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This is a summary of all known research studies in the United States that provide enrolled participants the option to access their own raw genome sequence data generated as part of the study.

Want to add or edit your study? Submit details of your study now.

Harvard Personal Genome Project

  • Dates: 2005-
  • Context: Research
  • # people sequenced to-date: 278
  • Platform: WGS
  • Lab Report with Signout: No
  • Results Returned: Yes, filtered variants with literature annotation
  • Report to Health Record: No
  • Raw Data to Participants: Yes (variants)
  • CLIA/CAP: No
  • Website: http://personalgenomes.org/harvard
  • Last updated: Jason Bobe, Feb 20 2017; need to get update from Mike Chou

BWH/Harvard MedSeq

  • Dates: 2011-
  • Context: Research
  • # people sequenced to-date: 60
  • Platform: WGS
  • Lab Report with Signout: Yes
  • Results Returned: Monogenic, Common, PGx
  • Report to Health Record: Yes
  • Raw Data to Participants: FASTQ
  • CLIA/CAP: Yes
  • Website: http://www.genomes2people.org/the-medseq-project/
  • Last updated (who/when): Jason Bobe, Feb 2017; Need to get updated from Robert Green

Mount Sinai HealthSeq

  • Dates: 2012-2015
  • Context: Research
  • # people sequenced to-date: 40
  • Platform: WGS
  • Lab Report with Signout: No
  • Results Returned: Monogenic, Common, PGx
  • Report to Health Record: No
  • Raw Data to Participants: VAM, VCF
  • CLIA/CAP: No
  • Last updated (who/when): published paper

Mayo "10 scientists"

  • Dates: 2012-2014
  • Context: Research
  • # people sequenced to-date: 10
  • Platform: WES
  • Lab Report with Signout: No
  • Results Returned: Nomogenic
  • Report to Health Record: No
  • Raw Data to Participants: Yes
  • CLIA/CAP: No
  • Last updated (who/when): Paper

Institute for Systems Biology (ISB) Pioneer 100

  • Dates: 2014
  • Context: Research
  • # people sequenced to-date: 108
  • Platform: WGS
  • Lab Report with Signout: No
  • Results Returned: Monogenic, Common, PGx
  • Report to Health Record: No
  • Raw Data to Participants: BAM, VCF
  • CLIA/CAP: No
  • Last updated (who/when): Paper

BWH/BCH/Harvard BabySeq Project

  • Dates: 2015-
  • Context: Research
  • # people sequenced to-date: 30
  • Platform: WGS
  • Lab Report with Signout: Yes
  • Results Returned: Monogenic, PGx
  • Report to Health Record: Yes
  • Raw Data to Participants: FASTQ
  • CLIA/CAP: Yes
  • Website: http://www.genomes2people.org/babyseqproject/
  • Last updated (who/when): paper

Nevada Institute of Personalized medicine

  • Dates: 2015-
  • Context: Research
  • # people sequenced to-date: 0
  • Platform: WES
  • Lab Report with Signout: Yes
  • Results Returned: Monogenic, PGx
  • Report to Health Record: Yes
  • Raw Data to Participants: FASTQ
  • CLIA/CAP: Yes
  • Website: https://www.unlv.edu/nipm
  • Last updated (who/when): paper

Seeq

  • Dates: 2016-
  • Context: Research
  • # people sequenced to-date: 500
  • Platform: WGS (ultra low coverage)
  • Lab Report with Signout: No
  • Results Returned: Ancestry, microbiome
  • Report to Health Record: No
  • Raw Data to Participants: Yes, BAM
  • CLIA/CAP: No
  • Website: https://seeq.io/
  • Last updated (who/when): Joe Pickrell, Feb 2017

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