Sample Data Sharing IRB Language

Sample Data Sharing Language for IRB Protocols

This is language pulled out of a CLRN approved IRB. You would need to customize the highlighted pieces to the data you’re collecting and your circumstances. The important piece is that only de-identified data will be shared with DML researchers. This provision of sharing should also be mentioned in the informed consent form. When questioned about confidentiality, these are points to possibly include in your IRB protocol:

London School of Economics and Political Science:
–    All data will be kept as private, confidential and anonymous, both from other participants and when reporting findings, the only exception to confidentiality being if a child is at risk or participating in an illegal activity.
–    The project will adhere to the requirements of data protection in terms of data labeling, storage and security.
–    As noted at the outset, the MacArthur Connected Learning Research Network asserts the value-added of data sharing within the network (as a condition of project funding). This is detailed in the full research proposal. It is not intended to compromise on the protection of confidential data.
–    Notes from the research session and accompanying data will be stored indefinitely in locked filing cabinets and on password protected computers.
–    Only de-identified data will be shared with other researchers under the MacArthur DML (Digital Media Learning) data sharing policy (attached to this application).
–    Access to confidential/identifiable information regarding the students will be limited to <names of researchers>

Other sample language:
Boston College
The MacArthur grant includes a data sharing policy that we have attached. To comply with both Boston College IRB policies and Digital Media and Learning network data sharing policies, we plan to do the following:

At Boston College, we will store the data on password-protected computers in a locked research office in McGuinn Hall and de-indentified data will be uploaded into password-protected accounts in Dedoose and UCInet for analysis. Principal Investigator <name of PI> and research assistants <names of research assistants> will have access to the data.

The MacArthur grant protocol require that the Principal Investigator respond to requests to share data that come from other PIs within the CLRN. We will include this provision in the informed consent form, giving participants the chance to opt in or out of data sharing within the research network. Data from participants who have consented to this potential sharing with other researchers by opting in on their informed consent documents may be shared in accordance with the policy. (The policy is detailed in a document produced by the DML Initiative connected learning team on February 21, 2011. See below). All shared data will be de-identified. As per the policy document, if a data sharing request is made, the PI will investigate the conditions at the requesting institutions and will not share the data under the following conditions: 1) revealing this data would violate the Boston College IRB protocol; 2) the data has not been verified sufficiently to share; 3) sharing the data would lead to unacceptable risks to the research subjects; 4) it is illegal to share this data; 5) sharing the data would create a conflict of interest or otherwise be unethical. The Data Sharing Policy and Procedures are listed in the document attached below.

University of Colorado Boulder
As part of the MacArthur Foundation Connected Learning Research Network, we will work with researchers affiliated with the University of California Humanities Research Institute (UCHRI), an institute that houses the Principal Investigator of a larger MacArthur Connected Learning Research Network grant whose focus is on understanding and documenting youths’ digital, technology, and social media practices. All data will be retained for research and educational purposes to be shared among the CU-Boulder researchers. Aggregated data collected on the surveys, that is, information about the groups in the study completing the various surveys, not individuals’ data, may be shared with researchers affiliated with the University of California Humanities Research Institute for an indefinite period of time. The University of California Humanities Research houses the Principal Investigator of the larger MacArthur Connected Learning Research Network grant; participating Co-PIs will collaborate and may use the redacted and de-identified data pool from one another’s respective studies. These data will not have identifiers that can make the participants known to the researchers.

We also anticipate that transcripts of interviews with research subjects, activity logs (summaries) of video and audio data, and video clips we have created would be shared with other researchers in the larger MacArthur Connected Learning Research Network. There will be no link or code between the pseudonym and the participants’ actual identities. The Principal Investigator, <name of PI>, will be the only researcher who holds the key of identifying codes.  No other investigators who may share data will have access to the key, codes, and identifiers.  In short, all data will be de-identified throughout the documentation, analysis, and reporting processes; thus, data obtained by other investigators in the larger hub and any additional new research with the data would not fall under IRB purview. Relevant to video data, all participants who have provided consent will be asked if use of video data for research purposes and presentations can include their images or whether they prefer the blurred or otherwise electronically altered images to protect their identities.