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Comprehension of informed consent and voluntary participation in registration cohorts for phase IIb HIV vaccine trial in Dar Es Salaam, Tanzania: a qualitative descriptive study BMC Med. Ethics (IF 2.7) Pub Date : 2024-03-13 Masunga K. Iseselo, Edith A. M. Tarimo
Informed consent as stipulated in regulatory human research guidelines requires volunteers to be well-informed about what will happen to them in a trial. However, researchers may be faced with the challenge of how to ensure that a volunteer agreeing to take part in a clinical trial is truly informed. This study aimed to find out volunteers’ comprehension of informed consent and voluntary participation
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An empirical ethics study of the coherence of NICE technology appraisal policy and its implications for moral justification BMC Med. Ethics (IF 2.7) Pub Date : 2024-03-06 Victoria Charlton, Michael DiStefano
As the UK’s main healthcare priority-setter, the National Institute for Health and Care Excellence (NICE) has good reason to want to demonstrate that its decisions are morally justified. In doing so, it has tended to rely on the moral plausibility of its principle of cost-effectiveness and the assertion that it has adopted a fair procedure. But neither approach provides wholly satisfactory grounds
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Correction to: Evaluating the understanding of the ethical and moral challenges of Big Data and AI among Jordanian medical students, physicians in training, and senior practitioners: a cross-sectional study BMC Med. Ethics (IF 2.7) Pub Date : 2024-03-05 Abdallah Al-Ani, Abdallah Rayyan, Ahmad Maswadeh, Hala Sultan, Ahmad Alhammouri, Hadeel Asfour, Tariq Alrawajih, Sarah Al Sharie, Fahed Al Karmi, Ahmed Mahmoud Al-Azzam, Asem Mansour, Maysa Al-Hussaini
Correction to: BMC Medical Ethics (2024) 25:1 https://doi.org/10.1186/s12910-024-01008-0 Following publication of the original article [1], author’s name Ahmed Mahmoud Al-Azzam was incorrectly written as Ahmad Azzam. The original article has been corrected. Al-Ani, A., Rayyan, A., Maswadeh, A. et al Evaluating the understanding of the ethical and moral challenges of Big Data and AI among Jordanian
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Correction to: Mapping trust relationships in organ donation and transplantation: a conceptual model BMC Med. Ethics (IF 2.7) Pub Date : 2024-03-05 María Victoria Martínez-López, Leah McLaughlin, Alberto Molina-Pérez, Krzysztof Pabisiak, Nadia Primc, Gurch Randhawa, David Rodríguez-Arias, Jorge Suárez, Sabine Wöhlke, Janet Delgado
Correction to: BMC Medical Ethics (2023) 24:1 https://doi.org/10.1186/s12910-023-00965-2 Following publication of the original article [1], there are few text that has been changed in the acknowledgement section. So, the section should read from “The authors thank Maite Cruz Piqueras, Anja Marie Bornø Jensen, Eva Martín Nieto, Jorge Ruiz Ruiz and Silke Schicktanz for their contribution. MVML also thanks
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Ethics of early detection of disease risk factors: A scoping review BMC Med. Ethics (IF 2.7) Pub Date : 2024-03-05 Sammie N. G. Jansen, Bart A. Kamphorst, Bob C. Mulder, Irene van Kamp, Sandra Boekhold, Peter van den Hazel, Marcel F. Verweij
Scientific and technological advancements in mapping and understanding the interrelated pathways through which biological and environmental exposures affect disease development create new possibilities for detecting disease risk factors. Early detection of such risk factors may help prevent disease onset or moderate the disease course, thereby decreasing associated disease burden, morbidity, and mortality
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“She was finally mine”: the moral experience of families in the context of trisomy 13 and 18– a scoping review with thematic analysis BMC Med. Ethics (IF 2.7) Pub Date : 2024-03-02 Zoe Ritchie, Gail Teachman, Randi Zlotnik Shaul, Maxwell J. Smith
The value of a short life characterized by disability has been hotly debated in the literature on fetal and neonatal outcomes. We conducted a scoping review to summarize the available empirical literature on the experiences of families in the context of trisomy 13 and 18 (T13/18) with subsequent thematic analysis of the 17 included articles. Themes constructed include (1) Pride as Resistance, (2) Negotiating
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A bioethical perspective on the meanings behind a wish to hasten death: a meta-ethnographic review BMC Med. Ethics (IF 2.7) Pub Date : 2024-02-27 Paulo J. Borges, Pablo Hernández-Marrero, Sandra Martins Pereira
The expressions of a “wish to hasten death” or “wish to die” raise ethical concerns and challenges. These expressions are related to ethical principles intertwined within the field of medical ethics, particularly in end-of-life care. Although some reviews were conducted about this topic, none of them provides an in-depth analysis of the meanings behind the “wish to hasten death/die” based specifically
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Cross-sectional analysis of financial relationships between board certified allergists and the pharmaceutical industry in Japan BMC Med. Ethics (IF 2.7) Pub Date : 2024-02-20 Anju Murayama, Yuki Senoo
