Participant-centric initiatives: Tools to facilitate engagement in research

Nicholas Anderson; Caleb Bragg; Andrea Hartzler; Kelly Edwards

doi:10.1016/j.atg.2012.07.001

Participant-centric initiatives: Tools to facilitate engagement in research

Nicholas Anderson, Caleb Bragg, Andrea Hartzler, Kelly Edwards

Research output: Contribution to journal › Article › peer-review

21 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 language	English (US)
Pages (from-to)	25-29
Number of pages	5
Journal	Applied and Translational Genomics
Volume	1
DOIs	https://doi.org/10.1016/j.atg.2012.07.001
State	Published - Dec 1 2012
Externally published	Yes

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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10.1016/j.atg.2012.07.001

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AU - Hartzler, Andrea

AU - Edwards, Kelly

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AB - 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.

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KW - Ethical and social issues

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KW - Research communication

KW - Software tools

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ER -

Participant-centric initiatives: Tools to facilitate engagement in research

Abstract

Keywords

ASJC Scopus subject areas

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