7  What Data To Publish

Data Sharing policies and privacy protection considerations

In the general case when sharing research data as much detail as possible should be shared to maximize the utility of the data to the scientific community. When dealing with human data however considerations of consent and privacy are paramount.

When considering what data should or should not be deposited publicly you should consult the consent agreements signed by the tissue donors of samples used in your study. When these samples come from a tissue bank you should consult the tissue bank where you should be able to find details of how participants where consented. There will also generally be guidance on what data they are able to share with you as a researcher and which portions of that data should not be made generally available. Many of the tissue samples used by HDBI researchers are from the Human Developmental Biology Resource (HDBR). For additional details on HDBR policy about the sharing of data relating to their sample see the HDBR’s data sharing policy

Data which pertains to technical or biological properties of the sample are generally suitable to be shared. Data about the donor of the sample will generally not be suitable to be shared. This will depend on the specific consent agreements associated with a given sample and should not be assumed.

Data points like sample collection dates can be a problematic, where time between two points in a sample’s history might be relevant e.g. time from collection to processing this is better expressed in relative time rather than absolute dates.