Financial interactions between pharmaceutical companies and physicians lead to conflicts of interest. This study examines the extent and trends of non-research payments made by pharmaceutical companies to board-certified allergists in Japan between 2016 and 2020. A retrospective analysis of disclosed payment data from pharmaceutical companies affiliated with the Japanese Pharmaceutical Manufacturers
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Layered vulnerability and researchers’ responsibilities: learning from research involving Kenyan adolescents living with perinatal HIV infection BMC Med. Ethics (IF 2.7) Pub Date : 2024-02-20 Mary Kimani, Sassy Molyneux, Anderson Charo, Scholastica M. Zakayo, Gladys Sanga, Rita Njeru, Alun Davies, Maureen Kelley, Amina Abubakar, Vicki Marsh
Carefully planned research is critical to developing policies and interventions that counter physical, psychological and social challenges faced by young people living with HIV/AIDS, without increasing burdens. Such studies, however, must navigate a ‘vulnerability paradox’, since including potentially vulnerable groups also risks unintentionally worsening their situation. Through embedded social science
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The role of bioethics services in paediatric intensive care units: a qualitative descriptive study BMC Med. Ethics (IF 2.7) Pub Date : 2024-02-19 Denise Alexander, Mary Quirke, Jo Greene, Lorna Cassidy, Carol Hilliard, Maria Brenner
There is considerable variation in the functionality of bioethical services in different institutions and countries for children in hospital, despite new challenges due to increasing technology supports for children with serious illness and medical complexity. We aimed to understand how bioethics services address bioethical concerns that are increasingly encountered in paediatric intensive care. A
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Moral approval of xenotransplantation in Egypt: associations with religion, attitudes towards animals and demographic factors BMC Med. Ethics (IF 2.7) Pub Date : 2024-02-19 Gabriel Andrade, Eid AboHamza, Yasmeen Elsantil, AlaaEldin Ayoub, Dalia Bedewy
Xenotransplantation has great potential as an alternative to alleviate the shortage of organs for donation. However, given that the animal most suited for xenotransplantation is the pig, there are concerns that people in Muslim countries may be more hesitant to morally approve of these procedures. In this study, the moral approval of xenotransplantation was assessed in a group of 895 participants in
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Evaluating the understanding of the ethical and moral challenges of Big Data and AI among Jordanian medical students, physicians in training, and senior practitioners: a cross-sectional study BMC Med. Ethics (IF 2.7) Pub Date : 2024-02-17 Abdallah Al-Ani, Abdallah Rayyan, Ahmad Maswadeh, Hala Sultan, Ahmad Alhammouri, Hadeel Asfour, Tariq Alrawajih, Sarah Al Sharie, Fahed Al Karmi, Ahmad Azzam, Asem Mansour, Maysa Al-Hussaini
To examine the understanding of the ethical dilemmas associated with Big Data and artificial intelligence (AI) among Jordanian medical students, physicians in training, and senior practitioners. We implemented a literature-validated questionnaire to examine the knowledge, attitudes, and practices of the target population during the period between April and August 2023. Themes of ethical debate included
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“That’s just Future Medicine” - a qualitative study on users’ experiences of symptom checker apps BMC Med. Ethics (IF 2.7) Pub Date : 2024-02-16 Regina Müller, Malte Klemmt, Roland Koch, Hans-Jörg Ehni, Tanja Henking, Elisabeth Langmann, Urban Wiesing, Robert Ranisch
Symptom checker apps (SCAs) are mobile or online applications for lay people that usually have two main functions: symptom analysis and recommendations. SCAs ask users questions about their symptoms via a chatbot, give a list with possible causes, and provide a recommendation, such as seeing a physician. However, it is unclear whether the actual performance of a SCA corresponds to the users’ experiences
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Perceptions of COVID-19 patients in the use of bioethical principles and the physician-patient relationship: a qualitative approach BMC Med. Ethics (IF 2.7) Pub Date : 2024-02-09 Guillermo Cantú Quintanilla, Irma Eloisa Gómez-Guerrero, Nuria Aguiñaga-Chiñas, Mariana López Cervantes, Ignacio David Jaramillo Flores, Pedro Alonso Slon Rodríguez, Carlos Francisco Bravo Vargas, America Arroyo-Valerio, María del Carmen García-Higuera
The COVID-19 pandemic has influenced the approach to the health-disease system, raising the question about the principles of bioethics present in physician–patient relations. The principles while widely accepted may not be sufficient for a comprehensive ethical analysis. Therefore, the aim of this study was to explore the perception of these principles and the physician–patient relationship during
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Cross-cultural perspectives on intelligent assistive technology in dementia care: comparing Israeli and German experts’ attitudes BMC Med. Ethics (IF 2.7) Pub Date : 2024-02-07 Hanan AboJabel, Johannes Welsch, Silke Schicktanz
