Pub Date : 2024-05-16DOI: 10.1186/s12910-024-01059-3
Matthias Zimmer
In case of an emergency, health insurance in Germany provides easy access to medical care in emergency departments. Over 100,000 people do not have health insurance for various reasons. They are repeatedly refused treatment in emergency rooms as their right to care outside of regular insurance is often unknown or ignored.
{"title":"Refusal of patients: care for people without health insurance in German emergency departments.","authors":"Matthias Zimmer","doi":"10.1186/s12910-024-01059-3","DOIUrl":"10.1186/s12910-024-01059-3","url":null,"abstract":"<p><p>In case of an emergency, health insurance in Germany provides easy access to medical care in emergency departments. Over 100,000 people do not have health insurance for various reasons. They are repeatedly refused treatment in emergency rooms as their right to care outside of regular insurance is often unknown or ignored.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"56"},"PeriodicalIF":4.3,"publicationDate":"2024-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11097448/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140961056","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-16DOI: 10.1186/s12910-024-01055-7
Agnes Ssali, Rita Namugumya, Phiona Nalubega, Mary Kyohere, Janet Seeley, Kirsty Le Doare
Background: The involvement of pregnant women in vaccine clinical trials presents unique challenges for the informed consent process. We explored the expectations and experiences of the pregnant women, spouses/partners, health workers and stakeholders of the consent process during a Group B Streptococcus maternal vaccine trial.
Methods: We interviewed 56 participants including pregnant women taking part in the trial, women not in the trial, health workers handling the trial procedures, spouses, and community stakeholders. We conducted 13 in-depth interviews and focus group discussions with 23 women in the trial, in-depth interviews with 5 spouses, and 5 women not in the trial, key informant interviews with 5 health workers and 5 other stakeholders were undertaken.
Results: Decision-making by a pregnant woman to join a trial was done in consultation with spouse, parents, siblings, or trusted health workers. Written study information was appreciated by all but they suggested the use of audio and visual presentation to enhance understanding. Women stressed the need to ensure that their male partners received study information before their pregnant partners joined a clinical trial. Confidentiality in research was emphasised differently by individual participants; while some emphasised it for self, others were keen to protect their family members from being exposed, for allowing them to be involved in research. However, others wanted their community participation to be acknowledged.
Conclusion: We found that pregnant women make decisions to join a clinical trial after consulting with close family. Our findings suggest the need for an information strategy which informs not only the pregnant woman, but also her family about the research she is invited to engage in.
{"title":"Exploring the consent process among pregnant and breastfeeding women taking part in a maternal vaccine clinical trial in Kampala, Uganda: a qualitative study.","authors":"Agnes Ssali, Rita Namugumya, Phiona Nalubega, Mary Kyohere, Janet Seeley, Kirsty Le Doare","doi":"10.1186/s12910-024-01055-7","DOIUrl":"10.1186/s12910-024-01055-7","url":null,"abstract":"<p><strong>Background: </strong>The involvement of pregnant women in vaccine clinical trials presents unique challenges for the informed consent process. We explored the expectations and experiences of the pregnant women, spouses/partners, health workers and stakeholders of the consent process during a Group B Streptococcus maternal vaccine trial.</p><p><strong>Methods: </strong>We interviewed 56 participants including pregnant women taking part in the trial, women not in the trial, health workers handling the trial procedures, spouses, and community stakeholders. We conducted 13 in-depth interviews and focus group discussions with 23 women in the trial, in-depth interviews with 5 spouses, and 5 women not in the trial, key informant interviews with 5 health workers and 5 other stakeholders were undertaken.</p><p><strong>Results: </strong>Decision-making by a pregnant woman to join a trial was done in consultation with spouse, parents, siblings, or trusted health workers. Written study information was appreciated by all but they suggested the use of audio and visual presentation to enhance understanding. Women stressed the need to ensure that their male partners received study information before their pregnant partners joined a clinical trial. Confidentiality in research was emphasised differently by individual participants; while some emphasised it for self, others were keen to protect their family members from being exposed, for allowing them to be involved in research. However, others wanted their community participation to be acknowledged.</p><p><strong>Conclusion: </strong>We found that pregnant women make decisions to join a clinical trial after consulting with close family. Our findings suggest the need for an information strategy which informs not only the pregnant woman, but also her family about the research she is invited to engage in.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"57"},"PeriodicalIF":4.3,"publicationDate":"2024-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11097482/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140961049","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-14DOI: 10.1186/s12910-024-01047-7
