Global Bioethics最新文献_第5页

"Are we getting the biometric bioethics right?" - the use of biometrics within the healthcare system in Malawi. “我们的生物识别技术是否符合生物伦理?”-在马拉维的医疗保健系统中使用生物识别技术。

Global Bioethics Pub Date : 2020-06-05 DOI: 10.1080/11287462.2020.1773063

Mphatso Mwapasa, Kate Gooding, Moses Kumwenda, Marriott Nliwasa, Kruger Kaswaswa, Rodrick Sambakunsi, Michael Parker, Susan Bull, Nicola Desmond

{"title":"\"Are we getting the biometric bioethics right?\" - the use of biometrics within the healthcare system in Malawi.","authors":"Mphatso Mwapasa, Kate Gooding, Moses Kumwenda, Marriott Nliwasa, Kruger Kaswaswa, Rodrick Sambakunsi, Michael Parker, Susan Bull, Nicola Desmond","doi":"10.1080/11287462.2020.1773063","DOIUrl":"https://doi.org/10.1080/11287462.2020.1773063","url":null,"abstract":"Biometrics is the science of establishing the identity of an individual based on their physical attributes. Ethical concerns surrounding the appropriate use of biometrics have been raised, especially in resource-poor settings. A qualitative investigation was conducted to explore biometrics clients (n = 14), implementers (n = 12) and policy makers as well as bioethicists (n = 4) perceptions of the ethical aspects of implementing biometrics within the healthcare system in Malawi. Informed use, privacy and confidentiality as well as perceptions of benefits and harms were identified as major issues in the application of biometrics. Implementation of biometrics within the healthcare system in Malawi poses a range of potential ethical issues and practical challenges that impact on equitable uptake. There is a need for more research to explore the benefits and harms of biometrics in practice. Improved community engagement and sensitization should be a required component of biometrics introduction in Malawi.","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":" ","pages":"67-80"},"PeriodicalIF":0.0,"publicationDate":"2020-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/11287462.2020.1773063","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38472479","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 2

HIV prevention clinical trials' community engagement guidelines: inequality, and ethical conflicts. 艾滋病预防临床试验的社区参与指南:不平等和伦理冲突。

Global Bioethics Pub Date : 2020-06-05 DOI: 10.1080/11287462.2020.1773061

Morenike O Folayan, Kristin Peterson

{"title":"HIV prevention clinical trials' community engagement guidelines: inequality, and ethical conflicts.","authors":"Morenike O Folayan, Kristin Peterson","doi":"10.1080/11287462.2020.1773061","DOIUrl":"https://doi.org/10.1080/11287462.2020.1773061","url":null,"abstract":"In 2004 and 2005, the first clinical trials were launched to investigate the use of tenofovir for HIV prevention in Cambodia,Cameroon, Nigeria and Thailand. Controversies erupted over the ethical integrity of the research protocol. We reflect on the events that ledto the controversies and identified that scientific and ethical concerns raised by members of local communities at each of these sites wereerased by trialists, causing crisis that led to premature shut down the early PrEP trials. In the aftermath of these trials, the World HealthOrganisation, UNAIDS, and AVAC developed ethics guidelines intended to recognize the concerns as authentic, and developed guidelines toimprove researchers' engagement of communities in biomedical HIV prevention trial design and implementation. Our findings suggest thatthe ethics guidelines are limited in its ability to address power inequalities that leads to voice erasures and non-recognition of localcompetencies. Rather the ethical documents enabled trialists to gain a new sense of authority through the interpretations of ethical researchconduct enabling trialists regain power that can further entrench inequality and voice erasures. To address concerns with what seems anintractable problem, we suggested models of engagement for off-shored research may be the option.","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":" ","pages":"47-66"},"PeriodicalIF":0.0,"publicationDate":"2020-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/11287462.2020.1773061","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38472478","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 5

When can Muslims withdraw or withhold life support? A narrative review of Islamic juridical rulings. 穆斯林何时可以撤销或停止生命支持？伊斯兰司法裁决的叙述性回顾。

