article examines three cases-the plague epidemic of 1949, the cholera epidemic of 1961-1965, and the meningitis epidemic of 1966-1967-to reveal the entangling political, technological, and epidemiological factors involved in ending epidemics in the People's Republic of China, while also illustrating the difficulty of charting (...) the end of an epidemic when data on disease prevalence and disease control are collected, reported, framed, and archived by political authorities. (shrink)

The aim of this study was to evaluate terminal care among hospitalized children who died of HIV/AIDS. The design was a retrospective chart review of the terminal hospitalization. The setting was a public, secondary and tertiary children's hospital in Cape Town, South Africa (SA). The patients included a consecutive series of in‐patient deaths from HIV‐related causes. The main outcome measures included: documentation of do not resuscitate (DNR) orders and comfort care plans, intensity of diagnostic and therapeutic interventions in last 24 (...) hours of life, and presence of pain and distress in last 48 hours of life. The results are based on the review of 165 out of 167 in‐patient deaths. Of those, 79% of patients died in general wards. Median age and length of stay were 4 months and 6 days respectively. A total of 84% of patients had a DNR order. DNR orders appeared simultaneously in only 41% of medical and nursing notes. Only 44% of patients had a comfort care plan. Pain and distress in the last 48 hours was documented in 55% of patients who died in the general wards. Respiratory symptomatology and painful skin conditions accounted for most discomfort. Half (36/72) the patients with pain and distress, including 16 with a comfort care plan, received no analgesia. Conclusions drawn found that, despite clinical uncertainty, doctors made tough end of life decisions that included DNR orders and comfort care plans. The lower rate of comfort care plans suggests doctors had difficulty making the transition from curative to palliative care. Many comfort care plans were incoherent and included interventions unlikely to promote patients' comfort. In light of the HIV/AIDS pandemic in SA, reforms are needed to integrate palliative care within mainstream hospital medicine. However, without adequate human resources including trained interpreters, doctors and nurses will struggle to deliver optimal terminal care in acute hospitals. (shrink)

The Last Gift is an observational HIV cure-related research study conducted with people with HIV at the end of life (EOL) at the University of California San Diego. Participants agree to voluntarily donate blood and other biospecimens while living and their bodies for a rapid research autopsy postmortem to better understand HIV reservoir dynamics throughout the entire body. The Last Gift study was initiated in 2017. Since then, 30 volunteers were enrolled who are either (1) terminally ill with a concomitant (...) condition and have a prognosis of 6 months or less or (2) chronically ill with multiple comorbidities and nearing the EOL.Multiple ethical and logistical challenges have been revealed during this time; here, we share our lessons learnt and ethical analysis. Issues relevant to healthcare research include surrogate informed consent, personal and professional boundaries, challenges posed conducting research in a pandemic, and clinician burnout and emotional support. Issues more specific to EOL and postmortem research include dual roles of clinical care and research teams, communication between research personnel and clinical teams, legally required versus rapid research autopsy, identification of next of kin/loved ones and issues of inclusion. Issues specific to the Last Gift include logistics of body donation and rapid research autopsy, and disposition of the body as a study benefit.We recommend EOL research teams to have clear provisions around surrogate informed consent, rotate personnel to maintain boundaries, limit direct contact with staff associated with clinical care and have a clear plan for legally required versus research autopsies, among other recommendations. (shrink)

Used appropriately, reliance on science distinguishes public health from policymaking driven more by theory and opinion and enhances trust in public health interventions. Evidence-based vaccine policymaking aims to control communicable disease by urging decision makers to base policies on the best available evidence rather than politics or personal views. The results of this approach, such as smallpox eradication, have been dramatic. Historically, mandatory childhood vaccination has been perhaps the most successful evidence-based tool in combating many epidemics. Philosophically, vaccination mandates correspond (...) to the legal system’s dual role in codifying what society deems undesirable behavior and declaring beneficial social norms and values consistent with understandings of the social contract. Despite their effectiveness and philosophical grounding, vaccination mandates present serious legal and ethical questions. Public health policymakers have a continuing responsibility to rely on evidence not only as a basis for generating policy, but also for evaluating and improving elements of its legal design. (shrink)