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fb research, ethics, and informed consent

Okay. I do have to say that I’m in a little bit “I told you so” about the recent news on FB allowing researchers to manipulate your news feed. It is almost as if I was talking about something similar not too long ago…:

But it comes out in subtle ways when academics and/or journalists engage with the work of marginalized people on the web. Since obviously, everything on the web is public by default. Combined with the idea that many people have that any marginalized person talking about our lives automatically equals a public, political, social justice-esque expression. And that these can be consummed for research articles, dissertations, newspaper articles, whatever without necessarily gaining consent or, in quite a few cases, even crediting the creator and, the worst, outright stealing ideas and words.

Now, the situation I’m discussing here is actually farther reaching than the ethical stance taken by Slate. The FB situation actually involves people’s ‘private’ news feeds and (possibly) private posts.

The Slate article takes a slightly different approach than my previous post, which was more focused privacy. Notions of privacy are key in the outrage over FB’s experiment, mainly because users of FB definitely feel like they have a reasonable expectation of privacy (see the many controversies over FB and privacy). It is important to note that no matter what privacy options you choose on FB, nothing will protect from surveillance from FB itself. And don’t think that FB is the only large tech company doing this. Google+ would be doing this if they could figure out how to get people to actually use it after coercing us into getting accounts.1

Anyway, I’m mainly motivated by the Slate article because it is the first one I’ve read in a while that brings up the issue of informed consent regarding online research involving human subjects. Slate attempts to make their argument based on some law in the US concerning research and the general intent of research ethics and informed consent. Their argument hinges on the potential impact/harm of research requring informed consent.

Except that this view is too narrow by far. First, the notion that we should allow laws to guide our ethical decisions is ridiculous. This is not a chicken/egg scenario: our ethics (or lack thereof) is part of what motivates laws. And most laws do an imperfect or inadequate job of capturing ethics. Second, the definition of ‘harm’ here is too individual and direct. The line, for them, where informed consent becomes necessary is when the research directly makes you ‘sad’ (or whatever tangible harm).

I mentioned on Twitter yesterday that these sorts of discussions have been happening in marginalized communities for quite some time. The current understanding of ‘informed consent’ within research ethics generally precludes any notion of systemic damage or exploitation. Yes, there are some provisions for dealing with marginalized communities, but a lot of academics truly view the current ‘grey’ area of online research as a way to take ethical shortcuts for ~studying~ with marginalized communities.

I’m not too surprised that Slate wouldn’t tackle this aspect of informed consent, given that (perhaps) the only group of people with worst digital research ethics are journalists (although, from certain perspectives the two groups are indistinguishable). Slate takes issue with the Terms of Service providing adequate consent to be a research subject for FB, scholars, etc, but doesn’t follow this to the natural conclusion…

When I post something on this blog, does this count as adequate ‘informed consent’ for my words/ideas/experiences to be used in any and all forms of research by academics and/or journalists? The frequent response from most IRBs and ethics boards is “yes”.

Now, the feeling I get from a lot of the discussions I’ve been in about this, is this: if academics/journalists want to use my posts as a way to engage my ideas then this is maybe okay. But if academics/journalists are using my posts to study me as a member of some population, then probably not okay. One is about my work and the other is about studying me as a human being.

Then again, this is just my feelings about the distinction. I have several friends/acquiantances who’ve been so burned by journalists and academics that they don’t want any of them to interact with any of their work. In part because they aren’t the actual target audience but mainly because of the unethical behaviour of so many of them when interacting with marginalized people online.

And a portion of the harm, here (thus invoking the need for informed consent), is systemic not individual. It feeds into a system whereby the work/lives of some people are considered inherently ‘public’ and, by extension, inherently exploitable. It is dehumanizing for people who, a lot of of time, are stripped of their individuality and coercively forced into being ‘representatives’ of their community as a whole. And this kind of systemic, communal damage (via the perpetuation of stereotypes, biases, and prejudice) doesn’t appear to be an important factor when considering whether or not informed consent is necessary.

It also feeds into a history of the bodies of marginalized people being coercively and forcefully pushed into being research subjects in the ~real~ world. But it really just seems like academics are too busy cutting corners to truly consider these ethical questions (or, heck, to even listen to some of the populate they study).

I look forward to the next study from FB/Twitter/G+/whatever that will do the same thing because science.