Global Bioethics Pub Date : 2020-03-22 eCollection Date: 2020-01-01 DOI: 10.1080/11287462.2020.1736243

Afshan Mohiuddin, Mehrunisha Suleman, Shoaib Rasheed, Aasim I Padela

{"title":"When can Muslims withdraw or withhold life support? A narrative review of Islamic juridical rulings.","authors":"Afshan Mohiuddin, Mehrunisha Suleman, Shoaib Rasheed, Aasim I Padela","doi":"10.1080/11287462.2020.1736243","DOIUrl":"10.1080/11287462.2020.1736243","url":null,"abstract":"When it is ethically justifiable to stop medical treatment? For many Muslim patients, families, and clinicians this ethical question remains a challenging one as Islamic ethico-legal guidance on such matters remains scattered and difficult to interpret. In light of this gap, we conducted a systematic literature review to aggregate rulings from Islamic jurists and juridical councils on whether, and when, it is permitted to withdraw and/or withhold life-sustaining care. A total of 16 fatwās were found, 8 of which were single-author rulings, and 8 represented the collective view of a juridical council. The fatwās are similar in that nearly all judge that Islamic law, provided certain conditions are met, permits abstaining from life-sustaining treatment. Notably, the justifying conditions appear to rely on physician assessment of the clinical prognosis. The fatwās differ when it comes to what conditions justify withdrawing or withholding life- sustaining care. Our analyses suggest that while notions of futility greatly impact the bioethical discourse regarding with holding and/or withdrawal of treatment, the conceptualization of futility lacks nuance. Therefore, clinicians, Islamic jurists, and bioethicists need to come together in order to unify a conception of medical futility and relate it to the ethics of withholding and/or withdrawal of treatment.","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":" ","pages":"29-46"},"PeriodicalIF":0.0,"publicationDate":"2020-03-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7144300/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37828819","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Informed consent in genomic research and biobanking: taking feedback of findings seriously. 基因组研究和生物银行中的知情同意:认真对待研究结果的反馈。

Global Bioethics Pub Date : 2020-02-23 DOI: 10.1080/11287462.2020.1717896

Paulina Tindana, Cornelius Depuur, Jantina de Vries, Janet Seeley, Michael Parker

{"title":"Informed consent in genomic research and biobanking: taking feedback of findings seriously.","authors":"Paulina Tindana, Cornelius Depuur, Jantina de Vries, Janet Seeley, Michael Parker","doi":"10.1080/11287462.2020.1717896","DOIUrl":"https://doi.org/10.1080/11287462.2020.1717896","url":null,"abstract":"Genomic research and biobanking present several ethical, social and cultural challenges, particularly when conducted in settings with limited scientific research capacity. One of these challenges is determining the model of consent that should support the sharing of human biological samples and data in the context of international collaborative research. In this paper, we report on the views of key research stakeholders in Ghana on what should count as good ethical practice when seeking consent for genomic research and biobanking in Africa. This study was part of a multi-country qualitative case study conducted in three African countries: Ghana, Uganda and Zambia under the auspices of the Human Heredity and Health in Africa initiative (H3Africa). Our study suggests that while participants are willing to give consent for their samples and associated data to be used for future research purposes, they expect to receive feedback about the progress of the research and about the kinds of research being undertaken on their samples and data. These expectations need to be anticipated and discussed during the consent process which should be seen as part of an ongoing communication process throughout the research process.","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":" ","pages":"200-215"},"PeriodicalIF":0.0,"publicationDate":"2020-02-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/11287462.2020.1717896","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38732986","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 13

Ethics and etiquette in an emergency vaccine trial. The orchestration of compliance. 紧急疫苗试验中的道德与礼仪遵从性的编排。

Global Bioethics Pub Date : 2020-02-21 eCollection Date: 2020-01-01 DOI: 10.1080/11287462.2020.1726591

