Harvard Personal Genome Project: lessons from participatory public research.

ABSTRACT:

Background

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.

Discussion

Our model of non-anonymous, public genomes has led us to a highly participatory model of researcher-participant communication and interaction. The participants, who are highly committed volunteers, self-pursue and donate research-relevant datasets, and are actively engaged in conversations with both our staff and other Personal Genome Project participants. We have quantitatively asses

SUBMITTER: Ball MP 

PROVIDER: S-EPMC3978420 | biostudies-literature | 2014 Feb

REPOSITORIES: biostudies-literature