Ethical and practical considerations for HIV cure-related research at the end-of-life: a qualitative interview and focus group study in the United States

Background One 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. Methods We 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. Results All 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. Conclusion Because 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.

Key factors affecting commercial actors in collaborative working within the UK construction industry

Purpose Extensive research on the importance of collaborative working (CW) and aligning stakeholders’ interests in construction has been widely conducted. But often the practice of commercial actors during CW has often been overlooked, particularly within the UK setting, where scholars have lamented on the lack of industry-wide collaboration. This study aims to explore the factors affecting commercial actors in CW, specific to the UK construction industry. Design/methodology/approach The research used a context-based approach to seek stakeholders’ perspectives on the key factors affecting commercial actors in CW within the UK. Semi-structured interviews with individuals (contractors, cost consultants, designers among others) from construction and infrastructure organisations were conducted, using multiple case study investigations. The collected data was analysed using a case study approach, and principles of inductive thematic analysis to identify the key factors. Findings Findings from the analysis identified “institutional” factors such as transactional cost economic influence, the prevailing construction model influence and professional related drivers. Key drivers within these factors include commercial background and training, custom and practice, misaligned interests in projects, clients’ perception of consultants, cost-driven environment, conventional procurement protocols and bureaucratic functions. Originality/value In conclusion, these factors continue to affect CW with undue influence on commercial actors in the UK, thus preventing performance improvement demanded by successive UK Government reports. The context-based approach applied in this study is expected to provide some insight in construction management research, especially from a commercial perspective in the UK, to gain an understanding of how these factors are manifesting.

The Pragmatics of Political Claims and Social Responses amidst Covid-19 and EndSARS Saga in Nigeria

There have been few stand-alone linguistic studies on the Covid-19 virus and the 2020 EndSARS protests in Nigeria. The present study intersects these two critical events with particular focus on the political claims made by the ruling class and the corresponding social responses in line with the contextual affordances shared by the participants. Searle’s speech act theoretic approach is adopted to analyse the pragmatic intentions of the illocutionary acts which political claims perform while Juvenalian satire is used to discuss the satirical elements embedded in the social responses in a bid to ridicule leadership follies and abuses. Three popular Nigerian online Newspapers and few comments from Facebook are selected for this study. Their selection is based on their coverage of these events, coverage of these political claims and popular readership evidenced in the social responses. In all, a total of 6 political claims and 25 social responses relevant to this study are analysed. The study revealed that the pragmatic relevance of these claims is embedded in its political functions of wielding undue influence over the populace, making promises driven by rhetoric and short of initiative and calculated reticence in response to social issues. Consequently, the social responses highlight and criticise leadership vices and the weak efforts of the government in dispensing its leadership interventions. It also fulfils communicative purposes of the contextual space, promote solidarity among the people while prompting change in the political class and the society at large.

Strengthening the WHO in the pandemic era by removing a persistent structural defect in financing

Background The WHO’s success in its vital role is constrained by inadequate financial support from member states and overreliance on earmarked voluntary contributions, which erodes autonomy. The agency’s broad functions, including coordination among 194 members, cannot be performed by any other entity. However, despite experts’ well-articulated concerns that the agency’s legitimacy and authority in global health matters have been undermined, a decades-long freeze on member assessments means that WHO priorities are disproportionately influenced by a few powerful donors. A structural defect To overcome inertia in addressing well-known limitations, it may be helpful to consider the weaknesses in WHO’s financing mechanism as a persistent structural defect. This perspective strengthens the focus on corrections needed to remove the defect. In our view, the main features of the structural defect are the self-imposed constraints that foster the perception—if not the reality—that the agency’s legitimacy is compromised. These constraints include WHO’s inadequate level of financing; lack of direct control over 80% of its funds; and unbalanced participation, such that over 60% of financing originates from only 9 donors. With renewed commitment, however, member countries can remove these constraints. Removing the structural defect To meaningfully strengthen structural integrity of the financing mechanism, restore WHO’s autonomy, and minimize concerns about wealthy-donor supremacy, it will be necessary to define specific requirements and implement restrictions on financial contributions. We make five recommendations, including tripling total financing; ensuring that 70% or more of financial support derives from member assessments; limiting contributions from individual members to a maximum of 4% of total WHO financing; and limiting donations from individual partners to a maximum of 3% of total WHO financing (1% for earmarked donations). Although some might consider these measures impractical, they are justified by the magnitude of the crises the world faces, by member states’ increased economic strength in recent decades, and by the importance of shielding the WHO’s financing structure from perceived neocolonialism. This necessary step calls for an adjustment of priorities: the higher level of assessed contribution—from nearly all members regardless of wealth—required to reach the proposed targets would still represent only a small fraction of most members’ annual military expenditures. Conclusion The COVID-19 pandemic, with its devastating toll on human life and global economic stability, presents an opportunity for reflection and refocusing. Realigning WHO’s financial structure to its founders’ vision, as proposed here, would likely safeguard both the agency’s autonomy and member states’ trust, while alleviating concerns about undue influence from powerful donors. Removing the persistent structural defect in financing would empower WHO to lead and coordinate global response to meet the inevitable challenges of the coming decades.

