DIYgenomics (www.DIYgenomics.org) is a new platform bringing citizen scientists together to run peer cohort research studies and conduct novel research linking genetic data and physical biomarkers. Some norms are developing in response to the variety of community-based research issues that arise such as adaptive studies, informed consent, security, anonymity, and study design.
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DIYgenomics: an open platform for citizen science
1. DIYgenomics: an open platform for citizen science Melanie Swan Founder DIYgenomics +1-650-681-9482 @DIYgenomics www.DIYgenomics.org [email_address] July 21, 2010, OSCON, Portland OR Slides: http://slideshare.net/LaBlogga
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5. Open science / citizen science ecosystem July 21, 2010 DIYgenomics.org Traditional science research Open science DIYbio Citizen science: 200+ organizations 1 1 http://scienceforcitizens.net/
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7. We are standing in a new era July 21, 2010 DIYgenomics.org April 1, 2010 Image credit: http://pubs.acs.org/cen/_img/87/i50/8750cover2_law.gif Dec. 14, 2009
8. 3 rd and 4 th generation sequencing arrives July 21, 2010 DIYgenomics.org 3 rd Gen: Sequencing by Synthesis 2 nd Gen: Parallelized sequencing 1 st Gen: Sanger Sequencing 4 th Gen: Electronic Sequencing Sources: http://www.genomicseducation.ca/files/images/information_articles/sequencing.gif, http://www.wellcome.ac.uk/News/2009/Features/WTX056032.htm, http://www.pacificbiosciences.com/video_lg.html, http://www.nanoporetech.com/sequences
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10. New concept of health self-management July 21, 2010 DIYgenomics.org Source: Extended from Swan, M. Emerging patient-driven health care models: an examination of health social networks, consumer personalized medicine and quantified self-tracking. Int. J. Environ. Res. Public Health 2009 , 2, 492-525, Figure 1.
25. Innovating the research model July 21, 2010 DIYgenomics.org Institutional PI (principal investigator) Traditional Research Model Citizen Science Research Model Research subjects Citizen scientists Investigators = Participants Institutional Review Board (IRB) Citizen ethicists FAQs Grant funding Journal publication Self publishing Patient advocacy groups Research foundations Social VC Crowd-sourcing
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28. Thank you! Melanie Swan Founder DIYgenomics +1-650-681-9482 @DIYgenomics www.DIYgenomics.org [email_address] Slides: http://slideshare.net/LaBlogga Creative Commons 3.0 license Collaborators: Cindy Chen Priya Kshirsagar Lucymarie Mantese Raymond McCauley Marat Nepomnyashy Ted Odet Roland Parnaso Greg Smith Aaron Vollrath Lawrence S. Wong Crowd-sourced clinical trials Personal genome apps