Menno T Maris, Ayca Koçar, Dick L Willems, Jeannette Pols, Hanno L Tan, Georg L Lindinger, Marieke A R Bak
{"title":"Correction: Ethical use of artificial intelligence to prevent sudden cardiac death: an interview study of patient perspectives.","authors":"Menno T Maris, Ayca Koçar, Dick L Willems, Jeannette Pols, Hanno L Tan, Georg L Lindinger, Marieke A R Bak","doi":"10.1186/s12910-024-01047-7","DOIUrl":"10.1186/s12910-024-01047-7","url":null,"abstract":"","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"53"},"PeriodicalIF":3.0,"publicationDate":"2024-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11092072/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140924013","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-14DOI: 10.1186/s12910-024-01058-4
Godwin Pancras, Mangi Ezekiel, Erasto Mbugi, Jon F Merz
Background: A morally sound framework for benefit-sharing is crucial to minimize research exploitation for research conducted in developing countries. However, in practice, it remains uncertain which stakeholders should be involved in the decision-making process regarding benefit-sharing and what the implications might be. Therefore the study aimed to empirically propose a framework for benefit-sharing negotiations in research by taking HIV vaccine trials as a case.
Methods: The study was conducted in Tanzania using a case study design and qualitative approaches. Data were collected using in-depth interviews (IDI) and focus group discussions (FGD). A total of 37 study participants were selected purposively comprising institutional review board (IRB) members, researchers, community advisory board (CAB) members, a policymaker, and HIV/AIDS advocates. Deductive and inductive thematic analysis approaches were deployed to analyze collected data with the aid of MAXQDA version 20.4.0 software.
Results: The findings indicate a triangular relationship between the research community, researched community and intermediaries. However, the relationship ought to take into consideration the timing of negotiations, the level of understanding between parties and the phase of the clinical trial. The proposed framework operationalize partnership interactions in community-based participatory research.
Conclusion: In the context of this study, the suggested framework incorporates the research community, the community being researched, and intermediary parties. The framework would guarantee well-informed and inclusive decision-making regarding benefit-sharing in HIV vaccine trials and other health-related research conducted in resource-limited settings.
{"title":"Who to engage in HIV vaccine trial benefit-sharing negotiations? An empirical proposition of a framework.","authors":"Godwin Pancras, Mangi Ezekiel, Erasto Mbugi, Jon F Merz","doi":"10.1186/s12910-024-01058-4","DOIUrl":"10.1186/s12910-024-01058-4","url":null,"abstract":"<p><strong>Background: </strong>A morally sound framework for benefit-sharing is crucial to minimize research exploitation for research conducted in developing countries. However, in practice, it remains uncertain which stakeholders should be involved in the decision-making process regarding benefit-sharing and what the implications might be. Therefore the study aimed to empirically propose a framework for benefit-sharing negotiations in research by taking HIV vaccine trials as a case.</p><p><strong>Methods: </strong>The study was conducted in Tanzania using a case study design and qualitative approaches. Data were collected using in-depth interviews (IDI) and focus group discussions (FGD). A total of 37 study participants were selected purposively comprising institutional review board (IRB) members, researchers, community advisory board (CAB) members, a policymaker, and HIV/AIDS advocates. Deductive and inductive thematic analysis approaches were deployed to analyze collected data with the aid of MAXQDA version 20.4.0 software.</p><p><strong>Results: </strong>The findings indicate a triangular relationship between the research community, researched community and intermediaries. However, the relationship ought to take into consideration the timing of negotiations, the level of understanding between parties and the phase of the clinical trial. The proposed framework operationalize partnership interactions in community-based participatory research.</p><p><strong>Conclusion: </strong>In the context of this study, the suggested framework incorporates the research community, the community being researched, and intermediary parties. The framework would guarantee well-informed and inclusive decision-making regarding benefit-sharing in HIV vaccine trials and other health-related research conducted in resource-limited settings.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"54"},"PeriodicalIF":3.0,"publicationDate":"2024-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11092097/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140924033","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-11DOI: 10.1186/s12910-024-01052-w
Faten Mane Aldhafeeri
Background: The integration of artificial intelligence (AI) in radiography presents transformative opportunities for diagnostic imaging and introduces complex ethical considerations. The aim of this cross-sectional study was to explore radiographers' perspectives on the ethical implications of AI in their field and identify key concerns and potential strategies for addressing them.
