Developing World Bioethics最新文献

{"title":"Ethical analysis of informed consent methods in longitudinal cohort studies: A Chinese perspective","authors":"Kun Li, Mingtao Huang, Xiaomei Zhai, Chen Wang","doi":"10.1111/dewb.12460","DOIUrl":"https://doi.org/10.1111/dewb.12460","url":null,"abstract":"In longitudinal cohort studies involving large populations over extended periods, informed consent entails numerous urgent challenges. This paper explores challenges regarding informed consent in long‐term, large‐scale longitudinal cohort studies based on the longitudinal and dynamic nature of such research. It analyzes and evaluates widely recognized broad consent and dynamic consent methods, highlighting limitations concerning their ability to adapt to evolving research objectives and participant perspectives. This paper discusses trust‐based informed consent and emphasizes the needs to establish and maintain trust with research participants and to balance information disclosure with respect for participants' autonomy. Informed consent in long‐term studies is an evolving process that must adapt to changing research environments. Based on participant trust, researchers should observe and assess potential research risks. Finally, the paper recommends enhancing institutional credibility, implementing reconsent procedures, and ensuring robust ethical oversight to safeguard participants' rights despite the complexity of modern biomedical research.","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":null,"pages":null},"PeriodicalIF":2.2,"publicationDate":"2024-09-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142266017","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Social disharmony, inauthenticity and patriarchy: an Ubuntu perspective on the practice of female genital mutilation.","authors":"Tauseef Ahmad Ally, Lizeka Amanda Tandwa","doi":"10.1111/dewb.12464","DOIUrl":"https://doi.org/10.1111/dewb.12464","url":null,"abstract":"<p><p>Female Genital Mutilation (FGM) is a universal issue which affects girls in Africa, the Middle East, Asia and South America, and immigrant communities in Western Europe, North America, Australia and New Zealand. FGM is a cultural practice in approximately 29 countries in Africa, affecting over 140 million girls. FGM is practiced as a rite of passage, where girls are initiated into womanhood. This practice is promoted as a means for incorporation, thus ascribing personhood, and belonging for girls to their communities. African scholars hold conflicting positions about FGM, with some arguing that it is essential for relational fullness and harmony. While others believe FGM is unjustified because of the health and social risks associated with the practice. We argue, applying sustainable social harmony and Gyekye's views on cultural revitalization, that FGM is morally unjustified and should be prohibited. We believe the claims that FGM fosters harmony, a value of Ubuntu, are fallacious, and this perceived harmony is pretentious and unsustainable. We claim that FGM is inauthentic, unjust and steeped in patriarchal underpinnings that are unsustainable, thus it is a disharmonious practice. Cultural practices that are disharmonious should be refined and pruned and must be dynamic and responsive to current realities.</p>","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":null,"pages":null},"PeriodicalIF":0.9,"publicationDate":"2024-09-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142146762","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Oropouche fever in Brazil: When the time is now","authors":"Debora Diniz,&nbsp;Luciana Brito,&nbsp;Giselle Carino,&nbsp;Alessandra Hora dos Santos","doi":"10.1111/dewb.12463","DOIUrl":"10.1111/dewb.12463","url":null,"abstract":"&lt;p&gt;“We have the right to be informed of the latest scientific learnings in real time. Ultimately, it falls upon us to inform and care for these families, women, and children”, states Alessandra Hora dos Santos, who cosigns this editorial. Ms. Hora dos Santos oversees one of the several community-level non-governmental organizations created to safeguard the needs and rights of women and their children affected by the Zika virus in Brazil, “Família de Anjos”.&lt;/p&gt;&lt;p&gt;Brazil has a public health system, but the needs of children with Zika congenital syndrome are diverse and demand a strong connection between providers and facilities: from adapted transportation for mobility to daily physiotherapy, from access to home care for more dependent children to access to high-cost medicines. Família de Anjos leads political advocacy to prioritize Zika-affected children's treatment and offers some public-private partnership services. They connect around 400 women and their families in Alagoas, a small state in the poor Northeast, where Zika has hit communities dramatically since 2015.1 When Ms. Hora dos Santos emphasizes the organization's role in providing care, she highlights how the experience of health emergencies has different timings for communities and policies, for the lived experience of people and the abstraction of numbers. While an epidemic may be over in terms of health policies and surveillance guidelines, it can be a long-lasting experience for those most affected by it.2&lt;/p&gt;&lt;p&gt;Brazil has been the epicenter of two significant public health emergencies that have had a profound impact on women of reproductive age. The initial outbreak of the Zika virus occurred in 2015, with a subsequent decline in new cases over the past six years. However, the risk to women residing in endemic mosquito zones persists. Ms. Hora's organization has received approximately eight cases of Zika-affected children each year since the