Harvard Personal Genome Project: lessons from participatory public research

Type Journal Article Author Madeleine P. Ball Author Jason R. Bobe Author Michael F. Chou Author Tom Clegg Author Preston W. Estep Author Jeantine E. Lunshof Author Ward Vandewege Author Alexander W. Zaranek Author George M. Church URL http://genomemedicine.com/content/6/2/10/abstract Rights 2014 Ball et al.; licensee BioMed Central Ltd. Volume 6 Issue 2 Pages 10 Publication Genome Medicine ISSN 1756-994X Date 2014-02-28 Extra PMID: 24713084 DOI 10.1186/gm527 Accessed 2016-01-25 20:54:26 Library Catalog www.genomemedicine.com Language en Abstract Since its initiation in 2005, the Harvard Personal Genome Project has enrolled thousands of volunteers interested in publicly sharing their genome, health and trait data. Because these data are highly identifiable, we use an ‘open consent’ framework that purposefully excludes promises about privacy and requires participants to demonstrate comprehension prior to enrollment. Short Title Harvard Personal Genome Project