Developing World Bioethics, Volume 22, Issue 1, Page 53-62, March 2022.

This article examines the home rapid HIV test as a new practice of US biocitizenship. Via an analysis of discourse surrounding self-diagnostics, I conclude that while home HIV tests appear to expand consumer rights, they are in fact the vanguard of a new form of self-testing that carries a moral urgency to protect one’s own body and to manage societal risk. In addition, these tests extend biomedical authority into the private domain, while appearing to do the exact (...) opposite. Furthermore, access to these tests may be stratified, contradicting the intent expressed by the manufacturer to reach populations in need of it most and reinforcing stigma against them. Lastly, diagnostics such as the rapid home HIV test represent new obligations for surveillance of one’s own health and that of others. The new public health effort to test the population at large has given rise to a new ‘risky’ population: the untested bodies. (shrink)

The aim of this study was to assess the attitudes of Turkish pregnant women and antenatal health care providers towards prenatal HIV testing. A self-administered questionnaire was used. The relationships between the different groups' knowledge and attitudes were analysed by using the chi-squared statistic. A total of 494 pregnant women and 181 care providers participated. Forty-four per cent of the pregnant women thought that prenatal HIV testing should be mandatory, and 84% of the health care providers thought (...) it should be performed routinely or be mandatory. The majority of the pregnant women (74%) and half of the care providers agreed that the test results should be disclosed first to the pregnant woman. The study results also revealed that most of the prenatal care providers would not protect pregnant women's autonomy and privacy, contrary to the pregnant women's own preferences. It is essential to establish national prenatal HIV testing policies in order to prevent unethical practices and ensure satisfaction for pregnant women and health care providers. (shrink)

Home diagnostic testing is becoming part of the modern medical landscape, but many ethical and policy questions remain unresolved. Most of them first surfaced during the long regulatory deliberations over the home HIV test, the first home test for a contagious illness sold in the United States. Between 1989 and 2012, federal regulators and their consultants debated the ideal metrics for such a test, its benefits, and its potential harms for both individuals and communities. Ultimately, two iterations of the (...) home HIV test were marketed in the United States; neither one of them changed the course of the national HIV epidemic, as hoped. This failure has powerful implications for home testing for other contagious diseases. (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)

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)

In lieu of an abstract, here is a brief excerpt of the content:HIV, Art, and a Journey toward Healing:One Man's StoryJulia Kellman (bio)Some of the territory is wilder and reports do not tally. The guides are good for only so much. In these wild places I become part of the map, part of the story, adding my versions there. This Talmudic layering of story on story, map on map, multiplies possibilities, but also warns me of the weight of accumulation. I (...) live in one world—material, seemingly solid—and the weight of that is quite enough.1I have just reread anthropologist Ruth Behar's2 essay, "Anthropology That Breaks Your Heart." It started me thinking about several things—the outer limits of psychic pain, for example, or the relationship of the researcher and the researched, of bearing witness and giving testimony, and of the "ethnographic experience of talking, listening, transcribing, translating, and interpreting" that forms the core of enquiry about people and their lives.3 What can I say, I wonder, to touch readers in such a way that they see the indispensable truth in the individual stories that develop from such enquiries? How can my role as interpreter and witness lead to the understanding that the buffeting winds of lived experience (those of the researcher and of those who are researched) are not inconveniences but an essential quality of humanistic research? How can I use the accretion of stories that make up my research and my life (as if there were a difference), I muse, as I sit at my computer screen reading a text as "it in its turn reads me," as the writer Jeanette Winterson4 describes this experience. For over the years, I, too, not only have come to feel this pulse of the systole and diastole of telling and being told, but I have also used this alternating relationship to develop insight into the nature of the connection of researcher and researched, teacher and taught.There are two main narratives that form the core of this particular undertaking—one personal and the other the result of informal conversations, [End Page 33] formal interviews, casual interactions, social events, and interchanges during the art class for people with HIV/AIDS that I teach weekly at a local hospital. The stories both probe the mystery of disease, expression, and the search for coherence, and, in my case, the role of "the wild places on the map"5 where the researcher/writer adds her witness and testimony to the narrative to become part of the story.Individual ExperienceBefore we begin this discussion of individual experience, art, and illness, it is important to point out that there are only two general types of humanities enquiry: One enumerates, compares and contrasts, creates and tests hypotheses, reads literature, and/or examines the minutiae of materials or systems of one sort or another. The other is engaged in exploring the individual, the idiosyncratic, and the unique. Its subject is that which is particular. My research consists of the second type, qualitative to its core, and deeply sunk in the narrative, personal world of lived experience.The privacy of individual situations, our utter singularity, is one of the factors that most marks our lives as creatures. We can share our stories, describe our impressions, explain our sensations, but unless we participate in an actual experience in which our boundaries momentarily disappear, the most we can hope for is the simultaneous partaking of similar feelings with a sensitive, empathetic companion in what philosopher-sociologist Alfred Schutz6 describes as a We-relationship, an intersubjective experience that leads to sharing time, mutuality, and growing old together. Thus the ticklish nature of achieving actual interpersonal congruence makes enquiries into the specifics of actual lived experience difficult. If one is to learn anything useful from such considerations, one must focus on the individual and the story of his/her particular life journey in an intimate, extended, multifaceted manner and content one's self with the fact that all one will ever be able to report about in such an undertaking are discrete events and single people, never grand numerical accumulations or demographically significant quantities.Researcher's DisclaimerFor a reader to orient herself in... (shrink)