Methods: A structured questionnaire was distributed to a diverse group of radiographers in Saudi Arabia. The questionnaire included items on ethical concerns related to AI, the perceived impact on clinical practice, and suggestions for ethical AI integration in radiography. The data were analyzed using quantitative and qualitative methods to capture a broad range of perspectives.
Results: Three hundred eighty-eight radiographers responded and had varying levels of experience and specializations. Most (44.8%) participants were unfamiliar with the integration of AI into radiography. Approximately 32.9% of radiographers expressed uncertainty regarding the importance of transparency and explanatory capabilities in the AI systems used in radiology. Many (36.9%) participants indicated that they believed that AI systems used in radiology should be transparent and provide justifications for their decision-making procedures. A significant preponderance (44%) of respondents agreed that implementing AI in radiology may increase ethical dilemmas. However, 27.8%expressed uncertainty in recognizing and understanding the potential ethical issues that could arise from integrating AI in radiology. Of the respondents, 41.5% stated that the use of AI in radiology required establishing specific ethical guidelines. However, a significant percentage (28.9%) expressed the opposite opinion, arguing that utilizing AI in radiology does not require adherence to ethical standards. In contrast to the 46.6% of respondents voicing concerns about patient privacy over AI implementation, 41.5% of respondents did not have any such apprehensions.
Conclusions: This study revealed a complex ethical landscape in the integration of AI in radiography, characterized by enthusiasm and apprehension among professionals. It underscores the necessity for ethical frameworks, education, and policy development to guide the implementation of AI in radiography. These findings contribute to the ongoing discourse on AI in medical imaging and provide insights that can inform policymakers, educators, and practitioners in navigating the ethical challenges of AI adoption in healthcare.
{"title":"Navigating the ethical landscape of artificial intelligence in radiography: a cross-sectional study of radiographers' perspectives.","authors":"Faten Mane Aldhafeeri","doi":"10.1186/s12910-024-01052-w","DOIUrl":"10.1186/s12910-024-01052-w","url":null,"abstract":"<p><strong>Background: </strong>The integration of artificial intelligence (AI) in radiography presents transformative opportunities for diagnostic imaging and introduces complex ethical considerations. The aim of this cross-sectional study was to explore radiographers' perspectives on the ethical implications of AI in their field and identify key concerns and potential strategies for addressing them.</p><p><strong>Methods: </strong>A structured questionnaire was distributed to a diverse group of radiographers in Saudi Arabia. The questionnaire included items on ethical concerns related to AI, the perceived impact on clinical practice, and suggestions for ethical AI integration in radiography. The data were analyzed using quantitative and qualitative methods to capture a broad range of perspectives.</p><p><strong>Results: </strong>Three hundred eighty-eight radiographers responded and had varying levels of experience and specializations. Most (44.8%) participants were unfamiliar with the integration of AI into radiography. Approximately 32.9% of radiographers expressed uncertainty regarding the importance of transparency and explanatory capabilities in the AI systems used in radiology. Many (36.9%) participants indicated that they believed that AI systems used in radiology should be transparent and provide justifications for their decision-making procedures. A significant preponderance (44%) of respondents agreed that implementing AI in radiology may increase ethical dilemmas. However, 27.8%expressed uncertainty in recognizing and understanding the potential ethical issues that could arise from integrating AI in radiology. Of the respondents, 41.5% stated that the use of AI in radiology required establishing specific ethical guidelines. However, a significant percentage (28.9%) expressed the opposite opinion, arguing that utilizing AI in radiology does not require adherence to ethical standards. In contrast to the 46.6% of respondents voicing concerns about patient privacy over AI implementation, 41.5% of respondents did not have any such apprehensions.</p><p><strong>Conclusions: </strong>This study revealed a complex ethical landscape in the integration of AI in radiography, characterized by enthusiasm and apprehension among professionals. It underscores the necessity for ethical frameworks, education, and policy development to guide the implementation of AI in radiography. These findings contribute to the ongoing discourse on AI in medical imaging and provide insights that can inform policymakers, educators, and practitioners in navigating the ethical challenges of AI adoption in healthcare.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"25 1","pages":"52"},"PeriodicalIF":3.0,"publicationDate":"2024-05-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11088142/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140909503","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-05DOI: 10.1186/s12910-024-01050-y
