BMC Medical Ethics is an open access journal publishing original peer-reviewed research articles in relation to medical ethics, heathcare and bioethics.

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The Globethics library contains articles of BMC International Health and Human Rights as of vol. 1(2000) to current.

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  • Perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research

    Faith Musvipwa; Ambroise Wonkam; Benjamin Berkman; Jantina de Vries (BMC, 2024-06-01)
    Abstract Background Genetic research can yield information that is unrelated to the study’s objectives but may be of clinical or personal interest to study participants. There is an emerging but controversial responsibility to return some genetic research results, however there is little evidence available about the views of genomic researchers and others on the African continent. Methods We conducted a continental survey to solicit perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research. Results A total of 110 persons participated in the survey with 51 complete and 59 incomplete surveys received. Data was summarised using descriptive analysis. Overall, our respondents believed that individual genetic research results that are clinically actionable should be returned to study participants apparently because participants have a right to know things about their health, and it might also be a means for research participation to be recognized. Nonetheless, there is a need for development of precise guidance on how to return individual genetic research findings in African genomics research. Discussion Participants should receive information that could promote a healthier lifestyle; only clinically actionable findings should be returned, and participants should receive all important information that is directly relevant to their health. Nevertheless, detailed guidelines should inform what ought to be returned. H3Africa guidelines stipulate that it is generally considered good practice for researchers to feedback general study results, but there is no consensus about whether individual genomic study results should also be fed back. The decision on what individual results to feedback, if any, is very challenging and the specific context is important to make an appropriate determination.
  • Using symbiotic empirical ethics to explore the significance of relationships to clinical ethics: findings from the Reset Ethics research project

    Caroline A. B. Redhead; Lucy Frith; Anna Chiumento; Sara Fovargue; Heather Draper (BMC, 2024-05-01)
    Abstract Background At the beginning of the coronavirus (Covid-19) pandemic, many non-Covid healthcare services were suspended. In April 2020, the Department of Health in England mandated that non-Covid services should resume, alongside the continuing pandemic response. This ‘resetting’ of healthcare services created a unique context in which it became critical to consider how ethical considerations did (and should) underpin decisions about integrating infection control measures into routine healthcare practices. We draw on data collected as part of the ‘NHS Reset Ethics’ project, which explored the everyday ethical challenges of resetting England’s NHS maternity and paediatrics services during the pandemic. Methods Healthcare professionals and members of the public participated in interviews and focus group discussions. The qualitative methods are reported in detail elsewhere. The focus of this article is our use of Frith’s symbiotic empirical ethics methodology to work from our empirical findings towards the normative suggestion that clinical ethics should explicitly attend to the importance of relationships in clinical practice. This methodology uses a five-step approach to refine and develop ethical theory based on a naturalist account of ethics that sees practice and theory as symbiotically related. Results The Reset project data showed that changed working practices caused ethical challenges for healthcare professionals, and that infection prevention and control measures represented harmful barriers to the experience of receiving and offering care. For healthcare professionals, offering care as part of a relational interaction was an ethically important dimension of healthcare delivery. Conclusions Our findings suggest that foregrounding the importance of relationships across a hospital community will better promote the ethically important multi-directional expression of caring between healthcare professionals, patients, and their families. We offer two suggestions for making progress towards such a relational approach. First, that there is a change of emphasis in clinical ethics practice to explicitly acknowledge the importance of the relationships (including with their healthcare team) within which the patient is held. Second, that organisational decision-making should take into account the moral significance afforded to caring relationships by healthcare professionals, and the role such relationships can play in the negotiation of ethical challenges.
  • Determining capacity of people with dementia to take part in research: an electronic survey study of researcher confidence, competence and training needs