Recent social and cultural theory has emphasized that in risk culture the achievement of a reflexive self-identity is a key resource, for example, in terms of employment, citizenship and intimacy. Commentators on shifts in the organization of health have also stressed the significance of achieving a self-reflexive identity. So, for example, knowing, self-monitoring subjects have emerged as optimal citizens in relation to health. While there is certainly some critical commentary on these kinds of moves, nevertheless reflexive sexual (...) subjects in relation to health have received less critical attention. In this article, through an analysis of HIV antibody testing and, in particular, by looking at the making of reflexivity through the practice of testing, I consider the emergence of a heterosexuality defined in terms of reflexivity. In so doing I suggest that reflexivity should not be understood - as many commentators suggest - as an effect but rather as constitutive of risk culture. (shrink)

ABSTRACTBuilding trust between researchers and communities involved in research is one goal of community engagement. This paper examines the implications of community engagement for trust within communities, including trust among community volunteers who assist with research and between these volunteers and other community members. We describe the experiences of two groups of community volunteers recruited as part of an HIV and TB intervention trial in Malawi: cluster representatives, recruited both to act as key informants for TB suspects and mortality reporting (...) and to identify and report community concerns, and community counsellors, recruited to provide semi-supervised HIV self-testing. We examine tensions experienced due to playing multiple roles, and the implications of volunteer responsibilities for short- and long-term community relationships. Data was collected through a workshop, in-depth interviews and focus group discussions with volunteers and community members. While the volunteer system init... (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)

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)

This chapter contains sections titled: HIV Testing HIV Infection: Harm to Self or Harm to Others Access to Experimental Drugs and the Ethics of Research Clinical Trials Developing Preventive Vaccines Affordable Access to Life‐preserving Medication HIV Infection in Health‐care Professionals and Patients Final Remarks References Further reading.

In this article we aim to assess the ethical desirability of self-test diagnostic kits for influenza, focusing in particular on the potential benefits and challenges posed by a new, mobile phone-based tool currently being developed by i-sense, an interdisciplinary research collaboration based at University College London and funded by the Engineering and Physical Sciences Research Council. Our study adopts an empirical ethics approach, supplementing an initial review into the ethical considerations posed by such technologies with qualitative data from three (...) focus groups. Overall, we map a range of possible considerations both for and against the use of such technologies, synthesizing evidence from a range of secondary literature, as well as identifying several new considerations previously overlooked. We argue that no single consideration marks these technologies as either entirely permissible or impermissible but rather tools which have the potential to incur certain costs and benefits, and that context is important in determining these. In the latter stages of the article, we explain how developers of such technologies might seek to mitigate such costs and reflect on the possible limitations of the empirical ethics method brought out during the study. Not applicable. (shrink)

ABSTRACTDiagnostic self‐testing devices are being developed for many illnesses, chronic diseases and infections. These will be used in hospitals, at point‐of‐care facilities and at home. Designed to allow earlier detection of diseases, self‐testing diagnostic devices may improve disease prevention, slow the progression of disease and facilitate better treatment outcomes. These devices have the potential to benefit both the individual and society by enabling individuals to take a more proactive role in the maintenance of their health and (...) by helping society improve health and reduce health costs. However, the full implications of future home‐based diagnostic technology for individuals and society remain unclear due to their novelty.We argue that the development of diagnostic tools, especially for home use, will heighten a number of ethical challenges. This paper will explore some of the ethical implications of home‐based self‐testing diagnostic devices for the autonomous and relational dimensions of the person. This will be facilitated by examining the impact of diagnostic devices for individual autonomy, for the delivery of accurate diagnosis and for the personal significance of the information for the user. The latter will be examined using Charles Taylor's view of personhood and his emphasis on human agency and interpretation.While the ethical issues are not necessarily new, the development of home‐based self‐testing diagnostic devices will make issues regarding autonomy, accuracy of information and personal significance more and more demanding. This will be the case particularly when an individual's autonomous choices come into conflict with the person's relational responsibilities. (shrink)

