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In Depth: CAD WALK Prepares for Ethics Review

(October 10, 2017) - There was a time, not too long ago, when scientists were expected to manage the ethics of their experiments without any oversight. Unsurprisingly, this didn't end well. Scientists are known for their curiosity, and sometimes that curiosity can cause them to overstep moral boundaries in search of new understandings. Now as CAD WALK prepares for its ethics review, I felt it would be good to look back on how we got to this point and what ethical concerns we in the CAD WALK project need to be mindful of.

Any research, like CAD WALK, that involves human participants requires an ethical review. It also requires that the scientists involved have training in research ethics. Naturally, I started my education on ethics the same way most people did: by watching the "classic" Adam Sandler movie Billy Madison:

Now, if you haven't seen the movie, you'll just have to trust that that scene makes sense in context. Also, you have to admit that Steve Buscemi makes any movie better. While it may seem silly to bring up Billy Madison, it is where I, at 13 years old, first came face to face with the concept of ethics. I didn't really understand what they were - I was too young for that - but I knew that the Josh Lyman-looking character was evil and that he didn't know what ethics were either, so if I didn't want to end up like him, I better learn what ethics are right quick.

Strangely enough, when I first started learning about research ethics, it was mainly by being shown examples of what not to do, and boy are there many. However, two particular experiments stick out in my memory. They are so well known that big budget movies have been made about both.

The first notorious research experiment that comes to mind is the Milgrim Obedience Experiment. This experiment is talked about in almost any university psychology course and has been made into at least two movies: the made-for-TV movie The Tenth Level (starring a young William Shatner), and the more recent Experimenter. In this experiment, volunteers were told that the scientists in charge were examining how punishment affected learning. The volunteers were told to administer a test over a intercom system to a "student" in the next room. If the student got a question wrong, the volunteer was instructed to administer an electric shock to the student. The intensity of the shock would increase with each wrong answer.

In reality, the "student" was not being shocked. What the scientists behind the experiment were really testing was whether people would be obedient to an authority even when asked to do something wrong. The scientists were checking whether the volunteers would be obedient, follow their instructions, and actually administer the "shocks" to the student. The results were, pardon the pun, shocking. All participants administered the fake shocks, and two-thirds continued to the highest voltage shocks. The participants gave these shocks despite hearing the student protest, bang against the wall, demand out of the experiment, and eventually fall silent. Not one of the participants went into the next room to check on the student. The participants' obedience to authority - in this case the authority of the scientists - terrified many and led to the experiment's designer, Dr. Stanley Milgrim, to be sharply criticized for putting the experiment's participants through serious mental torment.

While the Milgrim Experiment is remembered for being cruel, it doesn't hold a candle to what has come to be known as The Stanford Prison Experiment. Led by Dr. Philip Zimbardo, this ...let's call it an experiment, was basically a prison simulation. College students were recruited and, with a flip of a coin, were assigned the role of either a prisoner or a guard. A model of a prison was built in the basement of Stanford's psychology building, and the participants then assumed their roles.

It didn't take long for the whole situation to descend into chaos. The guards began by harassing their prisoners. The prisoners retaliated by staging a revolt. The guards then broke up the revolt by force (and with fire extinguishers). Then, the abuse and torture started. Mattresses were removed from the cells, protracted exercise were used as punishment, and troublesome "prisoners" received solitary confinement. Sanitation declined rapidly as prisoners were made to defecate into a bucket, and they were often forced to be naked as a form of degradation. After a few days, two participants had to be removed from the study due to their deteriorating mental health. After six days, the whole "experiment" was prematurely stopped. Years later, this incident became the source of a big budget movie by the same name. Sadly, Steve Buscemi is not part of its cast.

As a result of these, and other, unethical research experiments, ethical review boards now exist in every university and research centre. These boards review experiments according to set of ethical principles first set down in The Belmont Report. These principles follow three basic themes:

  • Respect for persons: This theme covers many items that you now see in research experiments, specifically explaining the experiment thoroughly and truthfully to all participants, including an explanation of the risks involved. This explanation is followed by giving people a free and informed choice as to whether to participate. Participants cannot be coerced to enter an experiment.
  • Beneficence: This theme basically covers the idea of doing as little harm as is possible to participants. This involves more than simply avoiding physical and mental abuse. It also involves making sure that the privacy of participants is protected and that any unforeseen risks are properly handled in a timely manner.
  • Justice: This theme basically boils down to fairness. Participants cannot be exploited. The benefits of the research should be shared by the same people who shared the costs of the research. Finally, participants should not be selected in a prejudiced way (e.g. having only poor people participate in the experiment when others also qualify for inclusion)

These principles have been further expanded into various laws and codes of conduct over the years and it is these more detailed rules that the CAD WALK project will have to abide by. While we prepare to address those details, let me tell you how the above principles impact CAD WALK. To do this, let us first look at how our research involves human participants.

To get CAD WALK up and running, our statistical modelling requires dynamic foot pressure measurements from a group of healthy individuals. These measurements will be collected by walking over a pressure-sensing plate as shown in the video to the left. We also require similar measurements from patients with known pathologies in order to test CAD WALK's effectiveness. Our intention to collect these foot pressure measurements from volunteers, making them participants in our research. This raises ethical questions with regards to how these volunteers are treated.

First, let's look at the respect for persons theme. To address that theme, we will sit down with each participant, explain to them the research we are doing (CAD WALK), what help we would like from them (foot pressure measurements), and how their contribution to the project will be used (in the statistical models and testing of CAD WALK). They will be informed that it is their choice as to whether they participate, and also that they can withdraw from the study at any time for any reason. Finally, since this study will take place at a hospital (Sint Maartenskliniek), we will make it clear that their choice to participate or not will have no impact on the care that they receive.

Second, we have to show that participation in CAD WALK will cause no harm. This is fairly straightforward as collecting foot pressure measurements involves very little physical or mental stress. As you can see in the video above, we simply ask participants to walk over a pressure-sensing plate, which takes very little time or effort. The greater concern here is the protection of privacy. It is our intention to share these foot pressure measurements with the greater research community. This type of sharing is commonly done to ensure that others can duplicate our results (to make sure we are not lying or falsifying results), and also to further even more research. In order to share these data, we have to make sure no participants can be identified from it. To our knowledge, a person's foot pressure measurement is not enough to identify them specifically, and we expect that to be confirmed as part of our ethical review.

Finally, we have to show that CAD WALK's costs and benefits are equally shared. This happens almost by default. The cost to the participant is minimal in both time and effort, and we hope to compensate participants for travel and parking costs (I'm currently looking into that). The benefits are, potentially, a CAD WALK system that can help clinicians diagnose foot complaints. We hope to recruit a wide variety of participants - this will make the statistical modelling more robust - and the improved diagnoses that CAD WALK hopes to provide would also benefit a wide variety of people.

So this is where we stand as we prepare for our ethical review. It is by these principles that we intend to carry out the research in the CAD WALK project. And it is our hope that these ethical standards are enough to leave you, our research participants, and Steve Buscemi, more than satisfied.

   -- Dr. Brian G. Booth

This project has received funding from the European Union's Horizon 2020 research and innovation programme under the Marie Sklodowska-Curie grant agreement No 746614.