Despite the great benefits of intelligent assistive technology (IAT) for dementia care – for example, the enhanced safety and increased independence of people with dementia and their caregivers – its practical adoption is still limited. The social and ethical issues pertaining to IAT in dementia care, shaped by factors such as culture, may explain these limitations. However, most studies have focused
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Conscientious objection and barriers to abortion within a specific regional context - an expert interview study BMC Med. Ethics (IF 2.7) Pub Date : 2024-02-06 Robin Krawutschke, Tania Pastrana, Dagmar Schmitz
While most countries that allow abortion on women’s request also grant physicians a right to conscientious objection (CO), this has proven to constitute a potential barrier to abortion access. Conscientious objection is regarded as an understudied phenomenon the effects of which have not yet been examined in Germany. Based on expert interviews, this study aims to exemplarily reconstruct the processes
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Analyzing the composition of the editorial boards in high-impact medical ethics journals: a survey study BMC Med. Ethics (IF 2.7) Pub Date : 2024-02-04 Zhiwei Jia, Donghua Liu, Xingxuan Li, Tianlin Wen, Xiyan Zhao, Wei Li
The underrepresentation of scholarly works from low- and middle-income countries (LMICs) in academic literature is a documented concern, attributed partly to editorial biases. This trend, prevalent across various disciplines, has been less explored in the context of medical ethics journals. This study aimed to examine the composition of editorial board members (EBM) in high-impact medical ethics journals
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Ethical dilemmas in prioritizing patients for scarce radiotherapy resources BMC Med. Ethics (IF 2.7) Pub Date : 2024-01-31 Rebecca J. DeBoer, Anita Ho, Espérance Mutoniwase, Cam Nguyen, Grace Umutesi, Jean Bosco Bigirimana, Nicaise Nsabimana, Katherine Van Loon, Lawrence N. Shulman, Scott A. Triedman, Vincent K. Cubaka, Cyprien Shyirambere
Radiotherapy is an essential component of cancer treatment, yet many countries do not have adequate capacity to serve all patients who would benefit from it. Allocation systems are needed to guide patient prioritization for radiotherapy in resource-limited contexts. These systems should be informed by allocation principles deemed relevant to stakeholders. This study explores the ethical dilemmas and
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Questionable research practices of medical and dental faculty in Pakistan – a confession BMC Med. Ethics (IF 2.7) Pub Date : 2024-01-31 Ayesha Fahim, Aysha Sadaf, Fahim Haider Jafari, Kashif Siddique, Ahsan Sethi
Intellectual honesty and integrity are the cornerstones of conducting any form of research. Over the last few years, scholars have shown great concerns over questionable research practices (QRPs) in academia. This study aims to investigate the questionable research practices amongst faculty members of medical and dental colleges in Pakistan. A descriptive multi-institutional online survey was conducted
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Integrating ethics in AI development: a qualitative study BMC Med. Ethics (IF 2.7) Pub Date : 2024-01-23 Laura Arbelaez Ossa, Giorgia Lorenzini, Stephen R. Milford, David Shaw, Bernice S. Elger, Michael Rost
While the theoretical benefits and harms of Artificial Intelligence (AI) have been widely discussed in academic literature, empirical evidence remains elusive regarding the practical ethical challenges of developing AI for healthcare. Bridging the gap between theory and practice is an essential step in understanding how to ethically align AI for healthcare. Therefore, this research examines the concerns
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Compliance with research ethics in epidemiological studies targeted to conflict-affected areas in Western Ethiopia: validity of informed consent (VIC) by information comprehension and voluntariness (ICV) BMC Med. Ethics (IF 2.7) Pub Date : 2024-01-18 Gemechu Tiruneh, Mekdes Yilma, Bizuneh Wakuma, Eba Abdisa, Lami Bayisa, Michelle Nichols, Anja Bedeker, Nicki Tiffin
The conduct of research is critical to advancing human health. However, there are issues of ethical concern specific to the design and conduct of research in conflict settings. Conflict-affected countries often lack strong platform to support technical guidance and monitoring of research ethics, which may lead to the use of divergent ethical standards some of which are poorly elaborated and loosely
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Ethics rounds in the ambulance service: a qualitative evaluation BMC Med. Ethics (IF 2.7) Pub Date : 2024-01-18 Catharina Frank, Andreas Rantala, Anders Svensson, Anders Sterner, Jessica Green, Anders Bremer, Bodil Holmberg
It is a common ethical challenge for ambulance clinicians to care for patients with impaired decision-making capacities while assessing and determining the degree of decision-making ability and considering ethical values. Ambulance clinicians’ ethical competence seems to be increasingly important in coping with such varied ethical dilemmas. Ethics rounds is a model designed to promote the development