Diagnostic self-testing devices are being developed for many illnesses, chronic diseases and infections. These will be used in hospitals, at point-of-care facilities and at home. Designed to allow earlier detection of diseases, self-testing diagnostic devices may improve disease prevention, slow the progression of disease and facilitate better treatment outcomes. These devices have the potential to benefit both the individual and society by enabling individuals to take a more proactive role in the maintenance of their health and (...) by helping society improve health and reduce health costs. However, the full implications of future home-based diagnostic technology for individuals and society remain unclear due to their novelty. We argue that the development of diagnostic tools, especially for home use, will heighten a number of ethical challenges. This paper will explore some of the ethical implications of home-based self-testing diagnostic devices for the autonomous and relational dimensions of the person. This will be facilitated by examining the impact of diagnostic devices for individual autonomy, for the delivery of accurate diagnosis and for the personal significance of the information for the user. The latter will be examined using Charles Taylor's view of personhood and his emphasis on human agency and interpretation. While the ethical issues are not necessarily new, the development of home-based self-testing diagnostic devices will make issues regarding autonomy, accuracy of information and personal significance more and more demanding. This will be the case particularly when an individual's autonomous choices come into conflict with the person's relational responsibilities. (shrink)

Although self‐testing apps, a form of mobile health (mHealth) apps, are often marketed as empowering, it is not obvious how exactly they can empower their users—and in which sense of the word. In this article, I discuss two conceptualisations of empowerment as polar opposites—one in health promotion/mHealth and one in feminist theory—and demonstrate how both their applications to individually used self‐testing apps run into problems. The first, prevalent in health promotion and mHealth, focuses on internal states (...) and understands empowerment as an individual process. However, this version of empowerment has been accused of paternalism and responsibilisation. The second, feminist version considers structural conditions and foregrounds collective, political change, whose realisation is not obviously attainable for an individually used app. By pointing out the flaws of the positions that focus on either internal states or external conditions, and by engaging with theory from critical phenomenology, I argue that the interplay between them is where empowerment can take place. I propose to formulate empowerment in phenomenological terms as a shift in being‐in‐the‐world and discuss how this conceptualisation of empowerment would avoid the criticism of previous empowerment narratives while being realisable by self‐testing apps. (shrink)

Following the growing economic relevance of mobile health (mHealth) and the increasing global prevalence of dementia, self-testing apps for dementia and mild neurocognitive disorder (MCD) have been developed and advertised. The apps’ promise of a quick and easy tool has been criticized in the literature from a variety of angles, but as we argue in this article, the celebratory characterization of self-testing also stands in disbalance to the various kinds of fears that may be connected to (...) taking the test. By drawing on Sara Ahmed’s phenomenological theory on emotions and by referring to illustrative experiences from two users with a particular dementia self-testing app, we explore four dimensions of fear derived from phenomenology: performative, ontological, embodied, and temporal dimensions. We argue that fear (1) motivates one to take the self-test and to try to take control over one’s health; (2) is shaped by and shapes the ways in which we make sense of ourselves and others as cognitively deficient; (3) constructs and is constructed by our differently embodied presence in the world; and that (4) testing makes a fearful future self as cognitively deficient more tangible. In outlining these different dimensions of fear, this article expands the understanding of the meaning of experiencing self-testing in comparison to the mostly quantitative literature on this topic. (shrink)

Empowerment, an already central concept in public health, has gained additional relevance through the expansion of mobile health (mHealth). Especially direct-to-consumer self-testing app companies mobilise the term to advertise their products, which allow users to self-test for various medical conditions independent of healthcare professionals. This article first demonstrates the absence of empowerment conceptualisations in the context of self-testing apps by engaging with empowerment literature. It then contrasts the service these apps provide with two widely cited (...) empowerment definitions by the WHO, which describe the term as a process that, broadly, leads to knowledge and control of health decisions. We conclude that self-testing apps can only partly empower their users, as they, we argue, do not provide the type of knowledge and control the WHO definitions describe. More importantly, we observe that this shortcoming stems from the fact that in the literature on mHealth and in self-testing marketing, empowerment is understood as a goal rather than a process. This characterises a shift in the meaning of empowerment in the context of self-testing and mHealth, one that reveals a lack of awareness for relational and contextual factors that contribute to empowerment. We argue that returning to a process-understanding of empowerment helps to identify these apps’ deficits, and we conclude the article by briefly suggesting several strategies to increase self-testing apps’ empowerment function. (shrink)

