Developing World Bioethics最新文献

{"title":"The difficult path to euthanasia in Ecuador: A call for actions for other nations","authors":"Esteban Ortiz-Prado, Jorge Vasconez-Gonzalez, Juan S. Izquierdo-Condoy","doi":"10.1111/dewb.12449","DOIUrl":"10.1111/dewb.12449","url":null,"abstract":"","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":"24 2","pages":"52-53"},"PeriodicalIF":2.2,"publicationDate":"2024-03-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140177565","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":"A survey of the allocation of scarce resources in Türkiye during the COVID-19 pandemic: Which criteria did healthcare professionals prioritize?","authors":"Rahime Aydin Er, Gülten Çevik Nasirlier","doi":"10.1111/dewb.12448","DOIUrl":"https://doi.org/10.1111/dewb.12448","url":null,"abstract":"<p><p>COVID-19 caused an imbalance between medical resources and the number of patients in Türkiye like in many countries. There was not pandemic-triage system, and this situation led to decision making based on experience, intuition, and judgment of allocation of scarce resources. The research explains the guiding criteria that healthcare professionals used to prioritize the distribution of scarce medical resources during the COVID-19 pandemic. The criteria preferred by 928 healthcare professionals were evaluated when preventive measures for COVID-19 were reduced and so the number of cases increased rapidly. The results indicate that Turkish healthcare professionals largely support the utilitarian approach, which focuses on medical benefit in pandemic. The main problem was that some criteria not approved in COVID-19 triage guidelines were considered important by healthcare professionals. These criteria, which cause discrimination by preventing the provision of fair and equal medical care to patients, are a prominent issue in the study.</p>","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2024-03-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140177564","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 informed consent process: An evaluation of the challenges and adherence of Ghanaian researchers","authors":"Paa-Kwesi Blankson,&nbsp;Florence Akumiah,&nbsp;Amos Laar,&nbsp;Lisa Kearns,&nbsp;Samuel Asiedu Owusu","doi":"10.1111/dewb.12447","DOIUrl":"10.1111/dewb.12447","url":null,"abstract":"<p>This study assessed challenges faced by researchers with the informed consent process (ICP). In-depth interviews were used to explore challenges encountered by Investigators, Research assistants, Institutional Review Board members and other stakeholders. An electronic questionnaire was also distributed, consisting of Likert-scale responses to questions on adherence to the ICP, which were derived from the Helsinki Declaration and an informed consent checklist of the US Department of Health and Human Research (HSS). Responses were weighted numerically and scores calculated for each participant. The median score of the level of adherence to the informed consent process was 93%. Most of the respondents (60%) cited the lack of time for the ICP to be a challenge, with 65% indicating a lengthy consent document to be the main challenge with the informed consent document. Challenges with language and communication were the dominant theme among informants. Despite the high adherence of Ghanaian researchers and research assistants to the ICP, challenges are still prevalent, requiring diligent and continuous efforts in research implementation.</p>","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":"25 1","pages":"55-61"},"PeriodicalIF":0.9,"publicationDate":"2024-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140112102","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":"Biomedical research on autism in low- and middle-income countries: Considerations from the South African context","authors":"Siobhan de Lange PhD,&nbsp;Dee Muller PhD,&nbsp;Chloe Dafkin PhD","doi":"10.1111/dewb.12446","DOIUrl":"10.1111/dewb.12446","url":null,"abstract":"<p>Autism Spectrum Disorder (ASD) is a neurodevelopmental condition characterized by social/communicative difficulties and perseverative behaviours. While research on autism has flourished recently, few studies have been conducted on the disorder in non-Western contexts. In low- and middle-income countries (LMICs), biomedical research on autism is required to better understand the needs of the population and to develop contextually appropriate interventions. However, autistic individuals are a vulnerable study population and LMICs present with various considerations. While the presentation of autism is heterogeneous, stigma is a common social consequence affecting research. Drawing specifically on the South African context, the ethical intersections of these issues are discussed, along with the limitations of the current informed consent process. Community engagement is recommended as an adjunct to informed consent to ensure that biomedical research is conducted in a more inclusive way. Practical pointers are provided for implementing systematic support for conducting community engagement alongside biomedical research.