Participant-centric initiatives: Tools to facilitate engagement in research

Clinical genomic research faces increasing challenges in establishing participant privacy and consent processes that facilitate meaningful choice and communication capacity for longitudinal and secondary research uses. There are an evolving range of participant-centric initiatives that combine web-based informatics tools with new models of engagement and research collaboration. These emerging initiatives may become valuable approaches to support large-scale and longitudinal research studies. We highlight and discuss four types of emerging initiatives for engaging and sustaining participation in research.

► Public participation in research remains a significant challenge.
► Models of technically supported communications between patients and researchers.
► Different modes of choice, information and control for different participants needs and values.