HIV/AIDS continues to constitute a serious threat to the social and physical wellbeing of African mothers and their babies. In the hardest hit countries of sub-Saharan Africa, more than 60% of all new HIV infections are occurring in women, infants and young children. Mother-to-child transmission constitutes 90% of new HIV infections among infants and young children. Most of these infections can be prevented. However, the social stigma of HIV/AIDS insidiously continues to undermine the success of prevention programs. Ironically, some attributes (...) or characteristics of prevention of mother-to-child transmission programs may in fact serve as catalysts to the stigmatization process. This paper identifies and discusses six potential initiators: Routine HIV testing, Six months exclusive breastfeeding, Incentives, Home visits, Location of PMTCT program, and PMTCT terminology. In all these areas, there are practical strategies that may be applied to reduce the chances of being stigmatized. These strategies are introduced and discussed. (shrink)

The text examines the article 11 of the Universal Declaration on Bioethics and Human Rights of UNESCO that deals with the principle of non-discrimination and non-stigmatization. Both concepts are related to the theme of human dignity, while discrimination is an inherent part of stigma: stigma does not exist if there is no discrimination. In this context, this paper aims to study the relationship between stigma, discrimination and HIV / AIDS. The study argues that to loosen the bonds that hold (...) the subjects that are attached to them is necessary questioning the broader forces - social, cultural, political and economic - that structure stigma, stigmatization and discrimination as social processes directly linked to production and reproduction of structural inequalities. (shrink)

Encouraged by the success of smoking denormalization strategies as a tobacco-control measure, public health institutions are adopting a similar approach to other health behaviors. For example, a recent controversial ad campaign in New York explicitly aimed to denormalize HIV/AIDS amongst gay men. Authors such as Scott Burris have argued that efforts like this are tantamount to stigmatization and that such stigmatization is unethical because it is dehumanizing. Others have offered a limited endorsement of denormalization/stigmatization campaigns as being (...) justified on consequentialist grounds; namely, that the potential public health benefits outweigh any stigmatizing side effects. In this paper, I examine and reject the blanket condemnation of stigmatization efforts in public health. I argue that the moral status of such efforts are best evaluated within a contractualist, as opposed to a consequentialist, framework. Contractualism in public health ethics asks whether a particular stigmatizing policy could be justified to reasonable individuals who do not know whether they will be affected by that policy. Using this approach, I argue that it is sometimes permissible for public health institutions to engage in health-related stigmatization. (shrink)

BackgroundWhile most studies on HIV/AIDS often identify stigmatization and patients’ unwillingness to access health care as critical problems in the control of the pandemic, very few studies have focused on the possible consequences of accessing health care by sero-positives. This paper examines the socio-psychological trauma patients experience in their desire to access health care in two health facilities in the Ashanti Region of Ghana.MethodsThrough participant observation, informal conversation and in-depth interviews, data were collected from health workers and clients of (...) the voluntary counselling and antiretroviral therapy units in the two hospitals.The data gathered were analysed and categorized into themes and supported with illustrative quotes obtained from health workers and clients.ResultsThe study found that the mere presence of a person at the HIV counselling centre or clinic is enough for the person to be labelled as or suspected to be HIV patient. It demonstrates that stigmatization may occur not only in the community but also overtly or covertly, in the health facility itself. Consequently, for many HIV/AIDS patients, access to antiretroviral therapy and treatment of related nosocomial infections are problematic. Besides, the study found that many clients and potential users of services were uncomfortable with the quality of care given by some health workers, especially as they overtly and covertly breached confidentiality about their clients’ health status. This has compelled many patients and potential users of the services to adopt a modus vivendi that provides them access to some care services while protecting their identity.ConclusionThe paper argues that by examining issues relating to privacy and confidentiality in the provision of care for and use of services by seropositives, more light will be shed on the whys of the limited uptake of HIV-related health care services in Ghana. (shrink)

