Consent-as-Method: Capacity to Consent of Cognitively Disabled People and Research Ethics Review
Bibliographic record
Abstract
Informed consent is a core ethical principle informing research conduct. Yet, normative consent culture–often grounded in ableist understandings of capacity, rationality, and independence– exclude people with cognitive disabilities. The adjudication of consent capacity in research can be a source of harm, requiring researchers to enact lateral ableism against research participants and, potentially, themselves. As anthropologists conducting ethnographic research with intellectually and developmentally disabled participants in Canada and the U.S., we argue for the creation of an anti-ableist consent culture in the context of research. In exploring alternative ways of doing consent, we turn to the etymology of “feeling-with”–the collaborative, multi-sensory, and embodyminded experience of giving, getting, and living consent–as this can inform more ethical and anti-ableist notions of consent. We propose “consent-as-method” as part of a larger conversation about the methodological challenges and potentials of doing research as and with people with non-normative bodyminds. Drawing on our research and lived experiences of cognitive ableism, we theorize consent practices that consider disabled people's felt knowledges of denial of consent capacity and coercion to inform anti-ableist, relational ways of doing consent. We focus on capacity because it structures the kinds of bodyminds that are seen as capable of being consenting subjects. We build on existing scholarship that considers how critically engaging with disability as a lived experience and orientation fundamentally crips our methodological and ethical commitments. Attending to consent capacity through consent-as-method treats consent as not only a means to an end but as an anti-ableist research ethic.
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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 | 0.489 | 0.642 |
| Meta-epidemiology (narrow) | 0.001 | 0.002 |
| Meta-epidemiology (broad) | 0.003 | 0.002 |
| Bibliometrics | 0.010 | 0.010 |
| Science and technology studies | 0.008 | 0.053 |
| Scholarly communication | 0.017 | 0.021 |
| Open science | 0.006 | 0.014 |
| Research integrity | 0.018 | 0.020 |
| Insufficient payload (model declined to judge) | 0.006 | 0.002 |
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; the direct Gemma label and the distilled Codex classifier agree on what is shown here.
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".