Evidence map›Paper›PMID 41808408›Full record

ArticleHGG advances2026

"I make my own decisions": Views on precision medicine research participation decisions from adults with intellectual disability.

Katherine E McDonald, Eulena Banzer, Mark Cooley, Rijul Singhal, Tawara D Goode, Krzysztof Kiryluk, Maya Sabatello, Project ENGAGE Consortium

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in HGG advances, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Katherine E McDonaldPublic Health, Syracuse University, Syracuse, NY, USA. Electronic address: kemcdona@syr.edu.
Eulena BanzerPublic Health, Syracuse University, Syracuse, NY, USA.
Mark CooleyPublic Health, Syracuse University, Syracuse, NY, USA.
Rijul SinghalCenter for Precision Medicine and Genomics, Department of Medicine, Columbia University Irving Medical Center, New York, NY, USA.
Tawara D GoodeNational Center for Cultural Competence, Center for Excellence in Developmental Disabilities, Thrive Center for Children, Families, and Communities, Pediatrics, Georgetown University, Washington, DC, USA.
Krzysztof KirylukNephrology, Medicine, Columbia University Irving Medical Center, New York, NY, USA.
Maya SabatelloCenter for Precision Medicine and Genomics, Department of Medicine, Columbia University Irving Medical Center, New York, NY, USA; Division of Ethics, Department of Medical Humanities and Ethics, Columbia University Irving Medical Center, New York, NY, USA. Electronic address: ms4075@cumc.columbia.edu.
Project ENGAGE Consortium

Funding

Including Adults with Intellectual Disability in Precision Medicine Research - Project ENGAGER01HD108701 · NICHD · SYRACUSE UNIVERSITY · PI Katherine Elizabeth McDonald, Maya Sabatello · 2022 to 2026
$3.3M
NICHD NIH HHS R01 HD108701
6 · The paper itself

Abstract

Autonomy is a leading indicator of well-being and a cornerstone principal of research ethics. Yet adults with intellectual disability are routinely denied autonomy in research settings, affecting participation and generalizability. To inform health research policy and practice, we conducted a national survey of 150 adults with intellectual disability to explore their views on autonomy and decision-making in precision medicine research (PMR), a leading area of health research. Participants expressed strong interest in participating in PMR and controlling their participation decisions, sometimes with support. Findings highlight the need for policies and practices that honor these interests and facilitate autonomy. Over time, such efforts can improve health outcomes for this underserved population.

Indexed as

Decision MakingIntellectual DisabilityPatient ParticipationPrecision MedicineAdultAgedFemaleHumansMaleMiddle AgedPersonal AutonomySurveys and Questionnairesautonomyconsent to researchdecision-makingethical implicationsintellectual disabilitylegal implicationsprecision medicine researchresearch ethicsresearch policyresponsible inclusionsocial implications

Identifiers

PMID41808408
PMCPMC13091285

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

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.