Vasiliki Rahimzadeh, Jinyoung Baek, Jonathan Lawson, Edward S. Dove
Data access committees (DAC) gatekeep access to secured genomic and related health datasets yet are challenged to keep pace with the rising volume and complexity of data generation. Automated decision support (ADS) systems have been shown to support consistency, compliance, and coordination of data access review decisions. However, we lack understanding of how DAC members perceive the value add of ADS, if any, on the quality and effectiveness of their reviews. In this qualitative study, we report findings from 13 semi-structured interviews with DAC members from around the world to identify relevant barriers and facilitators to implementing ADS for genomic data access management. Participants generally supported pilot studies that test ADS performance, for example in cataloging data types, verifying user credentials and tagging datasets for use terms. Concerns related to over-automation, lack of human oversight, low prioritization, and misalignment with institutional missions tempered enthusiasm for ADS among the DAC members we engaged. Tensions for change in institutional settings within which DACs operated was a powerful motivator for why DAC members considered the implementation of ADS into their access workflows, as well as perceptions of the relative advantage of ADS over the status quo. Future research is needed to build the evidence base around the comparative effectiveness and decisional outcomes of institutions that do/not use ADS into their workflows.
{"title":"A qualitative interview study to determine barriers and facilitators of implementing automated decision support tools for genomic data access","authors":"Vasiliki Rahimzadeh, Jinyoung Baek, Jonathan Lawson, Edward S. Dove","doi":"10.1186/s12910-024-01050-y","DOIUrl":"https://doi.org/10.1186/s12910-024-01050-y","url":null,"abstract":"Data access committees (DAC) gatekeep access to secured genomic and related health datasets yet are challenged to keep pace with the rising volume and complexity of data generation. Automated decision support (ADS) systems have been shown to support consistency, compliance, and coordination of data access review decisions. However, we lack understanding of how DAC members perceive the value add of ADS, if any, on the quality and effectiveness of their reviews. In this qualitative study, we report findings from 13 semi-structured interviews with DAC members from around the world to identify relevant barriers and facilitators to implementing ADS for genomic data access management. Participants generally supported pilot studies that test ADS performance, for example in cataloging data types, verifying user credentials and tagging datasets for use terms. Concerns related to over-automation, lack of human oversight, low prioritization, and misalignment with institutional missions tempered enthusiasm for ADS among the DAC members we engaged. Tensions for change in institutional settings within which DACs operated was a powerful motivator for why DAC members considered the implementation of ADS into their access workflows, as well as perceptions of the relative advantage of ADS over the status quo. Future research is needed to build the evidence base around the comparative effectiveness and decisional outcomes of institutions that do/not use ADS into their workflows.","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"49 1","pages":""},"PeriodicalIF":2.7,"publicationDate":"2024-05-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140841479","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-03DOI: 10.1186/s12910-024-01039-7
Wieke Ligtenberg, Margreet Stolper, Bert Molewijk
Confidentiality is one of the central preconditions for clinical ethics support (CES). CES cases which generate moral questions for CES staff concerning (breaching) confidentiality of what has been discussed during CES can cause moral challenges. Currently, there seems to be no clear policy or guidance regarding how CES staff can or should deal with these moral challenges related to (not) breaching confidentiality within CES. Moral case deliberation is a specific kind of CES. Based on experiences and research into MCD facilitators’ needs for ethics support in this regard, we jointly developed an ethics support tool for MCD facilitators: the Confidentiality Compass. This paper describes the iterative developmental process, including our theoretical viewpoints and reflections on characteristics of CES tools in general. The content and goals of the ethics support tool, which contains four elements, is described. Part A is about providing information on the concept of confidentiality in MCD, part B is a moral compass with reflective questions, part C focuses on courses of action for careful handling of moral challenges related to confidentiality. Part D contains general lessons, best practices and tips for dealing with confidentiality in future cases. This paper concludes with providing some lessons-learned related to developing ethics support tools and some reflections on issues of quality and normativity of ethics support tools.