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Towards the implementation of law n. 219/2017 on informed consent and advance directives for patients with psychiatric disorders and dementia. Physicians’ knowledge, attitudes and practices in four northern Italian health care facilities BMC Med. Ethics (IF 2.7) Pub Date : 2024-01-06 Corinna Porteri, Giulia Ienco, Mariassunta Piccinni, Patrizio Pasqualetti
On December 2017 the Italian Parliament approved law n. 219/2017 “Provisions for informed consent and advance directives” regarding challenging legal and bioethical issues related to healthcare decisions and end-of life choices. The law promotes the person’s autonomy as a right and provides for the centrality of the individual in every scenario of health care by mean of three tools: informed consent
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AI-driven decision support systems and epistemic reliance: a qualitative study on obstetricians’ and midwives’ perspectives on integrating AI-driven CTG into clinical decision making BMC Med. Ethics (IF 2.7) Pub Date : 2024-01-06 Rachel Dlugatch, Antoniya Georgieva, Angeliki Kerasidou
Given that AI-driven decision support systems (AI-DSS) are intended to assist in medical decision making, it is essential that clinicians are willing to incorporate AI-DSS into their practice. This study takes as a case study the use of AI-driven cardiotography (CTG), a type of AI-DSS, in the context of intrapartum care. Focusing on the perspectives of obstetricians and midwives regarding the ethical
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A scoping review of the ethical impacts of international medical electives on local students and patient care BMC Med. Ethics (IF 2.7) Pub Date : 2024-01-03 Magdalena Chmura, Shobhana Nagraj
International electives are often considered a valuable learning opportunity for medical students. Yet, as travelling to lower and middle income countries (LMICs) becomes more common, ethical considerations of such practices emerge. We conducted a scoping review to assess the extent to which five ethical themes were addressed in existing literature about electives, with the aim of investigating the
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The Diversity Compass: a clinical ethics support instrument for dialogues on diversity in healthcare organizations BMC Med. Ethics (IF 2.7) Pub Date : 2024-01-03 Charlotte Kröger, Bert Molewijk, Maaike Muntinga, Suzanne Metselaar
Increasing social pluralism adds to the already existing variety of heterogeneous moral perspectives on good care, health, and quality of life. Pluralism in social identities is also connected to health and care disparities for minoritized patient (i.e. care receiver) populations, and to specific diversity-related moral challenges of healthcare professionals and organizations that aim to deliver diversity-responsive
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Culturally appropriate consent processes for community-driven indigenous child health research: a scoping review BMC Med. Ethics (IF 2.7) Pub Date : 2024-01-03 Cindy Peltier, Sarah Dickson, Viviane Grandpierre, Irina Oltean, Lorrilee McGregor, Emilie Hageltorn, Nancy L. Young
Current requirements for ethical research in Canada, specifically the standard of active or signed parental consent, can leave Indigenous children and youth with inequitable access to research opportunities or health screening. Our objective was to examine the literature to identify culturally safe research consent processes that respect the rights of Indigenous children, the rights and responsibilities
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Family roles in informed consent from the perspective of young Chinese doctors: a questionnaire study BMC Med. Ethics (IF 2.7) Pub Date : 2024-01-03 Hanhui Xu, Mengci Yuan
Based on the principle of informed consent, doctors are required to fully inform patients and respect their medical decisions. In China, however, family members usually play a special role in the patient’s informed consent, which creates a unique “doctor-family-patient” model of the physician-patient relationship. Our study targets young doctors to investigate the ethical dilemmas they may encounter
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Community engagement in genetics and genomics research: a qualitative study of the perspectives of genetics and genomics researchers in Uganda BMC Med. Ethics (IF 2.7) Pub Date : 2024-01-02 Harriet Nankya, Edward Wamala, Vincent Pius Alibu, John Barugahare
Generally, there is unanimity about the value of community engagement in health-related research. There is also a growing tendency to view genetics and genomics research (GGR) as a special category of research, the conduct of which including community engagement (CE) as needing additional caution. One of the motivations of this study was to establish how differently if at all, we should think about
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The challenges and potential solutions of achieving meaningful consent amongst research participants in northern Thailand: a qualitative study BMC Med. Ethics (IF 2.7) Pub Date : 2023-12-19 Rachel C Greer, Nipaphan Kanthawang, Jennifer Roest, Carlo Perrone, Tri Wangrangsimakul, Michael Parker, Maureen Kelley, Phaik Yeong Cheah
Achieving meaningful consent can be challenging, particularly in contexts of diminished literacy, yet is a vital part of participant protection in global health research. We explored the challenges and potential solutions of achieving meaningful consent through a qualitative study in a predominantly hill tribe ethnic minority population in northern Thailand, a culturally distinctive population with
