India R. Marks, Katrien Devolder, Hilary Bowman-Smart, Molly Johnston, Catherine Mills
Noninvasive prenatal testing (NIPT) has become widely available in recent years. While initially used to screen for trisomies 21, 18, and 13, the test has expanded to include a range of other conditions and will likely expand further. This paper addresses the ethical issues that arise from one particularly controversial potential use of NIPT: screening for adult-onset conditions (AOCs). We report data from our quantitative survey of Australian NIPT users' views on the ethical issues raised by NIPT for AOCs. The survey ascertained support for NIPT for several traits and conditions including AOCs. Participants were then asked about their level of concern around implications of screening for AOCs for the future child and parent(s). Descriptive and comparative data analyses were conducted. In total, 109 respondents were included in data analysis. The majority of respondents expressed support for NIPT screening for preventable (70.9%) and nonpreventable AOCs (80.8%). Most respondents indicated concern around potential harmful impacts associated with NIPT for AOCs, including the psychological impact on the future child and on the parent(s). Despite this, the majority of participants thought that continuation of a pregnancy known to be predisposed to an AOC is ethically acceptable. The implications of these data are critically discussed and used to inform the normative claim that prospective parents should be given access to NIPT for AOCs. The study contributes to a body of research debating the ethical acceptability and regulation of various applications of NIPT as screening panels expand.
{"title":"NIPT for adult-onset conditions: Australian NIPT users' views","authors":"India R. Marks, Katrien Devolder, Hilary Bowman-Smart, Molly Johnston, Catherine Mills","doi":"10.1111/bioe.13310","DOIUrl":"10.1111/bioe.13310","url":null,"abstract":"<p>Noninvasive prenatal testing (NIPT) has become widely available in recent years. While initially used to screen for trisomies 21, 18, and 13, the test has expanded to include a range of other conditions and will likely expand further. This paper addresses the ethical issues that arise from one particularly controversial potential use of NIPT: screening for adult-onset conditions (AOCs). We report data from our quantitative survey of Australian NIPT users' views on the ethical issues raised by NIPT for AOCs. The survey ascertained support for NIPT for several traits and conditions including AOCs. Participants were then asked about their level of concern around implications of screening for AOCs for the future child and parent(s). Descriptive and comparative data analyses were conducted. In total, 109 respondents were included in data analysis. The majority of respondents expressed support for NIPT screening for preventable (70.9%) and nonpreventable AOCs (80.8%). Most respondents indicated concern around potential harmful impacts associated with NIPT for AOCs, including the psychological impact on the future child and on the parent(s). Despite this, the majority of participants thought that continuation of a pregnancy known to be predisposed to an AOC is ethically acceptable. The implications of these data are critically discussed and used to inform the normative claim that prospective parents should be given access to NIPT for AOCs. The study contributes to a body of research debating the ethical acceptability and regulation of various applications of NIPT as screening panels expand.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":"38 6","pages":"566-575"},"PeriodicalIF":2.2,"publicationDate":"2024-05-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bioe.13310","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141086068","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
The present study aims to explore the forms paternalistic communication can take in doctor–patient interactions and how they should be considered from a normative perspective. In contemporary philosophical debate, the problem with paternalism is often perceived as either undermining autonomy (the autonomy problem) or the paternalist viewing their judgment as superior (the superiority problem). In either case, paternalism is problematized mainly in a general, theoretical sense. In contrast, this paper investigates specific doctor–patient encounters, revealing distinct types of paternalistic communication. For this study, I reviewed videorecorded encounters from a Norwegian hospital to detect paternalism—specifically, doctors overriding patients' expressed preferences, presumably to benefit or protect the patients. I identified variations in paternalistic communication styles—termed paternalist modes—which I categorized into four types: the fighter, the advocate, the sympathizer, and the fisher. Drawing on these findings, I aim to nuance the debate on paternalism. Specifically, I argue that each paternalist mode carries its own normative implications and that the autonomy and the superiority problems manifest differently across the modes. Furthermore, by illustrating paternalism in communication through real-life cases, I aim to reach a more comprehensive understanding of what we mean by paternalistic doctors.
