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Product

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

Center:

DC-Georgetown University Center for Excellence in Developmental Disabilities, UCEDD/LEND

Fiscal Year:

2026

Contact Information:

Tawara Goode
[email protected]
202-687-5387

Product Description:

Adults with intellectual disability (ID)are often denied autonomy in research settings, affecting participation and generalizability. To inform health research policy and practice, a national survey of 150 adults with ID was conducted to explore their views on autonomy and decision-making in precision medicine research (PMR). Participants expressed strong interest in participating in PMR and controlling their decisions to participate, sometimes with support.

Keyword(s):

decision-making, PMR

Product/Publication Type(s):

Peer-reviewed publications in scholarly journals Published/In Press

Target Audience:

Consumers/Families, Professionals, Policymakers, Students

Alternative Format:

Electronic (disc, CD, 508 compliant web posting)

To Obtain Copies (URL or Email):

doi: 10.1016/j.xhgg.2026.100589

COVID-19 Related Data:

N/A