epidemic was declared to be over by the Brazilian Ministry of Health. The second health emergency was the global pandemic of the Covid-19 virus, which has resulted in elevated maternal mortality rates in the same zones as those most affected by Zika.3 Moreover, children with Zika faced interrupted treatment during the pandemic due to the lack of services, medicines, and social distancing.4&lt;/p&gt;&lt;p&gt;In July 2024, a new threat emerged in the conversations of the WhatsApp groups in which Ms. Hora participated with other women: Oropouche fever. The Oropouche virus has been circulating in Brazil for several decades mostly confined to the North region but has recently migrated to different parts of the country due to environmental changes. The vectors are another well-known mosquito in the communities, where the first cases of adult deaths, spontaneous abortion, stillbirth, or the birth of newborns with microcephaly –all tell-tale signs of Oropouche– have been reported.5 The symptoms of Oropouche fever are quite similar to other febrile arbovirus, incl","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":null,"pages":null},"PeriodicalIF":0.9,"publicationDate":"2024-08-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/dewb.12463","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142114409","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Letter to the Editor as a tool to promote critical thinking in Latin American bioethics pedagogy.","authors":"Timothy Daly","doi":"10.1111/dewb.12462","DOIUrl":"https://doi.org/10.1111/dewb.12462","url":null,"abstract":"","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":null,"pages":null},"PeriodicalIF":0.9,"publicationDate":"2024-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142019459","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Personhood: An emergent view from Africa and the West.","authors":"Nancy S Jecker, Caesar A Atuire","doi":"10.1111/dewb.12461","DOIUrl":"https://doi.org/10.1111/dewb.12461","url":null,"abstract":"<p><p>African understandings of personhood are complex, with different accounts emphasizing distinct aspects of what it means to be a person. Some accounts stress excellence of character and performing well in social roles and relationships, while others focus on innate moral qualities of individuals independent of their conduct and character. This paper sheds new light on these twin aspects of personhood. It proposes a way to navigate these dual features by bringing African and Western personhood into conversation, building on the strengths of each approach, and developing a new view of personhood that we call, Emergent Personhood. Section 1 introduces diverse approaches to personhood within African thought. Section 2 compares African and Western approaches. Section 3 evaluates advantages and disadvantages of each and identifies conditions that any account of personhood must meet to leverage the advantages and avoid the disadvantages identified. Section 4 introduces Emergent Personhood, which meets these conditions. Section 5 concludes that expanding the conversation about personhood across cultures enriches an ongoing conversation about what it means to be a person.</p>","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":null,"pages":null},"PeriodicalIF":0.9,"publicationDate":"2024-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142019458","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Factors associated with Saudi physicians' utilization of clinical ethics consultation services.","authors":"Ruaim A Muaygil, Raaoum M Jabor, Rahaf A Alrayes, Ghada S Alharbi, Shaima A Alqoud, Manar A Alenazi, Ftoon A Alenazi, Taim A Muayqil","doi":"10.1111/dewb.12459","DOIUrl":"https://doi.org/10.1111/dewb.12459","url":null,"abstract":"<p><p>Clinical Ethics Consultation (CEC) aims to resolve ethical dilemmas at the bedside. Through a structured process, CEC allows practitioners and patients to consult ethicists at times of moral conflict or uncertainty. Over the past few decades, CEC has become an invaluable part of healthcare practice. In Saudi Arabia, however, CEC services remain inexplicably underutilized. This study attempts to understand the factors associated with Saudi physicians' utilization of CEC to better meet the needs of practitioners and patients. Results indicate that although physicians routinely experience moral dilemmas, they seldom request a CEC. This is not due to unfamiliarity, lack of accessibility, or suspicion of ethical expertise. Rather, reluctance is likely due to an ingrained medical cultural stronghold that pressures practitioners to act heroically, and to resolve ethical dilemmas independently. Recommendations to improve the utilization of CEC services include wider availability, active collaborations with clinical practitioners, routine quality improvements, and managerial and national support.</p>","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":null,"pages":null},"PeriodicalIF":0.9,"publicationDate":"2024-07-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141617506","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Modifications to consent documentation with adults with communication disorders following brain injury: An exploratory study.","authors":"Jennifer Watermeyer, Chiara Aylward","doi":"10.1111/dewb.12458","DOIUrl":"https://doi.org/10.1111/dewb.12458","url":null,"abstract":"<p><p>Consent documentation for research studies is often inaccessible to people with neurogenic communication disorders following brain injury and there is limited literature on specific modifications for informed consent. This exploratory study aimed to identify effective strategies and modifications to consent processes for adults with brain injury. Using a fictitious research study, we developed a set of Participant Information Sheets (PISs) varying in complexity, presentation format, and communication modality. Evaluations were conducted with eight participants. Findings indicated diverse participant preferences for PIS modifications, suggesting simplified vocabulary, reduced text, carefully selected images, and an interactive presentation modality as helpful strategies. Building on previous literature, we present refined guidelines for consent modifications for adults with neurogenic communication disorder after brain injury. These guidelines can promote more appropriate inclusion of communicatively impaired populations in research and assist ethics committees and researchers in preparing modified consent documents.