ArticleAmerican journal on intellectual and developmental disabilities2017
What's the Harm? Harms in Research With Adults With Intellectual Disability.
Article in American journal on intellectual and developmental disabilities, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
19 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Barriers and Facilitators to Participation in Psychosocial Research for Adults With Intellectual Disabilities: A Systematic Review.Journal of applied research in intellectual disabilities : JARID · 2026Pooled it
- Risks and Safeguards in Social-Behavioural Research With Adults With Developmental Disabilities: A Qualitative Systematic Review.Journal of applied research in intellectual disabilities : JARID · 2025Pooled it
- Responsible inclusion: A systematic review of consent to social-behavioral research with adults with intellectual disability in the US.Disability and health journal · 2024Pooled it
- From Methodological Challenges to Recommendations for Future Practice: Lessons From an Ethnographic Study With People With Intellectual Disabilities.Journal of applied research in intellectual disabilities : JARID · 2026Article
- Using Non-Standard Research Methods to Explore the Perspectives of People With Intellectual Disabilities on Sensitive Topics: A Discussion of the Research Paradigm, Data Collection Methods and Data Analysis.Journal of applied research in intellectual disabilities : JARID · 2026Article
- "It is important to me to know where the information is going": Views of adults with intellectual disability on data sharing in precision medicine research.Genetics in medicine open · 2026Article
- A Call for Inclusion: Children With Intellectual Disabilities in Trauma Treatment Research.Journal of intellectual disability research : JIDR · 2025Article
- Inclusion of Individuals with Autism and Co-Occurring Intellectual Disability or Language Impairment as Research Participants.Journal of autism and developmental disorders · 2025Article
- A Scoping Review of the Ways Gatekeepers May Hinder or Promote Opportunities for People With Intellectual and/or Developmental Disabilities to Learn About Research Participation.Journal of intellectual disability research : JIDR · 2025Article
- Beyond Individual Responsibility: Group Harms in Genomic (Data-Centric) Research Ethics Require Structural, Justice-Oriented Solutions.The American journal of bioethics : AJOB · 2025Article
- Opening the door to university health research: recommendations for increasing accessibility for individuals with intellectual disability.International journal for equity in health · 2022Review
- Facilitating the inclusion of adults with intellectual disability as direct respondents in research: Strategies for fostering trust, respect, accessibility and engagement.Journal of applied research in intellectual disabilities : JARID · 2022Article
- Health and Access to Health Services for People with Disability in Australia: Data and Data Gaps.International journal of environmental research and public health · 2021Review
- A survey study of the attitudes and experiences of adults with intellectual disability regarding participation in research.Journal of intellectual disability research : JIDR · 2021Article
- Negative association of perceived risk and willingness to participate in innovative psychiatric research protocols.Journal of psychiatric research · 2020Article
- The Alzheimer's Biomarker Consortium-Down Syndrome: Rationale and methodology.Alzheimer's & dementia (Amsterdam, Netherlands) · 2020Review
- A quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?Disability and health journal · 2018Article
- Is It Worth It? Benefits in Research With Adults With Intellectual Disability.Intellectual and developmental disabilities · 2016Article
- Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability.Journal of empirical research on human research ethics : JERHRE · 2016Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
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.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.