Abilities of adults with mild, moderate, or no mental retardation to understand hypothetical treatments was investigated using the Assessment of Consent Capacity-Treatment developed for this study based on Appelbaum and Roth's psycholegal consent standards. Performance in all groups decreased with increasing psycholegal complexity of consent decision-making. Most adults with mild and no mental retardation and almost half of adults with moderate mental retardation were able to make and justify treatment choices and fully or partially understand treatment information. Most adults without mental retardation, 50% with mild, and 18% with moderate mental retardation were able to partially appreciate relevance of treatment choice to patient's situation and weigh treatment risks against benefit. Implications of findings for patient rights are discussed.
While adults with mental retardation as a group showed consent deficits, many attained consent capacity scores comparable to those of comparison subjects. Investigators should consider individual differences and a consent format suited to deficits in language, memory, and attention before restricting consent opportunities for persons with mental retardation.
Data were collected from three samples using the Implicit Models of Illness Questionnaire (IMIQ) to assess illness representations as described in the self-regulation model of common sense illness representations. A factor structure was identified which displayed some similarities to the common sense model. This structure was used to examine illness representations of students and patients concerning three illnesses-rheumatoid arthritis (RA), multiple sclerosis (MS), and human immunodeficiency virus (HIV). Representations differed across illnesses and respondent status (patient vs. student). Students rated individuals as having more personal responsibility for RA or MS than did patients; moreover, the difference between patient/student ratings was greater with respect to MS than it was for RA. Patients were more aware of the variable nature of RA and MS symptoms than were students. This study demonstrates the value of the IMIQ as a tool for assessing illness cognitions and suggests that illness representations differ as a function of personal experience and personal relevance.
Summary
Citizen science has been motivated by several perspectives, including increased efficiency in data collection and distributed analysis, democratizing knowledge production, making science more responsive to community needs, and improving the representation of marginalized populations in public data. Despite the potential of citizen science to achieve social justice agendas through a data-intensive and data-driven participatory scientific enquiry, scholarship in critical data studies offers several problematizations of data-based practices, highlighting risks of exclusion and inequality. To understand the extent to which citizen science supports and challenges forms of injustice, this study used a “data justice” analytical framework to critically explore the assemblages of citizen science. We examined four citizen science cases with different levels of citizen engagement, intended outcomes, and data systems. The analysis suggests instances of injustice occurring throughout the data processes of the citizen science cases across the dimensions of procedural, instrumental, rights-based, structural, and distributive data justice.
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