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“Being prevented from providing good care: a conceptual analysis of moral stress among health care workers during the COVID-19 pandemic” BMC Med. Ethics (IF 2.7) Pub Date : 2023-12-09 Martina E. Gustavsson, Johan von Schreeb, Filip K. Arnberg, Niklas Juth
Health care workers (HCWs) are susceptible to moral stress and distress when they are faced with morally challenging situations where it is difficult to act in line with their moral standards. In times of crisis, such as disasters and pandemics, morally challenging situations are more frequent, due to the increased imbalance between patient needs and resources. However, the concepts of moral stress
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Medical students’ and residents’ views on euthanasia BMC Med. Ethics (IF 2.7) Pub Date : 2023-12-08 Rogério Aparecido Dedivitis, Leandro Luongo de Matos, Mario Augusto Ferrari de Castro, Andrea Anacleto Ferrari de Castro, Renata Rocha Giaxa, Patrícia Zen Tempski
Doctors are increasingly faced with end-of-life decisions. Little is known about how medical students approach euthanasia. The objective of this study was to evaluate, among medical students and residents, the view on euthanasia and its variants; correlate such a view with empathy and religiosity/spiritualism; and with the stages of medical training in Brazil. This is an exploratory cross-sectional
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Ethical considerations for biobanking and use of genomics data in Africa: a narrative review BMC Med. Ethics (IF 2.7) Pub Date : 2023-12-05 Mary Amoakoh-Coleman, Dorice Vieira, James Abugri
Biobanking and genomic research requires collection and storage of human tissue from study participants. From participants’ perspectives within the African context, this can be associated with fears and misgivings due to a myriad of factors including myths and mistrust of researchers. From the researchers angle ethical dilemmas may arise especially with consenting and sample reuse during storage. The
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Identifying facilitators of and barriers to the adoption of dynamic consent in digital health ecosystems: a scoping review BMC Med. Ethics (IF 2.7) Pub Date : 2023-12-01 Ah Ra Lee, Dongjun Koo, Il Kon Kim, Eunjoo Lee, Hyun Ho Kim, Sooyoung Yoo, Jeong-Hyun Kim, Eun Kyung Choi, Ho-Young Lee
Conventional consent practices face ethical challenges in continuously evolving digital health environments due to their static, one-time nature. Dynamic consent offers a promising solution, providing adaptability and flexibility to address these ethical concerns. However, due to the immaturity of the concept and accompanying technology, dynamic consent has not yet been widely used in practice. This
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Increasing efficiency and well-being? a systematic review of the empirical claims of the double-benefit argument in socially assistive devices BMC Med. Ethics (IF 2.7) Pub Date : 2023-11-30 Joschka Haltaufderheide, Annika Lucht, Christoph Strünck, Jochen Vollmann
Socially assistive devices (care robots, companions, smart screen assistants) have been advocated as a promising tool in elderly care in Western healthcare systems. Ethical debates indicate various challenges. One of the most prevalent arguments in the debate is the double-benefit argument claiming that socially assistive devices may not only provide benefits for autonomy and well-being of their users
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Equality, diversity, and inclusion in oncology clinical trials: an audit of essential documents and data collection against INCLUDE under-served groups in a UK academic trial setting BMC Med. Ethics (IF 2.7) Pub Date : 2023-11-28 Dhrusti Patel, Lucy Kilburn, Lisa Fox, Emma Hall, Judith Bliss, Rebecca Lewis
Clinical trials should be as inclusive as possible to facilitate equitable access to research and better reflect the population towards which any intervention is aimed. Informed by the UK’s National Institute for Health and Care Research (NIHR) Innovations in Clinical Trial Design and Delivery for the Under-served (INCLUDE) guidance, we audited oncology trials conducted by the Clinical Trials and Statistics
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Attitude and concerns of healthy individuals regarding post-mortem brain donation. A qualitative study on a nation-wide sample in Italy BMC Med. Ethics (IF 2.7) Pub Date : 2023-11-27 Chiara Cattaneo, Iuliia Urakcheeva, Gianmarco Giacomini, Maria Antonietta Stazi, Susanna Lana , Antonio Arnofi, Miriam Salemi, Virgilia Toccaceli
Collecting post-mortem brain tissue is essential, especially from healthy “control” individuals, to advance knowledge on increasingly common neurological and mental disorders. Yet, healthy individuals, on which this study is focused, are still understudied. The aim of the study was to explore, among healthy potential brain donors and/or donors’ relatives, attitude, concerns and opinion about post-mortem
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Correction: Moral conflicts from the justice and care perspectives of Japanese Nurses: a qualitative content analysis BMC Med. Ethics (IF 2.7) Pub Date : 2023-11-27 Kayoko Tsunematsu, Atsushi Asai, Yasuhiro Kadooka
