Publication and presentation of genotype counts or allele frequencies

We do not allow public posting of FHS allele frequencies from large scale datasets on websites.
We do not allow genotypes and other information to be posted unless rare exceptions are sought ( fhsanc@bu.edu ) first (e.g., WiCell cell lines).
Publication or presentation of FHS genotype counts or allele frequencies for single variants with accompanying specific (and potentially identifiable) clinical or phenotypic information is not permissible if those variants have Minor Allele Counts (MAC) <= 5 either in the overall FHS cohorts sample or any subset FHS sample. Several options exist for displaying and discussing such findings and FHS should be contacted BEFORE publication or presentation if clarification is needed:
1. Variants are listed as having MAC <=5 but the exact number of individuals is not specified and phenotypes of sub-individuals within that <=5 are not described in detail
2. The FHS individuals may be pooled together with other variant carriers in other independent cohort samples to achieve MAC >5, in which case phenotype subsets can be described in detail or data points/plots can be given as long as there is no manner in which the subsamples can obviously be labeled or separated based on information given (such as ancestry, study site, geography, measurement type, etc.)
3. Phenotype versus genotype plots with FHS MAC <=5 are generally not permissible for traits that would be deemed potentially sensitive or clinically actionable but exceptions can be sought for routine quantitative traits or non-sensitive traits