Do I need to share all of my data openly?
Answer
Not necessarily. In writing their DMSPs, researchers are expected to “maximize the appropriate sharing of scientific data generated from NIH-funded or conducted research, consistent with privacy, security, informed consent, and proprietary issues.”
This is not an explicit requirement to share data openly, meaning without restriction on who it is shared with and for what purpose. Rather, it is an acknowledgment that, because of certain ethical, legal, and social issues, not all data can be shared openly or even shared at all.
Any restrictions on data sharing should be reflected in the data management and sharing plan. NIH has given the following as examples of why data may not be shared. Informed consent will not permit or will limit the scope or extent of sharing and future research use.
- Existing consent (e.g., for previously collected biospecimens) prohibits sharing or limits the scope or extent of sharing and future research use.
- Privacy or safety of research participants would be compromised or place them at greater risk of re-identification or suffering harm, and protective measures such as de-identification and certificates of confidentiality would be insufficient.
- Explicit federal, state, local, or Tribal law, regulation, or policy prohibits disclosure.
- Datasets cannot practically be digitized with reasonable efforts.