This essay argues that informed consent remains desirable for both moral and practical reasons in regard to HIV testing by physicians. At the very least, respect for consent preserves patient control over treatment and affords the opportunity for education about the nature of HIV-related disorders. Nevertheless, there do appear to be circumstances under which involuntary testing may occur especially when health care workers may have become occupationally exposed to risk of HIV infection. To eliminate conflicts between health workers and their (...) patients, however, it is desirable to work to eliminate the stigmatizing and discriminatory effects of HIV infection that can induce persons to resist testing. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Broken Bodies and Healing Communities: The Challenge of HIV and AIDS in the South African ContextEmily Reimer-BarryBroken Bodies and Healing Communities: The Challenge of HIV and AIDS in the South African Context Edited by Neville Richardson Pietermaritzburg, South Africa: Cluster Publications, 2009. 209 pp. $12.00.The township of Mpophomeni, like many communities in South Africa, has been tragically devastated by HIV/AIDS. Christian churches in the region have responded to (...) this ongoing crisis in a variety of ways. In this collection of essays, edited by Neville Richardson, a team of international scholars from various subfields has combined ethnography and qualitative research with theology, with the goal of understanding how Christian churches have responded to the needs of the people of Mpophomeni. This book is the result of a two-year collaborative research project. The title of the book alerts the reader to two major themes of the unfolding narrative: the reality of brokenness, suffering, and sin (individual, interpersonal, social, and ecclesial) and the goal of healing (again, individual, interpersonal, social, and ecclesial). The ten chapters, individually authored, are divided thematically into three sections: Part 1, “Healing and Community: Perspectives from Zulu Culture and Religion”; Part 2, “Caring, Healing and Faith Communities”; and Part 3, “Caring and Community: Training in a Hospital Setting.” As perhaps expected, the authors’ conclusions remain ambivalent. James R. Cochrane explains: “Religion per se is not innocent of breaking bodies, which should always stand as a warning to us. But religion per se is also the source of healing; indeed, in some ways it is all about healing or wholeness, in relation to the sacred” (115). Churches in Mpophomeni have been “protective spaces” (11), “bridging communities” (91), and “broken bodies” that remember and re-member “the broken body of Jesus” (145–51). But communities are also in flux (101) and are sources of discourse that stigmatizes and shames (172).The book presents clearly argued and compelling essays that work independently and could be read or adopted for class as individual essays. The authors approach some of the same difficult questions from different vantage points, methodological foundations, and subdisciplines. For example, in the first two chapters Sidsel Roalkvam and Jone Salomonsen describe the many social problems in Mpophomeni, including poverty, unemployment, gender inequalities, sexual violence, drug and alcohol addiction, and criminal violence. But their [End Page 225] ethnographic research uncovers some of the rituals of healing that help the community to cope, including the practice of communal “strong prayer” (11–15), and uMemulo rite of passage for girls (23–37).However, I wish there were more coherent conversation between the authors of each individual essay. While Richardson explains that the research was collaborative “not only in terms of interaction between the researchers and the community but also among the researchers themselves” (ix), this collaboration between the researchers is not obvious to the reader in the final format of the book. Perhaps another book format would have more fruitfully conveyed this collaborative stance (for example, the inclusion of responses to each chapter or the addition of a roundtable discussion chapter or coauthored chapters).The ethnographic data presented in the third section is particularly rich and challenging for theology, but the authors could have spent more time unpacking, contextualizing, and analyzing the included quotations from patient–chaplain conversations. If, for example, the story of a thirty-three-year-old HIV+ man who allegedly raped a fifteen-year-old girl to give her “a good lesson for her life” so that she will not dress provocatively is “very characteristic of the material” in the study (203–5), much more needs to be said to explain how pastoral care interventions can address the stated “gender inequalities and the drastically different roles of men and women resulting in the vulnerable position of women” (206).The book is a must-read for scholars working on HIV/AIDS and Christian ethics. It could also provide supplemental readings for an undergraduate or graduate course in this area. [End Page 226]Emily Reimer-BarryUniversity of San DiegoCopyright © 2012 Society of Christian Ethics... (shrink)

Little research has explored the possible effects of government institutions in emerging economies on ethical reviews of multinational research. We conducted semi-structured, in-depth telephone interviews with 15 researchers, Research Ethics Committees personnel, and a government agency member involved in multinational HIV Prevention Trials Network research in emerging economies. Ministries of Health or other government agencies often play pivotal roles as facilitators or barriers in the research ethics approval process. Government agency RECs reviewing protocols may face particular challenges, as they can (...) lack resources, be poorly organized, have inconsistent review processes and limited expertise, and use differing definitions of national interests, including upholding national reputation and avoiding potential exploitation and stigma of the country's population. The MOH/governmental review body may be affected by power dynamics and politics in study reviews; may consider issues both related and unrelated to research ethics as understood elsewhere; and may prioritize particular diseases, treatments, or interventions over other topics/types of research. Poor communication and deeply-rooted tensions may exist between sponsor and host countries, impeding optimal interactions and reviews. Investigators must understand and plan for the potential effects of governmental agencies on multinational collaborative research, including preserving adequate time for agency review, and contacting these agencies beforehand to address issues that may arise. Better understanding of these issues can aid and advance appropriate global scientific collaboration. (shrink)

No healthcare issue has generated as much ethical debate on the relationship between the individual and society as HIV Infection. In this debate, an appeal is most often made to such principles as autonomy and confidentiality to protect individuals who are HIV positive or who have AIDS from an invasion of privacy thought to be justified by society's need for information. In the first years, this emphasis on the protection of the individual was essential. Even today, there are risks in (...) disclosing one's HIV status. However, as more and more persons become Infected, live longer, and move within the healthcare industry for non-HIV related care, as both patients and healthcare workers, the terms of the debate need to be redefined. (shrink)

This article considers the experiences of health consumers who have undergone testing for human immunodeficiency virus antibodies, T cells, and viral load. These HIV-related tests are deployed for the purposes of making definitive diagnoses; yet some test consumers experience ambiguous outcomes. Drawing on an analysis of differing end-user experiences of these tests, where consumers' knowledge reflected the multiplicity and heterogeneity in test design, the author explores how these experiences reflect particular knowledges about these tests. The article contributes to efforts analyzing (...) how health consumers are active end users co-constructing the social meaning of technologies in mutual relationship with other users. The author discusses how this new knowledge can be used to delineate a greater role for consumer evaluation of medical testing within a broader understanding of test design and performance. Relevant links are made to issues such as genetic testing and assessing claims about the efficacy of medical tests. (shrink)

O’BYRNE P and WATTS J. Nursing Inquiry 2012 [Epub ahead of print] Include, differentiate and manage: gay male youth, stigma and healthcare utilizationIn Canada, there has been a recent increase in HIV incidence among young men who have sex with men. However, gay male youth (GMY) may forego HIV testing due to fear of stigmatization. Therefore, the aim of this research was to explore the perceptions of stigma in health care within this population. The research was conducted through a (...) series of semi‐structured interviews with eight GMY aged 20–29, who frequented a gay‐friendly clinic in downtown Ottawa, Canada. In a sub‐analysis of the interviews utilizing the work of Hardt and Negri’s three‐part sequence – inclusion, differentiation and management – we found that homosexuality‐related stigmatization affects the interaction between GMY and health professionals. Interview participants perceived HIV‐related risk counselling as a manifestation of stigma. These findings reveal that the experience of stigma and stigmatization is not necessarily based on health professionals’ intentions, but rather, on patients’ perceptions of the interactions they have with health professionals. Specific modifications to the delivery of health care may help to overcome stigmatization. (shrink)

