Genomic Data Sharing Policy

The Framingham Heart Study (FHS) is committed to data sharing and adhering to the NIH Genetic Data Sharing Policy. As such, all resultant genetic/genomic data generated from approved ancillary studies must be returned to FHS Data Management in accordance with the NIH Genomic Data Sharing Policy.

Since 2007 FHS has submitted over 300 phenotype datasets containing approximately 30,000 demographic, clinical, and exposure variables and tens of millions individual level genotypes across approximately 15,000 FHS participants. This effort responded to the NIH GWAS SHARe policy for data sharing, but has extended well beyond that mandate.

Key points include:

Genetic and genomic data include, but are not limited to, genome-wide array data used for association studies (GWAS), single nucleotide polymorphisms (SNP) arrays, and genome sequence, transcriptomic, metagenomic, epigenomic, and gene expression data.
Genetic and genomic data must be returned to FHS after data cleaning and quality control, which are generally completed within 3 months after data have been generated. Data are released to the broader scientific community 6 months after the initial submission or the 1st publication, whichever comes first. The FHS policy applies to all genetic and genomic data generated from any study, irrespective of funding level and funding mechanism (ancillary, core contract, or other).
If investigators providing the data expect the time needed to clean and return new data will be greater than 3 months, a justification and expected timeline should be provided in an email to the Ancillary Study Coordinator, Heather Arruda, at FHSanc@bu.edu.
All data – both raw and QC’D – must be returned to FHS data management.
Returned data will be deposited in the NHLBI’s genetic data repository, dbGaP, in collaboration with the FHS Genetic Data Management Group.

Last Updated: Legacy Policy