{"title":"(Not So) Lost in Translation: Considering the GA4GH Diversity in Datasets Policy in the Japanese Context","authors":"Momoko Sato, Kaori Muto, Yukihide Momozawa, Yann Joly","doi":"10.1007/s41649-024-00305-5","DOIUrl":"10.1007/s41649-024-00305-5","url":null,"abstract":"<div><p>The genomics community has long acknowledged the lack of diversity in datasets used for research, prompting various stakeholders to confront this issue. In response, the Global Alliance for Genomics and Health (GA4GH) formulated a policy framework that recognizes the multiplicity of perspectives on diversity and proposed a systemic approach for more optimal data diversity. Given the importance of the research context, assessing this policy’s applicability within countries where diversity is less discussed is important. This study investigated the feasibility of implementing the GA4GH policy in Japan, a nation with a smaller genetic diversity than many Western countries. As the proportion of East Asian genomic research is limited internationally, focusing on the Japanese genome contributes to enhancing diversity. Meanwhile, labelling findings as “Japanese” can inadvertently reinforce perceptions of homogeneity and overlook ethnic minorities. Regions and socioeconomic status are also recognized as substantial factors of diversity within academia, yet concerns persist among the public regarding the heritability of stigmatized conditions. Social inclusion of sexual minorities has begun in Japan, but research surveys generally still use binary sex and gender categories, which underscores the need for additional variables. This study found that both academia and the public need to confront the overemphasis on homogeneity within Japanese society and hesitancy in addressing genetic factors. By doing so, more inclusive and diverse datasets can advance the field both ethically and scientifically. Perhaps the most important impact of the GA4GH policy will be to draw greater attention to the complex diversity challenges ahead in Japan.</p></div>","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"17 1","pages":"59 - 72"},"PeriodicalIF":1.3,"publicationDate":"2024-08-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11785831/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143081557","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}
{"title":"Correction to: Secondary Use of Health Data for Medical AI: A Cross‑Regional Examination of Taiwan and the EU","authors":"Chih‑hsing Ho","doi":"10.1007/s41649-024-00318-0","DOIUrl":"10.1007/s41649-024-00318-0","url":null,"abstract":"","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"17 4","pages":"765 - 766"},"PeriodicalIF":1.1,"publicationDate":"2024-08-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41649-024-00318-0.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145236989","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}
Kenji Matsui, Nipan Israsena, Jaranit Kaewkungwal, Pornpimon Adams, David Wendler, Reidar K. Lie
{"title":"Review Mechanisms for Advanced Medical Therapies in Japan and Thailand: A Proposal for the Use of Expert Clinical Benefit Assessments at Designated Institutions","authors":"Kenji Matsui, Nipan Israsena, Jaranit Kaewkungwal, Pornpimon Adams, David Wendler, Reidar K. Lie","doi":"10.1007/s41649-024-00301-9","DOIUrl":"10.1007/s41649-024-00301-9","url":null,"abstract":"<div><p>Advanced new therapies, such as stem cell and gene therapies and xenotransplantation, represent challenges for regulatory and ethical review. Major drug agencies, such as in the U.S., India, and Europe, have asserted regulatory authority and require ethics review by local ethics review committees, using the same strict requirements as those for standard drug approvals. In spite of this, unapproved and undocumented stem cell clinics flourish in all of these places, suggesting that current approaches do not offer patients sufficient protection. Japan has attempted another approach, requiring approvals at local levels for all regenerative medical procedures, and a faster approval of promising new interventions. The Japanese approach has, however, also been criticized as not striking a proper balance between early access and a proper assessment of safety and effectiveness. For smaller and less-resourced countries, such as Thailand, one major challenge is limited expertise to conduct the evaluation of these advanced new therapies. This article provides an overview of the issues facing regulators and proposes that countries should restrict the early adoption of advanced new therapies to specialized clinics with appropriate scientific and ethical expertise for review. Review in these institutions should focus on expert clinical benefit assessments for individual patients being offered such interventions, independently of whether they are offered as research or therapy.</p></div>","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"17 1","pages":"101 - 115"},"PeriodicalIF":1.3,"publicationDate":"2024-08-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11785842/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143081573","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}
