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

POSTED 3/20/20: Owing to the heightened risk of COVID-19 transmission, the Provost and Vice Provost for Research have stated that “we must reduce laboratory research and other nonessential research activities.”  Therefore, although the IRB is moving forward with reviewing and approving protocols, amendments, and renewals, these approvals do NOT supersede the Provost’s directive. The decision as to whether you can proceed with any laboratory research activities during the coronavirus-associated reduction in laboratory research will be made by your Dean.

  • No study participants may be brought to campus.
  • Off-campus in-person interaction with study participants is highly discouraged.
  • If you are already in the field, you must also follow any local coronavirus-related restrictions.
  • If feasible, consider modifying your study procedures to use remote interaction such as phone/Zoom/Skype: simply email the IRB office with a description of the modification, and any resulting changes to your consent process and data security plans.

Visit the IRB COVID-19 FAQs page for more details.

Thank you for taking these limitations into consideration, and please contact the IRB if you have any questions.

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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