Pub Date : 2022-02-04eCollection Date: 2022-01-01DOI: 10.1080/11287462.2021.2011001
Ruth Macklin
A truly global bioethics involves cooperation and collaboration among countries. Most of the articles published in bioethics journals address a problem that exists in one or more countries, but the articles typically do not discuss solutions that require collaboration or cooperation. COVAX is one example of proposed international cooperation related to the current COVID-19. pandemic. Yet it is evident that nations have been proceeding on their own with little, if any collaboration. Despite international research ethics guidance from the World Health Organization (WHO), an article published under WHO auspices violates an ethical principle rejecting "double standards" in the conduct of global research. The COVID pandemic provides an opportunity for countries to learn from the recent lack of international cooperation and employ a multi-national strategy in future global health crises.
{"title":"A new definition for global bioethics: COVID-19, a case study.","authors":"Ruth Macklin","doi":"10.1080/11287462.2021.2011001","DOIUrl":"https://doi.org/10.1080/11287462.2021.2011001","url":null,"abstract":"<p><p>A truly global bioethics involves cooperation and collaboration among countries. Most of the articles published in bioethics journals address a problem that exists in one or more countries, but the articles typically do not discuss solutions that require collaboration or cooperation. COVAX is one example of proposed international cooperation related to the current COVID-19. pandemic. Yet it is evident that nations have been proceeding on their own with little, if any collaboration. Despite international research ethics guidance from the World Health Organization (WHO), an article published under WHO auspices violates an ethical principle rejecting \"double standards\" in the conduct of global research. The COVID pandemic provides an opportunity for countries to learn from the recent lack of international cooperation and employ a multi-national strategy in future global health crises.</p>","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":" ","pages":"4-13"},"PeriodicalIF":0.0,"publicationDate":"2022-02-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8856031/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39938733","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}
Pub Date : 2022-01-01DOI: 10.1080/11287462.2022.2118977
Ezieddin Elmahjub
This article addresses the bioethical challenges raised by end-of-life care (EoLC) from the perspective of Islamic normativity. Rejecting positivist positions, it argues for the use of a flexible approach midway between a deontological conception of human life as having a sacred value that cannot be bargained over, as represented by the teachings of Abū Ḥāmid al-Ghazālī's, and one that introduces considerations of pain (alam) and pleasure (ladhdah) into ethical evaluations, as expounded by the jurist Fakhr al-Dīn al-Rāzī. Under this approach, described as "Islamic evaluator relativity," moral agents formulate a normative position tailored to their beliefs and the circumstances of the case, in which the right course of action is expressed as a value judgement (amr ijtihādi) and the evaluator (mujtahid) is rewarded regardless of the choices they make. Keywords: Islamic bioethics, End-of-life-care, bioethics, normative ethics.
本文从伊斯兰规范的角度论述了临终关怀(EoLC)带来的生物伦理挑战。它拒绝实证主义的立场,主张使用一种灵活的方法,介于一种义务论的概念之间,即人类生命具有不可讨价还价的神圣价值,如阿布·Ḥāmid al-Ghazālī的教义所代表的,另一种是将痛苦(alam)和快乐(ladhdah)引入道德评估,如法学家Fakhr al- d al-Rāzī所阐述的那样。在这种被称为“伊斯兰评估者相对性”的方法下,道德行为者根据他们的信仰和情况制定了一种规范的立场,在这种立场下,正确的行动过程被表达为一种价值判断(amr ijtihādi),评估者(mujtahid)无论做出什么选择都得到奖励。关键词:伊斯兰生命伦理学,临终关怀,生命伦理学,规范伦理学
{"title":"Normative account of Islamic bioethics in end-of-life care.","authors":"Ezieddin Elmahjub","doi":"10.1080/11287462.2022.2118977","DOIUrl":"https://doi.org/10.1080/11287462.2022.2118977","url":null,"abstract":"<p><p>This article addresses the bioethical challenges raised by end-of-life care (EoLC) from the perspective of Islamic normativity. Rejecting positivist positions, it argues for the use of a flexible approach midway between a deontological conception of human life as having a sacred value that cannot be bargained over, as represented by the teachings of Abū Ḥāmid al-Ghazālī's, and one that introduces considerations of pain (alam) and pleasure (ladhdah) into ethical evaluations, as expounded by the jurist Fakhr al-Dīn al-Rāzī. Under this approach, described as \"Islamic evaluator relativity,\" moral agents formulate a normative position tailored to their beliefs and the circumstances of the case, in which the right course of action is expressed as a value judgement (amr ijtihādi) and the evaluator (mujtahid) is rewarded regardless of the choices they make. Keywords: Islamic bioethics, End-of-life-care, bioethics, normative ethics.</p>","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":"33 1","pages":"133-154"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9733680/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10698999","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}
Pub Date : 2022-01-01DOI: 10.1080/11287462.2022.2124019
Cornelius Ewuoso, Ambroise Wonkam, Jantina de Vries
This article draws on key normative principles grounded in important values - solidarity, partiality and friendliness - in African philosophy to think critically and deeply about the ethical challenges around returning individual genetic research findings in African genomics research. Precisely, we propose that the normative implication of solidarity, partiality and friendliness is that returning findings should be considered as a gesture of goodwill to participants to the extent that it constitutes acting for their well-being. Concretely, the value of friendliness may imply that one ought to return actionable results to participants even when their preferences regarding feedback are unknown. Notwithstanding, returning individual genetic results will have a cost implication. The cost of feeding back is relevant in the context of African genomics research projects, which are often funded by international sponsors and should be researched further.