{"title":"Four shades of paternalism in doctor–patient communication and their ethical implications","authors":"Anniken Fleisje","doi":"10.1111/bioe.13307","DOIUrl":"10.1111/bioe.13307","url":null,"abstract":"<p>The present study aims to explore the forms paternalistic communication can take in doctor–patient interactions and how they should be considered from a normative perspective. In contemporary philosophical debate, the problem with paternalism is often perceived as either undermining autonomy (the autonomy problem) or the paternalist viewing their judgment as superior (the superiority problem). In either case, paternalism is problematized mainly in a general, theoretical sense. In contrast, this paper investigates specific doctor–patient encounters, revealing distinct types of paternalistic communication. For this study, I reviewed videorecorded encounters from a Norwegian hospital to detect paternalism—specifically, doctors overriding patients' expressed preferences, presumably to benefit or protect the patients. I identified variations in paternalistic communication styles—termed <i>paternalist modes</i>—which I categorized into four types: <i>the fighter, the advocate, the sympathizer</i>, and <i>the fisher</i>. Drawing on these findings, I aim to nuance the debate on paternalism. Specifically, I argue that each paternalist mode carries its own normative implications and that the autonomy and the superiority problems manifest differently across the modes. Furthermore, by illustrating paternalism in communication through real-life cases, I aim to reach a more comprehensive understanding of what we mean by <i>paternalistic doctors</i>.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":"38 6","pages":"539-548"},"PeriodicalIF":2.2,"publicationDate":"2024-05-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bioe.13307","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141077113","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
This study examines girl child abuse in an internally displaced people's camp in north-central Nigeria and the response of community health workers. The conflict in Benue State is caused by religious differences between the natives (Tiv people) and the invading Fulani herdsmen. During these conflicts, women and girls were displaced, and they were kept in internally displaced persons (IDPs) located in different parts of the state. Literature has been extensively written on internal displacement in Nigeria, but none has been able to elucidate the health needs of girls and the various abuses girls and women are suffering in IDP camps. In this study, literature was extended (1) to explore the environment of the girl child in IDP camps, (2) to identify reasons for the abuse of the girl child in IDP camps, (3) to investigate the impacts of the abuse on the girl child in IDP camps and (4) to investigate how healthcare workers could be used to alleviate the plight of girl children in IDP camps. This is a qualitative case study, with data obtained from relevant academic literature and personal observation. The data were analysed using content analysis. Findings reveal that the girl child is suffering from psychological, economic and health challenges due to the various forms of abuse they are going through. Following the devastation in Benue State, healthcare workers from the community relocated to neighbouring states. There is a need to recall those healthcare workers and provide them with the necessary materials to assist girls in IDP camps. Recommendations are discussed.
{"title":"'Displaced in the name of Religion': Girl child abuse and community healthcare workers' response to women crying for help in IDP camps in North Central, Nigeria.","authors":"Favour Chukwuemeka Uroko, Mary Jerome Obiorah","doi":"10.1111/bioe.13305","DOIUrl":"https://doi.org/10.1111/bioe.13305","url":null,"abstract":"<p><p>This study examines girl child abuse in an internally displaced people's camp in north-central Nigeria and the response of community health workers. The conflict in Benue State is caused by religious differences between the natives (Tiv people) and the invading Fulani herdsmen. During these conflicts, women and girls were displaced, and they were kept in internally displaced persons (IDPs) located in different parts of the state. Literature has been extensively written on internal displacement in Nigeria, but none has been able to elucidate the health needs of girls and the various abuses girls and women are suffering in IDP camps. In this study, literature was extended (1) to explore the environment of the girl child in IDP camps, (2) to identify reasons for the abuse of the girl child in IDP camps, (3) to investigate the impacts of the abuse on the girl child in IDP camps and (4) to investigate how healthcare workers could be used to alleviate the plight of girl children in IDP camps. This is a qualitative case study, with data obtained from relevant academic literature and personal observation. The data were analysed using content analysis. Findings reveal that the girl child is suffering from psychological, economic and health challenges due to the various forms of abuse they are going through. Following the devastation in Benue State, healthcare workers from the community relocated to neighbouring states. There is a need to recall those healthcare workers and provide them with the necessary materials to assist girls in IDP camps. Recommendations are discussed.