Data Use Agreements and Restricted Data
If you are using data that have been collected from another source, it’s important that you know from the beginning if there are any restrictions on how you can use and share the data.
Sometimes datasets include potentially identifying information because that data is integral to the value of the dataset. In this case, the data can’t be openly shared, but could be made available under specific restricted-use agreements. These datasets are likely to have restrictions on how results from the dataset are reported and what happens to the data when the project is complete. In most cases you will need to agree to abide by the terms of a data use agreement or contract before you are given access to this kind of data, and so it’s easy to tell if you are working with a dataset that has such restrictions. However, in some cases it may be easy to click through these terms and conditions without really reading them -- it’s crucial that you really read the agreement in this case, too, so that you don’t find yourself in legal trouble or unable to publish the results of your work.
Conversely, if you plan to collect new data that contains sensitive, personally identifying information and would like to be able to share that data, including sensitive information, you will want to include that as part of your IRB protocol. Depending on your methodology, this could mean adding appropriate information as part of the consent process for your participants, creating a data use agreement, and developing specific plans about how you will make the data available.