Presuming Competence in Clinical and Educational Evidence
Abstract
People with significant communication differences and impaired or emerging decisional capacity are systematically underrepresented in the evidence that governs their lives. A child with autism who does not speak, an adult with moderate dementia, a person with intellectual disability: each is routinely excluded from clinical trials on capacity grounds and routinely represented in educational research through adult proxies rather than through their own account. The exclusion is usually framed as protective. This conceptual paper argues that it is better understood as a methodological failure with ethical consequences, and that the two fields most responsible for it, clinical research and special education, have each developed partial remedy that the other has never adopted. The paper proposes presumed competence as a methodological commitment rather than only a moral posture, meaning a default assumption that the person has a perspective worth eliciting, combined with an obligation to adapt method until elicitation succeeds or is demonstrably impossible. Six domains are developed: the structure of the shared exclusion problem, presumed competence as method, consent and assent as continuous processes, partner- dependent expression and the validity of the record, proxy report and the measurement of outcomes that matter, and participatory design as a redistribution of research authority. Each domain identifies what clinical research has built that special education lacks, and what special education has built that clinical research lacks. The paper concludes with implications for protocol design, ethical review, measurement selection, and workforce preparation, and specifies testable propositions.
Keywords
competenceconsentassentaugmentativealternative communicationproxyparticipatoryintellectualdisabilitydementia
References
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