BACKGROUND:The practice of using molecular HIV epidemiology (MHE) to enhance surveillance activities has generated much discussion, partly because it typically involves sequencing viral samples from persons living with HIV without their knowledge or consent. METHODS:Using individual, semi-structured in-depth interviews, we asked 41 individuals from a range of groups affected and/or involved in MHE and related health services in North Carolina their views about consent and MHE. FINDINGS:Although there was no unanimity of opinion, our interview participants were largely (82.5%) supportive using MHE for public health surveillance without obtaining consent, including those living with HIV, though there was also broad support across groups for raising public awareness about MHE. The reasons against consent for MHE included: consent is not traditionally solicited or required in other medical or public health surveillance activities; consent for MHE could deter people from getting tested or entering care; refusals could diminish the accuracy and utility of MHE data due to the resulting evidence gaps; and consent is impractical when there is an urgent need for data during disease outbreaks. Reasons in favor of consent included: a sample is something personal for which it is appropriate to ask permission for its use; failure to ask for consent is an unjustified curtailment of personal rights; people should be able to choose what information related to themselves that they share or do not share with others. There were also mixed responses, where the appropriateness of asking for consent depended on certain conditions. CONCLUSION:These study findings reveal some support among communities of interest for the current approach to consent along with a need for greater community awareness of MHE, and contribute to the ongoing policy conversation about whether the current practice of not obtaining consent for MHE and HIV surveillance purposes should be revisited.

Although human challenge studies (HCSs) have been widely employed in vaccine development for malaria, dengue, typhoid and cholera, the role of this research design in COVID-19 remains controversial. While the potential social value of HCSs in the context of a pandemic is clear, bioethicists are divided on the ethics, given that effective treatment for COVID-19 has eluded us to date. While compelling ethics arguments have been offered on both sides of the debate, scientific and regulatory complexities may not have been fully appreciated. Furthermore, accelerated development of efficacious vaccine candidates in traditional clinical trials has diluted some of the arguments in favour of HCSs. In low- and middle-income country settings, including South Africa, the need for robust patient care conditions for the conduct of HCSs, coupled with considerations such as perceptions of risk, consent processes, remuneration, vaccine hesitancy, fear of exploitation and access to vaccines, makes HCSs challenging to justify.

As COVID-19 spreads rapidly across Africa, causing havoc to economies and disruption to already fragile healthcare systems, it is becoming clear that despite standardised global health strategies, national and local government responses must be tailored to their individual settings. Some African countries have adopted stringent measures such as national lockdown, quarantine or isolation, in combination with good hand hygiene, mandatory wearing of masks and physical distancing, to prevent an impending healthcare crisis. The impact of stringent measures in low- to middle-income African countries has bought time for healthcare facilities to prepare for the onslaught of COVID-19 cases, but some measures have been challenging to implement. In some settings, public health measures have been associated with serious violations of individual rights owing to abuse of power and gaps in implementation of well-intentioned policy. Collateral damage with regard to non-COVID-19 diseases that were suboptimally managed in pre-pandemic times may mean that lives lost from other diseases could exceed those saved from COVID-19. While individuals complying with lockdown regulations have embraced an acceptance of the concept of the common good, at a broad community level many are finding the transition from individualism to collective thinking required during a pandemic difficult to navigate. In this article, we look at government responses to the pandemic in six African countries (Malawi, South Africa, Uganda, Zambia, Zimbabwe and Botswana), and highlight ethical concerns arising in these contexts.

