At PRIM&R's 2019 Advancing Ethical Research Conference, Ivor Pritchard, PhD, discussed the relation between public, private, and social information in his session, The Secrets of Big Data: Public, Private or What? (B15). Dr. Pritchard asked, what are the risks and confidentiality provisions for social information?
First, the concept of social information can be described as neither publicly nor privately available, but information provided in controlled settings. As an example, data gathered from a classroom or an online chatroom are neither public nor private in that the subject is a) not alone and b) not everyone has access to that environment. Then, what are the risks to subjects in social experiments (experiments conducted in public settings like a park or the workplace)? It could be argued that privacy is nonexistent, even if there is confidentiality between the study team and participants. The protections an IRB may require for subjects may not necessarily prevent the participants (or observing non-participants, non-study personnel) from disclosing information publicly, and in many cases, via the internet.
I think back to an example I observed when I was a teenager: a woman at the local mall would ask random people walking by her if they wanted to participate in a survey to earn five dollars. A common issue she encountered was potential participants being concerned with being observed by passersby. Eventually she opted to take participants to a private room to take the survey. But then it seemed recruitment also suffered because subjects were less enthusiastic about leaving the area to participate than they were standing in the middle of the mall.
I find myself wondering about what survey respondents think about the privacy and confidentiality of their information and risk of disclosure and how it affects their behavior during and/or post-participation. Additionally, with the increase in data breaches across the globe over the last decade (Office of Personnel Management 2015, Google 2019) participants are increasingly concerned about the probability of their information falling into unauthorized hands. The concept of images and statements going “viral” can deter potential participants in social experiments as well.
So how can researchers and ethical reviewers hope to mitigate risks associated with lack of privacy in experiments in social settings? I believe disclosure can help increase the comfort of potential participants, leading to an increase in participation. Thinking back to the mall employee, incorporating the discussion of actual versus perceived privacy in a social experiment could have led to increased participation. Many agencies believe disclosure, pledging confidentiality, and operating low-risk surveys are fundamental to obtaining consent from participants as well as obtaining accurate and complete information (National Research Council, 19279, 2005). Studies must be able to distinguish confidentiality from informational privacy in social experiments. Participants determining whether or not to participate in a social experiment should have the opportunity to understand all elements of control over the extent and circumstances their information will be shared or withheld from others, not simply a blind confidentiality statement. Still of concern to most participants is the protection of their data after participation in a study. Even with algorithms continuing to anonymize data for privacy preservation there is still no guarantee data will not be re-identified, as we saw with the “anonymized” Netflix rating records being re-identified by Internet Movie Database (IMDb).
The issues related to social information and experiments will not be resolved easily. Determinations of appropriate privacy protections vary depending on the study. One thing is certain, however. Technology complicates the efficacy of human subjects research, whether it’s via participant use or data protection.
Sierra Verbockel, BS, MPA is the Grants and Research Associate at University of Wisconsin (UW)-Stevens Point. She has been working in research administration since 2017, beginning as a research compliance assistant at UW-Oshkosh. She also has experience in grants administration. As a former student of UW-Oshkosh, she developed an interest in research, eventually conducting her own research studies on differential association theory.
Sierra achieved her master's degree in Public Administration with an emphasis in Nonprofit Management and Leadership in addition to a Baccalaureate degree in Human Services Leadership and Criminal Justice. Her research interests include community organization and development, employment-education mismatch, generational differences in the workplace, and emotional intelligence. Those interests carried into her career, where she works to make a difference in the lives of her colleagues as UWSP moves toward a more inclusive environment. She enjoys learning from those around her and creating new, more efficient ways of being successful-both as an individual person and as a member of the UWSP collective.
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Registration is now open for PRIM&R's 2020 Advancing Ethical Research Conference (AER20), which will take place virtually. We will present AER20 as a series of shorter, half-day online events spread out over three weeks in December (December 1-2, December 8-9, December 15-16).