BackgroundThe issue of stigma is very important in the battle against HIV/aids in Africa since it may affect patient attendance at healthcare centres for obtaining antiretroviral medications and regular medical check-ups. Stigmatization creates an unnecessary culture of secrecy and silence based on ignorance and fear of victimization. This study was designed to determine if there is external stigmatization of people living with HIV and AIDS by health care workers at a tertiary hospital in KwaZulu-Natal province, South Africa. The (...) study investigated the impact of knowledge of HIV/aids by HCWs on treatment of patients, as well as the comfort level and attitude of HCWs when rendering care to PLWHA.MethodsA descriptive cross sectional study was designed to collect data using an anonymous self-administered structured questionnaire from 334 HCWs. The study was conducted in clinical departments of a large multidisciplinary 922-bed tertiary care teaching hospital in Durban, KZN.ResultsOverall HCWs had an above average knowledge about HIV/aids although some gaps in knowledge were identified. Tests of statistical significance showed that there was association between level of education and knowledge of HIV/aids ; occupation and knowledge of HIV/aids ; and gender and knowledge of HIV/aids. Test for comfort level was only significant for gender, with males showing more comfort and empathy when dealing with PLWHA. The study also revealed that patients were sometimes tested for HIV without informed consent before surgery, due to fear of being infected, and there was some gossiping about patients' HIV status by HCWs, thereby compromising patient confidentiality. The majority of HCWs showed a willingness to report incidents of stigmatization and discrimination to higher authorities, for better monitoring and control.ConclusionsAlthough knowledge, attitude and comfort level of HCWs taking care of PLWHA was above average, enforcement of existing antidiscrimination laws and continuing education in medical ethics and healthcare law, would greatly improve the performance of HCWs taking care of PLWHAs. More psychological support and counselling should be provided to HCWs, to further reduce the impact of stigmatization and discrimination against PLWHA. (shrink)

Ongoing global efforts to circumcise adolescent and adult males to reduce their risk of acquiring HIV constitute the largest public health prevention initiative, using surgical means, in human history. Voluntary medical male circumcision (VMMC) programs in Africa have significantly altered social norms related to male circumcision among previously non-circumcising groups and groups that have practiced traditional (non-medical) circumcision. One consequence of this change is the stigmatization of males who, for whatever reason, remain uncircumcised. This paper discusses the ethics of (...) stigma with regard to uncircumcised adolescent males in global VMMC programs, particularly in certain recruitment, demand creation and social norm interventions. Grounded in our own experiences gained while conducting HIV-related ethics research with adolescents in Kenya, we argue that use of explicit or implicit stigma to increase the number of VMMC volunteers is unethical from a public health ethics perspective, particularly in campaigns that leverage social norms of masculinity. Ongoing global efforts to circumcise adolescent and adult males to reduce their risk of acquiring HIV constitute the largest public health prevention initiative, using surgical means, in human history. VMMC programs in Africa have significantly altered social norms related to male circumcision among previously non-circumcising groups and groups that have practiced traditional (non-medical) circumcision. One consequence of this change is the stigmatization of males who, for whatever reason, remain uncircumcised. This paper discusses the ethics of stigma with regard to uncircumcised adolescent males in global VMMC programs, particularly in certain recruitment, demand creation and social norm interventions. Grounded in our own experiences gained while conducting HIV-related ethics research with adolescents in Kenya, we argue that use of explicit or implicit stigma to increase the number of VMMC volunteers is unethical from a public health ethics perspective, particularly in campaigns that leverage social norms of masculinity. (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)

Annual and cumulative incidences of HIV + and AIDS in patients reported by the AIDS Surveillance Committee of the Ministry of Health and Welfare are cited to illustrate some characteristics in Japan: nearly 59% of either HIV + or AIDS patients were infected through injection of blood products or by blood transfusion. A number of plaintiffs have sued the Japanese government and pharmaceutical companies since 1989, but no judicial decisions have yet been made. The incidence of HIV decreases for each (...) of the following routes of infection: the second highest route of transmission being heterosexual, followed by bisexual and unconfirmed or unknown cases, and less frequently homosexual, drug use and lastly via vertical transmission. The most serious bioethical problems with HIV + and AIDs patients in Japan is the social segregation of these patients. There are many emotional fears among the general public and medical personnel about AIDS because of their inadequate scientific knowledge of this disease. The Japan Hospital Association is doing The Stop AIDS Campaign and made several surveys. Japan has become increasingly aware of the importance of AIDS education and a great deal of effort is being made to enhance bioethical considerations. (shrink)

Annual and cumulative incidences of HIV+ and AIDS in patients reported by the AIDS Surveillance Committee of the Ministry of Health and Welfare are cited to illustrate some characteristics in Japan: nearly 59% of either HIV+ or AIDS patients were infected through injection of blood products or by blood transfusion. A number of plaintiffs have sued the Japanese government and pharmaceutical companies since 1989, but no judicial decisions have yet been made. The incidence of HIV decreases for each of the (...) following routes of infection: the second highest route of transmission being heterosexual, followed by bisexual and unconfirmed or unknown cases, and less frequently homosexual, drug use and lastly via vertical transmission. The most serious bioethical problems with HIV+ and AIDS patients in Japan is the social segregation of these patients. There are many emotional fears among the general public and medical personnel about AIDS because of their inadequate scientific knowledge of this disease. The Japan Hospital Association is doing The Stop AIDS Campaign and made several surveys. Japan has become increasingly aware of the importance of AIDS education and a great deal of effort is being made to enhance bioethical consideration. (shrink)

