Research involving vulnerable populations such as those with disabilities requires strong ethical safeguards to prevent harm. However, for researchers based in Western institutions working in the Global South, ethics reviews can themselves be colonizing, creating ethical tensions in the field. This article examines the need for decolonizing ethics review in disability research through reflexive insights drawn from a study conducted in rural Northern Ghana. Based on an interpretive phenomenological fieldwork with persons with disabilities, the article explores how ethics review processes shaped by Western institutional norms can generate tensions when applied in contexts marked by different social relations, legal practices, material conditions, and understandings of personhood. It focuses on key ethical issues including consent documentation, decision-making capacity, compensation, privacy, confidentiality, and participant protection. While research ethics boards are essential for protecting participants, the article argues that rigid procedural requirements may unintentionally undermine dignity, autonomy, inclusion, and locally meaningful forms of care and protection. Using a decolonial and reflexive lens, the article shows how universalized ethics frameworks can reproduce colonial authority in knowledge production, particularly in disability research in the Global South. The article calls for a more contextual, relational, and dialogical approach to ethics review—one that preserves participant protection while recognizing the ethical significance of local realities.
As generative AI becomes embedded in academic publishing, questions of efficiency and accuracy also raise questions about the authority of scholarly evaluation. Through normative and institutional analysis and a prospective thought experiment, this article distinguishes peer review from protocol review. Peer review uses protocols to support substantive judgment by people who engage with the manuscript, own the reasons offered, and remain answerable for decisions. Protocol review makes formalized criteria, learned proxies, or machine-generated evaluations substantially sufficient for a recommendation while human endorsement becomes nominal. Actual workflows lie on a continuum, and the threshold depends on the functions delegated and the human capacity to justify and revise the central reasons. Machine-to-machine evaluation denotes a connected workflow in which AI evaluates content substantially generated by other AI systems and the assessments inform further automated evaluation or editorial recommendations. Drawing on consequentialist, epistemic, and institutional accounts, the article argues that even superior performance on defined tasks leaves questions of review authority and responsibility to be resolved. The same standards apply to human and AI-assisted review. Seven linked conditions specify legitimate hybrid review through direct engagement, ownership of reasons, confidential infrastructure, functional disclosure, separation of automated checks from substantive judgment, institutional auditability, and human review and appeal. These conditions allow validated AI assistance while preserving accountable scholarly judgment.
People with severe–profound intellectual disabilities are frequently excluded from research, partly because of legitimate concerns about consent, communication and vulnerability. This case study examines a condition imposed during review by a UK Social Care Research Ethics Committee on a study involving repeated video recording. The condition required a participant with severe–profound intellectual disabilities to be withdrawn from the whole project after a single occasion on which their behaviour could be interpreted as indicating unhappiness or distress about involvement in the research. The condition was intended to prevent unwanted continued participation. However, it also risked collapsing a context-specific expression of discomfort into permanent withdrawal and offered less flexibility than was available to participants who communicated conventionally. Drawing on the account of the review process recorded in the doctoral thesis, I argue that safeguarding can redistribute rather than eliminate risk. A proportionate response should always stop the immediate activity but should distinguish dissent from a particular session or method from withdrawal from an entire study. Recommendations are offered for researchers and ethics committees considering ongoing participation where communication is embodied, individual and context-dependent.
Large-scale household surveys in resource-constrained, high-disease-burden settings expose health needs that fall outside study protocols, raising questions about researchers’ ancillary care obligations. Drawing on empirical experiences from SEMA ReACT, a hybrid effectiveness-implementation study assessing community-based pre-referral treatment of severe malaria in children aged 6 months to 5 years in Kapolowe, Democratic Republic of Congo, we examine ethical tensions at the research-health system interface and consider their implications for research ethics and health systems practice. During surveys, field teams encountered clusters in which most sampled children tested positive for malaria. Although sampling followed a predefined, ethically approved protocol, researchers also observed nearby non-sampled children with possible illness. These encounters highlighted tensions between protocol adherence, resources and responses to unmet health needs in communities with limited access to care. We argue that current ethics guidelines provide insufficient direction, leading to inconsistent responses that shift responsibility onto frontline researchers rather than embedding it within study design, funding, and ethical review. In settings characterized by weak health systems and unmet healthcare needs, strict adherence to sampling boundaries may inadvertently reinforce inequities and undermine community trust. Observational research further blurs the distinction between participants and non-participants, as researchers become visible health actors approached for assistance by community members. Grounded in ancillary care frameworks and theories of global justice, we propose a limited but affirmative obligation for researchers to address acute, serious health conditions encountered during fieldwork, extending under defined circumstances to similarly situated non-participants. Such obligations should be prospectively addressed through explicit planning, resource allocation, referral mechanisms and ethics oversight to ensure responses are equitable, feasible, and sustainable. Embedding ancillary care considerations prospectively strengthens ethical integrity, promotes trust, and enhances the social value of global health research.
Translational researchers often occupy multiple roles that carry different ethical responsibilities, creating tensions not fully addressed by traditional research or clinical ethics frameworks. This qualitative study explored how translational researchers understand and navigate conflicts between their responsibilities as researchers and their roles as clinicians or community advocates. Semi-structured interviews were conducted with 21 participants, including clinical trialists, community-engaged researchers, data scientists, bioethicists, and regulatory officials. Interview data were analyzed thematically using a grounded theory approach to identify the types of ethical tensions researchers experience. Participants described role conflicts most frequently in the context of clinician-researcher relationships, particularly around participant welfare, therapeutic misconception, recruitment bias, equipoise, and the boundaries between research and care. Researchers occupying roles as community advocates described related tensions between maintaining scientific rigor and honoring obligations to community welfare, trust, and responsiveness. While some participants viewed research and clinical or community roles as largely compatible, others emphasized the persistent tensions requiring ongoing ethical reflection. These findings suggest that translational researchers could benefit from ethics guidance and training that extends beyond regulatory compliance, and explicitly addresses the management of conflicts arising from overlapping professional obligations.