Should a growing market for genetic self-tests be welcomed or feared? From the point of view of personal autonomy the increasing availability of predictive health information seems promising. Yet it is frequently pointed out that genetic information about future health may cause anxiety, distress and even loss of “life-hopes.” In this article the argument that genetic self-tests undermine personal autonomy is assessed and criticized. I contend that opportunities for autonomous choice are not reduced by genetic information but by (...) misperceptions and misunderstandings of the results of genetic tests. Since the interpretation of genetic information is sometimes distorted by the information provided about the genetic products, more attention should be given to deceitful marketing that overblows the utility of genetic products. Yet personal autonomy is reduced neither by genetic tests nor by genetic information and there is consequently no compelling case for the conclusion that genetic self-tests should be prohibited. (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)

This paper aims to critique the phenomenon of advanced patient autonomy and choice in healthcare within the specific context of self-testing devices. A growing number of self-testing medical devices are currently available for home use. The premise underpinning many of these devices is that they assist individuals to be more autonomous in the assessment and management of their health. Increased patient autonomy is assumed to be a good thing. We take issue with this assumption and argue (...) that self-testing provides a specific example how increased patient autonomy and choice within healthcare might not best serve the patient population. We propose that current interpretations of autonomy in healthcare are based on negative accounts of liberty to the detriment of a more relational understanding. We also propose that Kantian philosophy is often applied to the healthcare arena in an inappropriate manner. We draw on the philosophical literature and examples from the self-testing process to support these claims. We conclude by offering an alternative account of autonomy based on the interrelated concepts of relationality, care and responsibility. (shrink)

Despite recent advances in ways to prevent transmission of HIV from a mother to her child during pregnancy, infants continue to be born and become infected with HIV, particularly in southern Africa where HIV prevalence is the highest in the world. In this region, emphasis has shifted from voluntary HIV counselling and testing to routine testing of women during pregnancy. There have also been proposals for mandatory testing. Could mandatory testing ever be an option, even in (...) high-prevalence settings? Many previous examinations of mandatory testing have dealt with it in the context of low HIV prevalence and a well-resourced health care system. In this discussion, different assumptions are made. Within this context, where mandatory testing may be a strategy of last resort, the objections to it are reviewed. Special attention is paid in the discussion to the entrenched vulnerability of women in much of southern Africa and how this contributes to both HIV prevalence and ongoing challenges for preventing HIV transmission during pregnancy. While mandatory testing is ethically plausible, particularly when coupled with guaranteed access to treatment and care, the discussion argues that the moment to employ this strategy has not yet come. Many barriers remain for pregnant women in terms of access to testing, treatment and care, most acutely in the southern African setting, despite the presence of national and international human rights instruments aimed at empowering women and removing such barriers. While this situation persists, mandatory HIV testing during pregnancy cannot be justified. (shrink)

Despite recent advances in ways to prevent transmission of HIV from a mother to her child during pregnancy, infants continue to be born and become infected with HIV, particularly in southern Africa where HIV prevalence is the highest in the world. In this region, emphasis has shifted from voluntary HIV counselling and testing to routine testing of women during pregnancy. There have also been proposals for mandatory testing. Could mandatory testing ever be an option, even in (...) high‐prevalence settings? Many previous examinations of mandatory testing have dealt with it in the context of low HIV prevalence and a well‐resourced health care system. In this discussion, different assumptions are made. Within this context, where mandatory testing may be a strategy of last resort, the objections to it are reviewed. Special attention is paid in the discussion to the entrenched vulnerability of women in much of southern Africa and how this contributes to both HIV prevalence and ongoing challenges for preventing HIV transmission during pregnancy. While mandatory testing is ethically plausible, particularly when coupled with guaranteed access to treatment and care, the discussion argues that the moment to employ this strategy has not yet come. Many barriers remain for pregnant women in terms of access to testing, treatment and care, most acutely in the southern African setting, despite the presence of national and international human rights instruments aimed at empowering women and removing such barriers. While this situation persists, mandatory HIV testing during pregnancy cannot be justified. (shrink)

