On March 12, 2015, PRIM&R hosted a webinar titled Hot Topics in Online Survey Research: Subject Identification, Consent, and Risk, which was presented by Elizabeth Buchanan, PhD, and B.R. Simon Rosser, PhD, MPH, LP.
Online research methods are increasingly common across scholarly disciplines. Particular scientific and ethical issues arise for online researchers in the areas of recruitment, consent, and risk/benefit analyses. This webinar addressed three “hot topics” in online survey research: subject identification, models of consent, and risk/benefit analyses. Following a vibrant discussion at the conclusion of the webinar, Dr. Buchanan and Dr. Rosser agreed to respond to some of the incoming questions in writing to share with the readers of Ampersand.
1. Is the review of the terms of service (TOS) the sole responsibility of the IRB, or an institutional or PI responsibility?
Elizabeth Buchanan (EB): While reviewing TOS or end user license agreements is an extra-regulatory consideration, it is becoming more important to understand what is included and what might be significant for your research.
A consent document may indicate that the research team will destroy all project data in a number of years, and the team stores project data in storage cloud (e.g., Amazon Cloud, Google Drive, or Dropbox). Typically, the TOS for each of those services does not specify how long data will be stored; thus, data may exist beyond the time frame outlined in the consent. Or, the consent document may say only the research team will have access to study data, when a cloud service will routinely access the data for maintenance: “We may use, access, and retain your files in order to provide the service to you and enforce the terms of the agreement, and you give us all permissions we need to do so.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.