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.
Department of Biomedical Informatics and Medical Education, University of Washington ; Department of Bioethics and Humanities, University of Washington.
Nicholas
N
Anderson
Applied Health Sciences, Wheaton College, Wheaton, IL.
Caleb
C
Bragg
Department of Biomedical Informatics and Medical Education, University of Washington.
Andrea
A
Hartzler
Department of Bioethics and Humanities, University of Washington.
Kelly
K
Edwards
applied research; ethical and social issues; participant engagement; research communication; software tools