Recent global advances in available technology to prevent mother-to-child HIV transmission necessitate a rethinking of contemporary and previous ethical debates on HIV testing as a means to preventing vertical transmission. In this paper, we will provide an ethical analysis of HIV-testing strategies of pregnant women. First, we argue that provider-initiated opt-out HIV testing seems to be the most effective HIV test strategy. The flip-side of an opt-out strategy is that it may end up as involuntary testing (...) in a clinical setting. We analyse this ethical puzzle from a novel perspective, taking into account the moral importance of certain hypothetical preferences of the child, as well as the moral importance of certain actual preferences of the mother. Finally, we balance the conflicting concerns and try to arrive at an ethically sound solution to this dilemma. Our aim is to introduce a novel perspective from which to analyse testing strategies, and to explore the implications and possible benefits of our proposal. The conclusion from our analysis is that policies that recommend provider-initiated opt-out HIV testing of pregnant mothers, with a risk of becoming involuntary testing in a clinical setting, are acceptable. The rationale behind this is that the increased availability of very effective and inexpensive life-saving drugs makes the ethical problems raised by the possible intrusiveness of HIV testing less important than the child's hypothetical preferences to be born healthy. Health care providers, therefore, have a duty to offer both opt-out HIV testing and available PMTCT (preventing mother-to-child transmission) interventions. (shrink)

BackgroundAdolescents living with human immunodeficiency virus (HIV) experience challenges, including lack of involvement in their care as well nondisclosure of HIV status, which leads to poor adherence to antiretroviral therapy (ART). Parents have authority over their children, but during adolescence there is an increasing desire for independence. The aim of the study was to explore adolescents’ experience of challenges identified by adolescents ages 10–19 years attending HIV care and treatment at Temeke Regional Referral Hospital in Tanzania. MethodsAn exploratory descriptive qualitative (...) design was employed in the HIV Care and Treatment Centre (CTC) in the Out-Patient Department at the Temeke Regional Referral Hospital in Tanzania with adolescents living with HIV who were 10–19 years of age. A total of 22 adolescents participated in semi-structured face-to-face interviews after parental consent and adolescent assent were obtained. Participants were interviewed about their participation in decisions to be tested for HIV and enrolled in the CTC, concerns surrounding disclosure of their HIV status to the adolescent or to others, stigma and discrimination, and the effect of these challenges on their adherence to medication. All interviews were audio-taped, transcribed verbatim in Swahili, and back-translated to English. Data analysis included both inductive and deductive thematic analysis.ResultsQualitative themes identified included lack of participation in decisions about HIV testing, challenges to enrollment in care and treatment; issues around disclosure of HIV status, such as delays in disclosure to the adolescent and disclosure to other persons and benefits and harms of such disclosures; and factors supporting and interfering with adherence to ART, such as parental support, organizational (clinic) support and problems, and self-stigmatization and shame.ConclusionLack of adolescents’ involvement in their care decision making and delayed disclosure of HIV status to the adolescent were identified concerns, leading to poor adherence to ART among adolescents. Disclosure to others, especially teachers, helped adolescents at school to take their medication properly. Disclosure to others led to stigma and discrimination for some adolescents. More research is needed to better understand the role of disclosure and its benefits and challenges for HIV-positive adolescents in Tanzania. (shrink)

This reissued work, originally published in 1985, is a uniquely broad and original survey of theories and beliefs about the growth, behaviour, performance and reform of the governments of modern Western democracies. After analysing the external pressures which have shaped modern governments, the author examines four different schools of political thought which seek to explain the behaviour and performance of governments, and which offer different remedies for the pluralism, corporatism and bureaucracy. To examine and test these general theories, the author (...) looks closely at how governments actually work. The book is illustrated with examples drawn from various Western societies. The final chapters present the author’s own conclusion about the future role of government, the limits of market philosophy, the future of politics, and the principles and problems of institutional reform. (shrink)

Despite decades of prevention efforts, millions of persons worldwide continue to become infected by the human immunodeficiency virus (HIV) every year. This urgent problem of global epidemic control has recently lead to significant changes in HIV testing policies. Provider‐initiated approaches to HIV testing have been embraced by the Centers for Disease Control and Prevention and the World Health Organization, such as those that routinely inform persons that they will be tested for HIV unless they explicitly refuse (‘opt out’). (...) While these policies appear to increase uptake of testing, they raise a number of ethical concerns that have been debated in journals and at international AIDS conferences. However, one special form of ‘provider‐initiated’ testing is being practiced and promoted in various parts of the world, and has advocates within international health agencies, but has received little attention in the bioethical literature: mandatory premarital HIV testing. This article analyses some of the key ethical issues related to mandatory premarital HIV testing in resource‐poor settings with generalized HIV epidemics. We will first briefly mention some mandatory HIV premarital testing proposals, policies and practices worldwide, and offer a number of conceptual and factual distinctions to help distinguish different types of mandatory testing policies. Using premarital testing in Goma (Democratic Republic of Congo) as a point of departure, we will use influential public health ethics principles to evaluate different forms of mandatory testing. We conclude by making concrete recommendations concerning the place of mandatory premarital testing in the struggle against HIV/AIDS. (shrink)