    Sarah Griffiths; Victoria Shepherd; Anna Volkmer (BMC, 2024-05-01)
    Abstract Background Researchers are required to determine whether a person has capacity to consent to a research study before they are able to participate. The Mental Capacity Act and accompanying Code of Practice for England and Wales provide some guidance on this process, but researchers have identified that it can be difficult to determine capacity to consent when a person has complex cognitive or communication needs. This study aimed to understand the experiences and opinions of researchers who recruit people with dementia to research projects, to inform the future development of training resources. Methods A mixed method, cross-sectional, electronic survey was circulated via social media and research networks in England and Wales. The survey remained open for ten weeks and included open and closed questions exploring respondents’ confidence in determining capacity in the context of recruiting people with dementia to consent, their views on training and support they have experienced and their suggestions for future training and support needs. Results 60 respondents completed the survey from across England and Wales. Although 75% of respondents had experience of determining capacity to consent with people with dementia to research, only 13% rated themselves as feeling ‘very confident’ in this. Qualitative content analysis of open responses led to the generation of six themes, explaining researchers’ confidence, competence and future training needs in this area: (1) Researcher uncertainties, (2) Lack of time, (3) Balancing information complexity with accessibility, (4) Gatekeepers, (5) Existing enablers and (6) Envisioning future training. Conclusions Researchers would benefit from specific training in undertaking conversations around consent with people with dementia. People with dementia may have fluctuating capacity, and despite support from caregivers, researchers have little practical guidance on methods of determining a person’s ability to understand or appreciate the information they have provided during the consent process. Given the development of large complex trials within dementia research, there is an urgency to develop specific and practical guidance and training for researchers working with people with dementia and their families.
  • A scoping review of ethics review processes during public health emergencies in Africa

    Kingsley Orievulu; Alex Hinga; Busisiwe Nkosi; Nothando Ngwenya; Janet Seeley; Anthony Akanlu; Paulina Tindana; Sassy Molyneux; Samson Kinyanjui; Dorcas Kamuya (BMC, 2024-05-01)
    Abstract Background The COVID-19 pandemic forced governments, multilateral public health organisations and research institutions to undertake research quickly to inform their responses to the pandemic. Most COVID-19-related studies required swift approval, creating ethical and practical challenges for regulatory authorities and researchers. In this paper, we examine the landscape of ethics review processes in Africa during public health emergencies (PHEs). Methods We searched four electronic databases (Web of Science, PUBMED, MEDLINE Complete, and CINAHL) to identify articles describing ethics review processes during public health emergencies and/or pandemics. We selected and reviewed those articles that were focused on Africa. We charted the data from the retrieved articles including the authors and year of publication, title, country and disease(s) reference, broad areas of (ethical) consideration, paper type, and approach. Results Of an initial 4536 records retrieved, we screened the titles and abstracts of 1491 articles, and identified 72 articles for full review. Nine articles were selected for inclusion. Of these nine articles, five referenced West African countries including Liberia, Guinea and Sierra Leone, and experiences linked to the Ebola virus disease. Two articles focused on South Africa and Kenya, while the other two articles discussed more general experiences and pitfalls of ethics review during PHEs in Africa more broadly. We found no articles published on ethics review processes in Africa before the 2014 Ebola outbreak, and only a few before the COVID-19 outbreak. Although guidelines on protocol review and approval processes for PHEs were more frequently discussed after the 2014 Ebola outbreak, these did not focus on Africa specifically. Conclusions There is a gap in the literature about ethics review processes and preparedness within Africa during PHEs. This paper underscores the importance of these processes to inform practices that facilitate timely, context-relevant research that adequately recognises and reinforces human dignity within the quest to advance scientific knowledge about diseases. This is important to improve fast responses to PHEs, reduce mortality and morbidity, and enhance the quality of care before, during, and after pandemics.
  • Cardiac organoids do not warrant additional moral scrutiny

    Jannieke N Simons; Rieke van der Graaf; Johannes JM van Delden (BMC, 2024-05-01)
    Abstract Certain organoid subtypes are particularly sensitive. We explore whether moral intuitions about the heartbeat warrant unique moral consideration for newly advanced contracting cardiac organoids. Despite the heartbeat’s moral significance in organ procurement and abortion discussions, we argue that this significance should not translate into moral implications for cardiac organoids.
  • Respect for bioethical principles and human rights in prisons: a systematic review on the state of the art

