IRBs often review protocols in which investigators are using social media as a recruitment tool or a way to inform study participants about a particular disease. They might also use social media to keep tabs on potential or current research subjects.
All of these intersections in the use of social media and human research protection can raise ethical red flags.
“There are so many ways to use social media in research, and each of these ways brings up a different ethical concern,” says Tamiko Eto, MS, CIP, human research protection program (HRPP) manager at SRI International in Menlo Park, CA.
Here are some questions IRBs should be asking and resolving when working with protocols that engage with participants through social media:
• Is it acceptable to create a potential subject fan base?
Some researchers could use social media to set up a page that, essentially, creates a fan base for that site and its information, Eto says.
“People would ‘like’ the site and follow it, and by following it, they expose themselves and all of their information to the owner of that site,” she adds.
An IRB’s questions might include:
- Is it ethically OK to entice people to a social media site without disclosing that their information might result in a request to participate in a study?
- Is it acceptable to engage followers on social media, encouraging them to comment and participate when the primary goal is research and not disseminating information?
- What type of disclosure is acceptable when asking people to “like” or follow a research social media site?
“Sometimes, researchers do identify the site as for research, and sometimes they don’t,” Eto says. “That’s why it’s extremely important for IRBs to say, ‘Give me the link.’”
When IRBs check out a researcher’s social media site, they can see if people are commenting and disclosing personal and private information that suggests they believe the site is a private forum when it is not, she adds.
“Someone could comment, ‘I had an episode with my herpes last night,’ thinking they are in a herpes support group,” Eto offers as an example.
What investigators should do is set up these social media pages in a way that no one else can post information. It should be available simply to obtain information, she adds.
• Should investigators be allowed to pull publicly available Facebook profiles of potential subjects?
Website information and research study recruitment is very different from providing information and recruiting subjects on Facebook or Instagram. Depending on how investigators handle the social media messages, it could be intrusive or acceptable.
“In most cases, when they use that site as a source of recruitment, saying, for example, ‘We’re studying sleep disorders in menopausal women, and if you’re interested, go to this website or call us,’ it seems benign,” Eto says.
But for some studies, such as research into illicit drug use, this can be risky, she adds.
When people engage with a social media page, their every “follow” or “like” identifies them as part of that community, she explains.
Also, it is possible for researchers to visit the homepages of people they encounter on social media and learn more about them from their public profiles.
“If researchers want to develop this group of a certain type of people, then what kind of settings does an IRB want them to have to protect certain [subject] information?” Eto says.
• What is the dividing line between social media ethical concerns and subject safety ethical concerns?
“This is where IRBs have to put on their IRB hats and say, ‘These are social media ethical concerns, and these are human subjects research concerns,’” Eto says. “If it doesn’t involve human subjects research, we can’t touch it.”
Some studies that use social media do not meet the criteria of human subjects research, and IRBs should not be concerned with those, she adds.
The way to tell the difference is to ask investigators these questions:
- What data are they pulling from the social media sites?
- How and with whom will the information be shared?
- Have investigators looked over the institution’s policies regarding use of social media and research, and will they abide by those policies?
“There are multiple ways in which people want to use Facebook for research,” Eto says.
“We have a policy for our institution that is not unique,” she adds. “It includes asking for the links, reviewing those, and confirming that investigators know the rules and are abiding by the rules on each social media platform.”