Goodness-of-fit ethic for informed consent to research involving adults with mental retardation and developmental disabilities.
This article reviews current theory and research on informed consent policies for adults with mental retardation within a relational ethics framework that re-conceptualizes consent vulnerability in terms of the goodness-of-fit between participant decisional capacities and the specific consent context. Conceptualizing informed consent competence as a product of the relationship between person and consent context shifts assessment of decisional capacity away from an exclusive focus on a research participant's cognitive deficiencies to (a) an examination of those aspects of the consent setting that are creating or exacerbating consent vulnerability and (b) consideration of how the setting can be modified to produce a consent process that best reflects and protects the hopes, values, concerns, and welfare of adults with developmental disabilities.
Fisher
Celia B
CB
Fordham University Center for Ethics Education, Bronx, New York 10458, USA. Fischer@Fordham.edu
D000328:Adult; D002648:Child; D003142:Communication; D002658:Developmental Disabilities / Q000523:psychology*; D006801:Humans; D007258:Informed Consent / Q000941:ethics*; D008607:Intellectual Disability / Q000523:psychology*; D007398:Interpersonal Relations; D016743:Mental Competency; D018579:Patient Selection; D012106:Research; D035862:Vulnerable Populations / Q000523:psychology