The Framingham Heart Study is a project of Boston University & the National Heart, Lung, & Blood Institute.
The Framingham Heart Study is a project of Boston University & the National Heart, Lung, & Blood Institute.
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Principles of Distribution for Non-renewable Genetic Resources

Non-renewable biospecimens available for genomic research (including, but not limited to whole blood, buffy coats, PAXgene blood and, cryopreserved lymphocytes) and the genomic products derived from them (RNA, DNA and amplified products) are important resources for the conduct of current and next generation genomics research. For example, RNA has been extracted from PAXgene tubes and recently used for transcriptional profiling and microRNA profiling (through the NHLBI SABRe Project) as well as quantitative real time-PCR (rtPCR or qPCR) through grant-funded research. An additional use of RNA that may provide a future resource for submission to dbGaP includes genome-wide RNA sequencing. Blood derived DNA has been used for telomere length assays and has been proposed for use in several DNA methylation profiling studies. Additional future uses of blood derived DNA that may provide a future resource include genome-wide (“whole genome”) DNA sequencing.

The FGSC proposes that the following principles be followed when making decisions about non-renewable genomic resources:

Review

  1. Transparent scientific review of proposals requesting the distribution of non-renewable genomic resources will be conducted by the DNA Committee and the Executive Committee guided by the FGSC.
  2. Priority to be given to proposals with extremely high scientific merit or proposals to generate a genome-wide resource that can be shared widely among investigators.
  3. Distribution will be conducted transparently and as early as possible after completion of internal QC protocols, with equal opportunity for access by all investigators.
  4. Distribution

    1. The merit and priority for scientific proposals for non-renewable genomic resources may need to take into account the timing of the examination when the resource was collected and the scarcity of the overall available resource.
    2. Distribution through FHS-NHLBI and FHS-BU must be consistent with informed consent and NHLBI and BU distribution policy.

    Return

    1. Investigators must provide a procedure for the storage and return of unused material.
    2. Investigators must provide a MOP for each specific RNA or DNA extraction protocol performed on distributed biosamples, including optimal storage conditions, controls used and QC metrics.
    3. Data generated, including biosamples extraction yields and assay data, must be returned to FHS within 6 months of the generation of data. Genetic data will also be posted at dbGaP.
    4. The FHS / BU Genetics Lab may need to set aside special personnel and procedures for collection, storage and distribution. These needs may in turn affect timelines and costs.
    5. Redistribution of RNA or DNA by recipients is not authorized.
    6. Return of RNA or DNA should be completed within 3 months of the completion of the project.

    Last Updated: Legacy Policy