Abstract

BackgroundIdentifying biomarkers for autism can improve outcomes for those affected by autism. Engaging the diverse stakeholders in the research process using community-based participatory research (CBPR) can accelerate biomarker discovery into clinical applications. However, there are limited examples of stakeholder involvement in autism research, possibly due to conceptual and practical concerns. We evaluate the applicability of CBPR principles to biomarker discovery in autism and critically review empirical studies adopting these principles.MethodsUsing a scoping review methodology, we identified and evaluated seven studies using CBPR principles in biomarker discovery.Results and conclusionsThe limited number of studies in biomarker discovery adopting CBPR principles coupled with their methodological limitations suggests that such applications are feasible but challenging. These studies illustrate three CBPR themes: community assessment, setting global priorities, and collaboration in research design. We propose that further research using participatory principles would be useful in accelerating the pace of discovery and the development of clinically meaningful biomarkers. For this goal to be successful we advocate for increased attention to previously identified conceptual and methodological challenges to participatory approaches in health research, including improving scientific rigor and developing long-term partnerships among stakeholders.

Highlights

  • Identifying biomarkers for autism can improve outcomes for those affected by autism

  • Among the potential uses of biomarkers are the following: biomarkers for susceptibility indicate a predisposition for a condition such as the presence of a genetic variant associated with autism [4]

  • Considering the dearth of community-based participatory research (CBPR) in the field of biomarker discovery in general, and in the field of autism biomarkers in particular, we considered what empirical work has previously focused on community assessments

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Summary

Introduction

Engaging the diverse stakeholders in the research process using community-based participatory research (CBPR) can accelerate biomarker discovery into clinical applications. We evaluate the applicability of CBPR principles to biomarker discovery in autism and critically review empirical studies adopting these principles. The search for biomarkers associated with autism spectrum disorder (ASD) is currently underway [1,2,3]. Among the potential uses of biomarkers are the following: biomarkers for susceptibility indicate a predisposition for a condition such as the presence of a genetic variant associated with autism [4]. Presymptomatic biomarkers can identify an individual developing the condition before overt behavioural symptoms are noticeable. Brain imaging techniques such as electroencaphalography are being researched to help distinguish infants at higher risk for autism before behavioural symptoms manifest [5]. Biomarkers can be used as a diagnostic tool: in autism, chromosomal microarray analysis has been recommended

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