Moral Entanglement and the Ethics of Closing Humanitarian Medical Aid Projects
Bibliographic record
Abstract
Study/Objective: Focused on first-person accounts of clinical trials conducted during the West Africa Ebola outbreak, this study unpacks challenges and strategies for the ethical conduct of research during public health emergencies, adding evidence to existing recommendations for the ethical conduct of research in public health emergencies.Background: Research conducted during the 2014-15, West Africa Ebola outbreak presented a number of documented, ethical and practical challenges.Alongside the recruitment and consenting of participants amongst patients subject to isolation and quarantine, research involved the testing of unproven agents with no known alternative.Research occurred in the context of widespread fear, distrust of hospitals, foreigners, vaccines, and/or local authorities.It involved a little, understood Level 4 Pathogen.The Ebola research context presented the coexistence of all these challenges in one research context, and the possibilitydue to the number and variety of studies carried out in three countriesto compare experiences and innovations to the challenges of upholding ethical standards during an emergency of this scale.Methods: Data was gathered through Skype and in-person semi-structured interviews (N = 110) with stakeholders directly involved in research at trial sites in Guinea, Sierra Leone, and Liberia (as survivors, proxy decision-makers local and international research ethics board members members, research and Ebola Treatment/Management Center staff).Results: Different trials and trial contexts presented some similar, but also unique ethical challenges.Examined in depth are two case studies: one showing gaps in guidelines and resources available to support the ethical conduct of research, the other illustrating the importance of creative, context-tailored responses to exceptionally challenging clinical research settings.Conclusion: This study builds on a growing body of knowledge directly engaging ethical and practical experiences and challenges, of conducting ethical research during public health emergencies.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.108 | 0.124 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.001 |
| Science and technology studies | 0.025 | 0.115 |
| Scholarly communication | 0.022 | 0.017 |
| Open science | 0.003 | 0.018 |
| Research integrity | 0.008 | 0.011 |
| Insufficient payload (model declined to judge) | 0.004 | 0.001 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".