Annual and cumulative incidences of HIV + and AIDS in patients reported by the AIDS Surveillance Committee of the Ministry of Health and Welfare are cited to illustrate some characteristics in Japan: nearly 59% of either HIV + or AIDS patients were infected through injection of blood products or by blood transfusion. A number of plaintiffs have sued the Japanese government and pharmaceutical companies since 1989, but no judicial decisions have yet been made. The incidence of HIV decreases for each (...) of the following routes of infection: the second highest route of transmission being heterosexual, followed by bisexual and unconfirmed or unknown cases, and less frequently homosexual, drug use and lastly via vertical transmission. The most serious bioethical problems with HIV + and AIDs patients in Japan is the social segregation of these patients. There are many emotional fears among the general public and medical personnel about AIDS because of their inadequate scientific knowledge of this disease. The Japan Hospital Association is doing The Stop AIDS Campaign and made several surveys. Japan has become increasingly aware of the importance of AIDS education and a great deal of effort is being made to enhance bioethical considerations. (shrink)

In response to Anne L. Dalle Ave and David M. Shaw, we agree with their general argument but emphasize a moral risk of HIV disclosure in deceased donation cases: the risk of relational rupture. Because of the importance that close relationships have to our sense of self and our life plans, this kind of rupture can have long-ranging implications for surviving loved ones. Moreover, the now-deceased individual cannot participate in any relational mending. Our analysis reveals the hefty moral costs that (...) disclosure can bring, which should influence what information is given to wouldbe donors and how organ procurement coordinators approach these conversations. (shrink)

The ethical challenge is squarely focused on the question of what is owed to participants of vaccine trials who happen to become infected during the course of the trial. Not surprisingly, given the prominence of HIV/AIDS in many parts of the developing world, HIV vaccine trials have become the focal point of this debate. It is worth noting from the outset, however, that the same arguments that apply to HIV vaccines would apply to any number of microbicide trials aimed at (...) protecting women against a large variety of sexually transmitted illnesses.1 One of the controversial questions in this debate has been the issue of whether or not an infection acquired by vaccine trial participants during the course of the trial can reasonably be considered a trial related injury that ought to be subject to compensation (in the form of access to good quality AIDS treatments, including antiretrovirals). (shrink)

BackgroundOne of the next frontiers in HIV research is focused on finding a cure. A new priority includes people with HIV (PWH) with non-AIDS terminal illnesses who are willing to donate their bodies at the end-of-life (EOL) to advance the search towards an HIV cure. We endeavored to understand perceptions of this research and to identify ethical and practical considerations relevant to implementing it.MethodsWe conducted 20 in-depth interviews and 3 virtual focus groups among four types of key stakeholders in the (...) United States (PWH, biomedical HIV cure researchers, HIV clinicians, and bioethicists) to obtain triangulated viewpoints because little was known about the ethics of this topic. Each group was queried as to ethical considerations, safeguards, and protections for conducting HIV cure-related research at the EOL to ensure this research remains acceptable.ResultsAll four key stakeholder groups generally supported HIV cure-related research conducted at the EOL because of the history of altruism within the PWH community and the potential for substantial scientific knowledge to be gained. Our informants expressed that: (1) Strong stakeholder and community involvement are integral to the ethical and effective implementation, as well as the social acceptability of this research; (2) PWH approaching the EOL should not inherently be considered a vulnerable class and their autonomy must be respected when choosing to participate in HIV cure-related research at the EOL; (3) Greater diversity among study participants, as well as multi-disciplinary research teams, is necessitated by HIV cure-related research at the EOL; (4) The sensitive nature of this research warrants robust oversight to ensure a favorable risk/benefit balance and to minimize the possibility of therapeutic misconception or undue influence; and (5) Research protocols should remain flexible to accommodate participants’ comfort and needs at the EOL.ConclusionBecause of the ethical issues presented by HIV cure-related research at the EOL, robust ethical safeguards are of utmost importance. The proposed ethical and practical considerations presented herein is a first step in determining the best way to maximize this research’s impact and social value. More much inquiry will need to be directed towards understanding context-specific and cultural considerations for implementing EOL HIV cure research in diverse settings. (shrink)

Despite extensive stigma mitigation efforts, infectious disease stigma remains common. So far, little attention has been paid to the moral psychology of stigmatizing practices (i.e. beliefs, attitudes, actions) rather than the experience of being stigmatized. Addressing the moral psychology behind stigmatizing practices seems necessary to explain the persistence of infectious disease stigma and to develop effective mitigation strategies. Our article proposes building on Jonathan Haidt’s moral foundations theory, which states that moral judgements follow from intuitions rather than conscious reasoning. Conceptual (...) analysis was conducted to show how Haidt’s five moral foundations can be connected to (i) moral judgements about stigmatizing practices and (ii) stigmatizing practices themselves. We found that care/harm, fairness/cheating, loyalty/betrayal and sanctity/degradation intuitions can inform moral judgements about stigmatizing practices. Loyalty/betrayal and sanctity/degradation intuitions can sometimes also feed stigmatizing practices. Authority/subversion intuitions can inform moral judgements and stigmatizing practices towards people who disrespect authoritative rules meant to protect public health. Moral dumbfounding and posthoc reasoning might explain the persistence of stigmatizing practices. In conclusion, this study demonstrates the relevance of Haidt’s approach to infectious disease stigma research and mitigation strategies. We hope that this study motivates researchers to further test and assess this approach. (shrink)

