We recently posted an item addressing how we can’t avoid creating analyzable data in this wired world. Whenever we scan our grocery store loyalty card, or post something online, or even start a Google search, we’re contributing to a dataset somewhere.
Can this data be used in research? What are the ethics of doing so? Human subjects are defined at 45 CFR 46.102(f) as living individuals about whom data are collected through either intervention or interaction with the individual, or through the use of their identifiable private information. Do we need to rethink our definition of human subjects, or perhaps how we consider the ethics of research, to accommodate the use of these data? Should researchers be allowed to operate under the assumption that these kinds of data are indeed to be considered publicly available?
A recent entry in the PRIM&R (Public Responsibility in Medicine and Research, which is a research ethics association) blog, Amp&rsand, discusses the use of these datasets, and points out that our old way of thinking of data and human subjects may not be appropriate in a world where datasets are routinely created online. We encourage you to read the blog post, and also to click on the links within it, for a look at some of the concerns related to research using this kind of data.