alaina cyr

This morning I did a 5-minute “Ted Talk” on the ethics of social media research for my colleagues at ELLICSR. Below is the transcript, with some added resources for further reading.

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Good morning everyone.

In addition to working here at ELLICSR, I’m also doing a masters in health services research at the Institute for Health Policy, Management and Evaluation at U of T. It’s a thesis program, and it should come as no surprise that my research project is on social media and health.

In thinking and reading about doing social media research, I’ve come across some pretty interesting points about the ethics of doing research over social media that I didn’t really think about before starting the program.

For any research involving humans, the Tri-council Policy Statement provides guidelines on conducting ethical research. In essence, it has three parts: ensuring participants have given informed consent to be studied, not doing unnecessary harm, and treating participants with respect. Adhering to these principles is just as important when conducting an online study as it is when conducting any other research.

So for most research to be considered ethical, a researcher typically gets written permission from the participant to collect their information before any data collection takes place. This standard holds up whether the research takes place in person or virtually.

In special cases, some studies may be exempt from collecting informed consent: for example, observational studies that occur in public areas, where it’s not feasible and maybe even detrimental to the research, to collect informed consent from every, single person observed. Often, these studies are OK by Research Ethics Boards so long as no identifying information is collected or reported, that you can’t identify the people being observed by the description detailed in the study results.

Similarly, in internet research, observational studies can also be conducted without collecting informed consent from every participant, so long as the information is public. For example, when collecting information from Internet chat rooms, it would be impossible to collect informed consent from everyone when people can freely pop in and out of the conversation at any time, and oftentimes, people use screen names that are not readily traceable for following up.

But what exactly does “public” mean when it comes to the internet? The boundaries are not clear when nearly anything posted online is retrievable to some extent.

Unlike clinical research which can impact a participant’s physical functioning through side effects or adverse reactions to an intervention, the dangers of internet research are primarily informational: that is, that personal information may become public. While this may seem like a low risk, we’ve all heard the news stories of devastating things that have happened to people when their private information got into the wrong hands.

Of course, researchers will do what they can to protect the information and identity of their participants, but again, when the internet is a vast collection of searchable data, it is difficult to ensure complete protection and anonymity is maintained now and in the future. Careful planning and extra precautions are essential.

Proprietary social platforms change their systems to meet their needs, when they feel like it. For example, up until very recently, most Twitter searches would only turn up tweets from the past week or so. Researchers publishing data from 2009 could feel relatively safe publishing direct quotes, simply by removing identifying information like usernames and avatars. I have come across research papers that have done exactly that. But Twitter’s announcement last month that every single public tweet ever published on the site was now searchable means that we can now go back and identify those people who were quoted in earlier studies, simply by searching for the quote. To make ethical matters worse, most of these research studies did not collect informed consent from the people they quoted in their studies. No doubt, most of us in this room would feel violated if they were one of those users.

Maybe those researchers weren’t using their best judgement to begin with, but their follies highlight the importance of treating your participants with respect. There are things we do as researchers to strengthen our research, but these should never be at the expense of our participants’ trust, reputation, or confidentiality.

At the end of the day, people don’t post on Twitter or Facebook expecting that what they say will be analyzed by a researcher. Just because the entire world can access information doesn’t mean it’s OK to use it in your research. To conduct ethical social media research, you must respect the user’s expectation of privacy, even if they are technically posting publicly, and take extra precautions to ensure their identities remain confidential.

Resources/references:

McKee, R. (2013). Ethical issues in using social media for health and health care research. Health Policy, 110(2), 298-301.

Hudson, J. M., & Bruckman, A. (2004). “Go away”: participant objections to being studied and the ethics of chatroom research. The Information Society,20(2), 127-139.

Boellstorff, T., Nardi, B., Pearce, C., & Taylor, T. L. (2012). Ethnography and virtual worlds: A handbook of method. Princeton University Press.