The rising incidence of infection among youth in sub-Saharan Africa makes HIV-related research among younger people a top priority. There remains, however, a lack of consistent and unambiguous ethical principles and guidance for researchers wishing to conduct HIV studies with adolescents. The overarching aim of our research was to better understand youths' experiences with HIV studies. The present study explored four questions: (1) What strategies are effective for recruiting youth for HIV studies? (2) What motivates youth to participate in these studies? (3) How do study participants perceive HIV testing within the context of a research study? (4) What do participants understand about the risks of study participation? These data are essential to inform guidelines for the responsible conduct of research with young people. We interviewed 82 adolescents (aged 15-19) in Kenya taking part in a study examining ethical issues pertaining to their involvement in HIV-related research. Pursuant to our research questions, we found that direct study recruitment combined with encouragement from female relatives was the greatest facilitator to study enrolment among young people. Most young participants expressed that they were motivated to join the study in order to (1) learn their HIV status (n = 49) and (2) receive HIV-related education (n = 26), even though both are already free and widely available. Participants largely preferred testing in a place they deemed "private," although both the health clinic and home were regarded by adolescents as locations with greater privacy. Adolescents largely did not accurately perceive risks of the study two months after baseline, although they could remember the benefits with great clarity. This work can inform researchers, policymakers, and ethics review committees on approaches to maximize efficiency in recruitment and data collection, and to enhance understanding of risks and benefits in HIV-related research among adolescents. While further research is needed, these data may be used by others conducting HIV research in this region to improve recruitment strategies and more effectively engage and appeal to young people.

Introduction Stakeholder engagement is an essential component of HIV clinical trials. We define stakeholder engagement as an input by individuals or groups with an interest in HIV clinical trials to inform the design or conduct of said trials. Despite its value, stakeholder engagement to inform HIV clinical trials has not been rigorously examined. The purpose of our systematic review is to examine stakeholder engagement for HIV clinical trials and compare it to the recommendations of the UNAIDS/AVAC Good Participatory Practice (GPP) guidelines. MethodsResults and discussionWe used the PRISMA checklist and identified English language studies describing stakeholder engagement to inform HIV clinical trials. Four databases (PubMed, Ovid, CINAHL and Web of Science) and six journals were searched, with additional studies identified using handsearching and expert input. Two independent reviewers examined citations, abstracts and full texts. Data were extracted on country, engagement methods, stakeholder types and purpose of stakeholder engagement. Based on the GPP guidelines, we examined how frequently stakeholder engagement was conducted to inform clinical trial research question development, protocol development, recruitment, enrolment, follow-up, results and dissemination. Of the 917 citations identified, 108 studies were included in the analysis. Forty-eight studies (44.4%) described stakeholder engagement in high-income countries, thirty (27.8%) in middle-income countries and nine (8.3%) in low-income countries. Fourteen methods for stakeholder engagement were identified, including individual (e.g. interviews) and group (e.g. community advisory boards) strategies. Thirty-five types of stakeholders were engaged, with approximately half of the studies (60; 55.6%) engaging HIV-affected community stakeholders (e.g. people living with HIV, at-risk or related populations of interest). We observed greater frequency of stakeholder engagement to inform protocol development (49 studies; 45.4%) and trial recruitment (47 studies; 43.5%). Fewer studies described stakeholder engagement to inform post-trial processes related to trial results (3; 2.8%) and dissemination (11; 10.2%). ConclusionsOur findings identify important directions for future stakeholder engagement research and suggestions for policy. Most notably, we found that stakeholder engagement was more frequently conducted to inform early stages of HIV clinical trials compared to later stages. In order to meet recommendations established in the GPP guidelines, greater stakeholder engagement across all clinical trial stages is needed.