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2024-05-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141077112","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Rawls, race, and the 20th-century bioethics","authors":"Akshay Pendyal","doi":"10.1111/bioe.13301","DOIUrl":"10.1111/bioe.13301","url":null,"abstract":"","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":"38 6","pages":"576-577"},"PeriodicalIF":2.2,"publicationDate":"2024-05-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141072227","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Reply to Rawls's, race, and 20th century bioethics","authors":"Robert Baker","doi":"10.1111/bioe.13298","DOIUrl":"10.1111/bioe.13298","url":null,"abstract":"","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":"38 6","pages":"578-580"},"PeriodicalIF":2.2,"publicationDate":"2024-05-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141072229","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
The impact and use of Information and Communication Technologies (ICTs) in healthcare settings has been increasing since 2019. This is greatly due to the COVID-19 pandemic. But beyond accommodating an extraordinary and complex situation in terms of healthcare services, or beyond replacing personalised care delivered by healthcare professionals (HCPs), has there been a process of information and consultation for communities and HCPs? Do we have the basic requirements needed to make such use commonplace in health care? What will the impact be on communities and their governance? Have we arrived here by consensus or by imposition? Our purpose has been to conduct a transnational analysis by approaching communities, social actors, and healthcare professionals in three territories in a pilot study following a qualitative methodology. The aim being to discover the potential impact of such measures beyond the right to health and if such measures are compatible with the purpose of population settling in rural areas. Furthermore, to identify if this entails a conflict of value and priorities or if we need new ethical reviews both for communities and healthcare professionals.
{"title":"Transnational review on the use of information and communication technologies and technoscience in healthcare: Their impact on the autonomy and governance of individuals and communities.","authors":"Concepción Unanue Cuesta","doi":"10.1111/bioe.13303","DOIUrl":"https://doi.org/10.1111/bioe.13303","url":null,"abstract":"<p><p>The impact and use of Information and Communication Technologies (ICTs) in healthcare settings has been increasing since 2019. This is greatly due to the COVID-19 pandemic. But beyond accommodating an extraordinary and complex situation in terms of healthcare services, or beyond replacing personalised care delivered by healthcare professionals (HCPs), has there been a process of information and consultation for communities and HCPs? Do we have the basic requirements needed to make such use commonplace in health care? What will the impact be on communities and their governance? Have we arrived here by consensus or by imposition? Our purpose has been to conduct a transnational analysis by approaching communities, social actors, and healthcare professionals in three territories in a pilot study following a qualitative methodology. The aim being to discover the potential impact of such measures beyond the right to health and if such measures are compatible with the purpose of population settling in rural areas. Furthermore, to identify if this entails a conflict of value and priorities or if we need new ethical reviews both for communities and healthcare professionals.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2024-05-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140959181","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Public collective hunger strikes take place in complex social and political contexts, require medical attention and present ethical challenges to physicians. Empirical research, the ethical debate to date and existing guidelines by the World Medical Association focus almost exclusively on hunger strikes in detention. However, the public space differs substantially with regard to the conditions for the provision of health care and the diverse groups of healthcare providers or stakeholders involved. By reviewing empirical research on the experience of health professionals with public collective hunger strikes, we identified the following ethical challenges: (1) establishment of a trustful physician–striker relationship, (2) balancing of medico-ethical principles in medical decision-making, (3) handling of loyalty conflicts and (4) preservation of professional independence and the risk of political instrumentalization. Some of these challenges have already been described and discussed, yet not contextualized for public collective strikes, while others are novel. The presence of voluntary physicians may offer opportunities for a trustful relationship and, hence, for ethical treatment decisions. According to our findings, it requires more attention to how to realise autonomous medical decisions in the complex context of a dynamic, often unstructured and politically charged setting, which ethical norms should shape the professional role of voluntary physicians, and what is the influence of the hunger strikers' collective on individual healthcare decisions. Our article can serve as a starting point for further ethical discussion. It can also provide the basis for the development of potential guidelines to support health professionals involved in public collective hunger strikes.
