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Not surprisingly, the exploding social media landscape is fraught with ethical intrigue for researchers who seek to recruit human research subjects for clinical trials.
There are obvious concerns about confidentiality, informed consent, and other ethical issues, but there is also an ever-expanding database that could lead recruiters to ideal subjects for a given clinical trial. With little in the way of regulations or formal guidance for this expanding area, researchers recently outlined a practical path through this potential minefield and included a checklist for IRBs. (For more information, see summary points in this issue.)
“While the ethically relevant differences between social media and more customary recruitment techniques should not be exaggerated, these materials can help to serve as a roadmap for its potentially unfamiliar aspects and contribute to putting social media recruitment in proper ethical perspective as a valuable recruitment tool,” the authors conclude.
For further insight, IRB Advisor interviewed the lead author of the paper, Luke Gelinas, PhD, MA, a Harvard Catalyst fellow in clinical research ethics at the Petrie-Flom Center of Harvard Law School.
IRB Advisor: With regard to social media and research recruitment, is this a case where technology has essentially outstripped ethical oversight?
Gelinas: Yes, that’s my sense. You have a couple of different things. One is that you have people in industry-sponsored trials that are rushing full bore to capitalize on the opportunities that social media provides in terms of research participants. The problem is there is really no discussion of the ethics and really no regulatory or ethical guidance available to sort this out.
This motivated our project — we were sympathetic to want to promote the use of social media to recruit participants. We just think it should be done in ways that are ethical. So we really set out to provide some guidance that would allow IRBs to be more comfortable reviewing this, that would aid them in their review of social media recruiting techniques, and ultimately to help them use this [platform] both more and also better.
IRB Advisor: What are the implications of the current situation for IRBs?
Gelinas: We in the IRB community — and I sit on an IRB — have a duty to be thinking about these things more than we currently are. We are kind of lagging behind the social media space, so one thing we are trying to do with this project is get this on people’s radar in the IRB world, and give them the tools they need to adequately review social media recruitment. Because it’s not going away — social media is everywhere and we are going to see more and more research activities involving it. We in the IRB world need to start grappling with this and doing our best to catch up.
IRB Advisor: There is almost the assumption that anything on social media is not private, but when it comes to research, that is not necessarily the case. As you note in the article, “typically this information has not been shared by social media users for the advancement of generalizable knowledge and health purposes.”
Gelinas: One of the main ethical concerns is that you have people posting all kinds of stuff on social media — sometimes even stuff that perhaps they shouldn’t have. People post things that might pose risk to them, that might stigmatize them or lead to forms of discrimination. People don’t tend to worry about this too much in terms of general social media use. You see it all the time. So it’s sort of challenging when researchers get involved.
Researchers are used to being conscientious about privacy norms. They want to respect privacy and respect confidentiality, but then you have this space where people don’t seem to care at all about it. So the question is, how should researchers deal this space?
We think that researchers should at least take some caution and not magnify the privacy risk. A lot of people don’t understand the privacy risk and may struggle with how to set their privacy setting on Facebook and these other platforms. They don’t comprehend it, so researchers have some obligation to realize, if this person posted something really sensitive — which was probably a bad idea — the least I can do is not publicize it further and not magnify the chances of harm.
For example, a researcher encounters a tweet that says something like, “I am really struggling with my depression. My meds aren’t working and I’m looking for a clinical trial.” It may be OK for the researcher to reach out to this person and offer them participation in a clinical trial, but the way in which they do that could be really important. They shouldn’t send them a public tweet back that would further publicize the [original] tweet that was perhaps ill-advised. In a social media platform, every time you retweet or respond to something it could be coming up on everyone’s screens. So it may be all right to reach out to this person, but send them a private message on the side. That’s just one example of the kind of thing we think researchers should be doing in the social media space.
IRB Advisor: Recruitment of subjects is a common problem, but there may be people or groups on social media that, as you say, have some medical condition and want to get in a clinical trial. How can you ethically use social media for research recruitment?
Gelinas: It is a huge challenge, and the basic challenge is really an ethical one. Say you have low recruitment rates and the study may not enroll enough people to be adequately powered to generate generalizable knowledge. The value of that knowledge may be what justifies exposing the subjects to risk. The researcher may think it is OK to expose these subjects to risk because we are going to get this really useful knowledge. On the other hand, if we don’t get that knowledge because the studies are not recruiting enough people, then it looks like the risk to the subjects was unjustified. It’s a big problem.
IRB Advisor: In the paper, you cite the need to provide both respect for the privacy of social media users and investigator transparency.
Gelinas: In terms of actually recruiting on social media, there are kind of two ways to go about it. One way is analogous to the traditional way of using posters or flyers at bus stops or subways. You could just post advertising in online spaces giving the contact name of the researcher for more information about the study. Let social media users contact you on their own.
The other way to do this is to be more active, sort of immersing yourself in online communities as a researcher looking for people who might be a good fit for your study based on their participation in certain groups or their online activities. There may be a group for cancer survivors or cancer patients and there is really no restriction on who is participating. As a researcher, you might think if I start participating in this conversation maybe I will come across people who are good fits for my study. Both of these types of recruitment may be OK, but the more targeted type is a little bit more ethically tricky because it raises questions about whether people really want researchers “lurking” around these sites and observing people’s online behavior. That raises some ethical questions and it requires more ethical sensitivity.
Financial Disclosure: Author Melinda Young, Medical Writer Gary Evans, Editor Jill Drachenberg, Editor Dana Spector, Physician Editor Lindsay McNair, MD, MPH, MSBioethics, and Nurse Planner Kay Ball, RN, PhD, report no consultant, stockholder, speaker’s bureau, research, or other financial relationships with companies having ties to this field of study.