Applying Principles of Community-Based Participatory Research in Autism Biomarker Discovery

Background:  Identifying biological markers or biomarkers for autism can potentially help to diagnose the condition and reduce overall burden of autism. Some scientific advances in biomedical research have already been integrated in clinical care for autism. However, considering the complex and changing nature of biomedical discoveries in this area, translating such knowledge into clinical applications has been challenging (Walsh et al., 2011). As many families experience challenges in accessing services and navigating treatment options, engaging families could clarify how the impact of putative biomarkers could support the process of identification and access to care.

Various models to engage families in research exist, but few have been used in autism research. One such model is community-based participatory research (CBPR). CBPR is defined by specific key principles, namely involving a unit of identified “community” in an equitable and collaborative way in all stages of research (Israel et al., 1998). While some perceive biomedical research to be at odds with participatory and community-based approaches, our previous work suggest that several factors influence these perceptions (Elsabbagh et al., 2014).

Objectives:  Using a scoping review methodology (Arksey & O’Malley, 2005), we systematically identified studies of stakeholder engagement in biomedical autism research and evaluated the extent to which they are consistent with nine CBPR principles articulated by Israel et al. (1998). These principles include defining a unit of “community”, building on strengths and resources within the community, and adapting the principles to different contexts with “flexibility, constant reflection, and critical analysis”.

Methods:  We identified studies from the following databases: Medline, CINAHL, Ovid, and PubMed. Author lists and references were also cross-referenced for potentially relevant articles. One reviewer retrieved titles and abstracts from these databases and reviewed them for further inclusion. Another reviewer independently retrieved and read included full-text articles and extracted relevant information into a database. They both reviewed the database to evaluate the extent to which CBPR principles are used in autism biomarker discovery research.

Results:  A total of 73 full-text articles were assessed from 342 retrieved records. Seven examples of empirical studies were identified. A synthesis of these studies suggests that two CBPR principles are consistent with autism biomarker discovery research. The first is community involvement in setting priorities and research questions through understanding parents’ attitudes and expectations towards the application of autism biomarkers in their lives. The second is collaborating with parents in devising experimental protocols. These studies also advocate the need to understand parents’ views on ethical issues related to biomarker discovery.

Conclusions:  We summarize and attempt to reconcile where CBPR principles are adapted to biomarker discovery in autism research. We raise the challenge of public engagement imposing pressure on the scientific community to produce outputs relevant for society at the risk of undermining scientific integrity. We reconcile this issue by proposing that public engagement is best developed in global priority setting in the process of translation, and protecting a space for scientific discovery.