Correction to: BMC Medical Ethics (2023) 24:1 https://doi.org/10.1186/s12910-023-00960-7 Following publication of the original article [1], the title “Japanese Nurses” needs to be capitalized so the title will as read follows “Moral conflicts from the justice and care perspectives of Japanese Nurses: a qualitative content analysis”. The original article has been corrected. Tsunematsu K, Asai A, Kadooka
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Should AI allocate livers for transplant? Public attitudes and ethical considerations BMC Med. Ethics (IF 2.7) Pub Date : 2023-11-27 Max Drezga-Kleiminger, Joanna Demaree-Cotton, Julian Koplin, Julian Savulescu, Dominic Wilkinson
Allocation of scarce organs for transplantation is ethically challenging. Artificial intelligence (AI) has been proposed to assist in liver allocation, however the ethics of this remains unexplored and the view of the public unknown. The aim of this paper was to assess public attitudes on whether AI should be used in liver allocation and how it should be implemented. We first introduce some potential
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Willingness toward post-mortem body donation to science at a Mexican university: an exploratory survey BMC Med. Ethics (IF 2.7) Pub Date : 2023-11-25 I. Meester, M. Polino Guajardo, A. C. Treviño Ramos, J. M. Solís-Soto, A. Rojas-Martinez
Voluntary post-mortem donation to science (PDS) is the most appropriate source for body dissection in medical education and training, and highly useful for biomedical research. In Mexico, unclaimed bodies are no longer a legal source, but PDS is legally possible, although scarcely facilitated, and mostly ignored by the general population. Therefore, we aimed to evaluate the attitude and willingness
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Objections to assisted dying within institutions: systemic solutions for rapprochement BMC Med. Ethics (IF 2.7) Pub Date : 2023-11-16 Carmelle Peisah, Adrianna Sheppard, Kelvin CY Leung
In this Matters Arising article, we outline how the recent article “The impact on patients of objections by institutions to assisted dying: a qualitative study of family caregivers’ perceptions” (White et al., 2023 Mar 13;24(1):22) informed Voluntary Assisted Dying (VAD) implementation in our large Australian public health setting, where objections do not emanate from, but within, the institution.
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Views on sharing mental health data for research purposes: qualitative analysis of interviews with people with mental illness BMC Med. Ethics (IF 2.7) Pub Date : 2023-11-14 Emily Watson, Sue Fletcher-Watson, Elizabeth Joy Kirkham
Improving the ways in which routinely-collected mental health data are shared could facilitate substantial advances in research and treatment. However, this process should only be undertaken in partnership with those who provide such data. Despite relatively widespread investigation of public perspectives on health data sharing more generally, there is a lack of research on the views of people with
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Uncertain futures and unsolicited findings in pediatric genomic sequencing: guidelines for return of results in cases of developmental delay BMC Med. Ethics (IF 2.7) Pub Date : 2023-11-11 Candice Cornelis, Wybo Dondorp, Ineke Bolt, Guido de Wert, Marieke van Summeren, Eva Brilstra, Nine Knoers, Annelien L. Bredenoord
Massively parallel sequencing techniques, such as whole exome sequencing (WES) and whole genome sequencing (WGS), may reveal unsolicited findings (UFs) unrelated to the diagnostic aim. Such techniques are frequently used for diagnostic purposes in pediatric cases of developmental delay (DD). Yet policy guidelines for informed consent and return of UFs are not well equipped to address specific moral
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Developing a digital informed consent app: opportunities and challenges of a new format to inform and obtain consent in public health research BMC Med. Ethics (IF 2.7) Pub Date : 2023-11-08 Luuk V. Haring, Joy T. Hall, Anton Janssen, J. Marleen Johannes, Arnoud P. Verhoeff, Joanne K. Ujcic-Voortman
Informed consent procedures for large population-based cohort studies should be comprehensive and easy-to-use. This is particularly challenging when participants from different socio-economic groups and multicultural ethnic backgrounds are involved. Recently, more and more studies have tried to use multimedia in informed consent procedures. We describe the development and testing of a digital informed
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Childhood vaccine refusal and what to do about it: a systematic review of the ethical literature BMC Med. Ethics (IF 2.7) Pub Date : 2023-11-08 Kerrie Wiley, Maria Christou-Ergos, Chris Degeling, Rosalind McDougall, Penelope Robinson, Katie Attwell, Catherine Helps, Shevaun Drislane, Stacy M Carter
Parental refusal of routine childhood vaccination remains an ethically contested area. This systematic review sought to explore and characterise the normative arguments made about parental refusal of routine vaccination, with the aim of providing researchers, practitioners, and policymakers with a synthesis of current normative literature. Nine databases covering health and ethics research were searched
