Clinical decision-making in old-age care is a complex and ethically sensitive process. Despite its importance, research addressing the challenges of clinical decision-making in old-age care within this cultural context is limited. This study aimed to explore the challenges and ethical concerns in clinical decision-making in old-age care in Ethiopia. This qualitative study employed an inductive approach with data collected via semi-structured interviews with 20 older patients and 26 health professionals recruited from healthcare facilities in Ethiopia. Data were analysed using reflexive (...) thematic analysis. Our analysis identified three key themes. First, participants highlighted perceptions that older patients’ religious beliefs interfere with the clinical decisions both older patients and health professionals make. Second, older patients often receive limited information from health professionals about their diagnosis and treatment. Third, families of older patients appear to strongly influence clinical decisions made by older patients or health professionals. This research enhances the understanding of clinical decision-making in old-age care within Ethiopia, a context where such research is scarce. As a result, this study contributes towards advancing the deliberation of ethical dilemmas that health professionals who work with older patients in Ethiopia might face. A key implication of the study is that there is a need for more ethics and cultural competence training for health professionals working with older patients in Ethiopia. (shrink)

Precision medicine is an emerging approach to treatment and disease prevention that relies on linkages between very large datasets of health information that is shared amongst researchers and health professionals. While studies suggest broad support for sharing precision medicine data with researchers at publicly funded institutions, there is reluctance to share health information with private industry for research and development. As the private sector is likely to play an important role in generating public benefits from precision medicine initiatives, it is (...) important to understand what the concerns are and how they might be mitigated. This study reports outcomes of a deliberative method of citizen engagement in Singapore that asked whether sharing precision medicine data with private industry would be permissible, and if so, under what circumstances. Findings from this citizens’ jury suggest sharing with industry would be permissible under certain conditions that are set out in nine recommendations. Implications of the recommendations and their underlying assumptions for policy decision makers are discussed. This study aligns with prior international studies which found conditional acceptance for data sharing with private industry, a public benefit requirement, specific reluctance to share with insurance companies and an emphasis on accountability and transparency to demonstrate trustworthiness. However, our results differ from prior studies in that opt-in consent did not dominate the deliberations as jurors were able to set it aside as an assumed prerequisite for participation in a precision medicine programme. (shrink)

Background The principle of respect for autonomy (PRA) is a central tenet of bioethics. In the quest for a global bioethics, it is pertinent to ask whether this principle can be applied as it is to cultures and societies that are devoid of the Western sociopolitical historical pressures that led to its emergence. Relational autonomists have argued for a more inclusive approach to patient autonomy which takes into account factors such as interdependency and social relations. However, at the outset of (...) any relational approach, it is necessary to identify underlying factors that influence patient autonomy in non-Western cultures. Objective To conduct a review of the literature to uncover the mechanisms through which social, cultural, and religious factors influence and impact the application of the PRA in healthcare decision-making in non-Western cultures and societies. Methods We conducted a systematic review through a comprehensive search of three major electronic databases of biomedical sciences. Returned citations were imported to Covidence, full texts were assessed for eligibility, included articles were thoroughly reviewed and data was synthesized. PRISMA guidelines were followed. Results Our search retrieved 590 non-duplicate results, 50 of which were included after screening and full-text eligibility checks. The included studies were predominantly qualitative in nature, with few quantitative, mixed-methods, and review studies included. Our synthesis of data identified nine key factors that influenced patients’ autonomous decision-making through cultural, social, religious, or intersectional pathways. Conclusion Two main conclusions emerge from this review. Firstly, there is a notable dearth of bioethical research examining the influence of diverse factors on patients’ inclination towards different conceptions of autonomy. Secondly, the analysis of prevalent collectivist cultures and deference of autonomy adds value to the solution-oriented relational autonomy debate. This raises questions regarding how decision-making can be truly autonomous in the presence of such large-scale factors, warranting further attention. (shrink)

Ethical guidance in research is underpinned by the need to show respect for study participants by upholding autonomy in participant decision-making, and confidentiality and protection of individual rights, privacy and interests, yet decision-making could also be influenced by the participant’s sociocultural and belief systems. This calls for a more Africanised approach to research ethics where these values and beliefs are upheld. While national and international ethics guidelines do exist, there is little evidence that such a paradigm shift in research ethics (...) is adequately interrogated in the teaching and learning curricula in higher education, where research skills are developed and nurtured. Critical reflection is used to highlight opportunities to stimulate learning and debates underpinned by humanised pedagogy in higher education. (shrink)

Africa has a colonial past that renders it a linguistic melting pot, where language is not only important for communication but is inextricably related to cultural identity. In Africa, there are over 2000 languages that are still being used and spoken. Language diversity coupled with cultural diversity may affect the process of obtaining informed consent in data-intensive research. We explore some of the challenges and opportunities of multilingualism in handling informed consent in the context of data-intensive research. In multilingual contexts, (...) as in most African countries, language is exceptionally central, and translation has potential cultural, social, historical, functional and scientific importance. However, it is recognised that terminological and translation activities may not always be cost-effective or feasible. We consider alternative mechanisms of harmonisation of data-related terminology and concepts in multilingual contexts, such as iconography, graphic elicitation and other multimedia formats of information sharing. The inclusion of visual or multimedia explanations in informed consent forms can improve comprehension, enhance information transfer and learning, reduce potential vulnerabilities associated with low literacy levels or the inability to interpret technical language associated with data-intensive research, build trust with participants and their communities, and promote autonomy of potential participants. We recognise that the inclusion of visual or multimedia content to facilitate information transfer is only one component of the informed consent process for data-intensive research. Research ethics committees (RECs) should be mindful of other key considerations and challenges of informed consent for data-intensive research in sub-Saharan Africa (SSA), and to explore whether these alternative forms of consent are ethical and effective in multilingual contexts. (shrink)