Social Media and the IRB process

Social Media Venues Research and the IRB process to protect participants’ privacy

Dr. Pauline Sampson

Stephen F. Austin State University

        As we examine the use of blogs and responses to newspaper reports and well as other forms of social media communication, it is important for researchers and Institutional Review Boards (IRB) to decide on acceptable research of public data. The major areas of confidentiality and risks from disclosure are within the scope of duties for Institutional Review Boards as this responsibility provides the safeguards for research participants.  Institutional Review Board members examine research applications for minimal risk to participants.  One of the risks is the breach of confidentiality (Puglisi, 2001 ) and researchers must address in their designs, a description for preventing this.  Tom Puglisi further suggests that researchers carefully determine participants’ risks in order to minimize the risks whether social or psychological risks. 

        Some universities exempt research that uses secondary data sources as they view no interaction between humans in this form of research.  Other universities have restrictions such that no specific individuals or organizations may be identifiable in order to protect confidentiality.  All of the guidelines are found in Federal regulations (45CFR Part 46).  But there are limited studies on different venues for social media such as blogs, newspaper article responses, and social networks in connection with participants’ expected privacy. D’Innocenzo (2010) proposed a study of social networking and profile images since this is an area of limited study in order to determine why participants chose their image for placement on a social network site.  Additionally, this researcher described ways to design the research so that it would provide safeguards to participants’ confidentiality and thus hopefully gain IRB approval.  But he also fully described the challenges with the IRB requirements which made delays in the research and ultimately not conducting his study.  The challenges such as needing a more detailed account of data analysis, security concerns, and readability level of consent form were requested by the IRB and delayed the study.

        Another research for the IRB process was conducted specifically for Veterans Affairs (Shekelle, 2012) but it also relates to other social and behavior sciences.  Shekelle’s research was an analysis of the studies conducted on the IRB process. The findings showed that the topic of getting approval from multiple IRB institutions was the most challenging for researchers and had the largest number of research studies.  The next topic was conflict of interest.  Shekelle also explored the topic of quality improvement efforts and whether this constituted research that would then require IRB approval.  But this research did not examine specific issues related to social venues.

        According to the IRB Advisor, research that utilizes data from blogs, newspaper responses, and social media networks should not have the same rules for IRB approval because the expectations of privacy by participants varies depending on the venue. Further, just because someone places something on the internet that does not mean public access for any use.  For example, the recent selling of people’s private digital images for business ads has received a backlash by the owners of the private pictures.  This one example of concern was reports of Instagram changing its policy on the use of people’s photos which then led to people expressing concern over their potential use of their photos and led to Instagram executives to state that they had no plans to use people’s photos (Counts, 2012).   But their language in the policy did not indicate that privacy should be an expectation. 

        One suggestion is to examine the expectations of people who post blogs and responses online.  If a reasonable person would expect that their information was public knowledge perhaps they also is no expectation of confidentiality beyond no use of names.  This shared information may not have been expected to be used as published data.  And the confidentiality of research participants is a major concern for researchers to gather quality data as well as for IRBs to ethically safeguard the confidentiality of participants (Palys & Lowman, 2012). Gates (2011) suggested that there is a need to research how to minimize the risks for the use of public data with confidentiality issues.   If researchers quote people from blogs, there needs to be no way for a connection to be made with the original blogger, especially if a blogger’s name is used in other places on the Internet.  Eastham (2011) suggests that researchers determine who has access to a blog, is it a blog that requires a subscription, are reader comments allowed, is the blog password protected, and if the blog is in a cache form that means it has been discontinued.  Additionally, some newspaper article responses are copyrighted because of the copyright of the newspaper.  Therefore, the participants may also assume that their responses are private and protected.

        Researchers suggest that the benefit of gaining open access to participants’ honest reactions on blogs and other social venue are helpful in research and serve as potential sources to understand personal reactions to many social phenomenon or treatments. Some researchers found that participants in online formats are more willing to provide information (Frankel & Siang, 1999) and suggests that because of this, the IRB needs to have heightened concerns for privacy of participants.  Further, the Frankel and Siang suggest that IRBs need new policies that relate to internet communications and research.  Institutional Review Boards and researchers need to continue a dialogue to understand the potential benefits of research from social venues while protecting the privacy and confidentiality of participants.

Questions (please respond by adding a comment):

How can the benefits of research from public social media venues be balanced with the privacy rights of participants?

What suggestions do you have on the research that could help the IRB process?

References

Counts, A. (Dec. 18, 2012). Instagram can sell your photos, secretly put you in ads (Updated-Instagram says it won’t do either). http://www.digitaltrends.com/mobile/instagram-can-sell-your-photos-secretly-put-you-in-ads/

Eastham, L.A. (2011). Research using blogs for data: Public documents or private musing?  Research in Nursing and Health, 34(4), 353-361.

Frankel, M. S., & Siang, S. (1999). Ethical and legal aspects of human subjects research on the internet.  American Association for the Advancement of Science.  http://www.aaas.org/spp/sfrl/projects/intres/report.pdf.

Gates, G. W. (2011).  How uncertainty about privacy and confidentiality is hampering efforts to more effectively use administrative records in producing U. S. National Statistics.  Journal of Privacy and Confidentiality, 3(2) Article 2.  Available at: http//repository.cmu.edu/jpc/vol3/iss2/2.

IRB Advisor (2011).  Blog research: Fine line between public/private. Pages 106-107

Lorenzo, P. (2010) Challenges and obstacles of Internet research involving digital images in the academic environment: A case study. Empire State College State University of New York. ProQuest UMI 1486613.

Palys, T., & Lowman, J. (2012). Defending research confidentiality “To the extent the law allows”: Lessons from the Boston College Subpoenas. Journal of Academic Ethics 10(4), 271-297.

Puglisi, T. (2001) IRB review: It helps to know the regulatory framework. Observer 14(5).

Shekelle, P. G. (2012). Maintaining research integrity: A systematic review of the role of the Institutional Review Board in managing conflict of interest.  Evidence-based Synthesis Program (ESP) Center, Los Angeles, CA.