{"title":"Ethical challenges in health care during collective hunger strikes in public or occupied spaces","authors":"Dominik Haselwarter, Katja Kuehlmeyer, Verina Wild","doi":"10.1111/bioe.13306","DOIUrl":"10.1111/bioe.13306","url":null,"abstract":"<p>Public collective hunger strikes take place in complex social and political contexts, require medical attention and present ethical challenges to physicians. Empirical research, the ethical debate to date and existing guidelines by the <i>World Medical Association</i> focus almost exclusively on hunger strikes in detention. However, the public space differs substantially with regard to the conditions for the provision of health care and the diverse groups of healthcare providers or stakeholders involved. By reviewing empirical research on the experience of health professionals with public collective hunger strikes, we identified the following ethical challenges: (1) establishment of a trustful physician–striker relationship, (2) balancing of medico-ethical principles in medical decision-making, (3) handling of loyalty conflicts and (4) preservation of professional independence and the risk of political instrumentalization. Some of these challenges have already been described and discussed, yet not contextualized for public collective strikes, while others are novel. The presence of voluntary physicians may offer opportunities for a trustful relationship and, hence, for ethical treatment decisions. According to our findings, it requires more attention to how to realise autonomous medical decisions in the complex context of a dynamic, often unstructured and politically charged setting, which ethical norms should shape the professional role of voluntary physicians, and what is the influence of the hunger strikers' collective on individual healthcare decisions. Our article can serve as a starting point for further ethical discussion. It can also provide the basis for the development of potential guidelines to support health professionals involved in public collective hunger strikes.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":"38 6","pages":"549-557"},"PeriodicalIF":2.2,"publicationDate":"2024-05-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bioe.13306","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140959180","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Łukasz Wiktor, Maria Damps, Grace Kansayisa, Szymon Pietrzak, Bartłomiej Osadnik
This article considers aspects of a development aid that provides medical support to strengthen pediatric orthopedics in Rwanda. We present part of the Afriquia foundation work, a nonprofit foundation from Poland involved in supporting the medical sector in Rwanda as a sign of global solidarity and the human right to health. The main foundation's activity is the treatment of orthopedic problems among Rwandan citizens. We present a case study of two children under the care of the Afiquia foundation. 11-year-old Seraphine treated due to the consequences of right tibia osteomyelitis and 11-year-old Lavi suffering from osteogenesis imperfecta. Both children were treated surgically in Poland due to Rwanda's lack of treatment possibilities. After the applied treatment, Seraphine walks correctly without crutches and can attend school and thrive among her peers. Lavi has not sustained any fragility fracture since the surgery in Poland. He is healthy and constantly ongoing his rehabilitation including gait training. The described cases initiated development aid in Rwanda, supplying hospitals with orthopedic implants and training medical staff. The growing number of humanitarian crises across the globe and the people affected requires increasing organizations involved in providing relief. The emphasis should be on global education, aiming to make the recipients reflect and prepare them to face humanitarian crises.
{"title":"Bioethical challenges in postwar development aid: The Rwandan case study.","authors":"Łukasz Wiktor, Maria Damps, Grace Kansayisa, Szymon Pietrzak, Bartłomiej Osadnik","doi":"10.1111/bioe.13304","DOIUrl":"https://doi.org/10.1111/bioe.13304","url":null,"abstract":"<p><p>This article considers aspects of a development aid that provides medical support to strengthen pediatric orthopedics in Rwanda. We present part of the Afriquia foundation work, a nonprofit foundation from Poland involved in supporting the medical sector in Rwanda as a sign of global solidarity and the human right to health. The main foundation's activity is the treatment of orthopedic problems among Rwandan citizens. We present a case study of two children under the care of the Afiquia foundation. 11-year-old Seraphine treated due to the consequences of right tibia osteomyelitis and 11-year-old Lavi suffering from osteogenesis imperfecta. Both children were treated surgically in Poland due to Rwanda's lack of treatment possibilities. After the applied treatment, Seraphine walks correctly without crutches and can attend school and thrive among her peers. Lavi has not sustained any fragility fracture since the surgery in Poland. He is healthy and constantly ongoing his rehabilitation including gait training. The described cases initiated development aid in Rwanda, supplying hospitals with orthopedic implants and training medical staff. The growing number of humanitarian crises across the globe and the people affected requires increasing organizations involved in providing relief. The emphasis should be on global education, aiming to make the recipients reflect and prepare them to face humanitarian crises.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2024-05-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140961065","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}