保密是临床伦理支持(CES)的核心先决条件之一。如果 CES 案例对 CES 工作人员提出有关(违反)CES 讨论内容保密性的道德问题,就会造成道德挑战。目前,似乎还没有明确的政策或指导,说明 CES 工作人员可以或应该如何处理这些与 CES 中(不)违反保密性有关的道德挑战。道德案例审议是一种特殊的 CES。根据我们的经验和对道德案例讨论主持人在这方面的道德支持需求的研究,我们共同为道德案例讨论主持人开发了一个道德支持工具:"保密指南针"。本文介绍了迭代开发过程,包括我们的理论观点和对一般 CES 工具特点的思考。道德支持工具包含四个部分,本文介绍了该工具的内容和目标。A 部分是关于提供医学合作中保密概念的信息,B 部分是带有反思问题的道德指南针,C 部分侧重于谨慎处理与保密有关的道德挑战的行动方案。D 部分包含在未来案件中处理保密问题的一般经验教训、最佳做法和提示。本文最后提供了与开发道德规范支持工具有关的一些经验教训,以及对道德规范支持工具的质量和规范性问题的一些思考。
{"title":"Ethics support for ethics support: the development of the Confidentiality Compass for dealing with moral challenges concerning (breaching) confidentiality in moral case deliberation","authors":"Wieke Ligtenberg, Margreet Stolper, Bert Molewijk","doi":"10.1186/s12910-024-01039-7","DOIUrl":"https://doi.org/10.1186/s12910-024-01039-7","url":null,"abstract":"Confidentiality is one of the central preconditions for clinical ethics support (CES). CES cases which generate moral questions for CES staff concerning (breaching) confidentiality of what has been discussed during CES can cause moral challenges. Currently, there seems to be no clear policy or guidance regarding how CES staff can or should deal with these moral challenges related to (not) breaching confidentiality within CES. Moral case deliberation is a specific kind of CES. Based on experiences and research into MCD facilitators’ needs for ethics support in this regard, we jointly developed an ethics support tool for MCD facilitators: the Confidentiality Compass. This paper describes the iterative developmental process, including our theoretical viewpoints and reflections on characteristics of CES tools in general. The content and goals of the ethics support tool, which contains four elements, is described. Part A is about providing information on the concept of confidentiality in MCD, part B is a moral compass with reflective questions, part C focuses on courses of action for careful handling of moral challenges related to confidentiality. Part D contains general lessons, best practices and tips for dealing with confidentiality in future cases. This paper concludes with providing some lessons-learned related to developing ethics support tools and some reflections on issues of quality and normativity of ethics support tools.","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"68 1","pages":""},"PeriodicalIF":2.7,"publicationDate":"2024-05-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140841472","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-03DOI: 10.1186/s12910-024-01051-x
Reetta P. Piili, Minna Hökkä, Jukka Vänskä, Elina Tolvanen, Pekka Louhiala, Juho T. Lehto
Assisted death, including euthanasia and physician-assisted suicide (PAS), is under debate worldwide, and these practices are adopted in many Western countries. Physicians’ attitudes toward assisted death vary across the globe, but little is known about physicians’ actual reactions when facing a request for assisted death. There is a clear gap in evidence on how physicians act and respond to patients’ requests for assisted death in countries where these actions are not legal. A survey including statements concerning euthanasia and PAS and an open question about their actions when facing a request for assisted death was sent to all Finnish physicians. Quantitative data are presented as numbers and percentages. Statistical significance was tested by using the Pearson chi-square test, when appropriate. The qualitative analysis was performed by using an inductive content analysis approach, where categories emerge from the data. Altogether, 6889 physicians or medical students answered the survey, yielding a response rate of 26%. One-third of participants agreed or partly agreed that they could assist a patient in a suicide. The majority (69%) of the participants fully or partly agreed that euthanasia should only be accepted due to difficult physical symptoms, while 12% fully or partly agreed that life turning into a burden should be an acceptable reason for euthanasia. Of the participants, 16% had faced a request for euthanasia or PAS, and 3033 answers from 2565 respondents were achieved to the open questions concerning their actions regarding the request and ethical aspects of assisted death. In the qualitative analysis, six main categories, including 22 subcategories, were formed regarding the phenomenon of how physicians act when facing this request. The six main categories were as follows: providing an alternative to the request, enabling care and support, ignoring the request, giving a reasoned refusal, complying with the request, and seeing the request as a possibility. Finnish physicians’ actions regarding the requests for assisted death, and attitudes toward euthanasia and PAS vary substantially. Open discussion, education, and recommendations concerning a request for assisted death and ethics around it are also highly needed in countries where euthanasia and PAS are not legal.
