What's the Harm? Harms in Research With Adults With Intellectual Disability.
Katherine E McDonald, Nicole E Conroy, Robert S Olick and 1 others
PMID 28095059WHAT IT FOUND
Adults with intellectual disability judged most research risks as less harmful than family, service providers, researchers, or review board members did, yet they were more interested in taking part than those groups expected.
Key findings
01Across 5 stakeholder groups, all groups agreed that the events counted as harms, except researchers reporting information to the authorities.
02Adults with intellectual disability rated 8 of the 11 psychosocial research harms as less harmful than all other stakeholder groups did.
03Adults with intellectual disability reported greater interest in participating in research than all other groups predicted they would, except when someone else made the participation decision.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The study measured perceived harmfulness of hypothetical events, not actual harms experienced in research. Participants judged events without full context, so views may change with the real study design, topic, and relationship. Some respondents were removed before analysis, so the final analysed sample was smaller than the number recruited. The sample was heavily female and mostly White, and it focused on self-report research with adults likely able to participate, so it may not represent adults with severe intellectual disability or all stakeholder groups. Some statistically significant group differences may not be practically meaningful.
Declared interests
The study was supported by NIH extramural research funding. The supplied text does not report conflicts of interest.
The easy way to misread this
Do not conclude that adults with intellectual disability do not experience these harms. The study measured perceived harmfulness of hypothetical research events, not actual harm, and adults often judged events as less harmful than other groups did.