</p>","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":null,"pages":null},"PeriodicalIF":0.9,"publicationDate":"2024-07-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141617507","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Analysis of the legal situation regarding euthanasia in Ecuador, Colombia, and Peru: Towards a Latin American model of medical assistance in dying?","authors":"Luis Espericueta","doi":"10.1111/dewb.12457","DOIUrl":"https://doi.org/10.1111/dewb.12457","url":null,"abstract":"<p><p>Colombia was one of the first countries to decriminalise euthanasia. However, what is known in the international academic literature about the country's regulations is scarce and outdated. Such lack of information on the situation in Latin America is even more evident in the case of Peru, where the Lima Superior Court of Justice set a precedent by allowing a person to have access to euthanasia in 2021. Ecuador, which has just decriminalised euthanasia for all its citizens in February 2024, risks being similarly absent from the international dialogue. This article summarises for the first time all the regulations in force regarding euthanasia in Latin America, through a study of primary sources in Spanish, and analyses some of the convergences between these three neighbouring countries.</p>","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":null,"pages":null},"PeriodicalIF":0.9,"publicationDate":"2024-07-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141592035","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Benefit-sharing with human participants in health research in South Africa: A call for clarity.","authors":"Claude Kamau, Larisse Prinsen, Donrich Thaldar","doi":"10.1111/dewb.12456","DOIUrl":"https://doi.org/10.1111/dewb.12456","url":null,"abstract":"<p><p>This study critically examines the concept of benefit-sharing in the context of health research involving human participants in South Africa, identifying a significant gap in the precision and application of terminology. It introduces a new terminological framework designed to provide clarity and facilitate standardisation in both national and international discourse on benefit-sharing. The analysis extends to the complex legal landscape in South Africa, highlighting the nuances of mandated, permitted, and prohibited practices of benefit-sharing across various statutes. This reveals substantial implications for ethics committees, researchers, and participants, emphasising the need for a legal and ethical recalibration. Furthermore, the manuscript critiques South Africa's main ethics instruments for their inadequate guidance on benefit-sharing and proposes recommendations for enhancing the Department of Health's ethics guidelines. By advocating for a coherent, legally informed approach to ethical decision-making, the study underscores the need for integrating the proposed framework and legal insights into ethics guidelines. This comprehensive strategy aims not only to advance ethical practices within South Africa but also to contribute significantly to the global discourse on benefit-sharing in health research.</p>","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":null,"pages":null},"PeriodicalIF":2.2,"publicationDate":"2024-05-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141176791","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The ethics of research informed consent from the Kyrgyz perspective: A qualitative study.","authors":"Tamara Kudaibergenova","doi":"10.1111/dewb.12451","DOIUrl":"https://doi.org/10.1111/dewb.12451","url":null,"abstract":"<p><p>To ensure informed consent is tailored to ethnic Asian communities, it is necessary to establish an ethical foundation that is relevant to the specific populations. We hypothesized that certain communitarian factors unique to traditional Kyrgyz culture may influence an individual's decision to participate in research. Guided by Seedhouse's (2005) Rational Field Theory, we conducted qualitative, in-depth interviews with cultural experts in Kyrgyzstan to identify the ethical foundations of decision-making for informed consent in Kyrgyz culture. The results indicate that Kyrgyz people have a distinctive decision-making style influenced by their nomadic culture and history, which values and prioritizes family integrity and reputation. These findings indicate that a multidimensional approach based on socio-cultural sensitivities is necessary to assess the appropriateness of consent procedures. We believe our results may have implications for revising the guidelines of local and regional research ethics committees in Kyrgyzstan and other Central Asian countries.</p>","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":null,"pages":null},"PeriodicalIF":2.2,"publicationDate":"2024-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140923884","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}