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Practice of defensive medicine among surgeons in Ethiopia: cross-sectional study BMC Med. Ethics (IF 2.7) Pub Date : 2023-11-08 Eskinder Amare Assefa, Yonas Ademe Teferi, Birhanu Nega Alemu, Abraham Genetu
Defensive medicine is physicians’ deviation from standard medical care which is primarily intended either to reduce or avoid medico legal litigation. Although the Federal Ethics Committee review in Ethiopia has shown that applications for medical/surgical error investigation claims are increasing at an alarming rate, there is no study to date done to estimate the degree of defensive practice done by
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Development and validation of a tool to assess researchers’ knowledge of human subjects’ rights and their attitudes toward research ethics education in Saudi Arabia BMC Med. Ethics (IF 2.7) Pub Date : 2023-11-02 May M. Al-Madaney, Margrit Fässler
Researchers must adhere to ethical and scientific standards in their research involving human subjects; therefore, their knowledge of human subjects’ rights is essential. A tool to measure the extent of this knowledge is necessary to ensure that studies with participants are conducted ethically and to enhance research integrity. Currently, no validated instrument is available for such an assessment
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Mapping trust relationships in organ donation and transplantation: a conceptual model BMC Med. Ethics (IF 2.7) Pub Date : 2023-11-01 María Victoria Martínez-López, Leah McLaughlin, Alberto Molina-Pérez, Krzysztof Pabisiak, Nadia Primc, Gurch Randhawa, David Rodríguez-Arias, Jorge Suárez, Sabine Wöhlke, Janet Delgado
The organ donation and transplantation (ODT) system heavily relies on the willingness of individuals to donate their organs. While it is widely believed that public trust plays a crucial role in shaping donation rates, the empirical support for this assumption remains limited. In order to bridge this knowledge gap, this article takes a foundational approach by elucidating the concept of trust within
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Preparing ethical review systems for emergencies: next steps BMC Med. Ethics (IF 2.7) Pub Date : 2023-10-27 Katharine Wright, Nic Aagaard, Amr Yusuf Ali, Caesar Atuire, Michael Campbell, Katherine Littler, Ahmed Mandil, Roli Mathur, Joseph Okeibunor, Andreas Reis, Maria Alexandra Ribeiro, Carla Saenz, Mamello Sekhoacha, Ehsan Shamsi Gooshki, Jerome Amir Singh, Ross Upshur
Ethical review systems need to build on their experiences of COVID-19 research to enhance their preparedness for future pandemics. Recommendations from representatives from over twenty countries include: improving relationships across the research ecosystem; demonstrating willingness to reform and adapt systems and processes; and making the case robustly for better resourcing.
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Analysis of ethical considerations of COVID‑19 vaccination: lessons for future BMC Med. Ethics (IF 2.7) Pub Date : 2023-10-27 Roya Malekzadeh, Ghasem Abedi, Arash Ziapour, Murat Yıldırım, Afshin Amirkhanlou
Since the beginning of the COVID-19 pandemic, different countries sought to manufacture and supply effective vaccines to control the disease and prevent and protect public health in society. The implementation of vaccination has created many ethical dilemmas for humans, which must be recognized and resolved. Therefore, the present study was conducted to analyze the ethical considerations in vaccination
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UK health researchers’ considerations of the environmental impacts of their data-intensive practices and its relevance to health inequities BMC Med. Ethics (IF 2.7) Pub Date : 2023-10-27 Gabrielle Samuel
The health sector aims to improve health outcomes and access to healthcare. At the same time, the sector relies on unsustainable environmental practices that are increasingly recognised to be catastrophic threats to human health and health inequities. As such, a moral imperative exists for the sector to address these practices. While strides are currently underway to mitigate the environmental impacts
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The muslim patient and medical treatments based on porcine ingredients BMC Med. Ethics (IF 2.7) Pub Date : 2023-10-27 Ya’arit Bokek-Cohen, Limor D. Gonen, Mahdi Tarabeih
Porcine-derived products serve as an effective solution for a wide range of human ailments; however, there may be objections to their use due to Islamic religious prohibitions on consuming products derived from pigs. In order to enhance the cultural competence of medical practitioners who treat Muslim individuals, which constitute about one fifth of the world population, this study aimed at evaluating
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The future of FemTech ethics & privacy – a global perspective BMC Med. Ethics (IF 2.7) Pub Date : 2023-10-27 Najd Alfawzan, Markus Christen
We discuss the concept of women’s empowerment in FemTech, considering cultural and legal differences, ethical concerns, and legal consequences. We claim that it is crucial to prioritize privacy, a fundamental right, especially in the case of changes in laws related to women’s health, such as Roe v. Wade in the US.
