Facebook research poses unique ethical concerns
Consent extends to friends & family
Researchers might find it tempting to collect data for socio-behavioral studies from social websites like Facebook. Their appeal is having fairly easy access and viewing a broad range of behavioral information. However, there are big ethical issues with regard to informed consent and privacy, an expert says.
"There are so many people doing research on sites like Facebook, and they're kind of blithely telling the IRB that 'People put this out there on their Facebook site and on their wall where I can see it, so it's fair game for me,'" says Montana Miller, PhD, an assistant professor at Bowling Green State University in Bowling Green, OH. Miller is a popular culture expert.
This attitude is not sound from an ethical perspective, Miller says.
The words people write on their social website walls and the photos they post are not a free-for-all. Researchers will need to obtain informed consent from the people who own the walls and photos, and their responsibility doesn't end there, she adds.
"Maybe you have decided in your study you'll get consent from all the people whose Facebook sites you include in your study, and then you start collecting data," Miller says. "What about all the people you didn't get consent from who are writing stuff on the sites of their friends?"
This is a huge third-party issue that is not being dealt with by most researchers and IRBs, she adds.
The informed consent process in other types of socio-behavioral studies are less complex because the study subject's friends and family members will have to know about the study before they can be inadvertently drawn into it. But when researchers collect data from an Internet website, this is a passive activity that can be invisible to the subject's friends and family members.
"On sites like Facebook, I have no idea if my friend is participating in some study, so I might say something embarrassing or personal or sensitive on the friend's wall, and I do this impulsively," Miller explains. "This happens all the time; people don't want the whole world to know about it, but they don't think anybody significant is watching or that the writings on the wall are collected and analyzed as data."
These third parties have not consented to be included in the study, but their information is recorded because of their friend having provided informed consent.
"The same is true of photos posted online," Miller says. "A lot of people are doing studies of images posted on social networking sites, but what if I'm in those photos? It's a very murky and tricky area."
A changing reality
Further complicating the issue is the reality that protocols and privacy boundaries change regularly on these types of websites.
"Even an expert on the subject can't keep up with the changes," Miller says. "The privacy policies of these sites can be so difficult to read through they're almost deliberately inaccessible to the public."
IRBs need to consider and address these kinds of new technology issues by having at least one IRB member who is concerned about electronic privacy and who keeps up-to-date on this topic, she suggests.
"I get huge numbers of emails from around the country asking for advice about these issues, and I don't have time to answer all of them," Miller notes. "I go to the PRIM&R conference and try to educate people."
IRBs should send members to these sorts of workshops and lectures or at least have them check out discussion boards where these questions are raised.
"There aren't good updated guidelines readily available to people who need help," Miller says. "But there's an Association of Internet Researchers at aoir.org who discuss these things."
It's probably too much to ask the entire IRB to become educated on ethical issues related to technology and the Internet, but at least one or two members could be the point persons when these issues arise, she adds.