    Massimiliano Esposito; Konrad Szocik; Emanuele Capasso; Mario Chisari; Francesco Sessa; Monica Salerno (BMC, 2024-05-01)
    Abstract Background Respect for human rights and bioethical principles in prisons is a crucial aspect of society and is proportional to the well-being of the general population. To date, these ethical principles have been lacking in prisons and prisoners are victims of abuse with strong repercussions on their physical and mental health. Methods A systematic review was performed, through a MESH of the following words (bioethics) AND (prison), (ethics) AND (prison), (bioethics) AND (jail), (ethics) AND (jail), (bioethics) AND (penitentiary), (ethics) AND (penitentiary), (prison) AND (human rights). Inclusion and exclusion criteria were defined and after PRISMA, 17 articles were included in the systematic review. Results Of the 17 articles, most were prevalence studies (n.5) or surveys (n.4), followed by cross-sectional studies (n.3), qualitative studies (n.1), retrospective (n.1) and an explanatory sequential mixed-methods study design (n.1). In most cases, the studies associated bioethics with prisoners’ access to treatment for various pathologies such as vaccinations, tuberculosis, hepatitis, HIV, it was also found that bioethics in prisons was related to the mental health of prisoners, disability, ageing, the condition of women, the risk of suicide or with the request for end-of-life by prisoners. The results showed shortcomings in the system of maintaining bioethical principles and respect for human rights. Conclusions Prisoners, in fact, find it difficult to access care, and have an increased risk of suicide and disability. Furthermore, they are often used as improper organ donors and have constrained autonomy that also compromises their willingness to have end-of-life treatments. In conclusion, prison staff (doctors, nurses, warders, managers) must undergo continuous refresher courses to ensure compliance with ethical principles and human rights in prisons.
  • Urban people’s preferences for life-sustaining treatment or artificial nutrition and hydration in advance decisions

    Yi-Ling Wu; Tsai-Wen Lin; Chun-Yi Yang; Samuel Shih-Chih Wang; Sheng-Jean Huang (BMC, 2024-05-01)
    Abstract Background The Patient Right to Autonomy Act (PRAA), implemented in Taiwan in 2019, enables the creation of advance decisions (AD) through advance care planning (ACP). This legal framework allows for the withholding and withdrawal of life-sustaining treatment (LST) or artificial nutrition and hydration (ANH) in situations like irreversible coma, vegetative state, severe dementia, or unbearable pain. This study aims to investigate preferences for LST or ANH across various clinical conditions, variations in participant preferences, and factors influencing these preferences among urban residents. Methods Employing a survey of legally structured AD documents and convenience sampling for data collection, individuals were enlisted from Taipei City Hospital, serving as the primary trial and demonstration facility for ACP in Taiwan since the commencement of the PRAA in its inaugural year. The study examined ADs and ACP consultation records, documenting gender, age, welfare entitlement, disease conditions, family caregiving experience, location of ACP consultation, participation of second-degree relatives, and the intention to participate in ACP. Results Data from 2337 participants were extracted from electronic records. There was high consistency in the willingness to refuse LST and ANH, with significant differences noted between terminal diseases and extremely severe dementia. Additionally, ANH was widely accepted as a time-limited treatment, and there was a prevalent trend of authorizing a health care agent (HCA) to make decisions on behalf of participants. Gender differences were observed, with females more inclined to decline LST and ANH, while males tended towards accepting full or time-limited treatment. Age also played a role, with younger participants more open to treatment and authorizing HCA, and older participants more prone to refusal. Conclusion Diverse preferences in LST and ANH were shaped by the public’s current understanding of different clinical states, gender, age, and cultural factors. Our study reveals nuanced end-of-life preferences, evolving ADs, and socio-demographic influences. Further research could explore evolving preferences over time and healthcare professionals’ perspectives on LST and ANH decisions for neurological patients..
  • Ethical considerations and concerns in the implementation of AI in pharmacy practice: a cross-sectional study

    Hisham E. Hasan; Deema Jaber; Omar F. Khabour; Karem H. Alzoubi (BMC, 2024-05-01)
    Abstract Background Integrating artificial intelligence (AI) into healthcare has raised significant ethical concerns. In pharmacy practice, AI offers promising advances but also poses ethical challenges. Methods A cross-sectional study was conducted in countries from the Middle East and North Africa (MENA) region on 501 pharmacy professionals. A 12-item online questionnaire assessed ethical concerns related to the adoption of AI in pharmacy practice. Demographic factors associated with ethical concerns were analyzed via SPSS v.27 software using appropriate statistical tests. Results Participants expressed concerns about patient data privacy (58.9%), cybersecurity threats (58.9%), potential job displacement (62.9%), and lack of legal regulation (67.0%). Tech-savviness and basic AI understanding were correlated with higher concern scores (p < 0.001). Ethical implications include the need for informed consent, beneficence, justice, and transparency in the use of AI. Conclusion The findings emphasize the importance of ethical guidelines, education, and patient autonomy in adopting AI. Collaboration, data privacy, and equitable access are crucial to the responsible use of AI in pharmacy practice.
  • Exploring the consent process among pregnant and breastfeeding women taking part in a maternal vaccine clinical trial in Kampala, Uganda: a qualitative study

