IRB Considerations: Human Participant Data, Data Sets and Internet Research

UPDATED 05/28/2021:

As of June 1, 2021, many COVID-19 pandemic-related restrictions on the Cornell Ithaca campuses will be relaxed for faculty and staff. High level details about changes to research-related guidelines can be found on the Cornell Coronavirus Research Continuity Guidance webpage. The IRB office is in the process of revising our human participant research-specific FAQs and guidance materials to reflect these new guidelines. Please visit the IRB COVID-19 FAQs page periodically for updates. Thank you for your patience and cooperation, and please contact the IRB if you have any questions.

The IRB committee and staff continue to function remotely during regular business hours. You can reach us via email at irbhp@cornell.edu, or find specific staff contact information on the IRB Office page.

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.

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