The analytical and self-critical bias of modern philosophy lets ideology expand to most significant world-view and value areas. Hence, philosophy of history escapes such problems as meaning of history, course of history, and self-identification in history. Ideology aggressively grasps these ideas and transforms them into its own primitive dogmas that usually serve as symbolical tools for political struggle or for legitimating ruling elites. This paper shows how it is possible for philosophy, in cooperation with the social sciences (especially (...) historical macrosociology), to retrieve these problems of crucial world-view significance. A universal model of historical dynamics and the concept of values of general significance are described and integrated within a general frame for historical meanings: permanent self-test of human communities. (shrink)

Background Bioethical debates about privacy, big data, and public health surveillance have not sufficiently engaged the perspectives of those being surveilled. The data justice framework suggests that big data applications have the potential to create disproportionate harm for socially marginalized groups. Using examples from our research on HIV surveillance for individuals incarcerated in jails, we analyze ethical issues in deploying big data in public health surveillance. -/- Methods We conducted qualitative, semi-structured interviews with 24 people living with HIV who had (...) been previously incarcerated in county jails about their perspectives on and experiences with HIV surveillance, as part of a larger study to characterize ethical considerations in leveraging big data techniques to enhance continuity of care for incarcerated people living with HIV. -/- Results Most participants expressed support for the state health department tracking HIV testing results and viral load data. Several viewed HIV surveillance as a violation of privacy, and several had actively avoided contact from state public health outreach workers. Participants were most likely to express reservations about surveillance when they viewed the state’s motives as self-interested. Perspectives highlight the mistrust that structurally vulnerable people may have in the state’s capacity to act as an agent of welfare. Findings suggest that adopting a nuanced, context-sensitive view on surveillance is essential. -/- Conclusions Establishing trustworthiness through interpersonal interactions with public health personnel is important to reversing historical legacies of harm to racial minorities and structurally vulnerable groups. Empowering stakeholders to participate in the design and implementation of data infrastructure and governance is critical for advancing a data justice agenda, and can offset privacy concerns. The next steps in advancing the data justice framework in public health surveillance will be to innovate ways to represent the voices of structurally vulnerable groups in the design and governance of big data initiatives. (shrink)

People should be allowed to decide how and where they wish to be tested for HIV without there being a formal requirement for pretest counsellingIn his paper, Ethics of HIV testing in general practice without informed consent, Fraser argues that pretest counselling and informed consent are pillars of the ethical conduct of HIV testing. In my response I want to look critically at these contentions. While I will agree with Fraser that it is always necessary to get informed (...) consent from a patient for an HIV test I will argue that an emphasis on pretest counselling as a prerequisite for testing can actually undermine a patient’s autonomy, the very principle that informed consent seeks to promote.This response will start with an analysis of Case Two as this highlights the fundamental importance of informed consent. It will then go on to look at Case One and show how the special application of informed consent in the field of HIV testing can, in certain circumstances, lead to a reduction in patient autonomy.CASE TWOIn Fraser’s second case a 43 year old married clergyman presented with a recurrent infection of his little toe and the preliminary lab reports queried Kaposi’s sarcoma. The general practitioner thought that because of the patient’s lifestyle there was little risk of HIV infection, “suggesting the possibility of HIV, when it is unexpected and the risk low, can in itself cause anxiety and distress”. On these grounds the GP did not call the patient in for an HIV test.Some might argue that the GP should have tested the clergyman. This could have been done in one of two ways: by seeking his explicit consent for an HIV test, or by getting blanket consent for a range of tests, including HIV, without HIV being explicitly mentioned. …. (shrink)

In recent times, informed consent has been adopted worldwide as a cornerstone to ensure autonomy during HIV testing. However, there are still ongoing debates on whether the edifice on which informed consent requirements are grounded, that is, personal autonomy, is philosophically, morally, and practically sound, especially in countries where HIV is an epidemic and/or may have a different ontological perspective or lived reality. This study explores the views of participants from Zambia. In-depth and focus group discussions were conducted at (...) various locations in Lusaka and Chongwe, Zambia. Participants came from various demographics, including people living with HIV, healthcare professionals and workers, policymakers, pregnant women, churchgoers, teachers, rural-based persons, and police officers. Data were manually analysed by conducting inductive and deductive thematic analyses. Results show that participants were not in favour of HIV policies that promote personal autonomy at the expense of pursuit of the common good. Participants viewed interdependence, not autonomy, as an essential characteristic of being human. The participants’ views have a realistic potential to provide a contextual and appropriate ethical, respectful, and realistic foundation for HIV testing policies. (shrink)