This study’s objectives were: (1) to describe and explore the ethical dilemmas surrounding the HIV-positive person in the workplace in South Africa; and (2) to describe the Rational Interaction for Moral Sensitivity (RIMS) approach as a possible mechanism for solving these ethical dilemmas. A qualitative, exploratory and descriptive research design was used. The target populations were HIV-positive employees and occupational health nurses working for a South African company. Data collected through individual HIV-positive employee interviews and occupational health nurse workgroups were (...) analysed. The ethical dilemmas were conceptualized and described within the theoretical framework of the principles of ethics, namely, autonomy, beneficence, justice and confidentiality. To elicit a solution to the dilemmas, the data were recontextualized using the RIMS approach, a group decision-making strategy designed for the business environment. (shrink)

ABSTRACT Historically, maternal HIV research has focused on prevention of mother‐to‐child transmission and child outcomes, with little focus on the health outcomes of mothers. Over the course of the HIV epidemic, the approach to including pregnant women in research has shifted. The current landscape lends itself to reviewing the public health ethics of this research. This systematic review aims to identify ethical barriers and considerations for including pregnant and postpartum women living with HIV in treatment adherence and retention research. We (...) completed a systematic literature review following PRISMA guidelines with analysis using a relational ethics perspective. The included studies (n = 7) identified ethical barriers related to (a) women research participants as individuals, (b) partner and family dynamics, (c) community perspectives on research design and conduct, and (d) policy and regulatory implications. These broader contextual factors will yield research responsive to, and respectful of, the needs of pregnant and postpartum women living with HIV. While current regulatory and policy environments may be slow to change, actions can be taken now to foster enabling environments for research. We suggest that a relational approach to public health ethics can best support the needs of pregnant and postpartum women living with HIV; acknowledging this population as systematically disadvantaged and inseparable from their communities will best support the health of this population. (shrink)

The stigmatization of some groups of people, whether for some characteristic they possess or some behavior they engage in, will initially strike most of us as wrong. For many years, academic work in public health, which focused mainly on the stigmatization of HIV-positive individuals, reinforced this natural reaction to stigmatization, by pointing out the negative health effects of stigmatization. But more recently, the apparent success of anti-smoking campaigns which employ stigmatization of smokers has raised questions (...) about whether stigmatization may sometimes be justified, because of its positive effects on public health. Discussion of the issue so far has focused on consequences, and on some Kantian considerations regarding the status of the stigmatized. In this article, I argue that further Kantian considerations regarding the treatment of the general public (the potential stigmatizers) also count against any public health policy involving stigmatization. Attempts to encourage stigmatization are likely to fail to appeal to the rational decision-making abilities of the general public, and the creation of stigmatized groups (even if they are stigmatized for their voluntary behavior) is an obstacle to the self-improvement of members of the general public. (shrink)

The reasons for judgment by the Supreme Court of Canada on the appeal in Mabior (2012 SCC 47) fail to address or resolve a number of significant questions. The reasons acknowledge the fundamental role of sexual consent in protecting sexual autonomy, equality, and human dignity, but do not use the law of consent as a tool to assist the Court in crafting a fresh approach to the issue on appeal. Instead the Court adopts the same general approach to analysis of (...) the elements of aggravated sexual assault committed by fraud it used in 1998 in Cuerrier. Fifteen years later, it should be possible to re-conceptualize the problem in a more straightforward manner that reflects Charter values, fundamental common law principles, recent developments in sexual assault law, and the limitations and uncertainties of current HIV treatment and diagnosis. -/- Ironically, the two pronged legal test ultimately proposed by the Court -- non-disclosure of HIV-positive status and a “realistic possibility of transmission,” is likely to give false confidence to individuals who adhere to a regime of anti-retroviral treatment, use good quality latex condoms, and routinely conceal their HIV-positive status from their sexual partners. Research shows that HIV viral loads fluctuate widely in response to a myriad of factors. An inevitable consequence of reliance on the Mabior test will be accused who are shocked to find themselves charged under s. 273, charges that would not apply had they disclosed their HIV-positive status to their sexual partner(s). There are further practical consequences. Non-disclosure will tend to increase the risk of transmission because non-HIV-positive sexual partner(s) will not fully appreciate the actual hazards of improper condom use. As a direct result, careless sexual practices will be more common. And finally, the decision will not contribute to reducing the social stigma that haunts the lives of those who are HIV-positive -- even those who are skilled at deceit. That stigma will not be reduced or eliminated by a ruling that can be seen as tacitly validating stigmatization and fear by appearing to permit infected individuals to pretend they are not HIV-positive when they know or suspect this to be false. Deceit harms the human dignity of the deceived and deceiver alike, and does nothing to build authentic social trust and cohesion. For all these reasons, the problem on appeal in Mabior requires a different approach. This article proposes one. (shrink)

Despite abundant evidence associating CD38 overexpression and CD4 T cell depletion in HIV infection, no causal relation has been investigated. To address this issue, a series of mechanisms are proposed, supported by evidence from different fields, by which CD38 overexpression can facilitate CD4 T cell depletion in HIV infection. According to this model, increased catalytic activity of CD38 may reduce CD4 T cells’ cytoplasmic nicotin‐amide adenine dinucleotide (NAD), leading to a chronic Warburg effect. This will reduce mitochondrial function. Simultaneously, CD38's (...) catalytic products ADPR and cADPR may be transported to the cytoplasm, where they can activate calcium channels and increase cytoplasmic Ca2+ concentrations, further altering mitochondrial integrity. These mechanisms will decrease the viability and regenerative capacity of CD4 T cells. These hypotheses can be tested experimentally, and might reveal novel therapeutic targets. (shrink)

