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 | |
| State | Published - Dec 1 2012 |
| Externally published | Yes |
Fingerprint
Keywords
- Applied research
- Ethical and social issues
- Participant engagement
- Research communication
- Software tools
ASJC Scopus subject areas
- Biotechnology
- Molecular Biology
- Pharmaceutical Science
Cite this
Participant-centric initiatives : Tools to facilitate engagement in research. / Anderson, Nicholas; Bragg, Caleb; Hartzler, Andrea; Edwards, Kelly.
In: Applied and Translational Genomics, Vol. 1, 01.12.2012, p. 25-29.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - Participant-centric initiatives
T2 - Tools to facilitate engagement in research
AU - Anderson, Nicholas
AU - Bragg, Caleb
AU - Hartzler, Andrea
AU - Edwards, Kelly
PY - 2012/12/1
Y1 - 2012/12/1
N2 - 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.
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.
KW - Applied research
KW - Ethical and social issues
KW - Participant engagement
KW - Research communication
KW - Software tools
UR - http://www.scopus.com/inward/record.url?scp=84870059904&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84870059904&partnerID=8YFLogxK
U2 - 10.1016/j.atg.2012.07.001
DO - 10.1016/j.atg.2012.07.001
M3 - Article
AN - SCOPUS:84870059904
VL - 1
SP - 25
EP - 29
JO - Applied and Translational Genomics
JF - Applied and Translational Genomics
SN - 2212-0661
ER -