What do I need to know about human subjects research involving uses of existing data from Massive Open Online Courses (MOOCs)?

MOOCs, online courses that anyone with an Internet connection can take at no charge, are an increasingly visible aspect of the learning landscape, including here at UCB. Investigators who plan to use “big data” obtained from MOOC hosts such as EdX or Coursera for human subjects research purposes should be aware of the following:

  1. Many studies involve data that have already been collected, and the researcher applies to the MOOC host company for use of the data or plans to use data from an in-house course that used a similar platform.
    1. Exempt determination. Some studies may fit the criteria for an exempt determination.
    2. Non-exempt IRB submissions. If the study does not fit into one or more exempt categories, investigators must apply at the non-exempt level. Investigators may request that the IRB approve a waiver of informed consent for the use of the data if the following are true: (1) The research will involve no more than minimal risk of harm to subjects; (2) The waiver or alteration will not adversely affect the rights and welfare of the subjects; (3) The research could not practicably be carried out without the waiver or alteration; and (4) Whenever appropriate, the subjects will be provided with pertinent information after participation.
  2. Data Access, Retention, Future Research. IRB applications should contain adequate descriptions of all datasets that will be accessed. A list of variable names should be included. Descriptions of what will be shared with collaborators/other institutions and any planned future research uses of the data should also be described.
  3. Data Security.  Investigators are reminded that additional data security issues are triggered when conducting Internet-based research (see CPHS Data Security Guidelines and Matrix).

What do I need to know about prospective human subjects research studies involving Massive Open Online Courses (MOOCs)?

MOOCs, online courses that anyone with an Internet connection can take at no charge, are an increasingly visible aspect of the learning landscape, including here at UCB. Investigators who plan to use “big data” obtained from MOOC hosts such as EdX or Coursera for human subjects research purposes should be aware of the following:

  1. Informed Consent (or waiver/alteration). Commercial companies hosting MOOCs usually include in their terms of service that online learners’ data may be shared with others for research-related purposes. However, this does not negate a researcher’s responsibility to obtain appropriate informed consent—or to seek IRB approval for a waiver/alteration thereof—for an individual study. For example, when interventions are planned (e.g., a case-control study assigning online learners to differing conditions), a protocol and consent document(s) must be submitted for IRB approval.Consent documents should:
    • Discuss limitations to confidentiality. Consent documents should acknowledge the limitations associated with all Internet-based research (see CPHS Internet-based Research guidelines, section B.2.f for examples of suitable language).
    • Draw subjects’ attention to MOOC terms of service (TOS) documents. When online learners register for a MOOC course, they are required to click on a user agreement. The TOS contains descriptions of how their data may be used, shared with third party organizations, used for research-related purposes, and frequently stored in educational databanks on an open-ended basis. However, many users may click through agreements without actually reading them. It is therefore ethical to include in consent documents a reminder that research participants should familiarize themselves with the MOOC host’s TOS documents, using language similar to this:
      “If you have not already done so, we encourage you to read the terms of service (TOS) information (e.g., Terms of Use; Privacy Policy) provided on the [name of host] website concerning how your data may be used and shared with others in ways that are unrelated to this research study. If you have any questions about [name of host site]’s TOS, contact them directly at the email address provided in the TOS documents.”
  2. Data Access, Retention, Future Research. IRB applications and consent documents (unless waived) should contain adequate descriptions of all data sources that will be accessed and/or downloaded in order to conduct the research (e.g., postings, essays, grades) and how these data will be used. Descriptions of what will be shared with collaborators/other institutions and any planned future research uses of the data should also be included in IRB applications and consent documents (or consent waiver/alteration should be requested).
  3. Data Security. Investigators are reminded that additional data security issues are triggered when conducting Internet-based research (see CPHS Data Security Guidelines and Matrix).