Participant-centric initiatives: Tools to facilitate engagement in research

Nicholas Anderson, Caleb Bragg, Andrea Hartzler, Kelly Edwards

Research output: Contribution to journalArticle

16 Scopus citations

Abstract

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.

Original languageEnglish (US)
Pages (from-to)25-29
Number of pages5
JournalApplied and Translational Genomics
Volume1
DOIs
StatePublished - Dec 1 2012
Externally publishedYes

Keywords

  • Applied research
  • Ethical and social issues
  • Participant engagement
  • Research communication
  • Software tools

ASJC Scopus subject areas

  • Biotechnology
  • Molecular Biology
  • Pharmaceutical Science

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