Team Science in Precision Medicine Research:The Case for Inclusion of Adults With Intellectual Disability.
Adults with ID are shut out of gene and drug studies—team science with community partners can end the data gap.
01Research in Context
What this study did
Sabatello et al. (2025) wrote a position paper. They asked why adults with intellectual disability are left out of precision-medicine studies.
The authors say the fix is team science. That means researchers, clinicians, families, and adults with ID work as equal partners.
What they found
The paper does not give new numbers. It shows a gap: most gene and drug studies ignore adults with ID.
Without those data, doctors miss early signs and better treatments for this group.
How this fits with other research
Sandberg et al. (2026) give the hard numbers. Their big registry study shows adults with ID have more health diagnoses, yet cancer is found late. Maya’s call for inclusion explains why the data look that way.
Mammarella et al. (2022) zoom in on melanoma. Adults with ID get thicker, later-stage tumors. The position paper says inclusive gene banks could spot risk earlier.
Simpson et al. (2001) found overall cancer rates match the general population, but some tumors are higher. The new paper argues we need diverse DNA to learn why.
Nuebling et al. (2024) show HIV testing is almost zero for adults with ID. The same blind spot hits precision medicine, backing Maya’s equity plea.
Why it matters
If you serve adults with ID, push your clinic to join biobank or pharmacogenomic studies. Ask for easy-read consent forms and invite self-advocates to review protocols. More inclusive data mean earlier cancer screens, safer drugs, and clearer medical pictures for the people you support.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Add a question about research interest to your intake form and offer an easy-read flyer on local precision-medicine studies.
02At a glance
03Original abstract
The inclusion of adults with intellectual disability (ID) in precision medicine research has scientific, public health, and social justice justifications. Yet there is an indication that this population is excluded from general (i.e., nondisability specific) health research, including precision medicine research. Adults with ID are thus unlikely to reap the benefits emerging from such scientific endeavors-today and in the future. In this commentary, we explore key issues in research ethics, including cohort diversity, the principle of justice, and consent, and discuss their ramifications for adults with ID and precision medicine researchers. We call for endorsing team science collaboration and community engagement to promote health equity for adults with ID and disability justice in precision medicine research.
American journal on intellectual and developmental disabilities, 2025 · doi:10.1096/fj.13-246603