Global BioethicsPub Date : 2020-12-09DOI: 10.1080/11287462.2020.1855712
Janet Seeley, Michael Parker
{"title":"Editorial - ethical practice and genomic research.","authors":"Janet Seeley, Michael Parker","doi":"10.1080/11287462.2020.1855712","DOIUrl":"https://doi.org/10.1080/11287462.2020.1855712","url":null,"abstract":"Genomic research offers the potential of significant improvements in diagnosis, treatment, and in health care more broadly. The achievement of these benefits against a background of well-founded pu...","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":" ","pages":"164-168"},"PeriodicalIF":0.0,"publicationDate":"2020-12-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/11287462.2020.1855712","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38732983","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}
Global BioethicsPub Date : 2020-12-02DOI: 10.1080/11287462.2020.1853001
Gershom Chongwe, Bornwell Sikateyo, Linda Kampata, Joseph Ali, Kristina Hallez, Adnan A Hyder, Nancy Kass, Charles Michelo
{"title":"Assessing training needs in health research ethics: a case study from the University of Zambia School of Medicine.","authors":"Gershom Chongwe, Bornwell Sikateyo, Linda Kampata, Joseph Ali, Kristina Hallez, Adnan A Hyder, Nancy Kass, Charles Michelo","doi":"10.1080/11287462.2020.1853001","DOIUrl":"10.1080/11287462.2020.1853001","url":null,"abstract":"<p><p>In many settings, and perhaps especially in low-middle income countries, training institutions do not adequately prepare their students for the ethical challenges that confront them in professional life. We conducted a survey to assess the training needs in research ethics among the faculty at the University of Zambia, School of Medicine (UNZASoM) using a structured questionnaire distributed to faculty members in January 2015. The study was approved by the University of Zambia Biomedical Research Ethics Committee. Seventy-five faculty members of various ranks completed the questionnaire. It was found that 31% of the faculty had not received any research ethics training. Of those who had received training, most of them had received it through short workshops of five days or less (57.4%, <i>n</i> = 31), while only 27.7% received ethics training as a component of an academic degree and 22.2% obtained it through electronic web-based courses. While most faculty (70.7%) reported being well-prepared to guide their students in developing a research methods section of a research protocol, only 25.3% felt they were well-prepared to guide on ethical considerations. This study has demonstrated gaps in research ethics training among faculty members at UNZASoM. Mandatory instruction in research ethics among faculty and students is recommended.</p>","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":"31 1","pages":"155-163"},"PeriodicalIF":0.0,"publicationDate":"2020-12-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7734000/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10077062","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}
Global BioethicsPub Date : 2020-06-16DOI: 10.1080/11287462.2020.1773054
Fahmida Hossain
{"title":"Global responsibility vs. individual dreams: addressing ethical dilemmas created by the migration of healthcare practitioners.","authors":"Fahmida Hossain","doi":"10.1080/11287462.2020.1773054","DOIUrl":"https://doi.org/10.1080/11287462.2020.1773054","url":null,"abstract":"<p><p>Background The migration of health care professionals from developing to developed countries is a trend. This migration benefits the destination countries but is quite often devastating to healthcare systems within the home countries. Skilled practitioners from developing countries forego opportunities in their homelands to migrate to developed countries. This leaves a vacuum of talent, weakening the health systems in the 'home' countries. Methods This piece analyzes the consequence of such migration through the lens of the four principles of Universal Declaration of Bioethics and Human rights (UDBHR): equality, justice and equity, solidarity and cooperation, and sharing of benefits. Results In the light of moral imagination and moral reflection, we can understand one another as global citizens. Policymakers must develop guides to restore balance and ensure equitable healthcare worldwide. Incorporating ethics education in medical schools and hospitals, implementing temporary migration visas, and helping home countries offer attractive compensation can address this concern. Conclusions Health is a universal human right; the well-being of all must be addressed without overly limiting the rights of practitioners to build the lives they imagine. On the other hand, practitioners should consider themselves global citizens and consider their ethical obligations when considering their migration.</p>","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":" ","pages":"81-89"},"PeriodicalIF":0.0,"publicationDate":"2020-06-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/11287462.2020.1773054","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38464944","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}
Global BioethicsPub Date : 2020-06-05DOI: 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":"<p><p>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 (<i>n </i>= 14), implementers (<i>n </i>= 12) and policy makers as well as bioethicists (<i>n </i>= 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.</p>","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}
Global BioethicsPub Date : 2020-06-05DOI: 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":"<p><p>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.</p>","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}
Global BioethicsPub Date : 2020-03-22eCollection Date: 2020-01-01DOI: 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":"<p><p>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 <i>fatwās</i> were found, 8 of which were single-author rulings, and 8 represented the collective view of a juridical council. The <i>fatwās</i> 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 <i>fatwās</i> 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.</p>","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}
Global BioethicsPub Date : 2020-02-23DOI: 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":"<p><p>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.</p>","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}
Global BioethicsPub Date : 2020-02-21eCollection Date: 2020-01-01DOI: 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":"<p><p>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 <i>bioetiquette</i> - 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.</p>","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}
Global BioethicsPub Date : 2019-12-20eCollection Date: 2020-01-01DOI: 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":"<p><p>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.</p>","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}
Global BioethicsPub Date : 2019-09-30eCollection Date: 2019-01-01DOI: 10.1080/11287462.2019.1673028
Rodrigo López Barreda, Joelle Robertson-Preidler, Paula Bedregal García
{"title":"Health assessment and the capability approach.","authors":"Rodrigo López Barreda, Joelle Robertson-Preidler, Paula Bedregal García","doi":"10.1080/11287462.2019.1673028","DOIUrl":"10.1080/11287462.2019.1673028","url":null,"abstract":"<p><p>Health has an important role in the achievement of a good quality of life. Many public policies intended to enhance individual and population health. Amartya Sen's Capability Approach (CA) offers a framework to assess well-being, as well as interventions seeking to increase it. There are, however, important practical challenges that must be faced before applying CA to concrete situations, such as health. One of these challenges is defining whether it is functioning or a capability that is the feature to be assessed. Moreover, some aspects of freedom that are relevant for CA are frequently neglected, such as agency. These aspects must be considered when performing a health assessment using the CA as a framework. A health assessment using the CA as a framework should include indicators based on the achieved dimension (health functioning), resources and conversion factors (health capability), and freedom to achieve (agency).</p>","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":"30 1","pages":"19-27"},"PeriodicalIF":0.0,"publicationDate":"2019-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6781455/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45151212","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}