Severe tour guide stigma is a significant problem hindering tourism development. Based on self-identity threat and moral disengagement theory, this study analyzed the relationship between tour guide stigmatization and tour guides’ interpersonal deviance behavior. Survey data collected from 241 tour guides at three different points in time showed that tour guide stigmatization was positively related to tour guides’ interpersonal deviance behavior and that self-identity threat mediated this effect. The results also show that moral disengagement moderated the effect of (...) tour guides’ self-identity threat on interpersonal deviance behavior, as well as the indirect effect of tour guide stigmatization on tour guides’ interpersonal deviance behavior via self-identity threat. This study enriches theoretical research on tour guide stigmatization and offers practical suggestions for solving stigmatization problems for tour guides and organizations. (shrink)

In recent intervention campaigns sensitizing about harmful practices in eastern Africa, the beliefs and institutions of rural populations are marked out: culture is the culprit. This article concentrates on the most targeted region, Sukuma-speaking communities in Tanzania, to verify the stigmatizing impact of institutions: whether bridewealth treats women as commodities, whether children with nsebu disorder are stigmatized, and why children living with albinism are stigmatized. Complementing the situational analysis of power relations, cultural analysis approaches institutions as established practices in a (...) group and as generated from the palette of experiential frames constituting the cultural system prevailing in that group. The method’s sensitivity to intracultural diversity highlights the local capacity of applying cultural logics, ethically framing situations and creating new institutions, for instance by female healers protecting their clients against stigmatization. The method permits to conclude, for the cases studied, that institutions categorizing people prevent rather than cause the discreditable social status known as stigma. (shrink)

Abnormal body weight has been subject to varying assessments over time. The stigmatization of obesity for aesthetic reasons only began in the Western world in the second half of the 19th century, and in the 20th century its association with increased mortality was recognized. Body weight is associated with social and cultural meanings that affect human identity, and discussions about it generate considerable emotion. Words used to refer to body weight can influence people's self-perceptions, attitudes and behavior. Experimental studies (...) have shown that even brief exposure to body-related words can trigger automatic judgements and evaluations about body shape and weight. These negative and often implicit associations are symptomatic of a wider social stigma associated with weight. Recent evidence points to globalization and the presence of weight stigma in both developed and developing countries around the world. Numerous studies further indicate that weight shaming does not lead to weight reduction but rather to weight gain. Therefore, from a public health perspective, it is important to develop messages that are at least non-stigmatizing. The aim of this article is to present existing research on stigmatizing content in the media, as well as to analyze three selected social campaigns related to obesity. (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)

Predictive interventions and practices are becoming a defining feature of medicine. The author points out that according to the inner logic and external supporters of modern medicine, participating in healthcare increasingly means participating in knowing, sharing, and using of predictive information. At the same time, the author addresses the issue that predictive information may also have problematic side effects like overdiagnosis, health-related anxiety, and worry as well as impacts on personal life plans. The question is raised: Should we resort to (...) stigmatization if doing so would increase participation in predictive interventions, and thereby save healthcare costs and reduce morbidity and premature death? The paper concludes that even if such a strategy cannot be ruled out in some forms and contexts, we ought to be very cautious about the dangers of shame and stigmatization. (shrink)

The Tuskegee Syphilis Study is often cited as a major reason for low research participation rates among racial/ethnic minorities. We use data from a random-digit-dial telephone survey of 510 African Americans and 253 Latinos drawn from low income Los Angeles neighborhoods to investigate associations between knowledge of the study and endorsement of HIV/aids conspiracy theories. Results indicate African Americans were significantly more likely than Latinos to endorse HIV/aids conspiracy theories and were more aware of the study. Nevertheless, few Americans and (...) Latinos had ever heard of Syphilis Study suggesting that awareness is not a major factor in low participation rates. (shrink)

This article reflects on securitization efforts with respect to ‘killer robots’, known more impartially as autonomous weapons systems (AWS). Our contribution focuses, theoretically and empirically, on the Campaign to Stop Killer Robots, a transnational advocacy network vigorously pushing for a pre-emptive ban on AWS. Marking exactly a decade of its activity, there is still no international regime formally banning, or even purposefully regulating, AWS. Our objective is to understand why the Campaign has not been able to advance its disarmament agenda (...) thus far, despite all the resources, means and support at its disposal. For achieving this objective, we challenge the popular assumption that strong stigmatization is the universally best strategy towards humanitarian disarmament. We investigate the consequences of two specifics present in AWS, which set them apart from processes and successes of the campaigns to ban anti-personnel landmines, cluster munitions, and laser-blinding weapons: the complexity of AWS as a distinct weapons category, and the subsequent circumvention of its complexity through the utilization of pop-culture, namely science fiction imagery. We particularly focus on two mechanisms through which such distortion has occurred: hybridization and grafting. These provide the conceptual basis and heuristic tools to unpack the paradox of over-securitization: success in broadening the stakeholder base in relation to the first mechanism and deepening the sense of insecurity in relation to the second one does not necessarily lead to the achievement of the desired prohibitory norm. In conclusion, we ask whether it is not the time for a more epistemically-oriented expert debate with a less ambitious, lowest common denominator strategy as the preferred model of arms control for such a complex weapons category. (shrink)

