At the cross-roads of participatory research and biomarker discovery in autism: the need for empirical data

• Published in: BMC medical ethics Vol. 16; no. 1; p. 88
• Main Authors: Yusuf, Afiqah, Elsabbagh, Mayada
• Format: Journal Article
• Language: English
• Published: London BioMed Central 15.12.2015; BioMed Central Ltd
• Subjects: Autism; Autistic Disorder - diagnosis; Biological markers; Biomarkers; Biomedical Research - ethics; Community-Based Participatory Research - ethics; Community-Institutional Relations; Cooperative Behavior; Education; Empirical Research; Ethics; Health Knowledge, Attitudes, Practice; Humans; Participant observation; Philosophy; Philosophy of Medicine; Public-Private Sector Partnerships; Research Article; Theory of Medicine/Bioethics; Canada; Community-based participatory research; Biological markers; Autism
• ISSN: 1472-6939; 1472-6939
• DOI: 10.1186/s12910-015-0082-0

Background Identifying 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. Methods Using a scoping review methodology, we identified and evaluated seven studies using CBPR principles in biomarker discovery. Results and conclusions The 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.