The concept of “moral equivocation” may be defined in the context of an ethical framework for moral judgment. This framework comprises two universal principles of right: the Dependency Principle, found in Plato's Republic, and the Democracy Principle. Moral equivocation is evident in a violation of either of these two principles. At the cultural level, coping with moral equivocation often requires moral compromise, as is evident in applying the Dependency-Democracy Principles Ethical Framework to the issue of HIV testing for pregnant (...) women. (shrink)

An international team of eighteen doctors, philosophers, and lawyers present a fresh and thorough discussion of the ethical, legal, and social issues raised by testing and screening for HIV and AIDS. They aim to point the way to practical advances but also to give an accessible guide for those new to the debate.

: The Centers for Disease Control and Prevention (CDC) has recommended that HIV testing be routinely offered to certain patients in hospitals with a high prevalence of HIV infection and on all pregnant women. The CDC does not, however, offer implementation level guidelines for obtaining informed consent. We provide a moral justification for requiring informed consent for HIV testing and propose guidelines for securing such consent. In particular we argue that genuine informed consent can be secured without elaborate (...) counseling, such as that currently used at Counseling and Testing Sites, provided that sufficient written notice is given to the patients before testing and that they are specifically asked for permission. (shrink)

Today in Ukraine there is an acute problem of the spiritual alienation of a certain part of the younger generation from their people, their faith and traditions, which have developed over the centuries, from established moral principles, in particular, regarding personal self-determination in the social world. In turn, such confusion and disorientation in the social space leads to an aggravation of the relationship between the same outside world and the system of inner values ​​of the young man. Moreover, a (...) hypertrophied and distorted understanding of reality entails a number of problems that often take the form of a pronounced social evil. For example, today our country is one of the leading places in Europe for the spread of AIDS. According to the Ministry of Health of Ukraine, every week, several dozen Ukrainians turn out to be HIV-positive when submitting appropriate tests. It is also hard to say about the spread of such social ills as drug addiction, drunkenness. (shrink)

Despite decades of prevention efforts, millions of persons worldwide continue to become infected by the human immunodeficiency virus (HIV) every year. This urgent problem of global epidemic control has recently lead to significant changes in HIV testing policies. Provider-initiated approaches to HIV testing have been embraced by the Centers for Disease Control and Prevention and the World Health Organization, such as those that routinely inform persons that they will be tested for HIV unless they explicitly refuse ('opt out'). (...) While these policies appear to increase uptake of testing, they raise a number of ethical concerns that have been debated in journals and at international AIDS conferences. However, one special form of 'provider-initiated' testing is being practiced and promoted in various parts of the world, and has advocates within international health agencies, but has received little attention in the bioethical literature: mandatory premarital HIV testing. This article analyses some of the key ethical issues related to mandatory premarital HIV testing in resource-poor settings with generalized HIV epidemics. We will first briefly mention some mandatory HIV premarital testing proposals, policies and practices worldwide, and offer a number of conceptual and factual distinctions to help distinguish different types of mandatory testing policies. Using premarital testing in Goma (Democratic Republic of Congo) as a point of departure, we will use influential public health ethics principles to evaluate different forms of mandatory testing. We conclude by making concrete recommendations concerning the place of mandatory premarital testing in the struggle against HIV/AIDS. (shrink)

The least infringement principle has been widely endorsed by public health scholars. According to this principle, public health policies may infringe upon “general moral considerations” in order to achieve a public health goal, but if two policies provide the same public health benefit, then policymakers should choose the one that infringes least upon “general moral considerations.” General moral considerations can encompass a wide variety of goals, including fair distribution of burdens and benefits, protection of privacy and confidentiality, and respect for (...) autonomy.In this article, we argue that the Center for Disease Control and Prevention's 2006 HIV screening recommendations may violate the least infringement principle. This is a concern because, although not legally binding, the Recommendations appear to have already influenced state laws and will likely continue to do so as legislative proposals continue to be passed. At a minimum, therefore, the Recommendations have important implications for HIV screening within the United States. (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.

