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Anderson N, Bragg C, Hartzler A, et al. Participant-Centric Initiatives: Tools to Facilitate Engagement In Research. Appl Transl Genom. 2012;1:25-29doi: 10.1016/j.atg.2012.07.001.
Anderson, N., Bragg, C., Hartzler, A., & Edwards, K. (2012). Participant-Centric Initiatives: Tools to Facilitate Engagement In Research. Applied & translational genomics, 125-29. https://doi.org/10.1016/j.atg.2012.07.001
Anderson, Nicholas, et al. "Participant-Centric Initiatives: Tools to Facilitate Engagement In Research." Applied & translational genomics vol. 1 (2012): 25-29. doi: https://doi.org/10.1016/j.atg.2012.07.001
Anderson N, Bragg C, Hartzler A, Edwards K. Participant-Centric Initiatives: Tools to Facilitate Engagement In Research. Appl Transl Genom. 2012 Dec 01;1:25-29. doi: 10.1016/j.atg.2012.07.001. PMID: 24772384; PMCID: PMC3998724.
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Appl Transl Genom. 2012 Dec 01;1:25-29. doi: 10.1016/j.atg.2012.07.001.

Participant-Centric Initiatives: Tools to Facilitate Engagement In Research.

Applied & translational genomics

Nicholas Anderson, Caleb Bragg, Andrea Hartzler, Kelly Edwards

Affiliations

  1. Department of Biomedical Informatics and Medical Education, University of Washington ; Department of Bioethics and Humanities, University of Washington.
  2. Applied Health Sciences, Wheaton College, Wheaton, IL.
  3. Department of Biomedical Informatics and Medical Education, University of Washington.
  4. Department of Bioethics and Humanities, University of Washington.

PMID: 24772384 PMCID: PMC3998724 DOI: 10.1016/j.atg.2012.07.001

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.

Keywords: applied research; ethical and social issues; participant engagement; research communication; software tools

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