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Discussion Items

This summary discusses the NIH RFI on Data Sharing, concerns related to anonymity, and the CARE Study focusing on genetic data from NHLBI-funded studies.

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Discussion Items

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  1. Discussion Items Jerome I. Rotter

  2. Summary: NIH RFI on Data Sharing • Data repository controlled by NCBI/NLM would contain de-identified genotype and phenotype data from ALL genome-wide association studies supported by NIH • Descriptive summary of all GWA Studies publicly available (required) • Data submitted as soon after QC as possible • Data and analyses available to any investigator after cursory application/ approval process • Submitting investigators would have exclusive publishing for the first 9 months after submission of data

  3. Summary: NIH RFI on Data SharingSummary of Concerns • Does this apply prospectively or retroactively? • If retroactive, current MESA consent is not consistent with proposed policy • Extensive covariate data makes a subject potentially identifiable • “Forensic-equivalent” genome-wide data makes a subject and their relatives potentially identifiable • Consent to include genetic, phenotypic, and covariate data in a government controlled database might be challenging • Particularly in minority groups that have been previously abused by research • Monitoring of data security delegated to investigators and IRBs with no direct interest in study participants • Question if local IRB’s of existing cohorts will approve

  4. Summary: CARE Study • Goal: 1700 candidate genes (8-10 SNPs per gene); 15,000 markers on ~50,000 participants from eight NHLBI funded-studies • Comparatively smaller sample for genome-wide association ARIC - Atherosclerosis Risk In Communities CARDIA - Coronary Artery Risk Development in Young Adults CHS - Cardiovascular Health Study CSSCD - The Cooperative Study of Sickle Cell Disease FHS - Framingham Heart Study JHS - Jackson Heart Study MESA - Multi-Ethnic Study of Atherosclerosis SHHS - Sleep Heart Health Study

  5. Larry Atwood, Boston, MAFHS Eric Boerwinkle, Houston, TXARIC Richard Fabsitz, Bethesda, MDNHLBI Myriam Fornage, Houston, TXCARDIA Stacey Gabriel, Cambridge, MABroad Joel Hirschhorn, Cambridge, MABroad Ronald Krauss, Oakland, CAHeart Abdullah Kutlar, August, GABlood Deborah Meyers, Winston-Salem, NCLung Emanual Mignot, Palo Alto, CASleep Dina Paltoo, Bethesda, MDNHLBI Susan Redline, Cleveland, OHSHHS Jerome Rotter, Los Angeles, CAMESA Jeanne Smith, Englewood, NJCSSCD Russell Tracy, Colchester, VTCHS James Wilson, Jackson, MSJHS CARE Steering Committee

  6. Susan Heckbert Craig Johnson Richard Kronmal Kiang Liu Joe Mychaleckyj James Pankow Wendy Post Bruce Psaty Stephen Rich Jerome Rotter Kent Taylor Russell Tracy Michael Tsai MESA CARE Working Group

  7. Data Release/IRB - James Wilson DNA Transfer/Genotyping - Larry Atwood Analysis/Study Design - Stephen Rich Candidate Gene/SNP Selection - Myriam Fornage Phenotypes - Bruce Psaty- Susan Heckbert Informatics - Joe Mychaleckyj Publications- to be determined CARE Subcommittees & Chair

  8. Data Release/IRB - Rotter, Lui DNA Transfer/Genotyping - Tsai Analysis/Study Design - Rich, Pankow Candidate Gene/SNP Selection - Taylor, Tsai Phenotypes - Heckbert Informatics - Mychaleckyj Publications- Post CARE Subcommittees & MESA Rep

  9. Summary: CARE Discussion Items • Pilot Study • Phenotype List • Candidate Gene List • IRB, Data Distribution Agreement/ Policy • Design/Analysis • Informatics • Publications Policy

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