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IRBs and ethical data sharing

informed consent human research data

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Rick Gilmore

Posts: 5

Hello, all.

I'm new to CORE, but excited about this great initiative. I'm slated to give a presentation this summer at the Society for Improving Psychological Science (SIPS) meeting on "IRBs and Best Practices for Ethical Data Sharing" with Gustav Nilsonne.

If you have resources to share on this topics or suggestions about important topics to cover, please let me know. I'd like to cast a wide net given the breadth of interests represented by SIPS.

Thanks in advance.

Rick Gilmore

Camille Nebeker

Posts: 55

Hi Rick,

Welcome and thanks for your post!

When you consider ethical data sharing, are you thinking about personal health data collected for research that isn't covered under HIPAA? or data that is captured from public sources like Twitter that may be sensitive?

Thanks, Camille

Rick Gilmore

Posts: 5


We're casting a wide net with this presentation. I think most researchers will not be collecting HIPAA-protected data. The meeting is devoted to expanding open science, however, so practical ways to enable data sharing even in these more difficult cases would be very much welcomed.


Rubi Linares-Orozco

Posts: 34

As a prior IRB analyst, our IRB (UCSD) will ask the investigator to address the following in their research applications:
1) Provide a description of how participant privacy and confidentiality will be protected on this study. Investigators must disclose their process for ensuring that participants have control over access to themselves (privacy) and how data (participant and study data) will be managed and used (confidentiality).
2) Provide an adequate description of procedures used to manage the participant’s privacy concerns
3) Provide a adequate description of what provisions will be used to maintain confidentiality of participant and study data?
3) How will participant and study data/specimens be protected/secured?
4) Will the research records be in a locked cabinet?
5) Who will have access to the records?
6) What security procedures will be used regarding electronic storage of data?
7) Who will control access to the records and how will this be controlled?
8) What are the procedures for “deidentifying” participant/study information/specimens?
9) Where will data key be kept?
10) Will identifiers be destroyed following the collection and aggregation of data?
11) What information, if any, will be disclosed to entities beyond the PI and key personnel noted in the application, and to whom the information will be provided?

The questions can be more extensive depending on the study design, but these are the minimum required to be addressed in any given human subjects research study.

Also NIH policy requires that investigators submit a general description of the Data and Safety Monitoring Plan for clinical trials (biomedical and behavioral intervention studies) as part of the research application. In developing the Data and Safety Monitoring Plan, refer to the NIH Policy For Data and Safety Monitoring at or

Hope this information can help you in your presentation.

Rick Gilmore

Posts: 5

Hello, all.

Thank you for your comments. I'm sharing the link to our (still draft as of 2017-07-05) presentation

and the Open Science Framework wiki associated with it

Perhaps these resources will be of use to the CORE community.