Arsenii Alenichev

{"title":"Ethics and etiquette in an emergency vaccine trial. The orchestration of compliance.","authors":"Arsenii Alenichev","doi":"10.1080/11287462.2020.1726591","DOIUrl":"https://doi.org/10.1080/11287462.2020.1726591","url":null,"abstract":"Participant non-compliance and withdrawal from randomized clinical trials has increased focus on analysing the results from the \"per-protocol\" population that complies with a trial's protocols. There is no clear understanding of what shapes protocol compliance in practice. In this paper, I theorize clinical research from the perspective of participants in an Ebola vaccine trial by analysing the practices that contributed to very high compliance rates. In this setting, per-protocol compliance became an essential component in forming a class of \"proper\" researchers and participants working together in the rapidly expanding market of clinical research. Bioethics supports participants' right to withdraw from research as an ethical safeguard in the process. But participants seeking affiliations with powerful institutions may voluntarily embrace their trial responsibilities over a right to withdraw. To understand this phenomenon, this analysis uses the notion of bioetiquette - the set of rules specifying \"proper\" and \"improper\" trial subjects and behaviours - which runs in the shadow of formal bioethics in trials and requires careful transdisciplinary examination.","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":" ","pages":"13-28"},"PeriodicalIF":0.0,"publicationDate":"2020-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/11287462.2020.1726591","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37726314","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 2

Community engagement and ethical global health research. 社区参与和伦理全球卫生研究。

Global Bioethics Pub Date : 2019-12-20 eCollection Date: 2020-01-01 DOI: 10.1080/11287462.2019.1703504

Bipin Adhikari, Christopher Pell, Phaik Yeong Cheah

{"title":"Community engagement and ethical global health research.","authors":"Bipin Adhikari, Christopher Pell, Phaik Yeong Cheah","doi":"10.1080/11287462.2019.1703504","DOIUrl":"https://doi.org/10.1080/11287462.2019.1703504","url":null,"abstract":"Community engagement is increasingly recognized as a critical element of medical research, recommended by ethicists, required by research funders and advocated in ethics guidelines. The benefits of community engagement are often stressed in instrumental terms, particularly with regard to promoting recruitment and retention in studies. Less emphasis has been placed on the value of community engagement with regard to ethical good practice, with goals often implied rather than clearly articulated. This article outlines explicitly how community engagement can contribute to ethical global health research by complementing existing established requirements such as informed consent and independent ethics review. The overarching and interlinked areas are (1) respecting individuals, communities and stakeholders; (2) building trust and social relationships; (3) determining appropriate benefits; minimizing risks, burdens and exploitation; (4) supporting the consent process; (5) understanding vulnerabilities and researcher obligations; (6) gaining permissions, approvals and building legitimacy and (7) achieving recruitment and retention targets.","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":" ","pages":"1-12"},"PeriodicalIF":0.0,"publicationDate":"2019-12-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/11287462.2019.1703504","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37594481","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 72

Health assessment and the capability approach. 健康评估和能力方法

Global Bioethics Pub Date : 2019-09-30 eCollection Date: 2019-01-01 DOI: 10.1080/11287462.2019.1673028

Rodrigo López Barreda, Joelle Robertson-Preidler, Paula Bedregal García

引用次数: 0

The features and qualities of online training modules in research ethics: a case study evaluating their institutional application for the University of Botswana. 研究伦理在线培训模块的特点和质量:博茨瓦纳大学机构应用评估案例研究

Global Bioethics Pub Date : 2019-03-26 DOI: 10.1080/11287462.2019.1592305

Dolly Mogomotsi Ntseane, Joseph Ali, Kristina Hallez, Boikanyo Mokgweetsi, Mary Kasule, Nancy E Kass