    Agnes Ssali; Rita Namugumya; Phiona Nalubega; Mary Kyohere; Janet Seeley; Kirsty Le Doare (BMC, 2024-05-01)
    Abstract 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.
  • Who to engage in HIV vaccine trial benefit-sharing negotiations? An empirical proposition of a framework

    Godwin Pancras; Mangi Ezekiel; Erasto Mbugi; Jon F. Merz (BMC, 2024-05-01)
    Abstract 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.
  • Correction: Ethical use of artificial intelligence to prevent sudden cardiac death: an interview study of patient perspectives

    Menno T. Maris; Ayca Koçar; Dick L. Willems; Jeannette Pols; Hanno L. Tan; Georg L. Lindinger; Marieke A.R. Bak (BMC, 2024-05-01)
  • Refusal of patients: care for people without health insurance in German emergency departments

    Matthias Zimmer (BMC, 2024-05-01)
    Abstract 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.
  • The concept of intersectionality in bioethics: a systematic review

    Lisa Brünig; Hannes Kahrass; Sabine Salloch (BMC, 2024-05-01)
    Abstract Background Intersectionality is a concept that originated in Black feminist movements in the US-American context of the 1970s and 1980s, particularly in the work of feminist scholar and lawyer Kimberlé W. Crenshaw. Intersectional approaches aim to highlight the interconnectedness of gender and sexuality with other social categories, such as race, class, age, and ability to look at how individuals are discriminated against and privileged in institutions and societal power structures. Intersectionality is a “traveling concept”, which also made its way into bioethical research. Methods We conducted a systematic review to answer the question of where and how the concept of intersectionality is applied in bioethical research. The PubMed and Web of Science databases were systematically searched and 192 articles addressing bioethical topics and intersectionality were finally included. Results The qualitative analysis resulted in a category system with five main categories: (1) application purpose and function, (2) social dimensions, (3) levels, (4) health-care disciplines and academic fields, and (5) challenges, limitations, and critique. The variety of academic fields and health-care disciplines working with the concept ranges from psychology, through gynaecology to palliative care and deaf studies. Important functions that the concept of intersectionality fulfils in bioethical research are making inequities visible, creating better health data collections and embracing self-reflection. Intersectionality is also a critical praxis and fits neatly into the overarching goal of bioethics to work toward social justice in health care. Intersectionality aims at making research results relevant for respective communities and patients, and informs the development of policies. Conclusions This systematic review is, to the best of our knowledge, the first one to provide a full overview of the reference to intersectionality in bioethical scholarship. It creates a basis for future research that applies intersectionality as a theoretical and methodical tool for analysing bioethical questions.
  • Ethical perspectives regarding Euthanasia, including in the context of adult psychiatry: a qualitative interview study among healthcare workers in Belgium

