Data Use vs Data Sharing

Most researchers will choose to share their data openly on LDbase. In some cases, it may not be feasible, or desirable to share data openly. In this case, researchers should make an agreement with a recipient on how the data will be used.

Data Use Agreements

One reason for not openly sharing data is if the data contain identifiable information or health information protected under the Health Insurance Portability and Accountability Act of 1996 (HIPAA; see 45 CFR Sect. 164.501 of the Privacy Rule). In these cases, researchers can still share a limited version of their data, but this needs to be done under specific terms.

A Data Use Agreement (DUA) is a contractual document in which the terms and conditions of the transfer of the data are outlined. DUA include limitations on its use, obligations for safeguarding the data, liability from harm that might come from using the data, publication specifications, and privacy rights. The recipient of the data guarantees the provider of the data to use or disclose any protected health information present in the data only in relation to specific purposes. These purposes are set out in the DUA. Any person not included in the original IRB of a project, needs to sign a DUA. 

DUAs are specific for a study and a project. Each Institution will have a template of a Data Use Agreement (DUA) for Limited Data sets that include Protected Health Information. (Here is an example of Florida State University’s DUA) that can be adapted. We advise you to contact your office of sponsored research to get details about sharing Limited Data Sets. It is possible more formal requests need to be made.

The office of research at the University of North Carolina at Chapel Hill has a flowchart that can help you decide when you might need to use a DUA for your data. You can access that here:

Data Sharing Agreement

In other cases, researchers may want to limit the availability of data. For example, a dataset might include a small sample of children or qualitative data that could make participants identifiable. Researchers who are still actively analyzing their data may also want to limit access.

In these cases, researchers may still want to enter into an agreement with a recipient, but because there are no identifiable variables of protected health information under the law, this agreement does not have to be as formal. 

In a data sharing agreement (DSA), researchers also delineate the specific terms for data sharing. These terms might include specific guidelines for citations and expectations for adherence to Open Science practices. We provided a blanket agreement on LDbase, but these can be adapted however it fits the research project best.