A survey of national ethics and bioethics committees.

OBJECTIVE: To assess the current state of national ethics committees and the challenges they face. METHODS: We surveyed national ethics committees between 30 January and 21 February 2018. FINDINGS: In total, representatives of 87 of 146 national ethics committees (59.6%) participated. The 84 countries covered were in all World Bank income categories and all World Health Organization regions. Many national ethics committees lack resources and face challenges in several domains, like independence, funding or efficacy. Only 40.2% (35/87) of committees expressed no concerns about independence. Almost a quarter (21/87) of committees did not make any ethics recommendations to their governments in 2017, and the median number of reports, opinions or recommendations issued was only two per committee Seventy-two (82.7%) national ethics committees included a philosopher or a bioethicist. CONCLUSION: National ethics (or bioethics) committees provide recommendations and guidance to governments and the public, thereby ensuring that public policies are informed by ethical concerns. Although the task is seemingly straightforward, implementation reveals numerous difficulties. Particularly in times of great uncertainty, such as during the current coronavirus disease 2019 pandemic, governments would be well advised to base their actions not only on technical considerations but also on the ethical guidance provided by a national ethics committee. We found that, if the advice of national ethics committees is to matter, they must be legally mandated, independent, diverse in membership, transparent and sufficiently funded to be effective and visible.

Improving assent in health research: a rapid systematic review.

BACKGROUND: Enrolment in a research study requires the participant's informed consent. In the case of minors, informed consent of the respective legal guardian is obtained in conjunction with informed assent of the underage p articipant. Since comprehension of the information provided may be limited, effective interventions to improve understanding should be identified. Thus, it is the objective of this study to review quantitative studies that tested interventions to improve the understanding of information provided during assent processes in health research. The studied population consisted of minors that participated or were willing to participate in research. The primary outcome was the level of comprehension after intervention. METHODS: A systematic search was conducted in eleven databases including regional databases: PubMed, Web of Science, ERIC, PsycINFO, CINAHL, POPLINE, AIM, LILACS, WPRIM, IMSEAR, and IMEMR and included references from inception of the database until July 2018 except PubMed which spanned the period from May 2013 to July 2018. Search terms focused on Informed Consent/Assent, Minors, and Comprehension. To complement the search, reference lists of retrieved publications were additionally searched. We included all quantitative studies that were conducted in minors, tested an intervention, covered assent processes in health research, and assessed comprehension. One reviewer screened titles, abstracts, and full-texts to determine eligibility and collected data on study design, population, intervention, methods, outcome, and for critical appraisal. Interventions comprised enhanced paper forms, interspersed questions, multimedia format, and others. RESULTS: Out of 7089 studies initially identified, 19 studies comprising 2805 participants and conducted in seven countries were included in the review. Fourteen studies (74 %) tested an intervention against control and ten (53 %) were randomized controlled trials. Heterogeneous methodology as well as incomplete outcome and statistical reporting impaired the reliability of the collected data. Positive effects were suggested for use of enhanced paper forms, interspersed questions, use of pie charts, and organizational factors. CONCLUSIONS: Improving assent in health research is an under-researched area with little reliable evidence. While some interventions are proposed to improve understanding in assent processes, further investigation is necessary to be able to give evidence-based recommendations. TRIAL REGISTRATION: PROSPERO ID: 106808.

Ethical issues in public health surveillance: a systematic qualitative review.

BACKGROUND: Public health surveillance is not ethically neutral and yet, ethics guidance and training for surveillance programmes is sparse. Development of ethics guidance should be based on comprehensive and transparently derived overviews of ethical issues and arguments. However, existing overviews on surveillance ethics are limited in scope and in how transparently they derived their results. Our objective was accordingly to provide an overview of ethical issues in public health surveillance; in addition, to list the arguments put forward with regards to arguably the most contested issue in surveillance, that is whether to obtain informed consent. METHODS: Ethical issues were defined based on principlism. We assumed an ethical issue to arise in surveillance when a relevant normative principle is not adequately considered or two principles come into conflict. We searched Pubmed and Google Books for relevant publications. We analysed and synthesized the data using qualitative content analysis. RESULTS: Our search strategy retrieved 525 references of which 83 were included in the analysis. We identified 86 distinct ethical issues arising in the different phases of the surveillance life-cycle. We further identified 20 distinct conditions that make it more or less justifiable to forego informed consent procedures. CONCLUSIONS: This is the first systematic qualitative review of ethical issues in public health surveillance resulting in a comprehensive ethics matrix that can inform guidelines, reports, strategy papers, and educational material and raise awareness among practitioners.

Ethical Considerations in Infodemic Management: Systematic Scoping Review.

BACKGROUND: During health emergencies, effective infodemic management has become a paramount challenge. A new era marked by a rapidly changing information ecosystem, combined with the widespread dissemination of misinformation and disinformation, has magnified the complexity of the issue. For infodemic management measures to be effective, acceptable, and trustworthy, a robust framework of ethical considerations is needed. OBJECTIVE: This systematic scoping review aims to identify and analyze ethical considerations and procedural principles relevant to infodemic management, ultimately enhancing the effectiveness of these practices and increasing trust in stakeholders performing infodemic management practices with the goal of safeguarding public health. METHODS: The review involved a comprehensive examination of the literature related to ethical considerations in infodemic management from 2002 to 2022, drawing from publications in PubMed, Scopus, and Web of Science. Policy documents and relevant material were included in the search strategy. Papers were screened against inclusion and exclusion criteria, and core thematic areas were systematically identified and categorized following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. We analyzed the literature to identify substantive ethical principles that were crucial for guiding actions in the realms of infodemic management and social listening, as well as related procedural ethical principles. In this review, we consider ethical principles that are extensively deliberated upon in the literature, such as equity, justice, or respect for autonomy. However, we acknowledge the existence and relevance of procedural practices, which we also consider as ethical principles or practices that, when implemented, enhance the efficacy of infodemic management while ensuring the respect of substantive ethical principles. RESULTS: Drawing from 103 publications, the review yielded several key findings related to ethical principles, approaches, and guidelines for practice in the context of infodemic management. Community engagement, empowerment through education, and inclusivity emerged as procedural principles and practices that enhance the quality and effectiveness of communication and social listening efforts, fostering trust, a key emerging theme and crucial ethical principle. The review also emphasized the significance of transparency, privacy, and cybersecurity in data collection. CONCLUSIONS: This review underscores the pivotal role of ethics in bolstering the efficacy of infodemic management. From the analyzed body of literature, it becomes evident that ethical considerations serve as essential instruments for cultivating trust and credibility while also facilitating the medium-term and long-term viability of infodemic management approaches.

Ethical implications of economic compensation for voluntary medical male circumcision for HIV prevention and epidemic control.

Despite tremendous efforts in fighting HIV over the last decades, the estimated annual number of new infections is still a staggering 1.5 million. There is evidence that voluntary medical male circumcision (VMMC) provides protection against men's heterosexual acquisition of HIV-1 infection. Despite good progress, most countries implementing VMMC for HIV prevention programmes are challenged to reach VMMC coverage rates of 90%. Particularly for men older than 25 years, a low uptake has been reported. Consequently, there is a need to identify, study and implement interventions that could increase the uptake of VMMC. Loss of income and incurred transportation costs have been reported as major barriers to uptake of VMMC. In response, it has been suggested to use economic compensation in order to increase VMMC uptake. In this discussion paper, we present and review relevant arguments and concerns to inform decision-makers about the ethical implications of using economic compensation, and to provide a comprehensive basis for policy and project-related discussions and decisions.