The Ethics of Ethical Review

My lit review is coming to an end. My beautiful, ingest knowledge constantly, lit review. I’ve read more books1 in the past two months than in the last two years combined. Having space to sit and read is an amazing thing. The most spoiled, as it were. But the time of ingesting existing information is coming to a close, and the time to start interviews is approaching. And that means ethical review of my process.

The Institutional Review Board¬†exists for good reason. We’ve done some awful shit to each other in the name of science. IRB is there to be sure human subjects are treated with dignity and in a safe manner. It is also required by many institutions to embark upon research, to get funding, and to be published. IRB has a section on its form to indicate institutional affiliation – a section which, if left blank, doesn’t allow you to submit the form. Both academic institutions and the IRB are predicated by the other.

This set up makes it nigh impossible to do “legitimate” research involving humans in the academic context2. I find this morally reproachable. I think anyone should have the opportunity to do research, so long as they do so ethically3. So what’s a robot to do?

I’m looking at having an Informal Review Board, comprised of respected folk around the area of my research, to still assess and push back on the ethics of my study. The questions around IRB are good ones – potential harm to participants, benefits, complications, etc. I would still structure around those, and publish my responses to those questions to the internet and to participants. The people on the board would be putting their own names behind the work I’m doing, which adds in a layer of accountability of me to them, and them to the world.

If I were only to go this route, the costs would be that I wouldn’t have my research explicitly tied to Center for Civic Media at MIT’s Media Lab, tho I as an individual would be. I wouldn’t be able to publish via MIT’s press. The research wouldn’t show up in academic journals. IE, it wouldn’t have the easy notoriety boost up of academic affiliation with such a respected institution. My access to get funding would also be drastically reduced.

The cost of success of the Informal approach gaining legitimacy (regardless of how the research is taken), is informal review becoming a thing which can be done. And what if someone puts people in harm’s way because their board wasn’t as rigorous as an institution which can be held accountable via traditional means? IE, someone doing research on a vulnerable population accidentally pushes personally identifying information out with their results. How would that person be held accountable?

The cost of not taking this approach is being complicit in an institutional system which locks out citizens from the process of research and contribution. And I think that is worse than the other potential costs. But I have to see what the folk who would be on my Informal Review Board say. I’m still looking for someone who is willing to push back on me, constructively but aggressively, who is also willing to be on such a board.

The balance to be had, and thanks to Mako for talking through this with me, is to do both at the same time. This would lay the path for the institutionally unaffiliated while also making use of a solid resource of COUHES (MIT’s IRB), addressing my deepest concern. To mitigate the potential harms of this approach gaining traction in worrisome ways, I’ll be working with the engine room to examine the process itself. And the issues of not having access to institutional credibility and funding will be alleviated by taking the formal route as well. Sure, it’s more work, but I think it’s worth it. I’ll publish my responses and process here in fairly short order.

1a. Book List:

  • Thinking in Systems – to gain a shared language with systems thinkers
  • The Fifth Discipline – to expand on that language, gain antedotes
  • Protocol (How Control Exists After Decentralization) – about new social structures and expectations
  • Revolutions in Reverse – what winning looks like, group creation and unification
  • Take Back the Land – internal conflict and societal skewing
  • The Future of the Internet and How to Stop It – costs and benefits of generative systems¬†
  • Poor People’s Movements – costs and benefits of scaling up

1b. Theses

2. Sure, you can work with a non-academic research lab, but even that is based upon affiliation with a formal organization, with its own expectations.

3. “Ethically” of course being a contextual term, but still one worth striving towards while also examining on a regular basis.