I’m interested in accessing the Fox Insight genetic data (https://foxden.michaeljfox.org/insight/register/genetic) but am not sure how to identify an institutional contact who can verify privacy and security measures. Anyone have suggestions on where to look? Also interested if folks have experience identifying this person external from an academic affiliation?
Thanks!
Hi, the tools to work with the data require a Unix/Linux environment (most commonly), and at most academic institutions there are shared servers, either at the department or institutional level. The administrators of those servers should be able to point you in the right direction, or at least other colleagues who have worked with similar large-scale data types. Most institutions have a research office or position (i.e. Vice Chair of Research), or Information Services department - these may be a good first step. Also, make sure to submit a proposal for approval to the appropriate IRB (and they too may be able to suggest appropriate privacy/security steps).