Examining study participants’ decision-making and ethics-related experiences in a dietary community randomized controlled trial in Malawi

Background The participant recruitment process is a key ethical pivot point when conducting robust research. There is a need to continuously review and improve recruitment processes in research trials and to build fair and effective partnerships between researchers and participants as an important core element in ensuring the ethical delivery of high-quality research. When participants make a fair, informed, and voluntary decision to enroll in a study, they agree to fulfill their roles. However, supporting study participants to fulfill study requirements is an important ethical obligation for researchers, yet evidenced as challenging to achieve. This paper reports on participants’ motivations to volunteer and remain part of a dietary study conducted in Kasungu District, Malawi. Methods We conducted twenty in-depth interviews (with chiefs, religious leaders, trial participants, and health surveillance assistants), five systematic ethnographic observations, and fourteen focus group discussions with trial participants and their partners. Interviews were audio-recorded and transcribed verbatim. We used a grounded theory methodology to analyse data that included coding, detailed memo writing, and data interpretation. Findings The findings reveal that many participants had concerns during the trial. Thematically, experiences included anxieties, mistrust of researchers, rumours, fears of exploitation, and misconceptions. Anonymous concerns collected from the participants were reported to the trial team which enabled the researchers to appropriately support participants. Despite initial concerns, participants described being supported and expressed motivation to take up their role. Conclusion These findings highlight a diverse map of multiple notions of what is ethically relevant and what can impact participation and retention within a study. The study has revealed how embedding a responsive approach to address participants’ concerns and ethical issues can support trust relationships. We argue for the need to employ embedded ethics strategies that enhance informed consent, focus on participants’ needs and positive experiences, and support researchers to fulfill their roles. This work highlights the need for research ethics committees to focus on the risks of undue influence and prevent exploitation especially in settings with a high asymmetry in resources and power between researcher and participant groups. Trial Registration: The Addressing Hidden Hunger with Agronomy (Malawi) trial was registered on 5th March 2019 (ISCRTN85899451).

Geopolitics, Digital Sovereignty…What’s in a Word?

An overlay of digital networks and services often operated by global players encircles and “shrinks” the planet. At the same time, the geopolitical dynamics have entered a cycle of feud for leadership between trade blocs who compete for economic and industrial leadership but also on ethics, values, and political outlook. In this context, governments and lawmakers are struggling to combine the need for global cooperation in digital matters with the imperative to protect their jurisdiction from undue influence and provide economic agents with the means to compete on a global scale. The concept of “digital sovereignty” was carved to address this. Words matter a lot especially when they are meant to translate political goals. We argue that “digital sovereignty” lacks meaning and teeth, while the concept of “strategic autonomy” is more operative, contains in itself the elements of strategic planning, and should lead EU to aim at genuine “digital non-alignment.”

Capacity of ZAECA in Conducting Research and Guidance to Fight Corruption in Zanzibar

The main focus of this study is to examine the capacity of ZAECA in conducting research and guidance to fight corruption in Zanzibar. The study employed a descriptive case study research design. The target population of this study was employees in the Ministry of Public Services and Good Governance and its Commissions and Authorities including; ZAECA, Commission for Good Governance, Commission of Ethics in Public Services, Commission for Human Rights, Institute of Public Administration, Control Auditor General (CAG) and the office of Director of Public Prosecution (DPP). Judgmental sampling and simple random sampling techniques were used to select a sample size of 85 respondents. The study found that ZAECA does not have sufficient powers to effectively carry out its mandate and the respondents rated a moderate capacity in conducting research and guidance to fight corruption, human resources and independence. The study concludes that ZAECA does not have sufficient powers to effectively carry out its mandate and that ZAECA is not free from undue influence. Finally, the study recommended that the government should ensure that ZAECA is independent and autonomous by clearly delinking it from political influence.