Morality as experienced: A scoping review of moral matters encountered by adults living with rare diseases
Bibliographic record
Abstract
Most rare diseases are poorly understood, affected individuals struggle tobe timely diagnosed and to access tailored, appropriate, and affordablecare. Following pragmatist theory, individuals living with rare diseasesmay experience these obstacles as morally problematic situations, wherethey struggle with actualizing their cherished values amid their lifecircumstances. These embedded and contextualized lived episodes aredistinct from moral challenges and moral issues, which are more abstract,decontextualized, and speculative moral matters. We sought to uncoverthe moral matters of adults living with rare diseases in the qualitativeliterature while elucidating the moral dimensions of morally problematicsituations. Moral matters were extracted from 25 qualitative studies andsubjected to thematic and interpretive analyses. The uncovered moralissues addressed abstract considerations relating to accessibility, limitedknowledge, and unpredictability of illness manifestations. Moralchallenges and morally problematic situations spanned across the fourphases of the medical trajectory: the diagnostic odyssey, the diagnosis,clinical care and treatment, and medical follow-up. Moral challengesnamely pertained to poor communication of diagnoses, lack of shareddecision-making, and lack of holistic support. Morally problematicsituations featured moral dimensions, namely (1) internal tensions (e.g.,being misunderstood), (2) constraints to agency (e.g., powerlessness anddisempowerment), in addition to (3) empowerment and selfadvocacystrategies (e.g., being assertive and demanding), notably in episodeswhere support from clinicians lacked. This study highlights the usefulnessof distinguishing these three types of moral matters in ethical analysis. Italso shows how moral dimensions of morally problematic situations carryexistential importance for affected individuals.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
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 | 0.019 | 0.106 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.003 | 0.003 |
| Bibliometrics | 0.016 | 0.016 |
| Science and technology studies | 0.002 | 0.003 |
| Scholarly communication | 0.006 | 0.007 |
| Open science | 0.002 | 0.004 |
| Research integrity | 0.003 | 0.003 |
| Insufficient payload (model declined to judge) | 0.003 | 0.000 |
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".