The aim of this study was to assess the political and social dynamics resulting from the rapid change in user-fee reforms in Uganda and the effects on service delivery for malaria control. Using political mapping and political risk analysis techniques, the study analysed qualitative and quantitative data obtained from secondary data sources and key actors in the policy arena. The results have shown that the feasibility of user-fees in Uganda was undermined by the absence of strong central government leadership and strategies to manage the politics of the reforms. The resultant rapid change in policy adversely affected the recurrent expenditures of health units that previously relied heavily on cost sharing, which led to a chronic shortage of malaria drugs and undermined the ability of health facilities to hire and motivate staff. The study results demonstrate that in order to contribute positively to healthcare delivery goals for malaria control in endemic countries, user-fees require full ownership and strong political leadership by the central government. Decentralization, when merely used as a strategy to navigate the political risks associated with user-fees, is unlikely to succeed without a centrally coordinated and managed process of policy formulation and acceptance involving wider consultations and political management of interest groups.
Background In response to COVID-19 pandemic, the Government of Uganda adopted public health measures to contain its spread in the country. Some of the initial measures included refusal to repatriate citizens studying in China, mandatory institutional quarantine, and social distancing. Despite being a public health emergency, the measures adopted deserve critical appraisal using an ethics and human rights approach. The goal of this paper is to formulate an ethics and human rights criteria for evaluating public health measures and use it to reflect on the ethical propriety of those adopted by the government of Uganda to contain the spread of COVID-19. Main body We begin by illustrating the value of ethics and human rights considerations for public health measures including during emergencies. We then summarize Uganda’s social and economic circumstances and some of the measures adopted to contain the spread of COVID-19. After reviewing some of the ethics and human rights considerations for public health, we reflect upon the ethical propriety of some of Uganda’s responses to COVID-19. We use content analysis to identify the measures adopted by the government of Uganda to contain the spread of COVID-19, the ethics and human rights considerations commonly recommended for public health responses and their importance. Our study found that some of the measures adopted violate ethics and human rights principles. We argue that even though some human rights can sometimes be legitimately derogated and limited to meet public health goals during public health emergencies, measures that infringe on human rights should satisfy certain ethics and human rights criteria. Some of these criteria include being effective, strictly necessary, proportionate to the magnitude of the threat, reasonable in the circumstances, equitable, and least restrictive. We reflect on Uganda’s initial measures to combat the spread of COVID-19 and argue that many of them fell short of these criteria, and potentially limit their effectiveness. Conclusion The ethical legitimacy of public health measures is valuable in itself and for enhancing effectiveness of the measures. Such legitimacy depends on the extent to which they conform to ethics and human rights principles recommended for public health measures.
BackgroundA trend called ‘African bioethics’ is growing on the continent due to perceptions of existing bioethics, especially guidelines for international collaborative research, as ‘ethical imperialism’. As a potential alternative to ‘Western Principlism,’ ‘African bioethics’ is supposed to be indigenous to Africa and reflective of African identity. However, despite many positive insights in the on-going discussions, it is feared that the growth of bioethics in Africa lacks a clear direction. Some of the views threaten to distort the essence of bioethics and its development on the continent.Main textThis paper presents some of the dominant views on ‘African bioethics’, an examination of which reveals some valuable insights into the direction bioethics in Africa ought to take, but at the same time confirms some methodological challenges in some contributions to the discussion. On top of acknowledging critical insights in the discussion, the paper reveals that some views are characterized by arbitrariness and rhetorical discussions based on a strong negative and yet hard-to-accept assumption; doubtful designation; lack of a clearer problem being addressed and consequently obscure question(s) and aim(s) of the discourse. Finally, some methodological insights are proposed to guide bioethics research and scholarship in Africa. Specifically, the paper proposes that in search for the legitimacy of bioethics in Africa, we ought to protect the essence of bioethics by giving considerable attention to the utility of subsequent bioethics. To achieve this we need to specify the problem and proper designation for the discourse; focus on principles qua principles with impartiality and how to ensure their strict implementation; and encourage critical thinking as part of bioethics.ConclusionIn cultivating bioethics in Africa, the pursuit of identity is legitimate but must be conditional in light of other competing considerations. We should focus on an objective search for bioethical principles that can be effective in responding to African and global health challenges of moral significance, irrespective of the origin of the principles and at the same time focus more on strategies for ensuring compliance with resulting principles.
Background The return of genetics and genomics research results has been a subject of ongoing global debate. Such feedback is ethically desirable to update participants on research findings particularly those deemed clinically significant. Although there is limited literature, debate continues in African on what constitutes appropriate practice regarding the return of results for genetics and genomics research. This study explored perspectives and ethical considerations of Ugandan genomics researchers regarding the return of genetics and genomics research results. Methods This was a qualitative study that employed in-depth interviews. Thirty participants were purposively selected based on their expertise as genomics researchers in Uganda. Data were analysed through content analysis along the main themes of the study using a comprehensive thematic matrix, to identify common patterns arising from the narratives. NVivo software 12 was used to support data analysis. Results The return of genetics and genomics research results was generally acceptable to researchers, and some indicated that they had previously returned individual or aggregate results to participants and communities. The main reasons cited for sharing research results with participants included their clinical utility, actionability and overall benefit to society. Ethical considerations for appropriate return of results included a need for effective community engagement, genetic counselling prior to disclosure of the results, adequate informed consent, and proper assessment of the implications of, or consequences of returning of results. However, the approaches to return of results were perceived as unstandardized due to the lack of appropriate regulatory frameworks. Conclusions The return of genetic and genomic research results is generally acceptable to researchers despite the lack of appropriate regulatory frameworks. Ethical considerations for return of genetics and genomics research results are highly divergent, hence the need for national ethical guidelines to appropriately regulate the practice.
Background Genetics and genomics research (GGR) is increasingly being conducted around the world; yet, researchers and research oversight entities in many countries have struggled with ethical challenges. A range of ethics and regulatory issues need to be addressed through comprehensive policy frameworks that integrate with local environments. While important efforts have been made to enhance understanding and awareness of ethical dimensions of GGR in Africa, including through the H3Africa initiative, there remains a need for in-depth policy review, at a country-level, to inform and stimulate local policy development and revision on the continent. Methods To identify and characterize existing ethics-related guidelines and laws applicable to GGR across much of Africa, we conducted a scoping review of English language policy documents identified through databases, repositories, and web searches. Thirty-six documents were included and coded using a framework that contained a range of themes across five analytical categories: (1) respect, (2) beneficence, (3) justice, (4) independent oversight, and (5) bans and prohibitions. Data analysis software (NVivo 12) was used to organize, code, and tabulate information according to document characteristics and topics. Illustrative examples of policy requirements were selected for inclusion. Results Documents that met inclusion criteria spanned 20 years; published between 1996 and 2018, with the majority (58%) published after 2009. About two-thirds were denoted as “guidelines,” and slightly more than half were non-exclusive to GGR. Very few (six) country-level documents identified were specific to GGR. Requirements related to the principle of “respect” appeared most often across all documents, relative to other principles and processes. The most commonly stated ban was on reproductive cloning. Other prohibitions applied to germline editing, undue inducements in research, sample use for commercial purposes, employee mandatory DNA testing, fetal sex selection, stem cell use, eugenics, and research without public health benefits. Conclusions Enforceable policies that are indispensable to the ethical conduct and review of GGR are either deficient or missing in many African countries. Existing international, GGR-specific ethics guidelines can be used to inform GGR policy development at a country-level, in conjunction with insight from country specific ethics committees and other local stakeholders.
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