    Monica Verhofstadt; Loïc Moureau; Koen Pardon; Axel Liégeois (BMC, 2024-05-01)
    Abstract Introduction Previous research has explored euthanasia’s ethical dimensions, primarily focusing on general practice and, to a lesser extent, psychiatry, mainly from the viewpoints of physicians and nurses. However, a gap exists in understanding the comprehensive value-based perspectives of other professionals involved in both somatic and psychiatric euthanasia. This paper aims to analyze the interplay among legal, medical, and ethical factors to clarify how foundational values shape the ethical discourse surrounding euthanasia in both somatic and psychiatric contexts. It seeks to explore these dynamics among all healthcare professionals and volunteers in Belgium. Methods Semi-structured interviews were conducted with 30 Dutch-speaking healthcare workers who had encountered patients requesting euthanasia for psychiatric conditions, in Belgium, from August 2019 to August 2020. Qualitative thematic analysis was applied to the interview transcripts. Findings Participants identified three pivotal values and virtues: religious values, professional values, and fundamental medical values encompassing autonomy, beneficence, and non-maleficence, linked to compassion, quality care, and justice. These values interwove across four tiers: the patient, the patient’s inner circle, the medical realm, and society at large. Irrespective of their euthanasia stance, participants generally displayed a blend of ethical values across these tiers. Their euthanasia perspective was primarily shaped by value interpretation, significance allocation to key components, and tier weighting. Explicit mention of varying ethical values, potentially indicating distinct stances in favor of or against euthanasia, was infrequent. Conclusion The study underscores ethical discourse’s central role in navigating euthanasia’s intricate landscape. Fostering inclusive dialogue, bridging diverse values, supports informed decision-making, nurturing justice, and empathy. Tailored end-of-life healthcare in psychiatry is essential, acknowledging all involved actors’ needs. The study calls for interdisciplinary research to comprehensively grasp euthanasia’s multifaceted dimensions, and guiding policy evolution. While contextualized in Belgium, the implications extend to the broader euthanasia discourse, suggesting avenues for further inquiry and cross-cultural exploration.
  • How prehospital emergency personnel manage ethical challenges: the importance of confidence, trust, and safety

    Henriette Bruun; Louise Milling; Daniel Wittrock; Søren Mikkelsen; Lotte Huniche (BMC, 2024-05-01)
    Abstract Background Ethical challenges constitute an inseparable part of daily decision-making processes in all areas of healthcare. Ethical challenges are associated with moral distress that can lead to burnout. Clinical ethics support has proven useful to address and manage such challenges. This paper explores how prehospital emergency personnel manage ethical challenges. The study is part of a larger action research project to develop and test an approach to clinical ethics support that is sensitive to the context of emergency medicine. Methods We explored ethical challenges and management strategies in three focus groups, with 15 participants in total, each attended by emergency medical technicians, paramedics, and prehospital anaesthesiologists. Focus groups were audio-recorded and transcribed verbatim. The approach to data analysis was systematic text condensation approach. Results We stratified the management of ethical challenges into actions before, during, and after incidents. Before incidents, participants stressed the importance of mutual understandings, shared worldviews, and a supportive approach to managing emotions. During an incident, the participants employed moral perception, moral judgments, and moral actions. After an incident, the participants described sharing ethical challenges only to a limited extent as sharing was emotionally challenging, and not actively supported by workplace culture, or organisational procedures. The participants primarily managed ethical challenges informally, often using humour to cope. Conclusion Our analysis supports and clarifies that confidence, trust, and safety in relation to colleagues, management, and the wider organisation are essential for prehospital emergency personnel to share ethical challenges and preventing moral distress turning into burnout.
  • Navigating the ethical landscape of artificial intelligence in radiography: a cross-sectional study of radiographers’ perspectives

    Faten Mane Aldhafeeri (BMC, 2024-05-01)
    Abstract 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.
  • A comparative ethical analysis of the Egyptian clinical research law

    Sylvia Martin; Mirko Ancillotti; Santa Slokenberga; Amal Matar (BMC, 2024-04-01)
    Abstract Background 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. Methods 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. Results 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. Conclusion 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.
  • Ethics support for ethics support: the development of the Confidentiality Compass for dealing with moral challenges concerning (breaching) confidentiality in moral case deliberation

    Wieke Ligtenberg; Margreet Stolper; Bert Molewijk (BMC, 2024-05-01)
    Abstract Background 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. Method 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. Results 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. Conclusions 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.
  • Facing a request for assisted death - views of Finnish physicians, a mixed method study

    Reetta P. Piili; Minna Hökkä; Jukka Vänskä; Elina Tolvanen; Pekka Louhiala; Juho T. Lehto (BMC, 2024-05-01)
    Abstract Background 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. Methods 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. Results 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. Conclusions 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.
  • A qualitative interview study to determine barriers and facilitators of implementing automated decision support tools for genomic data access

    Vasiliki Rahimzadeh; Jinyoung Baek; Jonathan Lawson; Edward S. Dove (BMC, 2024-05-01)
    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.

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