</p>","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":"25 1","pages":"62-70"},"PeriodicalIF":0.9,"publicationDate":"2024-02-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/dewb.12446","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139974330","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":"From moral rights to legal rights? Lessons from healthcare contexts","authors":"Michael Da Silva","doi":"10.1111/dewb.12444","DOIUrl":"10.1111/dewb.12444","url":null,"abstract":"<p>Many believe the existence of a moral right to some good should lead to recognition of a corresponding legal right to that good. If, for instance, there is a moral right to healthcare, it is natural to believe countries should recognize a legal right to healthcare. This article demonstrates that justifying legal rights to healthcare is more difficult than many assume. The existence of a moral right is insufficient to justify recognition of a corresponding justiciable constitutional right. Further conditions on when it is appropriate to recognize constitutional rights are rarely satisfied in the healthcare case. And focusing on aspirational or statutory rights presents costs for those seeking to justify legal rights on the basis of corresponding moral ones while maintaining empirical challenges for justifying constitutional rights. This suggests movement from a moral right to a corresponding legal one is far from straightforward and justifies examining alternative means of realizing moral socio-economic rights such as the proposed moral right to healthcare.</p>","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":"24 1","pages":"21-30"},"PeriodicalIF":2.2,"publicationDate":"2024-02-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/dewb.12444","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139713359","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":"Morality and Access to Essential Medicines: Pairing the Theoretical and Practical","authors":"Michael Da Silva SJD,&nbsp;Andreas Albertsen PhD","doi":"10.1111/dewb.12445","DOIUrl":"10.1111/dewb.12445","url":null,"abstract":"&lt;p&gt;Access to essential medicines is uneven within and across states. Many persons do not have secure access to medicines necessary to live even less demanding conceptions of the good life, however defined. Questions concerning access to essential medicines implicate fundamental health justice concerns central to the branch of contemporary bioethics concerned with the field's relationship to political philosophy. A striking part of this inequality is its global dimension. Access to essential medicines is particularly restricted for those who live in less affluent countries. These concerns are acute in the context of ‘developing world’ bioethics given that issues in relevant states cluster with other disadvantages and state capacities that are limited in other aspects.&lt;/p&gt;&lt;p&gt;This situation raises two questions in particular: (1) What makes inequalities in access to essential medicines wrongful? and (2) What can and should be done about it (and by whom)? It is tempting to sever these questions and understandable to do so given their magnitude and scope. Important work treats each independently and thereby provides valuable insights. The first question pertains to core theoretical issues regarding value and justice. Such conceptual concerns can be fruitfully addressed without in-depth analysis of practical details. Indeed, details of real-world cases can skew intuitions about concepts. The second question then appears explicitly practical. One may worry that focusing on ‘philosophical’ questions can stop one from taking necessary action. If, as it would seem, a lack of access to essential medicines is a problem on (almost) any moral view, one may be better served by addressing the problem head-on rather than worrying about the precise nature of the wrong to be addressed.&lt;/p&gt;&lt;p&gt;However, as readers of this journal are aware, different moral problems can call for different practical responses, and many practical interventions need a clear sense of the problem at hand to properly solve it. Bioethics is partly characterized by its attention to interactions between theoretical and practical questions. Therefore, treating the two questions in tandem can be helpful even if one emphasizes one more than the other. This allows for perspectives where our answers to one inform those given to another.&lt;/p&gt;&lt;p&gt;The works in this special issue demonstrate how answers to each question implicate answers to the other and the value of treating them in tandem instead of in isolation. Nicole Hassoun's &lt;i&gt;Global Health Impact: Extending Access to Essential Medicines&lt;/i&gt;1 provides proof of concept for this dual analysis and is a touchstone for each article. Existing data on absolute and relative access to essential medicines highlights global, regional, national, and even sub-national inequalities that naturally raise questions regarding who (if anyone) is responsible for assisting those who are worse off. In relation to health, these questions also pertain to whether responsi","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":"24 1","pages":"3-5"},"PeriodicalIF":2.2,"publicationDate":"2024-02-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/dewb.12445","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139703909","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":"Global Health Impact: Human rights, access to medicines, and measurement","authors":"Nicole Hassoun","doi":"10.1111/dewb.12441","DOIUrl":"10.1111/dewb.12441","url":null,"abstract":"<p>Should people have a legal human right to health? And, if so, what exactly does protecting this right require? This essay defends some answers to these questions recently articulated in <i>Global Health Impact</i>. It explains how these answers depend on a particular way of thinking about health and the minimally good life, how quality of life matters at and over time, what various agents should do to help people who are unable to live well enough, and many other things. Moreover, it suggests some ways of improving common metrics for measuring and advancing our collective global health impact.