Obtaining Participant Releases for Data Sharing

Video and audio recordings of participants are inherently identifiable. In order to share identifiable data researchers must get informed consent from the people depicted in recordings or images to share their data in Databrary. You can share identifiable research data as long as you inform participants about what sharing their data means and they consent to sharing it. On Databrary, we call this consent a "release" since they are releasing their data for use by other researchers.

To standardize the process of obtaining releases from participants--and make it as simple as possible for researchers--we have developed a Databrary Release Template that can be added to human subjects research ethics protocols. The Databrary Release Template was developed and refined in close consultation with the IRB office at NYU to give researchers a standardized way to obtain the necessary permissions to share data in Databrary. The template form makes it clear and unambiguous to participants about what agreeing to share their data in Databrary will mean.

How to prepare to share with Databrary

Here's what you should do:

  1. Ensure that your IRB protocol(s) enable sharing with Databrary.

    • We recommend adapting the Databrary Release Template and getting IRB approval to give the form to participants.

    • The Databrary Release is not required. Only the local IRB must approve of the language for sharing in Databrary.

    • In some cases, local IRBs have deemed that certain release language in consents from previously collected data covers sharing in Databrary.

    • In any case, the contributor must warrant that they have the necessary IRB approvals (or waivers) to share their data.

  2. Double-check your existing protocol and informed consent/assent documents for data destruction clauses.

    • Data destruction clauses inherently conflict with the ability to store and share data. Instead, we recommend saying, "data will be stored indefinitely in a secure library on the internet."
    • There are often misconceptions about the regulations around data destruction.
    • NIH and NSF do not require data destruction clauses.
  3. Once you have modified your IRB protocol(s), start securing permission from participants and recording those permissions.

    • We advise researchers to ask participants for permission to share at the end of data collection after participants have acquired first hand knowledge about the study. This ensures that consent to participate is completely separate from permission to share and eliminates nearly all risk that asking participants about sharing their data will affect their decision about whether or not to participate.
  4. Prepare recordings for sharing with Databrary.

    • Tag sessions with the level of permission granted by the participants.
    • Remove personally identifying information from public metadata such as subject IDs or filenames.
    • Data can be uploaded to Databrary prior to sharing it with anyone. In this way, Databrary can act like a lab file server. You can decide later whether you want to share data with researchers who are not part of your approved IRB protocol.

Please note that users must be authorized with Databrary in order to open data for sharing with the Databrary community, but not in order to simply collect, upload, and manage data.