{"title":"Epistemic justice, African values and feedback of findings in African genomics research.","authors":"Cornelius Ewuoso, Ambroise Wonkam, Jantina de Vries","doi":"10.1080/11287462.2022.2124019","DOIUrl":"https://doi.org/10.1080/11287462.2022.2124019","url":null,"abstract":"<p><p>This article draws on key normative principles grounded in important values - solidarity, partiality and friendliness - in African philosophy to think critically and deeply about the ethical challenges around returning individual genetic research findings in African genomics research. Precisely, we propose that the normative implication of solidarity, partiality and friendliness is that returning findings should be considered as a gesture of goodwill to participants to the extent that it constitutes acting for their well-being. Concretely, the value of friendliness may imply that one ought to return actionable results to participants even when their preferences regarding feedback are unknown. Notwithstanding, returning individual genetic results will have a cost implication. The cost of feeding back is relevant in the context of African genomics research projects, which are often funded by international sponsors and should be researched further.</p>","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":"33 1","pages":"122-132"},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9518233/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9594897","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}
Pub Date : 2021-08-19eCollection Date: 2021-01-01DOI: 10.1080/11287462.2021.1966975
Olivia Figueira, Helena Figueira, Renato Soleiman Franco, Paulo Sergio Marcellini, Anor Sganzerla, Carla Corradi Perini
Introduction: Quality of Life (QOL) is essential for healthy aging and through the WHOQOL-Old, it is possible to analyze factors that increase vulnerability and reduce QOL. Aligned with healthy aging is Potter's global bioethics proposing expanded ethics and social justice.
Objective: To analyze the QOL of Brazilian elderly from the perspective of Potteŕs global bioethics.
Method: Analytical observational research with a quantitative approach composed of 280 Brazilian, aged 60 or over, of both gender, volunteers, who answered the WHOQOL-Old online.
Result: Global score of 77.9%, with the mean ± standard deviation: Functioning of the senses 86% (17.22 ± 2.80); Autonomy 78.5% (15.7 ± 2.60); Past, present, and future activities 77.3% (15.46 ± 2.34); Social participation 74.9% (14.99 ± 2.62); Death and dying 71.6% (14.33 ± 3.88) and Intimacy 79.1% (15.82 ± 2.82).
Conclusion: Elderly perceived their QOL positively. In the quest to promote healthy aging, it is necessary to broaden the vision for social justice proposed by Potteŕs global bioethics.
{"title":"Quality of life in Brazilian elderly: an analysis of healthy aging from the perspective of Potter's global bioethics.","authors":"Olivia Figueira, Helena Figueira, Renato Soleiman Franco, Paulo Sergio Marcellini, Anor Sganzerla, Carla Corradi Perini","doi":"10.1080/11287462.2021.1966975","DOIUrl":"10.1080/11287462.2021.1966975","url":null,"abstract":"<p><strong>Introduction: </strong>Quality of Life (QOL) is essential for healthy aging and through the WHOQOL-Old, it is possible to analyze factors that increase vulnerability and reduce QOL. Aligned with healthy aging is Potter's global bioethics proposing expanded ethics and social justice.</p><p><strong>Objective: </strong>To analyze the QOL of Brazilian elderly from the perspective of Potteŕs global bioethics.</p><p><strong>Method: </strong>Analytical observational research with a quantitative approach composed of 280 Brazilian, aged 60 or over, of both gender, volunteers, who answered the WHOQOL-Old online.</p><p><strong>Result: </strong>Global score of 77.9%, with the mean ± standard deviation: Functioning of the senses 86% (17.22 ± 2.80); Autonomy 78.5% (15.7 ± 2.60); Past, present, and future activities 77.3% (15.46 ± 2.34); Social participation 74.9% (14.99 ± 2.62); Death and dying 71.6% (14.33 ± 3.88) and Intimacy 79.1% (15.82 ± 2.82).</p><p><strong>Conclusion: </strong>Elderly perceived their QOL positively. In the quest to promote healthy aging, it is necessary to broaden the vision for social justice proposed by Potteŕs global bioethics.</p>","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":"32 1","pages":"116-129"},"PeriodicalIF":0.0,"publicationDate":"2021-08-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8381893/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39344556","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}
Pub Date : 2021-08-13eCollection Date: 2021-01-01DOI: 10.1080/11287462.2021.1966974
Thomas Druetz, Alice Bila, Frank Bicaba, Cheick Tiendrebeogo, Abel Bicaba
In Burkina Faso, in July 2016, user fees were removed at all public healthcare facilities, but only for children under 60 months of age and for "mothers", i.e. for reproductive care. This study was conducted in five rural communities in Boulsa District (Burkina Faso) (1) to understand the perceptions and practices of stakeholders regarding compliance with eligibility criteria for free care and (2) to explore the ethical tensions that may have resulted from this policy. Semi-directed individual interviews (n = 20) were conducted with healthcare personnel and mothers of young children. Interviews were recorded and transcribed, and a thematic content analysis was conducted. The study reveals the presence of practices to circumvent strict compliance with the eligibility criteria for free access. These include hiding the exact age of children over 60 months and using eligible persons for the benefit of others. These practices result from ethical and economic tensions experienced by the beneficiaries. They also raise dilemmas among healthcare providers, who have to enforce compliance with the eligibility criteria while realizing the households' deprivation. Informal adjustments are introduced at the community level to reconcile the healthcare providers' dissonance. Local reinvention mechanisms help in overcoming ethical tensions and in implementing the policy.
{"title":"Free healthcare for some, fee-paying for the rest: adaptive practices and ethical issues in rural communities in the district of Boulsa, Burkina Faso.","authors":"Thomas Druetz, Alice Bila, Frank Bicaba, Cheick Tiendrebeogo, Abel Bicaba","doi":"10.1080/11287462.2021.1966974","DOIUrl":"10.1080/11287462.2021.1966974","url":null,"abstract":"<p><p>In Burkina Faso, in July 2016, user fees were removed at all public healthcare facilities, but only for children under 60 months of age and for \"mothers\", i.e. for reproductive care. This study was conducted in five rural communities in Boulsa District (Burkina Faso) (1) to understand the perceptions and practices of stakeholders regarding compliance with eligibility criteria for free care and (2) to explore the ethical tensions that may have resulted from this policy. Semi-directed individual interviews (<i>n </i>= 20) were conducted with healthcare personnel and mothers of young children. Interviews were recorded and transcribed, and a thematic content analysis was conducted. The study reveals the presence of practices to circumvent strict compliance with the eligibility criteria for free access. These include hiding the exact age of children over 60 months and using eligible persons for the benefit of others. These practices result from ethical and economic tensions experienced by the beneficiaries. They also raise dilemmas among healthcare providers, who have to enforce compliance with the eligibility criteria while realizing the households' deprivation. Informal adjustments are introduced at the community level to reconcile the healthcare providers' dissonance. Local reinvention mechanisms help in overcoming ethical tensions and in implementing the policy.</p>","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":"32 1","pages":"100-115"},"PeriodicalIF":0.0,"publicationDate":"2021-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8366671/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39323423","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}
Pub Date : 2021-06-11DOI: 10.1080/11287462.2021.1939548
Chitu Womehoma Princewill, Ayodele Samuel Jegede, Adefolarin Malomo, Francis Chukwuemeka Ezeonu, Abdulwahab Ademola Lawal, Omokhoa Adeleye, Christie Oby Onyia
Nigeria is experiencing, together with the rest of the world, consequences of relentlessly accelerating technological developments, in the contexts of relative lagging of developments in the Humanities, new discoveries in sciences and technological innovations, advances in medicine, changes in government policies and norms, rapid changes in the society, unhealthy practices in the area of food and agriculture, degradation of the environment as well as climate change. Furthermore, Nigeria as a Member State of UNESCO Bioethics is expected to have a National Bioethics Committee to enhance her participation in global concerns, as well as increase her opportunities to tap into global Bioethics resources. For this Committee to be established, the National Bioethics Framework and Policy Documents must be put in place. This paper discusses the rigorous process of developing the National Bioethics Framework and the National Bioethics Policy Documents as well as the need for a National Bioethics Committee in Nigeria.
{"title":"Content development footprints for the establishment of a National Bioethics Committee: lessons from Nigeria.","authors":"Chitu Womehoma Princewill, Ayodele Samuel Jegede, Adefolarin Malomo, Francis Chukwuemeka Ezeonu, Abdulwahab Ademola Lawal, Omokhoa Adeleye, Christie Oby Onyia","doi":"10.1080/11287462.2021.1939548","DOIUrl":"https://doi.org/10.1080/11287462.2021.1939548","url":null,"abstract":"<p><p>Nigeria is experiencing, together with the rest of the world, consequences of relentlessly accelerating technological developments, in the contexts of relative lagging of developments in the Humanities, new discoveries in sciences and technological innovations, advances in medicine, changes in government policies and norms, rapid changes in the society, unhealthy practices in the area of food and agriculture, degradation of the environment as well as climate change. Furthermore, Nigeria as a Member State of UNESCO Bioethics is expected to have a National Bioethics Committee to enhance her participation in global concerns, as well as increase her opportunities to tap into global Bioethics resources. For this Committee to be established, the National Bioethics Framework and Policy Documents must be put in place. This paper discusses the rigorous process of developing the National Bioethics Framework and the National Bioethics Policy Documents as well as the need for a National Bioethics Committee in Nigeria.</p>","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":"32 1","pages":"85-99"},"PeriodicalIF":0.0,"publicationDate":"2021-06-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/11287462.2021.1939548","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39112215","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}
Pub Date : 2021-04-05DOI: 10.1080/11287462.2021.1909820
Cornelius Ewuoso, Susan Hall, Kris Dierickx
Aim: This study is a systematic review that aims to assess how healthcare professionals manage ethical challenges regarding information within the clinical context.
Method and materials: We carried out searches in PubMed, Google Scholar and Embase, using two search strings; searches generated 665 hits. After screening, 47 articles relevant to the study aim were selected for review. Seven articles were identified through snowballing, and 18 others were included following a system update in PubMed, bringing the total number of articles reviewed to 72. We used a Q-sort technique for the analysis of identified articles.
Findings: This study reveals that healthcare professionals around the world generally employ (to varying degrees) four broad strategies to manage different types of challenges regarding information, which can be categorized as challenges related to confidentiality, communication, professional duty, and decision-making. The strategies employed for managing these challenges include resolution, consultation, stalling, and disclosure/concealment.
Conclusion: There are a variety of strategies which health professionals can adopt to address challenges regarding information management within the clinical context. This insight complements current efforts aimed at enhancing health professional-patient communication. Very few studies have researched the results of employing these various strategies. Future empirical studies are required to address this.
Abbreviations: CIOMS: Council of International Organization of Medical Sciences; WHO: World Health Organization; AMA: American Medical Association; WMA: World Medical Association; PRISMA: Preferred Reporting Items for Systematic Reviews and Meta-Analysis; ISCO: International Standard Classification of Occupations; ILO: International Labour Office; SPSS: The Statistical Package for the Social Sciences.