{"title":"Facing a request for assisted death - views of Finnish physicians, a mixed method study","authors":"Reetta P. Piili, Minna Hökkä, Jukka Vänskä, Elina Tolvanen, Pekka Louhiala, Juho T. Lehto","doi":"10.1186/s12910-024-01051-x","DOIUrl":"https://doi.org/10.1186/s12910-024-01051-x","url":null,"abstract":"Assisted death, including euthanasia and physician-assisted suicide (PAS), is under debate worldwide, and these practices are adopted in many Western countries. Physicians’ attitudes toward assisted death vary across the globe, but little is known about physicians’ actual reactions when facing a request for assisted death. There is a clear gap in evidence on how physicians act and respond to patients’ requests for assisted death in countries where these actions are not legal. A survey including statements concerning euthanasia and PAS and an open question about their actions when facing a request for assisted death was sent to all Finnish physicians. Quantitative data are presented as numbers and percentages. Statistical significance was tested by using the Pearson chi-square test, when appropriate. The qualitative analysis was performed by using an inductive content analysis approach, where categories emerge from the data. Altogether, 6889 physicians or medical students answered the survey, yielding a response rate of 26%. One-third of participants agreed or partly agreed that they could assist a patient in a suicide. The majority (69%) of the participants fully or partly agreed that euthanasia should only be accepted due to difficult physical symptoms, while 12% fully or partly agreed that life turning into a burden should be an acceptable reason for euthanasia. Of the participants, 16% had faced a request for euthanasia or PAS, and 3033 answers from 2565 respondents were achieved to the open questions concerning their actions regarding the request and ethical aspects of assisted death. In the qualitative analysis, six main categories, including 22 subcategories, were formed regarding the phenomenon of how physicians act when facing this request. The six main categories were as follows: providing an alternative to the request, enabling care and support, ignoring the request, giving a reasoned refusal, complying with the request, and seeing the request as a possibility. Finnish physicians’ actions regarding the requests for assisted death, and attitudes toward euthanasia and PAS vary substantially. Open discussion, education, and recommendations concerning a request for assisted death and ethics around it are also highly needed in countries where euthanasia and PAS are not legal.","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":""},"PeriodicalIF":2.7,"publicationDate":"2024-05-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140841475","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-04-30DOI: 10.1186/s12910-024-01040-0
Sylvia Martin, Mirko Ancillotti, Santa Slokenberga, Amal Matar
In this study, we examined the ethical implications of Egypt’s new clinical trial law, employing the ethical framework proposed by Emanuel et al. and comparing it to various national and supranational laws. This analysis is crucial as Egypt, considered a high-growth pharmaceutical market, has become an attractive location for clinical trials, offering insights into the ethical implementation of bioethical regulations in a large population country with a robust healthcare infrastructure and predominantly treatment-naïve patients. We conducted a comparative analysis of Egyptian law with regulations from Sweden and France, including the EU Clinical Trials Regulation, considering ethical human subject research criteria, and used a directed approach to qualitative content analysis to examine the laws and regulations. This study involved extensive peer scrutiny, frequent debriefing sessions, and collaboration with legal experts with relevant international legal expertise to ensure rigorous analysis and interpretation of the laws. On the rating of the seven different principles (social and scientific values, scientific