</p>","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":"24 1","pages":"37-48"},"PeriodicalIF":2.2,"publicationDate":"2024-02-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/dewb.12441","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139703908","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 wisdom of claiming ownership of human genomic data: A cautionary tale for research institutions","authors":"Donrich Thaldar","doi":"10.1111/dewb.12443","DOIUrl":"10.1111/dewb.12443","url":null,"abstract":"<p>This article considers the practical question of how research institutions should best structure their legal relationship with the human genomic data that they generate. The analysis, based on South African law, is framed by the legal position that although a research institution that generates human genomic data is not automatically the owner thereof, it is well positioned to claim ownership of newly generated data instances. Given that the research institution exerts effort to generate the data, it can be argued that it has a moral right to claim ownership of such data. Combined with the fact that it has an interest in having comprehensive rights in such data, it appears that the prudent policy for research institutions is to claim ownership of the human genomic data instances that they generate. This policy is tested against two opposing policy positions. The first opposing policy position is that research <i>participants</i> should own the data that relate to them. However, in light of data protection legislation that already provides extensive protections to research participants, bestowing data ownership on research participants would offer little benefit to such individuals, while leading to significant practical problems for research institutions. The second opposing policy position is that the concept of ownership should be abandoned in favour of data <i>custodianship</i>. This opposing position is problematic, as avoiding reference to ownership is a denial of legal reality and hence not a useful policy. Also, avoiding reference to ownership will leave research institutions with limited legal remedies in the event of appropriation of data by third parties. Accordingly, it is concluded that the wisest policy for research institutions is indeed to explicitly claim ownership of the human genomic data instances that they generate.</p>","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":"25 1","pages":"16-23"},"PeriodicalIF":0.9,"publicationDate":"2024-01-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11289161/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139652013","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":"Ethical and legal challenges of medical AI on informed consent: China as an example","authors":"Yue Wang PhD,&nbsp;Zhuo Ma","doi":"10.1111/dewb.12442","DOIUrl":"10.1111/dewb.12442","url":null,"abstract":"<p>The escalating integration of Artificial Intelligence (AI) in clinical settings carries profound implications for the doctrine of informed consent, presenting challenges that necessitate immediate attention. China, in its advancement in the deployment of medical AI, is proactively engaging in the formulation of legal and ethical regulations. This paper takes China as an example to undertake a theoretical examination rooted in the principles of medical ethics and legal norms, analyzing informed consent and medical AI through relevant literature data. The study reveals that medical AI poses fundamental challenges to the accuracy, adequacy, and objectivity of information disclosed by doctors, alongside impacting patient competency and willingness to give consent. To enhance adherence to informed consent rules in the context of medical AI, this paper advocates for a shift towards a patient-centric information disclosure standard, the restructuring of medical liability rules, the augmentation of professional training, and the advancement of public understanding through educational initiatives.</p>","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":"25 1","pages":"46-54"},"PeriodicalIF":0.9,"publicationDate":"2024-01-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139492398","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":"Understanding cultural values, norms and beliefs that may impact participation in genome-editing related research: Perspectives of local communities in Botswana","authors":"Setlhomo Koloi-Keaikitse,&nbsp;Mary Kasule,&nbsp;Irene Kwape,&nbsp;Dudu Jankie,&nbsp;Dimpho Ralefala,&nbsp;Dolly Mogomotsi Ntseane,&nbsp;Gaonyadiwe George Mokone","doi":"10.1111/dewb.12440","DOIUrl":"10.1111/dewb.12440","url":null,"abstract":"<p>Gene-editing research is a complex science and foreign in most communities including Botswana. Adopting a qualitative deliberative framework with 109 participants from 7 selected ethnic communities in Botswana, we explored the perceptions of local communities on cultural values, norms, and beliefs that may motivate or deter likely participation in the use of gene-editing related research. What emerged as the ethnic community's motivators for research participation include the potential for gene-editing technologies to promote access to individualized medications, and the possibility of protecting family members from genetic related diseases. Deterrents for research participation include cultural values such as implications of lineage for chieftainship, trust, fear or anxiety, uncertainty, and sensitivity on the use of gene-editing. Findings of our study have implications for continuous engagement with local communities to explore potential ways of addressing cultural sensitivities that can further deter their participation in future gene-editing related research.</p>","PeriodicalId":50590,"journal":{"name":"Developing World Bioethics","volume":"25 1","pages":"24-34"},"PeriodicalIF":0.9,"publicationDate":"2024-01-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/dewb.12440","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139418481","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}