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Non-invasive prenatal testing (NIPT): is routinization problematic? BMC Med. Ethics (IF 2.7) Pub Date : 2023-10-26 Christoph Rehmann-Sutter, Daniëlle R. M. Timmermans, Aviad Raz
The introduction and wide application of non-invasive prenatal testing (NIPT) has triggered further evolution of routines in the practice of prenatal diagnosis. ‘Routinization’ of prenatal diagnosis however has been associated with hampered informed choice and eugenic attitudes or outcomes. It is viewed, at least in some countries, with great suspicion in both bioethics and public discourse. However
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Medical assistance in dying for people living with mental disorders: a qualitative thematic review BMC Med. Ethics (IF 2.7) Pub Date : 2023-10-24 Caroline Favron-Godbout, Eric Racine
Medical assistance in dying (MAiD) sparks debate in several countries, some of which allow or plan to allow MAiD where a mental disorder is the sole underlying medical condition (MAiD-MD). Since MAiD-MD is becoming permissible in a growing number of jurisdictions, there is a need to better understand the moral concerns related to this option. Gaining a better understanding of the moral concerns at
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Women’s experiences with non-invasive prenatal testing in Switzerland: a qualitative analysis BMC Med. Ethics (IF 2.7) Pub Date : 2023-10-23 Mirriam Tyebally Fang, Federico Germani, Giovanni Spitale, Sebastian Wäscher, Ladina Kunz, Nikola Biller-Andorno
Prenatal genetic testing, in particular non-invasive prenatal testing (NIPT), as well as screening for risks associated with pregnancy, and counseling, play pivotal roles in reproductive healthcare, offering valuable information about the health of the fetus to expectant parents. This study aims to delve into the perspectives and experiences of women considering genetic testing and screening during
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Ethical and coordinative challenges in setting up a national cohort study during the COVID-19 pandemic in Germany BMC Med. Ethics (IF 2.7) Pub Date : 2023-10-17 Katharina Tilch, Sina M. Hopff, Katharina Appel, Monika Kraus, Bettina Lorenz-Depiereux, Lisa Pilgram, Gabi Anton, Sarah Berger, Ramsia Geisler, Kirsten Haas, Thomas Illig, Dagmar Krefting, Roberto Lorbeer, Lazar Mitrov, Maximilian Muenchhoff, Matthias Nauck, Christina Pley, Jens-Peter Reese, Siegbert Rieg, Margarete Scherer, Melanie Stecher, Christoph Stellbrink, Heike Valentin, Christof Winter, Martin
With the outbreak of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), global researchers were confronted with major challenges. The German National Pandemic Cohort Network (NAPKON) was launched in fall 2020 to effectively leverage resources and bundle research activities in the fight against the coronavirus disease 2019 (COVID-19) pandemic. We analyzed the setup phase of NAPKON as an example
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Patients accept therapy using embryonic stem cells for Parkinson’s disease: a discrete choice experiment BMC Med. Ethics (IF 2.7) Pub Date : 2023-10-12 Karin Schölin Bywall, Jennifer Drevin, Catharina Groothuis-Oudshoorn, Jorien Veldwijk, Dag Nyholm, Hakan Widner, Trinette van Vliet, Elena Jiltsova, Mats Hansson, Jennifer Viberg Johansson
New disease-modifying ways to treat Parkinson’s disease (PD) may soon become a reality with intracerebral transplantation of cell products produced from human embryonic stem cells (hESCs). The aim of this study was to assess what factors influence preferences of patients with PD regarding stem-cell based therapies to treat PD in the future. Patients with PD were invited to complete a web-based discrete
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Exploring defensive medicine: examples, underlying and contextual factors, and potential strategies - a qualitative study BMC Med. Ethics (IF 2.7) Pub Date : 2023-10-10 Mohammad Hossein Eftekhari, Alireza Parsapoor, Ayat Ahmadi, Neda Yavari, Bagher Larijani, Ehsan Shamsi Gooshki
Medical errors, unsatisfactory outcomes, or treatment complications often prompt patient complaints about healthcare providers. In response, physicians may adopt defensive practices to mitigate objections, avoid complaints, and navigate lengthy trial processes or other potential threats. However, such defensive medicine (DM) practices can carry risks, including potential harm to patients and the imposition
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Public attitudes towards genomic data sharing: results from a provincial online survey in Canada BMC Med. Ethics (IF 2.7) Pub Date : 2023-10-07 Holly Etchegary, Georgia Darmonkov, Charlene Simmonds, Daryl Pullman, Proton Rahman
While genomic data sharing can facilitate important health research and discovery benefits, these must be balanced against potential privacy risks and harms to individuals. Understanding public attitudes and perspectives on data sharing is important given these potential risks and to inform genomic research and policy that aligns with public preferences and needs. A cross sectional online survey measured