Dans les régions marquées par un contexte socioéconomique difficile, les difficultés sont plus nombreuses qu’ailleurs pour ceux qui se donnent pour tâche de former à la réflexion éthique les professionnels de la santé et les chercheurs. Pour le montrer, nous évoquons dans cet article nos expériences en République Démocratique du Congo. Une première difficulté est à chercher du côté linguistique. En effet, la langue et la culture anglo-saxonnes dominent largement la discipline, compliquant la tâche de ceux qui maîtrisent mal l’anglais. Une deuxième difficulté à surmonter est d’ordre conceptuel. Les objectifs et le champ d’application de la bioéthique sont souvent mal compris, ce qui peut conduire à confondre les spécialistes de la discipline tantôt avec des moralistes surtout préoccupés par le progrès biotechnologique, tantôt avec des référents religieux. La troisième difficulté évoquée est de nature politique et culturelle. Lorsqu’elle entre en interaction avec des communautés très hiérarchisées et conservatrices, la posture critique de la bioéthique peut susciter des réactions de rejet. Ce sont sans doute ces difficultés qui ont alimenté certaines critiques acerbes sur la pertinence des formations à l’éthique dans des zones marquées par les urgences sanitaires et alimentaires ou certaines accusations présentant ces démarches comme un avatar de plus de l’impérialisme occidental. Tout en prenant au sérieux ces difficultés, nous montrons par nos expériences qu’elles peuvent être transformées en défis à relever.

Military metaphors are pervasive in biomedicine, including HIV research. Rooted in the mind set that regards pathogens as enemies to be defeated, terms such as “shock and kill” have become widely accepted idioms within HIV cure research. Such language and symbolism must be critically examined as they may be especially problematic when used to express scientific ideas within emerging health-related fields. In this article, philosophical analysis and an interdisciplinary literature review utilizing key texts from sociology, anthropology, history, and Chinese and African studies were conducted to investigate the current proliferation of military metaphors. We found the use of these metaphors to be ironic, unfortunate, and unnecessary. To overcome military metaphors we propose to (1) give them less aggressive meanings, and/or (2) replace them with more peaceful metaphors. Building on previous authors' work, we argue for the increased use of “journey” (and related) metaphors as meaningful, cross-culturally appropriate alternatives to military metaphors.

As access to HIV/AIDS treatment increases in sub-Saharan Africa, greater attention is being paid to HIV-infected youth. Little is known about how HIV-positive youth are informed of their HIV infection. As part of a larger formative study informing a treatment program in Kinshasa, Democratic Republic of the Congo, semi-structured interviews were conducted with 19 youth (10-21 years) who had previously been told their HIV status and 21 caregivers who had disclosed the youth's HIV status to the youth. Questions explored youth's and caregivers' experiences of and immediate reactions to disclosure. Youth's median age at disclosure was 15 years old, witha range of 10 - 18 years based on caregiver reports (n = 21) and from 10-19 years based on youth reports (n = 18). The most common reasons spontaneously given for disclosing were the child's adherence to their treatment regimen (5/16), the need of the child to protect her/himself or stay healthy (5/16), the child's increasing age (4/16) and so that the child would know why they are suffering (3/16). Most youth (16/19) were surprised to learn of their diagnosis; 50% (8/16) wondered about the infection's origins. A large majority felt that it is better for them to know their HIV status (88%;15/17). HIV care and treatment programs must be prepared to address the psychosocial needs of youth and their caregivers during the disclosure process.

As access to HIV/AIDS treatment increases in sub-Saharan Africa, greater attention is being paid to HIV-infected youth. Little is known about how HIV-positive youth are informed of their HIV infection. As part of a larger formative study informing a treatment program in Kinshasa, Democratic Republic of the Congo, semi-structured interviews were conducted with 19 youth (10–21 years) who had previously been told their HIV status and 21 caregivers who had disclosed the youth's HIV status to the youth. Questions explored youth's and caregivers’ experiences of and immediate reactions to disclosure. Youth's median age at disclosure was 15 years old, with a range of 10–18 years based on caregiver reports (n=21) and from 10–19 years based on youth reports (n=18). The most common reasons spontaneously given for disclosing were the child's adherence to their treatment regimen (5/16), the need of the child to protect her/himself or stay healthy (5/16), the child's increasing age (4/16) and so that the child would know why they are suffering (3/16). Most youth (16/19) were surprised to learn of their diagnosis; 50% (8/16) wondered about the infection's origins. A large majority felt that it is better for them to know their HIV status (88%; 15/17). HIV care and treatment programs must be prepared to address the psychosocial needs of youth and their caregivers during the disclosure process.