{"title":"Two Approaches of ‘Proactive Consultation’: Towards Well-Functioning Clinical Ethics Consultation","authors":"Atsushi Kogetsu, Jungen Koimizu","doi":"10.1007/s41649-024-00302-8","DOIUrl":"10.1007/s41649-024-00302-8","url":null,"abstract":"<div><p>In recent years, the global need for clinical ethics consultation services (CECS) has increased to address ethical challenges, dilemmas, and moral distress in clinical environments. In Japan, many hospitals have introduced CECS over the past decade, but few such services work effectively because of the small number of consultations. To address this, we propose two proactive ethics consultation methods: inter-professional ethics rounds and patient note reviews. This paper provides a detailed explanation of these methods, complete with scenarios based on actual cases. These methods can make CECS ‘well-functioning’ by shifting the starting points of consultation from consultees to CECS providers. We then examine the impact and value of proactive ethics consultation as well as four critical factors for its success including attitude, positioning, and competency of proactive consultation teams. We believe our suggestions will provide valuable insights for future clinical ethics consultations and stimulate academic debate about what constitutes a ‘well-functioning’ CECS.</p></div>","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"17 1","pages":"91 - 99"},"PeriodicalIF":1.3,"publicationDate":"2024-08-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11785846/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143081580","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}
Muhammad Romail Manan, Iqra Nawaz, Leah Komer, Areeba Salam, Ioana Iustina Chiruţă, Zain Ul Abidin
{"title":"Diversity, Equity, and Inclusion on Editorial Boards of Medical Student Journals","authors":"Muhammad Romail Manan, Iqra Nawaz, Leah Komer, Areeba Salam, Ioana Iustina Chiruţă, Zain Ul Abidin","doi":"10.1007/s41649-024-00297-2","DOIUrl":"10.1007/s41649-024-00297-2","url":null,"abstract":"<div><p>Ensuring diversity within the healthcare sector is essential for improving team dynamics and ultimately patient outcomes. Diversity among medical students is fundamental to embody this philosophy. With the demand for diversity in the admissions process gaining traction, the authors expanded this conversation to the editorial boards (EBs) of Medical Student Journals (MSJs). The authors designed a cross-sectional study to evaluate the diversity status of EBs of MSJs under gender, geographic, and socioeconomic parameters using the Journal Diversity Index (JDI). Relevant information regarding the journal characteristics and the editorial board members (EBMs) of systematically screened journals was sequentially extracted along with job roles, which were later categorized into eight categories. Chi-squared test was applied to study the association between gender of the editor and the global distribution of the journal. Out of 22 included journals, 90.9% were published by institutions based in high-income countries (HICs). On regional analysis, none of the journals originated from “South Asia,” “Latin America and the Caribbean,” and “Middle East and North Africa”. Disparity in gender representation of EBMs became more prominent in senior roles. Additionally, 78.8% EBMs belonged to HICs. Regional analysis of EBMs revealed 83% belonging to the Global North. This disparity was seen across all editorial job roles. A greater disparity was seen among editors from the Global South with men comprising 66.4% of the total editors (<i>p</i><0.001). On JDI, 95.5% journals demonstrated poor diversity. Moreover, 72.7% and 77.3% journals had all members of the EB belonging to the same region and the same country income level respectively. As EBs of MSJs offer opportunities for further advancement, networking, and promotion, a commitment to prioritizing diversity, equity, and inclusion accompanied by development and implementation of actionable plans and allocation of sufficient resources should be given precedence.</p></div>","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"16 4","pages":"545 - 562"},"PeriodicalIF":1.3,"publicationDate":"2024-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142411657","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Debate: Should Parents be able to Request Non-Resuscitation for All Extremely Premature Newborn Infants?","authors":"Dominic JC Wilkinson, Julian Savulescu","doi":"10.1007/s41649-024-00299-0","DOIUrl":"10.1007/s41649-024-00299-0","url":null,"abstract":"<div><p>Infants who are born extremely prematurely can survive if they receive intensive medical treatment. However, they also have a high chance of dying, and a proportion of survivors have long-term health problems and disabilities. In many parts of the world, if parents request it, an extremely premature infant can receive palliative care rather than active survival-focused care at birth. But there are variations between countries as to whether or when this is permitted. To help inform ethical debates across Asia and more widely, we present two contrasting views about parental discretion and the treatment of extremely preterm infants. In questions of this nature, disagreement and dissensus are inevitable. Differences in the outcomes of treatment, the resources available, and the values of society mean that we should not expect a uniform approach. We identify points of potential consensus and compromise despite disagreement.</p></div>","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"17 2","pages":"251 - 263"},"PeriodicalIF":1.3,"publicationDate":"2024-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41649-024-00299-0.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143801195","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}
