How (not) to teach the history of research ethics

By Os Keyes

Last quarter, I was the teaching assistant for INFO 300 - the introductory methods class in the Information School here at UW. I’ve already written a bit about thoughts stemming from conversations with the students; this is instead about conversations with the syllabus. In particular, it’s about the week we spent on the history of research ethics, and how teaching it confirmed, to me, the dangerous insufficiency of the usual way of doing so.

Anyone who has taken a vaguely-science-y college course is probably familiar with the “standard” history of research ethics. It goes something like this:

  1. In the beginning there was cowboy shit
  2. Cowboy shit led to the Nazis (or: J. Marion Sims, if your professor has a The New Yorker subscription)
  3. To avoid cowboy shit and the bad things that follow, we came up with the Nuremberg Code
  4. It turned out the Nuremberg Code had holes - just look at Tuskegee! - and so Congress blah blah blah common rule blah blah IRB.
  5. Do informed consent, eat your vegetables and go to bed on time, you little hellions.

This narrative is, with some modifications (as someone educated in the U.K, just swap out “common rule” for “Declaration of Helsinki”), everywhere. It was certainly the starting point for the INFO 300 week. But - maybe because of the last few yars of reading (particularly for my thesis), or because teaching this was my first time as the source of rather than recipient of this lesson, it calcified and surfaced the obvious and not-so-obvious issues with this history. And I began to recognise how perniciously dangerous - and conveniently dangerous - this narrative is as a starting point.

As I see it, there are two central problems: where this narrative places unethical behaviour, and where it places ethical responsibility. The unethical behaviours that appear in the standard narrative - Tuskegee, the Nazis, early gynaecological horror shows - are either long ago, far away, or both. They’re detached, in space and time, from the practices trainee researchers are involved in as they hear this narrative, or might someday be involved in as researchers. This is exacerbated by the fact that the examples are all almost cartoonishly evil. Taken together, students are taught that unethical research is undertaken by other people in other places, and easily identified when it happens.

Sometimes this is true - but much of the time, it is not. To give a handful of examples from my own experience, here are some research ethics questions I’ve run into:

  1. If I interview someone suffering from a lack of support, is it ethical to “cross the streams” and provide that support?
  2. If participants have no institutional access to information about their own medical diagnoses and treatments, should I provide them with every PDF I can get my hands on, copyright law be damned?
  3. Should I tell people who were harmed by an experiment undertaken by others that this occurred, given that they (and I) cannot do anything about the harm?

These questions sound small - but for the participants who have to deal with the consequences of my answer, they might be deeply important and consequential. And they’re nothing like the questions found in a narration of the ethicla and unethical that focuses on the absurdly abhorrent. If ethics involves case-based, heuristic reasoning, as is often suggested, recipients of the standard history are given a singularly narrow and useless set of heuristics to reason from.

The same problems appear - partnered with some new ones - with respect to the ethical, and the mechanisms to follow to ensure ethical outcomes. Taking a look at the standard history, something that stands out almost immediately is that the corrective events, which prevent research that is unethical and protect participants, are an unbroken chain of formal decisions by institutionalised bodies. Courts; committees; Congress.

Of course, this is empirically wrong in every respect; not only is it not unbroken (Terrence Ackerman argues quite convincingly that Nuremberg and the Declaration of Helsinki are fundamentally incompatible, with different understandings of not only ethics but research itself), but ethical thought and work didn’t begin with reacting to the Nazis. To the contrary: as Sydney Halpern has documented in her work on what she calls “indigenous ethics”, sciences and scientists have been thinking about ethical norms and traditions since at least the 19th century.

What these inaccuracies have in common is their effect. Specifically, that they widen the gap between “doing research” and “thinking about research ethics”. Research ethics is not treated as a thing that exists adaptively within a field, and unfolds through practice; instead it is about following formal rules adopted from on high. In the absence of formal rules, anything goes. But research ethics isn’t like this, as the mere existence of indigenous ethics suggsts: researching ethically is a practice. Far from being a single decision made by a far-away committee, the ethical valence of a project is a moving target, one that - just like the research itself - unfolds as the work does. What this means is that working ethically requires adaption to the messy, contingent and unexpected events that occur right in front of a researcher.

The conventional view of where research ethics is to be found not only fails to prepare students for this: it actively guarantees that novel ethical situations will come as a shock. And when they do, inevitably, appear, a junior researcher - having been trained to follow formal rules rather than inquire into ethics themselves - is far more likely to dismiss them than engage. Which is good for the speed of research, but the precise opposite of what a clas historicising the importance of research ethics should be enculturating.

So: what is the alternative? How else might we teach this history? My (slightly meta) answer is to begin with teaching this process; with demonstrating the standard model (which most upper-class undergrads in the sciences have been exposed to) and problematising it, just as I have done here. Draw in examples that challenge the standard narrative; emphasise, and make viscerally obvious, the uncertainty, contingency and immediacy of thinking about ethics as part of the ongoing practice and process of research.

This is certainly not as comfortable or comforting for students: it means they came to class with questions and received answers in the form of more questions. Nor is it sufficient for ethical thinking and practice. But it is, I believe, a necessary prerequisite - that students understand the history of research ethics as a living history, one that they, through their research and methods, play an active part in writing.