validity, fair selection of participants, risk-benefit ratio, independent review, informed consent and respect for participants) Egypt, France, and EU regulations had comparable scores. Specific principles (Social Value, Scientific Value, and Fair selection of participants) were challenging to directly identify due to certain regulations embodying 'implicit' principles more than explicitly stated ones. The analysis underscores Egypt's alignment with internationally recognized ethical principles, as outlined by Emanuel et al., through its comparison with French, Swedish, and EU regulations, emphasizing the critical need for Egypt to continuously refine its ethical regulations to safeguard participant protection and research integrity. Key issues identified include the necessity to clarify and standardize the concept of social value in research, alongside concerns regarding the expertise and impartiality of ethical review boards, pointing towards a broader agenda for enhancing research ethics in Egypt and beyond.
{"title":"A comparative ethical analysis of the Egyptian clinical research law","authors":"Sylvia Martin, Mirko Ancillotti, Santa Slokenberga, Amal Matar","doi":"10.1186/s12910-024-01040-0","DOIUrl":"https://doi.org/10.1186/s12910-024-01040-0","url":null,"abstract":"In this study, we examined the ethical implications of Egypt’s new clinical trial law, employing the ethical framework proposed by Emanuel et al. and comparing it to various national and supranational laws. This analysis is crucial as Egypt, considered a high-growth pharmaceutical market, has become an attractive location for clinical trials, offering insights into the ethical implementation of bioethical regulations in a large population country with a robust healthcare infrastructure and predominantly treatment-naïve patients. We conducted a comparative analysis of Egyptian law with regulations from Sweden and France, including the EU Clinical Trials Regulation, considering ethical human subject research criteria, and used a directed approach to qualitative content analysis to examine the laws and regulations. This study involved extensive peer scrutiny, frequent debriefing sessions, and collaboration with legal experts with relevant international legal expertise to ensure rigorous analysis and interpretation of the laws. On the rating of the seven different principles (social and scientific values, scientific validity, fair selection of participants, risk-benefit ratio, independent review, informed consent and respect for participants) Egypt, France, and EU regulations had comparable scores. Specific principles (Social Value, Scientific Value, and Fair selection of participants) were challenging to directly identify due to certain regulations embodying 'implicit' principles more than explicitly stated ones. The analysis underscores Egypt's alignment with internationally recognized ethical principles, as outlined by Emanuel et al., through its comparison with French, Swedish, and EU regulations, emphasizing the critical need for Egypt to continuously refine its ethical regulations to safeguard participant protection and research integrity. Key issues identified include the necessity to clarify and standardize the concept of social value in research, alongside concerns regarding the expertise and impartiality of ethical review boards, pointing towards a broader agenda for enhancing research ethics in Egypt and beyond.","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"106 1","pages":""},"PeriodicalIF":2.7,"publicationDate":"2024-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140841478","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-04-20DOI: 10.1186/s12910-024-01048-6
Natalie L. Clark, Dorothy Coe, Natasha Newell, Mark N. A. Jones, Matthew Robb, David Reaich, Caroline Wroe