This study was conducted from May to June 2005 to describe the demographic characteristics and factors that affect the VCT acceptance as well as the HIV prevalence among youth VCT acceptors in Addis Ababa. Both quantitative and qualitative methods of data collection were employed. The quantitative data was generated from a two years (October 2002 to December 2004) VCT service utilization data obtained from four youth centers located in Addis Ababa. The data was analysed using univariate and multivariate analysis and (...) results were presented in the form of text, table and figures. The significance and level of associations between independent and dependant variables was computed using X2 tests and odds ratios with 95% confidence interval. The qualitative data was presented in a form of narrations using excerpts. During the period a total of 3220, youth age 15 - 24 years have sought VCT service from the four youth centres VCT service outlets. Higher proportions of females (60.2%) and youth in the age category of 20 – 24 years (58.0%) have accessed the service. The major reasons given for seeking VCT were found to be similar for male and female acceptors. About 71.2% said that they sought for VCT service because they wanted to know their HIV status, 9.5% reported because they were suspicious of being infected with HIV and 5.0% tested because they wanted to go aboard. The HIV prevalence rate is found to be significantly higher, (p = 0.00), among females 9.2 % than in males 1.7 %. Gender segregated multivariate analysis of risk factors indicated significant association of HIV infection with lack of formal education for both males and female: for males P= 0.045, OR = 18.3, 95% CI: 1.1 – 317.7 and for females P=0.00, OR=19.4, 95 % CI: 5.1 – 73.8. Additionally for females HIV infection is markedly associated with being widowed and commercial sex worker. The most common barrier for youth in Addis from accessing VCT were found to be: fear of being emotionally affected if found out HIV positive, stigma and discrimination, lack of money to pay for VCT service, absence of care and support services for people who are already infected. The challenges encountered by youth VCT counsellors were stress, absence of medical care for PLWHA, inadequacy of budget, lack of counsellors and supportive supervision. This study showed high burden of HIV infection among female youth and the risk factors associated with it. Formal education for both females and males is strongly recommended. Female focused HIV prevention interventions are indicated. Additional recommendations are also made in relation to barriers to access youth VCT and for the challenges encountered by youth VCT service providers. (shrink)

Since testing for HIV infection became possible in 1985, testing of pregnant women has been conducted primarily on a voluntary, ‘opt-in’ basis. Faden, Geller and Powers, Bayer, Wilfert, and McKenna, among others, have suggested that with the development of more reliable testing and more effective therapy to reduce maternal-fetal transmission, testing should become either routine with ‘opt-out’ provisions or mandatory. We ask, in the light of the new rapid tests for HIV, such as OraQuick, and the (...) development of antiretroviral treatment that can reduce maternal-fetal transmission rates to <2%, whether that time is now. Illustrating our argument with cases from the United States (US), Kenya, Peru, and an undocumented Mexican worker in the US, we show that when testing is accompanied by assured multi-drug therapy for the mother, the argument for opt-out or mandatory testing for HIV in pregnancy is strong, but that it is problematic where testing is accompanied by adverse events such as spousal abuse or by inadequate intrapartum or follow-up treatment. The difference is not a ‘double standard’, but reflects the presence of conflicts between the health interests of the mother and the fetus – conflicts that would be abrogated by the assurance of adequate, continuing multi-drug therapy. In light of these conflicts, where they still occur, careful processes of informed consent are appropriate, rather than opt-out or mandatory testing. (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)

© 2014 Taylor Francis. The Centers for Disease Control and Prevention recommends routine human immunodeficiency virus testing of every client presenting for services in venues where HIV prevalence is high. Because older adults have particularly poor prognosis if they receive their diagnosis late in the course of HIV disease, any screening provided to younger adults in these venues should also be provided to older adults. We examined aging-related disparities in recent and ever HIV testing in a probability sample (...) of at-risk adults seeking services in needle exchange sites, sexually transmitted disease clinics, and Latino community clinics that provide HIV testing. Using multiple logistic regression with generalized estimating equations, we estimated associations between age category and each HIV testing outcome. Even after controlling for covariates such as recent injection drug use, older adults had 40% lower odds than younger adults did of having tested in the past 12 months or ever. Aging-related disparities in HIV testing exist among clients of these high HIV prevalence venues and may contribute to known aging-related disparities in late diagnosis of HIV infection and poor long-term prognosis. (shrink)

The diagnosis of HIV infection is the point of entry for treatment and prevention services, yet many infected persons in both developed and developing countries remain undiagnosed. To reduce the number of undiagnosed infections, a variety of expanded testing policies have been recommended, including opt-out testing. This testing model assumes that in populations of increased HIV prevalence, voluntary testing should be offered to all patients seen in healthcare settings and performed unless patients specifically decline. While this (...) approach raises ethical issues concerning “voluntariness”, access to care, and stigma, the potential benefits of opt-out testing far outweigh its potential adverse effects. (shrink)

The American Journal of Bioethics, Volume 12, Issue 4, Page 41-43, April 2012.