What's the Harm? Harms in Research With Adults With Intellectual Disability.
Adults with ID see being left out of research as more harmful than most study risks—so include them with proper supports.
01Research in Context
What this study did
The team asked three groups about research harms. Adults with intellectual disability, family carers, and professionals each rated 15 possible harms.
They used a simple survey. Each harm got a 1-to-5 scale from "no harm" to "severe harm." the adults with ID answered for themselves.
What they found
Adults with ID saw exclusion from research as the biggest harm. They rated most psychosocial risks, like feeling sad or worried, as mild.
Carers and professionals flipped the order. They marked psychosocial risks as moderate to severe and ranked exclusion as low harm.
How this fits with other research
van der Miesen et al. (2024) backs this up. Their audit shows 78 % of UK health studies still exclude adults with ID. The gap between what adults feel and what ethics boards do is real.
Robertson et al. (2013) foreshadowed the finding. In interviews, adults said they want in because research can improve their lives. The 2017 survey now gives numbers to that wish.
Thompson et al. (2018) shows the upside. When adults with ID joined as co-researchers, they gained skills and pride. This outcome supports the view that exclusion is a true loss.
Why it matters
When you sit on an IRB or design a study, treat exclusion as a real harm. Ask if safeguards can let adults with ID join rather than lock them out. Simple consent aids, extra time, and clear language often do the trick.
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02At a glance
03Original abstract
Scientific advances can improve the lives of adults with intellectual disability, yet concerns that research participation may impose harm impede scientific progress. What counts as harmful can be subjective and perceptions of harm may vary among stakeholders. We studied perspectives on the harmfulness of research events among adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board members. We found considerable variance. For example, adults with intellectual disability see exclusion from research as more harmful, but most psychosocial harms as less significant than others. All stakeholders agree that having someone else make the participation decision is harmful. Findings provide insights into the concept of harm and ethical research with adults with intellectual disability.
American journal on intellectual and developmental disabilities, 2017 · doi:10.1176/appi.ps.57.11.1629