{"title":"The features and qualities of online training modules in research ethics: a case study evaluating their institutional application for the University of Botswana.","authors":"Dolly Mogomotsi Ntseane, Joseph Ali, Kristina Hallez, Boikanyo Mokgweetsi, Mary Kasule, Nancy E Kass","doi":"10.1080/11287462.2019.1592305","DOIUrl":"10.1080/11287462.2019.1592305","url":null,"abstract":"Research ethics remains a cornerstone of the scientific enterprise as it defines the boundaries of responsible conduct of research. Our aim was to systematically identify, review and test online training courses in research ethics which could be considered most appropriate for future training at the University of Botswana (UB). We used an evaluative tool that included both descriptive and evaluative criteria for assessing the strengths, weaknesses and appropriateness of 10 online research ethics courses which are publicly accessible. We then assembled Focus Group Discussions (FGDs) to engage the UB community to select the best 2-3 online courses that are considered most suited for use in future training of research ethics at UB. Twenty respondents participated in three FGDs. Our findings show that there is limited research ethics training capacity in low resourced academic institutions like UB. Online training opportunities could be used to address this challenge. Our analysis reveal that out of the 10 online courses reviewed, CITI program, Family Health International, and Training and Resource in Research Ethics Evaluation have characteristics that would make them suitable for utilization in Botswana. We believe the findings from this case study will be of value to other similarly situated research institutions.","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":"31 1","pages":"133-154"},"PeriodicalIF":0.0,"publicationDate":"2019-03-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7733899/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38732982","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia. 在基因组学研究中使用广泛同意和相关程序：来自赞比亚一所大学教学医院风湿性心脏病遗传学（RHDGen）研究参与者的观点。

Global Bioethics Pub Date : 2019-03-24 DOI: 10.1080/11287462.2019.1592868

Oliver Mweemba, John Musuku, Bongani M Mayosi, Michael Parker, Rwamahe Rutakumwa, Janet Seeley, Paulina Tindana, Jantina De Vries

{"title":"Use of broad consent and related procedures in genomics research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease (RHDGen) study in a University Teaching Hospital in Zambia.","authors":"Oliver Mweemba, John Musuku, Bongani M Mayosi, Michael Parker, Rwamahe Rutakumwa, Janet Seeley, Paulina Tindana, Jantina De Vries","doi":"10.1080/11287462.2019.1592868","DOIUrl":"10.1080/11287462.2019.1592868","url":null,"abstract":"The use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and comprehension of difficult scientific concepts. To explore these and other challenges, we conducted a study using qualitative methods with participants enrolled in an H3Africa Rheumatic Heart Disease genomics study (the RHDGen network) in Zambia to explore their views on broad consent, sample and data sharing and secondary use. In-depth interviews were conducted with RHDGen participants (n = 18), study staff (n = 5) and with individuals who refused to participate (n = 3). In general, broad consent was seen to be reasonable if reasons for storing the samples for future research use were disclosed. Some felt that broad consent should be restricted by specifying planned future studies and that secondary research should ideally relate to original disease for which samples were collected. A few participants felt that broad consent would delay the return of research results to participants. This study echoes findings in other similar studies in other parts of the continent that suggested that broad consent could be an acceptable consent model in Africa if careful thought is given to restrictions on re-use.","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":"31 1","pages":"184-199"},"PeriodicalIF":0.0,"publicationDate":"2019-03-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7734073/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38732985","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda. 什么是非洲基因组研究的良好伦理实践？乌干达基因组研究参与者的观点。

Global Bioethics Pub Date : 2019-03-24 DOI: 10.1080/11287462.2019.1592867

Rwamahe Rutakumwa, Jantina de Vries, Michael Parker, Paulina Tindana, Oliver Mweemba, Janet Seeley

{"title":"What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda.","authors":"Rwamahe Rutakumwa, Jantina de Vries, Michael Parker, Paulina Tindana, Oliver Mweemba, Janet Seeley","doi":"10.1080/11287462.2019.1592867","DOIUrl":"10.1080/11287462.2019.1592867","url":null,"abstract":"Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic research participants, researchers, research ethics committee members, policy makers and community members. This paper presents the findings from in-depth interviews with 27 people with diabetes who had participated in a diabetes genomic study. Data were collected using semi-structured interviews. Manual thematic content analysis was conducted using a framework approach. Findings indicate three key requirements that research participants see as vital for genomic research to be more responsive to research participants' needs and contextual realities: (1) de-emphasising the role of experts and institutions in the consenting process, (2) clarity about the timing and nature of feedback both of findings relevant to the health of individuals and about the broad progress of the study, and (3) more effective support for research participants during and after the study.","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":"31 1","pages":"169-183"},"PeriodicalIF":0.0,"publicationDate":"2019-03-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7734109/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38732984","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0