Facebook and research
Yesterday at the annual meeting of the Canadian Society for Bioethics, we presented a paper on the use of social media networks like Facebook (FB) in the conduct of research. The goal of the talk was twofold: first, to describe the ways that researchers use networks like FB and second, to make colleagues aware of the challenges that the use of these social networks create for ethics review boards.
In many disciplines, social networks are used as both a source of recruitment and a source of data. If you want to study persons between the ages of about 15-40, FB and other social networks are arguably a good way to reach people and a rich source of demographic and contextual data about those people. Between the three ethics boards that I’m involved with, we’ve reviewed a significant number of research protocols that involve social media networks and the numbers are increasing. Here’s an example: those who conduct research on children who are chronically ill are looking at ways of engaging participants using the social media networks that make up much of the daily life of sick or hospitalized kids. Many kids with chronic illnesses such as cystic fibrosis or childhood leukemia are often very physically isolated yet they are able to maintain an active social life through the internet and networks such as Facebook, Second Life or Twitter. These active social networks represent an opportunity that researchers are realizing and starting to access. This kind of research is not going away, but likely only going to become more common and ethics review boards need to be aware of some of the unique issues that arise in this context.
There’s lots to talk about here, but for this entry, I’ll focus on a couple of issues that arise out of the recruitment of potential participants using social media networks, specifically FB.
Social media networks are often used for recruitment of potential participants. A researcher can easily access FB groups that are created to provide a place for those with common interests or common problems congregate and connect. For example, there are, as of today, 137 FB groups for breast cancer survivors, 8 FB groups for survivors of childhood abuse and 22 FB groups for persons living with AIDS. For many researchers, these are a gold mine of opportunity to recruit research participants, by posting a recruitment notice on the FB group page or targeting all the group members with a Facebook email message inviting them to consider participating in a study.
Is this different from posting an information notice on the bulletin board of a community centre or cold-calling people? I think it is. FB is a community. That’s why people like it there. It is a virtual community in which people have friends and sustainable connections, sometimes with FB “friends” who they have never met in real life. Disclosure is the norm, a community value. It may even be more than a norm — there may be subtle or more obvious social pressures to disclose information about oneself. Post a profile without a profile picture? You’ll risk being inundated with messages from FB friends urging you to post a flattering picture of yourself. Post a profile without much information? Again, you’ll find your profile stark and even uninteresting, compared to those peoples’ profiles who post their relationship status, age, birthday, work, favourite movies, books and tv shows and photos of their life events. The temptation is very strong to adhere to the norm of disclosing plenty of personal information to your network of friends. So for a researcher to send a recruitment notice to you through FB might mean that researcher already has a significant or even a copious amount of information about a potential participant, as opposed to the researcher stapling a recruitment notice on a bulletin board and waiting to see who might respond.
For those of you who might not be familiar with FB and how much one can or cannot see about others on their profile, you might ask, “How can a researcher see information about that person’s permission?”. FB has various gradients or levels of privacy. When you create your profile, you set your privacy settings to control who sees what about you and how much they can see. Some people allow no information to be seen by persons other than those with whom they are FB friends, thus restricting access to their information to persons they know. However, some other people leave their profile “wide open”, i.e. with all their posted information visible to anyone who might happen upon it. In between these two extremes are various privacy configurations which can allow certain people to see certain things and not other things, etc. etc.
Two important points about this understanding of privacy. Our understanding of privacy outside of a social media network is reasonably clear. We close our bedroom curtains when we enter our bedroom in order to prevent neighbours from seeing in. However when we’re relaxing in our backyard, we are fully aware that our neighbours can see us then. We understand the difference, in many aspects of our daily lives, between what we are putting out there publicly and what we are holding back and keeping private. To use another example, we share information about private things like problems in our personal relationships or our opinions on sensitive issues with our very close friends quite easily but might hold back details about these kinds of private issues with acquaintances or more distant friends. We’re clear on how much we want to share with each category of friends and over time, people get very practiced at managing that. It’s clear in research that some kinds of information are private — things like your medical information and opinions are private and researchers must have explicit and clear permission before accessing those kinds of data. However on FB, it’s much less obvious what is private and what is public. It may even be confusing — confusing not just for ethics review board members who might have little insight into the community values and norms of social media networks, but also to novice FB users and overly-enthusiastic but less computer-savvy FB members who may not even be aware of how “public” their personal information really is. If this understanding of privacy is unclear to members of the social network, chances are it’s just as unclear to researchers (who may be accessing profile information without consent and without thinking that they might need consent) and to members of ethics review boards, who are already mandated with knowing about many kinds of special groups, unique methodologies and special contexts in which research occurs. Social media networks and ideas about privacy within these networks constitute yet another thing that REB members must start to understand.
In my next blog entry, I’ll write a bit more about the use of FB in research and some more implications for how research ethics reviews are conducted.
Research Ethics Blog 
you are welcome, this is a great entry to have for discussion with colleagues and students, was unable to DM since you are not following, looking forward to part 2. bacigalupe
Great post and very critical to think about these issues now. Was there any discussion of extensive online communities like patientslikeme.com? People used that site initially for rare diseases and they have passionate communities and run online surveys of their “members”.
One of the analogs you might use that is between the bulletin board and knocking on the door that exists: getting permission to put up a table outside somebody’s meeting – let’s say cancer survivors – and soliciting them as they pass in and out. It’s not too different from joining a FB group as an acknowledged outsider as long as that state is advertised.
This is a topic I have been asking many of my internet friends about. Specifically in relation to groups or communities formed as a support mechanism for those suffering the same disese or health disorder.
In my opinion it is unethical for any health professional to create a xyz health group without disclosing they are associated with a pharmacy or medical institution.