Illness blogs as a data source for health sciences research – #ethics

This post is a follow up on my post The ethical use of twitter and blogs in research as well as the series of blogs posts on the ways in which breast cancer blogs are being used in research. Today I want to talk about a specific example of what I see as a problematic use of illness blogs as research data. Blogs are used as data in a variety of fields of study; however, most are not as problematic in their use as those in health related fields of study.

The particular study that I was looking at this time is:

Weber, K. M., & Solomon, D. H. (2008). Locating relationship and communication issues among stressors associated with breast cancer. Health Communications, 23(6), 548-559. doi:10.1080/10410230802465233

The first red flag in the article appeared early on when it talked about the ethics approval for the study itself. The authors state:

“After we received institutional review board approval, we collected accounts from various breast cancer message boards, weblogs, and chat rooms, and we conducted a theme analysis focused on the sources of distress voiced by contributors” (Weber & Solomon, 2008, p. 550).

It may be related to the age of the article, but today, a lot of the social media sites (e.g. message boards and chat rooms) explicitly state that the information provided is not to be used for research purposes. The act of “collecting accounts” means that the information collected was not necessarily available to the public. As such, the participants in the message boards and chat rooms specifically, had an expectation of some level of privacy. If the researchers did not seek explicit permission to use the conversations, they were unethical in the manner in which they collected the data. Of course, I can see this through the lens of social media in 2017. It is hard to think of what the researcher lens would have been in 2006/7 when they were conducting the study.

The next problematic area is:

“Quotes in the pages that follow use pseudonyms to maintain the anonymity of contributors, per institutional review board protocol … all quoted material is reproduced exactly as written, and grammatical and spelling errors were not corrected” (Weber & Solomon, 2008, p. 551).

In this requirement for pseudonyms and anonymity, the institutional review board has required that the researchers cite their data in a way that is inconsistent with current guidelines. It is with blogs that I see the biggest problem. Bloggers have chosen to share their stories in a self-published public format. Not attributing their words most likely does not align with the desire of the blogger. If the text had been composed into a book format, i.e. a pathography, then then researcher would have a clear method for citing the quotation. Since the text is a blog, the ethics boards seems to be confusing the ideas of participant privacy with public citations.

I recall being told that the rule of thumb for anonymity of participants is that the participant should not be able to be identified using basic journalistic tools. In the case of internet sources, this means that I shouldn’t be able to identify the anonymized participant through a simple search. I tried this with a few of the quotes in the paper. This one specifically:

“The ultrasound technician’s face told me it wasn’t routine… I waited a tense hour, then came back to pick up the screens and report. I walked back to my car, willing myself not to open it, to give myself another five minutes where I didn’t know. (24)” (from Weber & Solomon, 2008, p.553 – however, the actual source is a blog post written by Alunta Thornton on Tuesday June 8, 2004).

I want to highlight that bloggers have chosen to share their stories in public spaces. Blogs are publications. When you use a public data source for your research, you are expected to cite it appropriately. But for some reason, the health sciences fields specifically, feel the need to take away the identifying information. My belief is that research ethics boards (REB or IRB) in the health related fields have a heightened concern for research participant anonymity, and with that they have lost sight of public versus private data.

I read this article with mixed emotions. I found myself asking whether or not the research project itself was done in an ethical manner? And if it is not done in an ethical manner, then should I dismiss the findings? Should I be careful not to reference it?

The other question I find myself asking is, at what point in time should blogs be considered self-publications, rather than data on the internet? If it is 10 years old, does that mean it is OK that the researchers and research ethics boards didn’t understand how blogs should be used ethically in research? Is it just a matter of a lack of familiarity with the media? And frankly, in 2017, why am I still running into this issue? Why do health science / medical ethics boards today have so much trouble with allowing people to chose to NOT be anonymous in research?

Feature image by Randall Munroe (en:User:Xkcd) – http://xkcd.com/285/, CC BY 2.5, Link

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