Background The world has come closer than ever to discovering a viable HIV vaccine. However, it remains less certain whether HIV vaccines should be made available to participants and communities in which trials are run no or subsidized cost. Hence the essence of this inquiry.Methodology This is a case study design using in-depth interviews (IDI) and focus group discussions (FGD) with researchers of HIV vaccine trials, institutional review board (IRB) members, HIV advocates, a policy maker, and members of community advisory (...) board (CAB) in Tanzania. Participants were purposively selected and data thematically analyzed using MAXQDA software.Results Hosting a vaccine trial and the financial incapacity of individuals at increased risk of HIV were among the reasons in favor of free access to HIV vaccines. In contrast, the view that vaccines should be provided at a subsidized cost was related to high costs of vaccine development, financial return expectations by investors, and the fear of labeling the free vaccine as less important. Moreover, apart from governments and international organizations, well-off individuals could share the cost burden.Conclusion Stakeholders engaging in active discussion about sharing the viable vaccine ought to take the aforementioned concerns into account and ensure unhindered access to individuals and host communities in Tanzania and beyond. (shrink)

The principle of individual medical confidentiality is one of the moral principles that Africa inherited unquestioningly from the West as part of Western medicine. The HIV/AIDS pandemic in Southern Africa has reduced the relevance of the principle of individual medical confidentiality. Individual medical confidentiality has especially presented challenges for practitioners among the Bantu communities that are well known for their social inter-connectedness and the way they value their extended family relations. Individual confidentiality has raised several unforeseen problems for persons living (...) with HIV/AIDS, ranging from stigma and isolation to feelings of dejection as it drives them away from their families as a way of trying to keep information about their conditions confidential. The involvement of family members in treatment decisions is in line with the philosophy of Ubuntu and serves to respect patients’ and families’ autonomy while at the same time benefiting the individual patient. (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)

In this article I read textual metaphors of ‘untouchability’ in ‘post-AIDS’ representation as an erasure of structures that condition HIV stigmatization in India. Throughout, my discussion is contextualised by the political economy of HIV and AIDS, which has been productive of particular modern sexual subjects. In the film My Brother…Nikhil, the stigmatization of Nikhil, a gay Indian man living with HIV, is constituted through visual and verbal caste metaphors, which draw on existing subject positions that are elided as (...) ‘traditional’, residual, and receding. This stigma is resolved textually through parental acceptance of the gay protagonist and his partner, projecting stigma as traditional and modernity as the resolution. Such metaphors of ‘untouchability’ prevent the representation of queer Dalit subjects in contexts of HIV and AIDS. Yet if addressing shame and social stigma are key to HIV treatment and prevention programmes, caste cannot be set aside simply as a metaphor. Expanding to include textual representations of queer Dalit subjectivity, the article reads a novel, The Boyfriend, and a poem, “Gandu Bagicha,” to show ways in which caste stigma and homophobia intersect in contexts of seroconversion risk. (shrink)

BackgroundCritical public health measures implemented to mitigate the spread of the novel coronavirus disease (COVID-19) pandemic have disrupted health research worldwide, including HIV prevention research. While general guidance has been issued for the responsible conduct of research in these challenging circumstances, the contours of the dueling COVID-19 and HIV/aids pandemics raise some critical ethical issues for HIV prevention research. In this paper, we use the recently updated HIV Prevention Trials Network (HPTN) Ethics Guidance Document (EGD) to situate and analyze key (...) ethical challenges related to the conduct of HIV prevention research during the COVID-19 pandemic as well as identify potential areas for refinement of the guidance document based on this unprecedented state of affairs.Main bodyNecessary actions taken for HIV prevention research studies due to the COVID-19 pandemic involve an array of ethical issues including those related to: (1) risk mitigation; (2) behavior change; (3) compounding vulnerability; (4) community engagement; (5) trial reopening; and 6) shifting research priorities.ConclusionsIn the context of the dueling HIV and COVID-19 global pandemics, research teams and sponsors must be nimble in responding to the rapidly changing environment by being sensitive to the associated ethical issues. The HTPN EGD provides a rich set of tools to help identify, analyze and address many of these issues. At the same time, future refinements of the HPTN EGD and other research ethics guidance could be strengthened by providing explicit advice regarding the ethical issues associated with disrupted research and the reopening of studies. In addition, additional consideration should be given to appropriately balancing domains of risk (e.g., physical versus social), addressing the vulnerability of research staff and community partners, and responding to un-anticipatable ancillary care needs of participants and communities. Appropriately addressing these issues will necessitate conceptual work, which would benefit from the careful documentation of the actual ethical issues encountered in research, the strategies implemented to overcome them, and their success in doing so. Throughout all of these efforts, it is critical to remember that the HIV pandemic not be forgotten in the rush to deal with the COVID-19 pandemic. (shrink)

Stigma can lead to poor health outcomes. At the same time, people who are perceived as unhealthy may experience stigma as the result of that perception. As part of a larger project examining discrimination on the basis of health status or “healthism,” we explore the role of stigma in producing disadvantage based on health status. Specifically, we look to the principles of health equality and health justice. An intervention violates health equality when it is driven by animus, which can be (...) the result of stigma. Additionally, laws and policies offend health justice when they worsen health outcomes or they create or deepen health disparities. An intervention that produces stigma — whether intentionally or unintentionally — may offend health justice by making people worse off, in absolute or in comparative terms. Stigma-related health laws and policies can therefore be healthist in at least two ways. We therefore conclude that stigma should neither be the basis, nor the product, of efforts to improve health. (shrink)

