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Updated: Jul 30, 2025

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Return of Individual Research Results: Participant Perspectives in a Longitudinal Community-Based Sample
Jyoti Angal1,2, Barbara Brockevelt3, S Jean Caraway4
1Avera Research Institute, Sioux Falls, SD, USA.
Abstract:
The last decade has witnessed growing calls for the return of individual research results. Prior work in genetic studies has shown that individual, contextual, and cultural factors influence participants' preferences for individual research results. There is a gap in knowledge about participants' views about other types of results, specifically those lacking clinical significance. This study investigates the perspectives of 1587 mothers enrolled in the Northern Plains Environmental Influences on Child Health Outcomes (ECHO) Program. Participants were presented with hypothetical scenarios to determine their perceived value of individual research results based on result type and the ability to interpret them within a normative context. Irrespective of the result type, participants attributed higher perceived value to results that were well understood than results of unknown significance.
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