Scientists at the University of York have called for guidelines, informed by public opinion, to be made available to researchers who are considering using social media as a research tool.
Whilst there has been much debate on the ethics of using social media posts in research, a comprehensive search of studies from around the globe only identified 11 that have explored the views of social media users on employing such research methods, and as few as six which considered the views of researchers.
Attitudes from social media users varied according to the studies, from people stating that such research is essential, to those strongly against their posts being used in this context.
Social media users were generally more supportive of their content being used if the research was conducted to a high standard, was conducted by respected researchers, did not include children or vulnerable people, and was aimed at making life better for patients or communities.
Social media, such as Twitter and Facebook, are increasingly used by researchers to get a more personal and immediate view of peoples' experiences on a range of issues, such as drug use, attempted suicide, and virus outbreaks.
Much of social media is publically available and provides a large amount of useful data to researchers; this can include geo-tagging information for researching disease spread and searches for clusters of key words, such as 'virus' or 'infection.'
Dr Su Golder, from the University of York's Department of Health Sciences, said: "We can see how popular social media is becoming in academic fields due to the number of journals and discussion lists dedicated to social media research and training programmes for researchers on how to use these channels as a research tool.
"There is no doubt that social media can be very useful in research, but there are many important ethical questions that surround it. Should researchers have to ask permission from the person posting the information? Can they use non-public sites? Is it enough for researchers to anonymise any posts that they use?"
Some research institutions provide specific ethical guidelines on social media in research, but others do not have any and some will instead defer to organisations such as the Association for Internet Researchers (AoIR) Guidelines.
Dr Golder said: "Many social media users do not realise that their views could be used in research and they are therefore not posting comments and images with this in mind.
"The more social media users become aware that researchers are looking at their accounts, the greater the risk that users become guarded about posting their honest opinions or posting anything at all.
"This is particularly important for social media networks that provide valuable support networks across a range of issues, such as channels dedicated to information for new mothers, advice for cancer patients, and recovering alcoholics.
"It is therefore important that consistent and universal guidelines are produced that are informed by the views of social media users and that this becomes standard practice in ethics approval processes at universities and other research institutions."
More information: Su Golder et al. Attitudes Toward the Ethics of Research Using Social Media: A Systematic Review, Journal of Medical Internet Research (2017). DOI: 10.2196/jmir.7082
Provided by: University of York