Intense scientific work on HIV/AIDS has led to the development of effective combination drug therapies and there is hope that effective vaccines will soon be produced. However, the majority of people with HIV/AIDS in the world are not benefiting from such advances because of extreme poverty. This article focuses on the pandemic as a reflection of a complex trajectory of social and economic forces that create widening global disparities in wealth and health and concomitant ecological niches for the emergence of (...) new infectious diseases. While the biomedical approach to HIV/AIDS is necessary, has prolonged the lives of many individuals and could offer much at the level of population health, it cannot, in isolation, improve the health of populations. To achieve the latter will require understanding and addressing the deeper social causes of pandemics. Broadening the discourse on ethics to include public health ethics and the ethics of international relations could contribute to reducing the impact of the pandemic and to preventing the emergence of new infectious diseases in the future. (shrink)

The global response to managing the spread of HIV has recently undergone a significant shift with the advent of ‘treatment as prevention’, a strategy which presumes that scaling-up testing and treatment for people living with HIV will produce a broader preventative benefit. Treatment as prevention includes an array of diagnostic, technological and policy developments that are creating new understandings of how HIV circulates in bodies and spaces. Drawing on the work of Michel Foucault, we contextualize these developments by linking them (...) to systems of governance and discursive subjectivation. The goal of this article is to problematize the growing importance of viral suppression in the management of HIV and the use of related surveillance technologies. For people living with HIV, we demonstrate how treatment-as-prevention’s emphasis on individual and collective viral load is transforming the performative dimensions of embodied risk, affect, subjectivity and sex. (shrink)

HIV/AIDS strikes with the greatest frequency in sub-Saharan Africa, a region lacking resources to deal with this epidemic. To keep millions more people from dying, wealthy countries must provide more help. Yet deeply ingrained biases may distance the sick from those who could provide far more aid. One such prejudice is viewing disease as punishment for sin. This 'punishment theory of disease" ascribes moral blame to those who get sick or those with special relations to them. Religious versions hold that (...) God punishes them in order to castigate, encourage virtue, warn, rehabilitate, or maintain some cosmic order. Its various religious and secular forms are untenable; they lack cogency, risk blaming people unjustly, and jeopardize compassionate care for people. These views are not only irrational but also dangerous because they influence policies and cost lives. We need to cooperate and respond as befits this global public-health disaster and not engage in the misguided and bad faith activity of dividing the world into the blameworthy and blameless. (shrink)

HIV stigma and fears surrounding the disease pose a challenge for public health interventions, particularly those that target pregnant women. In order to reduce stigma and improve the lives of vulnerable populations, researchers have recognized a need to integrate different types of support at various levels. To better inform HIV interventions, the current study draws on social-ecological and evolutionary theories of reproduction to predict stigma and fear of contracting HIV among pregnant women in South India. The aims of this study (...) were twofold: compare the social-ecological model to a modified maternal-fetal protection model and test a combined model that included strong predictors from each model. The study took place in 2008–2011 in Mysore District, Karnataka, India. Using data from a cross-sectional survey and biological indicators of health, we statistically modeled social-ecological variables representing individual, interpersonal, and community/institutional levels. Participants were 645 pregnant women. The social-ecological and combined models were the best-fitting models for HIV-related stigma, and the combined model was the best fit for HIV-related fear. Our findings suggest that combining reproductive life history factors along with individual, interpersonal, and community/institutional factors are significant indicators of HIV-related stigma and fear. Results of this study support a multifaceted approach to intervention development for HIV-related stigma and fear. The combined model in this study can be used as a predictive model for future research focused on HIV stigma and fear, with the intent that dual consideration of social-ecological and evolutionary theories will improve public health communication efforts. (shrink)

Ethical challenges surrounding the implementation of male circumcision as an HIV prevention strategyResearchers have been exploring the possibility of a correlation between male circumcision and lowered risk of HIV infection almost since the beginning of the HIV/AIDS epidemic.1 Results from a randomised controlled trial in South Africa in 2005 indicate that male circumcision protects men against the acquisition of HIV through heterosexual intercourse,2 confirming the findings from 20 years of observational studies.3 Circumcised men in the South African trial were 60% (...) less likely to acquire HIV than their uncircumcised counterparts. A mathematical modelling study, based on the South African trial, estimates that the practice of male circumcision could avert two million new HIV infections and 300 000 HIV-related deaths over the next 10 years in sub-Saharan Africa.4 More recently, two randomised controlled trials in Kisumu, Kenya and Rakai, Uganda showed, respectively, 53% and 48% reductions in HIV acquisition among circumcised men than uncircumcised men in the trial.5 These results strongly suggest that male circumcision could play an important role in the struggle against the continued rise in new HIV infections. However, as observers noted at the 2006 XVI International AIDS Conference in Toronto, Canada, excitement about the potential epidemiological impact has overshadowed the debate over the difficult translation of research on male circumcision, into policy and practice.6 Similar calls for caution have been raised before and elsewhere.7,8The topic of male circumcision carries an enormous amount of ethical baggage. Male infants, worldwide, are circumcised for various medical, social and/or religious reasons. Circumcision is a cultural act and a surgical procedure; medical reasons are not the only reasons to circumcise that people have found and continue to find as compelling. Benatar and Benatar9 have argued that—when …. (shrink)

The situation and human rights of people living with HIV and AIDS were explored through focus groups in five African countries . A descriptive qualitative research design was used. The 251 informants were people living with HIV and AIDS, and nurse managers and nurse clinicians from urban and rural settings. NVivo™ software was used to identify specific incidents related to human rights, which were compared with the Universal Declaration of Human Rights. The findings revealed that the human rights of people (...) living with HIV and AIDS were violated in a variety of ways, including denial of access to adequate or no health care/services, and denial of home care, termination or refusal of employment, and denial of the right to earn an income, produce food or obtain loans. The informants living with HIV and AIDS were also abused verbally and physically. Country governments and health professionals need to address these issues to ensure the human rights of all people. (shrink)