In IRB-land, we use a variation of what might be called “Notice and Choice” regarding subjects’ allowing access to their private information. We tell people up front what their private information might be used for, including in the future as well as for the current project, and then give them the choice to opt in or out.
Researchers at Stanford and MIT recently released their findings about how the concept of “notice and privacy” can be manipulated. They found that people are quite willing to relinquish private information in exchange for incentives, and how people act regarding privacy protection can differ from their stated preferences regarding privacy. (When reading this article, mentally substitute “research subjects” for “consumers.”)
The link above summarizes the research. If you’d like a copy of the full 35-page whitepaper on the topic (thank you, IRB Reviewer John Chelonis, for getting us a copy), please contact the IRB Members Blog news desk at paalediths@uams.edu.
A couple of thoughts — much of the research described was done in college students, a demographic whose adult life basically unfolded on social media. Some of the “private information” students could disclose included email addresses of their friends. The college student interns on the IRB Members Blog staff tell us that students rarely use email, so it’s not like they were being asked to disclose their friends’ deep dark secrets, or DNA. However, the findings lead us to reflect about privacy in the modern age, and to think about some IRB discussions we’ve heard about protecting subject privacy. Given the ready availability of things like, say, contact information and property and court records online, a lot of information that some people might consider “private” is already available to strangers willing to do just a little bit of digging. Also, the popularity of services such as these “find your genetic background” provided by companies that keep that genetic information and make it available for subsequent research use highlights the willingness of some people to relinquish private information. Does the evolving notion of “private” lead to any rethinking about the IRB’s responsibilities toward ensuring privacy is maintained?