In May 2020, England moved to an opt-out organ donation system, meaning adults are presumed to be an organ donor unless within an excluded group or have opted-out. This change aims to improve organ donation rates following brain or circulatory death. Healthcare staff in the UK are supportive of organ donation, however, both healthcare staff and the public have raised concerns and ethical issues regarding the change. The #options survey was completed by NHS organisations with the aim of understanding awareness and support of the change. This paper analyses the free-text responses from the survey. The #options survey was registered as a National Institute of Health Research (NIHR) portfolio trial [IRAS 275992] 14 February 2020, and was completed between July and December 2020 across NHS organisations in the North-East and North Cumbria, and North Thames. The survey contained 16 questions of which three were free-text, covering reasons against, additional information required and family discussions. The responses to these questions were thematically analysed. The #options survey received 5789 responses from NHS staff with 1404 individuals leaving 1657 free-text responses for analysis. The family discussion question elicited the largest number of responses (66%), followed by those against the legislation (19%), and those requiring more information (15%). Analysis revealed six main themes with 22 sub-themes. The overall #options survey indicated NHS staff are supportive of the legislative change. Analysis of the free-text responses indicates that the views of the NHS staff who are against the change reflect the reasons, misconceptions, and misunderstandings of the public. Additional concerns included the rationale for the change, informed decision making, easy access to information and information regarding organ donation processes. Educational materials and interventions need to be developed for NHS staff to address the concepts of autonomy and consent, organ donation processes, and promote family conversations. Wider public awareness campaigns should continue to promote the positives and refute the negatives thus reducing misconceptions and misunderstandings. National Institute of Health Research (NIHR) [IRAS 275992].
{"title":"“I am in favour of organ donation, but I feel you should opt-in”—qualitative analysis of the #options 2020 survey free-text responses from NHS staff toward opt-out organ donation legislation in England","authors":"Natalie L. Clark, Dorothy Coe, Natasha Newell, Mark N. A. Jones, Matthew Robb, David Reaich, Caroline Wroe","doi":"10.1186/s12910-024-01048-6","DOIUrl":"https://doi.org/10.1186/s12910-024-01048-6","url":null,"abstract":"In May 2020, England moved to an opt-out organ donation system, meaning adults are presumed to be an organ donor unless within an excluded group or have opted-out. This change aims to improve organ donation rates following brain or circulatory death. Healthcare staff in the UK are supportive of organ donation, however, both healthcare staff and the public have raised concerns and ethical issues regarding the change. The #options survey was completed by NHS organisations with the aim of understanding awareness and support of the change. This paper analyses the free-text responses from the survey. The #options survey was registered as a National Institute of Health Research (NIHR) portfolio trial [IRAS 275992] 14 February 2020, and was completed between July and December 2020 across NHS organisations in the North-East and North Cumbria, and North Thames. The survey contained 16 questions of which three were free-text, covering reasons against, additional information required and family discussions. The responses to these questions were thematically analysed. The #options survey received 5789 responses from NHS staff with 1404 individuals leaving 1657 free-text responses for analysis. The family discussion question elicited the largest number of responses (66%), followed by those against the legislation (19%), and those requiring more information (15%). Analysis revealed six main themes with 22 sub-themes. The overall #options survey indicated NHS staff are supportive of the legislative change. Analysis of the free-text responses indicates that the views of the NHS staff who are against the change reflect the reasons, misconceptions, and misunderstandings of the public. Additional concerns included the rationale for the change, informed decision making, easy access to information and information regarding organ donation processes. Educational materials and interventions need to be developed for NHS staff to address the concepts of autonomy and consent, organ donation processes, and promote family conversations. Wider public awareness campaigns should continue to promote the positives and refute the negatives thus reducing misconceptions and misunderstandings. National Institute of Health Research (NIHR) [IRAS 275992].","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"7 1","pages":""},"PeriodicalIF":2.7,"publicationDate":"2024-04-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140630443","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}