{"title":"Reflections from Chinese and Japanese Physicians on Medical Disputes","authors":"Hua Xu, Yining Ruan, Taketoshi Okita, Masao Tabata, Yasuhiro Kadooka, Atsushi Asai","doi":"10.1007/s41649-024-00294-5","DOIUrl":"10.1007/s41649-024-00294-5","url":null,"abstract":"<div><p>Physician–patient disputes are a major problem in healthcare. Physician–patient conflicts, workplace violence, and direct involvement in disputes have a significant negative impact on the well-being of physicians. China and Japan have similar cultures but differing healthcare systems. The present study aimed to examine and compare the experiences and perceptions of Chinese and Japanese physicians regarding medical disputes. Qualitative descriptive content analysis was performed for 18 cases from each country to assess the major issues involved in each case and their impact on the physicians. Common issues in medical disputes for both countries included monetary motives of patients and/or families, violence/threats from patients and/or families, the inability of patients and/or families to understand the risk of complications, and the uncertainties of medicine. The serious impact of medical disputes on the mental health and professionalism of physicians was also an issue shared by physicians of both countries. There were, however, differences in the magnitude and frequency of these issues between the two countries. Pre-existing distrust of physicians among patients and/or families was noted only by Chinese physicians, and insufficient information disclosure by physicians was noted only by Japanese physicians. In conclusion, there were similarities and differences between the two countries in the perceptions of physicians regarding medical disputes. Our analysis revealed differing healthcare situations due to cultural and institutional differences as well as universal problems intrinsic to medicine. Based on our results, we propose several key principles to improve the physician–patient relationship.</p></div>","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"16 4","pages":"683 - 709"},"PeriodicalIF":1.3,"publicationDate":"2024-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41649-024-00294-5.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142411564","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}
{"title":"The Effectiveness of a Hospital Ethics Committee in a Non-Western Country: Lessons from a Ten-Year Experience","authors":"M. Murat Civaner","doi":"10.1007/s41649-024-00289-2","DOIUrl":"10.1007/s41649-024-00289-2","url":null,"abstract":"<div><p>Hospital ethics committees (HECs) are relatively new in non-Western countries. This article examines the effectiveness of a HEC established in Bursa/Turkey over ten years, aiming to contribute insights for the wider implementation and enhancement of HECs. The evaluative methodology combines quantitative and qualitative approaches to assess its effectiveness. Patients are the primary users of the HEC, although applications from physicians, hospital managers, and the Patient Rights Board are also observed. Surgical specialities account for the majority of applications, particularly from obstetrics and gynecology, anesthesiology, and emergency medicine. The study identifies the types of applications, with malpractice claims, ethical inquiries, and access-related complaints being the most common. Despite many healthcare professionals encountering ethical dilemmas, the HEC was underutilized for consultations due to factors such as low awareness, perceived autonomy challenges, and skepticism regarding its efficacy. Additionally, the study describes how HEC recommendations contribute to policy development, addressing organizational issues and promoting ethical practices. The decision-making process within the HEC was also scrutinized, emphasizing the necessity of a structured methodology for moral deliberation. Concerns are raised about committee members lacking specific training in ethical analysis, potentially resulting in biases and suboptimal decisions. Contextual factors, including institutional culture and economic considerations, are also recognized for their influence on decision-making. This analysis highlights the multifaceted nature of HECs and the challenges they face in achieving effectiveness. It underscores the need for standardized measures, improved training for committee members, and contextual awareness to enhance the impact and functionality of HECs in healthcare institutions.</p></div>","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"16 4","pages":"615 - 634"},"PeriodicalIF":1.3,"publicationDate":"2024-08-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142411420","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Governance of Medical AI","authors":"Calvin W. L. Ho, Karel Caals","doi":"10.1007/s41649-024-00306-4","DOIUrl":"10.1007/s41649-024-00306-4","url":null,"abstract":"","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"16 3","pages":"303 - 305"},"PeriodicalIF":1.3,"publicationDate":"2024-07-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141634941","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Leonardo D. de Castro, 1952–2024","authors":"Alastair V. Campbell","doi":"10.1007/s41649-024-00308-2","DOIUrl":"10.1007/s41649-024-00308-2","url":null,"abstract":"","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"16 3","pages":"313 - 314"},"PeriodicalIF":1.3,"publicationDate":"2024-07-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141685584","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}