Whether you are working with an existing data set collected by another researcher, storing data you yourself have collected from human research participants, or conducting Internet- or app-based research, you must take adequate steps to protect the privacy and confidentiality of research data.
Research with human participants frequently involves analysis or collection of personal identifying information ("identifiers"). In reviewing proposed human participant research, the IRB will consider whether data to be analyzed or collected by the researcher could be stigmatizing, result in criminal or civil liability, damage financial standing, employability, insurability, or reputation, result in stolen identity, or otherwise pose a threat to an individual’s privacy or confidentiality. If so, the researcher should describe steps they will take to ensure that such information is kept secure.
Broadly, human participant research should be planned with the following in mind:
- Ensuring that the informed consent process adequately and accurately explains to potential participants about possible risks of participation, including any risk that their personal data may be compromised.
- Appropriately safeguarding the privacy or confidentiality of information obtained from or about human participants, and documenting these procedures in the protocol application and consent form.
- Minimizing potential risks to participants, including risks associated with accidental or malicious security breaches.
- Cornell Data Storage Finder tool: the Research Data Management Services Group (RDMSG) operates this online tool to help you select an appropriate method for collecting and storing your research data
- Relevant IRB policies and guidance: