We are all research subjects — what does this mean for IRB reviews?
Recent posts on this blog have highlighted the fact that, in the final analysis, we are all basically research subjects creating research data, whether we know it or not. Sometimes our environments also get manipulated without our being aware — does anybody remember the Facebook study that caused much wringing of hands?
And here’s a news report of another study involving unaware subjects, this time about a potentially sensitive subject, credit card debt. While the study was very low risk, it does raise some potential ethical issues. The approximately 14,000 participants did not know they were participating in research, and therefore did not know that their credit card debt data was being used for research purposes. They were also subject to various kinds of low-risk research interventions, with messages about credit card usage delivered to them in different ways.
This kind of research raises questions about research subject privacy and data confidentiality. If we are constantly making our personal information available for research purposes without our knowing it, should the IRB’s thinking about the confidentiality of data knowingly contributed for research evolve at all? What do you think?