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Participant directory

March 7, 2012

The premise of the PGP is that matched sets of genome, environment, and trait information should be available to all investigators.  Not just professional researchers with million dollar labs, but PGP participants themselves, family members, hobbyists, and students.  Getting the data should be easy and free.

To this end, as we grow our database and our collection of tissue samples, we are also developing suitable publication mechanisms.  One recent development is the directory of participants, at https://my.personalgenomes.org/users.  This page lists all enrolled participants, and allows some basic sorting based on what kinds of data are available on their public profile pages.

Here are some things you might like to try:

  • Click an huID to see a participant’s full public profile.
  • Look up your own public profile by typing your huID in the search box.
  • Click the “number of relatives enrolled” column heading to see some PGP families.

Here are some things you can see on a public profile page, in case you haven’t noticed:

  • Tissue sample tracking: when we sent out the collection kits, when they were returned to us by the participant, and when we transferred them to plates in preparation for sequencing.
  • Medications, conditions, prescriptions, etc. imported from Google Health before Google Health went away.  (By the way, yes, we are working on new ways to add and update health records!)
  • Survey responses.

Our public data access tools will continue to grow as we accumulate participants, whole genome sequences, health records, and other data.

Finally, if you’re a machine, you can find the same information in a more readable form at the following address: https://my.personalgenomes.org/users?format=json&iDisplayStart=0&iDisplayLength=15.

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