{"title":"How do healthcare professionals respond to ethical challenges regarding information management? A review of empirical studies.","authors":"Cornelius Ewuoso, Susan Hall, Kris Dierickx","doi":"10.1080/11287462.2021.1909820","DOIUrl":"https://doi.org/10.1080/11287462.2021.1909820","url":null,"abstract":"<p><strong>Aim: </strong>This study is a systematic review that aims to assess how healthcare professionals manage ethical challenges regarding information within the clinical context.</p><p><strong>Method and materials: </strong>We carried out searches in PubMed, <i>Google Scholar</i> and Embase, using two search strings; searches generated 665 hits. After screening, 47 articles relevant to the study aim were selected for review. Seven articles were identified through snowballing, and 18 others were included following a system update in PubMed, bringing the total number of articles reviewed to 72. We used a Q-sort technique for the analysis of identified articles.</p><p><strong>Findings: </strong>This study reveals that healthcare professionals around the world generally employ (to varying degrees) four broad strategies to manage different types of challenges regarding information, which can be categorized as challenges related to confidentiality, communication, professional duty, and decision-making. The strategies employed for managing these challenges include resolution, consultation, stalling, and disclosure/concealment.</p><p><strong>Conclusion: </strong>There are a variety of strategies which health professionals can adopt to address challenges regarding information management within the clinical context. This insight complements current efforts aimed at enhancing health professional-patient communication. Very few studies have researched the results of employing these various strategies. Future empirical studies are required to address this.</p><p><strong>Abbreviations: </strong>CIOMS: Council of International Organization of Medical Sciences; WHO: World Health Organization; AMA: American Medical Association; WMA: World Medical Association; PRISMA: Preferred Reporting Items for Systematic Reviews and Meta-Analysis; ISCO: International Standard Classification of Occupations; ILO: International Labour Office; SPSS: The Statistical Package for the Social Sciences.</p>","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":"32 1","pages":"67-84"},"PeriodicalIF":0.0,"publicationDate":"2021-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/11287462.2021.1909820","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38907033","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}
Pub Date : 2021-03-25DOI: 10.1080/11287462.2021.1896454
Valedie Oray, Sara H Katsanis
As nations strengthen borders and restrict refugee admissions, national security officials are screening for fraudulent nationality claims. One tool to investigate nationality claims is DNA testing, either for claimed relationships or for ancestral origins. At the same time, the plight of global statelessness leaves millions without documentation of their nationality, and DNA testing might be the only recourse to provide evidence of heritage or relationships. DNA testing has been used sparsely to date to determine ancestral origin as a proxy for nationality but could increase as border controls tighten. Given the historic lessons in eugenics and the potential for misuse of personal genetic information, it is essential to consider the ethical parameters in order to guide the implementation of genetic data for such purposes. Here, we break down examples of the use of DNA testing for nationality, and the risks and benefits of genetic testing for this purpose. Important ethical considerations discussed include (1) empowerment of stateless individuals with evidence for citizenship proceedings; (2) imprecise correlation between genetic heritage and nationality; (3) effective protection of state interests; and (4) practicalities of DNA testing.
{"title":"Ethical considerations for DNA testing as a proxy for nationality.","authors":"Valedie Oray, Sara H Katsanis","doi":"10.1080/11287462.2021.1896454","DOIUrl":"https://doi.org/10.1080/11287462.2021.1896454","url":null,"abstract":"<p><p>As nations strengthen borders and restrict refugee admissions, national security officials are screening for fraudulent nationality claims. One tool to investigate nationality claims is DNA testing, either for claimed relationships or for ancestral origins. At the same time, the plight of global statelessness leaves millions without documentation of their nationality, and DNA testing might be the only recourse to provide evidence of heritage or relationships. DNA testing has been used sparsely to date to determine ancestral origin as a proxy for nationality but could increase as border controls tighten. Given the historic lessons in eugenics and the potential for misuse of personal genetic information, it is essential to consider the ethical parameters in order to guide the implementation of genetic data for such purposes. Here, we break down examples of the use of DNA testing for nationality, and the risks and benefits of genetic testing for this purpose. Important ethical considerations discussed include (1) empowerment of stateless individuals with evidence for citizenship proceedings; (2) imprecise correlation between genetic heritage and nationality; (3) effective protection of state interests; and (4) practicalities of DNA testing.</p>","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":"32 1","pages":"51-66"},"PeriodicalIF":0.0,"publicationDate":"2021-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/11287462.2021.1896454","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25571597","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}
Pub Date : 2021-03-15DOI: 10.1080/11287462.2021.1898090
Anita Ho, Iulia Dascalu
While the effects of COVID-19 are being felt globally, the pandemic disproportionately affects lower- and middle-income countries (LMICs) by exacerbating existing global health disparities. In this article, we illustrate how intersecting upstream social determinants of global health form a disparity pathway that compromises LMICs' ability to respond to the pandemic. We consider pre-existing disease burden and baseline susceptibility, limited disease prevention resources, and unequal access to basic and specialized health care, essential drugs, and clinical trials. Recognizing that ongoing and underlying disparity issues will require long-term correction efforts, this pathway approach is nonetheless helpful to inform ethical responses to this global pandemic. It can facilitate international cooperation during the pandemic to reduce the disparate burdens among different regions without imposing significant burden on any particular contributor. The pathway approach allows international stakeholders in various social positions to respond to different components of the pathway based on their respective strengths and resources to help break the cycle of global health inequity. Guided by the ethical principles of relational and pragmatic solidarity, we argue for a coordinated global division of labor such that different stakeholders can collaborate to foster equitable healthcare access during this pandemic.
