OUR Policies – Sudan Genome

Release Policy

The Sudan National Genome Project primary datasets will be classified into three different categories each with its own data release policy.

Raw sequencing data (BAM/FASTA files etc..) will not be released publicly but will be available to project PIs, national investigators with permissions from the DMRB /IRB

Analyzed genotype and sequence data with related phenotypes and identification

Allele frequency data these are large-scale datasets of significant value to the wider scientific community will be available at the appropriate interface at the Sudan Genome Project

The accompanying data will be strictly limited in order to protect confidentiality and prevent ethnic stigmatization while allowing the genetic associations to be re-analyzed by the scientific community.

The categorization and assignment to groups will be decided and sanctioned by managing committee and DMRB

The resulting primary genetic data will be published with a description of the community sampled as agreed with that community

Data release policy for datasets consisting of genetic data linked to detailed clinical, phenotypic, immunological and/ or demographic data will released upon request from the DMSRB and management committee under the Researchers working in the field of genomics and genetics can request access to these datasets through an independent committee. Access will only be granted once the investigator has signed up to a legally-binding agreement that requires: • The data will only be used for the specified disease research:

• The data will not be used in any way that could reasonably be expected to lead to ethnic stigmatisation; • No attempt will be made to identify the subjects.

• The data will not be transferred to other researchers outside of the named research group.

For collaborative projects dataset is made available nine months after the genetic data has been returned to the Genbank. The purpose of this delay is to allow the investigators at the relevant study site(s) time to publish their own analyses of the results from their own sites.