{"title":"Relational solidarity and COVID-19: an ethical approach to disrupt the global health disparity pathway.","authors":"Anita Ho, Iulia Dascalu","doi":"10.1080/11287462.2021.1898090","DOIUrl":"10.1080/11287462.2021.1898090","url":null,"abstract":"<p><p>While the effects of COVID-19 are being felt globally, the pandemic disproportionately affects lower- and middle-income countries (LMICs) by exacerbating existing global health disparities. In this article, we illustrate how intersecting upstream social determinants of global health form a disparity pathway that compromises LMICs' ability to respond to the pandemic. We consider pre-existing disease burden and baseline susceptibility, limited disease prevention resources, and unequal access to basic and specialized health care, essential drugs, and clinical trials. Recognizing that ongoing and underlying disparity issues will require long-term correction efforts, this pathway approach is nonetheless helpful to inform ethical responses to this global pandemic. It can facilitate international cooperation during the pandemic to reduce the disparate burdens among different regions without imposing significant burden on any particular contributor. The pathway approach allows international stakeholders in various social positions to respond to different components of the pathway based on their respective strengths and resources to help break the cycle of global health inequity. Guided by the ethical principles of relational and pragmatic solidarity, we argue for a coordinated global division of labor such that different stakeholders can collaborate to foster equitable healthcare access during this pandemic.</p>","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":"32 1","pages":"34-50"},"PeriodicalIF":0.0,"publicationDate":"2021-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7971301/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25540617","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}
Pub Date : 2021-03-09DOI: 10.1080/11287462.2021.1896453
Erisa Sabakaki Mwaka, Deborah Ekusai Sebatta, Joseph Ochieng, Ian Guyton Munabi, Godfrey Bagenda, Deborah Ainembabazi, David Kaawa-Mafigiri
Genetic results are usually not returned to research participants in Uganda despite their increased demand. We report on researchers' perceptions and experiences of return of individual genetic research results. The study involved 15 in-depth interviews of investigators involved in genetics and/or genomic research. A thematic approach was used to interpret the results. The four themes that emerged from the data were the need for return of individual results including incidental findings, community engagement and the consenting process, implications and challenges to return of individual results. While researchers are willing to return clinically significant genetic results to research participants, they remain unsure of how this should be implemented. Suggestions to aid implementation of return of results included reconsenting of participants before receiving individual genetic results and increasing access to genetic counseling services. Community engagement to determine community perceptions and individual preferences for the return of results, and also prepare participants to safely receive results emerged as another way to support return of results. Researchers have a positive attitude toward the return of clinically significant genetic results to research participants. There is need to develop national guidance on genetic research and also build capacity for clinical genetics and genetic counseling.
{"title":"Researchers' perspectives on return of individual genetics results to research participants: a qualitative study.","authors":"Erisa Sabakaki Mwaka, Deborah Ekusai Sebatta, Joseph Ochieng, Ian Guyton Munabi, Godfrey Bagenda, Deborah Ainembabazi, David Kaawa-Mafigiri","doi":"10.1080/11287462.2021.1896453","DOIUrl":"10.1080/11287462.2021.1896453","url":null,"abstract":"<p><p>Genetic results are usually not returned to research participants in Uganda despite their increased demand. We report on researchers' perceptions and experiences of return of individual genetic research results. The study involved 15 in-depth interviews of investigators involved in genetics and/or genomic research. A thematic approach was used to interpret the results. The four themes that emerged from the data were the need for return of individual results including incidental findings, community engagement and the consenting process, implications and challenges to return of individual results. While researchers are willing to return clinically significant genetic results to research participants, they remain unsure of how this should be implemented. Suggestions to aid implementation of return of results included reconsenting of participants before receiving individual genetic results and increasing access to genetic counseling services. Community engagement to determine community perceptions and individual preferences for the return of results, and also prepare participants to safely receive results emerged as another way to support return of results. Researchers have a positive attitude toward the return of clinically significant genetic results to research participants. There is need to develop national guidance on genetic research and also build capacity for clinical genetics and genetic counseling.</p>","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":"32 1","pages":"15-33"},"PeriodicalIF":0.0,"publicationDate":"2021-03-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7952062/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25515411","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}