Informed Consent and the Virus of Harmful Rhetoric

person injecting someone on his arm
Photo by Hyttalo Souza on Unsplash

In the ethics of conducting research with human participants, there is the concept of “informed consent.” At its foundation, informed consent is the process of communicating a sufficient amount of information about a research project to a prospective participant so that the prospect is able to decide whether they want to consent to being a participant in a study. There is a lot of nuance that can go into selecting what gets communicated because you have a lot of necessary information that needs be shared but you don’t want to share so much information that the participant is overwhelmed by the volume of information.

When I review research ethics applications, I am privy to a lot of information about the project. In the course of reviewing the project, I have to make judgement calls about what should be included in the informed consent letters that participants read. It would be counter-productive if the participant had to read all the documentation I am required to read when reviewing an application, so we use certain best practices and principles to decide what information gets communicated as a standard, and what is left in the application.

There is, of course, some challenges that we must confront in this process. As I said, when reviewing a research project, you have to balance the needs of the project with the needs of a participant. All research, by virtue of exploring the unknown, carries with it an element of risk. When you involve humans in a research project, you are asking them to shoulder some of the risk in the name of progress. Our job as researchers and reviewers is to anticpate risk and mitigate it where possible. We are stewards of the well-being of the participants, and we use our experience and expertise to protect the particpants.

This means that one challenge is communicating risk to participants and helping them understand the implications of the risks of the research. In many instances, the participants are well aware of risks posed to their normal, every-day lived experiences and how the research intersects with it. The patient living with a medical condition is aware of their pain or suffering, and can appreciate risks associated with medical interventions. A person living in poverty is acutely aware of what it means to live in poverty, and understands that discussing their experiences can be psychologically and emotionally difficult. Our jobs (as reviewers and researchers) is to ensure that the participant is made aware of the risk, mitigate it as much as we can without compromising the integrity of the research program, and to contextualize the risk so that the participant can make choices for themselves without coercion.

The concept of informed consent is hugely important, arguably the most important component of research projects involving humans as participants. It is an acknowledgement that people are ends in themselves, not a means to furthering knowledge or the researcher’s private or professional goals. Indeed, without a respect for the autonomy of the participant, research projects are likely to not be moved into action even when research funds are available.

All of this is a preamble to discuss the anger I felt when I read a recent CBC report on how anti-vaxxer advocates are using the concept of informed consent as a dog-whistle to their adherents, and are using informed consent as a way of both furthering their awareness and raising money with well-meaning politicians and the public.

In fairness, I can see the chain of reasoning at play that tries to connect informed consent with concerns about vaccines. For instance, in the article there is a photo of supporters of a vaccine choice group with a banner that reads “If there is a risk there must be a choice.” This sentiment is entirely consistent with the principles of informed consent. The problem with this application is that the risk is not being communicated and understood properly within context, and instead fear, misinformation, and conspiracies that lead to paternalistic paranoia are short-cutting the conversation. Further, the incentive structures that are borne out of the economics of our medical system are doing little to address these fears. Because so little money is flowing from the government to the medical system, doctors are forced to maximize the number of patients they see in a day just to ensure enough money is coming into the practice to pay for space, equipment, staff, insurance, and supplies. Rather than seeking quality face-to-face time with a patient, doctors have to make a choice to limit patient time to just focus on a chief complaint and address questions as efficiently as they can.

I don’t think it’s all the doctor’s fault either. I think we as patients, or more specifically we as a society, have a terrible grasp of medical and scientific literacy. I don’t have a strong opinion about what the root cause of this is, but some combination of underfunded schooling, rapid technological innovation, growing income disparities, entertainment pacification, a lack of mental health support, increasingly complex life systems, and precarious economic living in the average household are all influencing the poor grasp people have about what makes the world around us work. Rather than being the case that we are hyper-specialized in our worldviews, I think it’s the case that “life” is too complex for the average person to invest time into understanding. Let’s be clear, it is not the case that the average person isn’t smart enough to grasp it (even if sometimes my frustration with people leads me to this conclusion). Instead, I think that people are pulled in so many directions that they don’t have the time or economic freedom to deal with things that don’t immediately pay off for them. People are so fixated on just making it day-to-day and trying not to fall behind that it becomes a luxury to have the leisure time to devote to these kinds of activities.

What this results in, then, is the perfect storm of ignorance and fear that congeals into a tribal call to rebel against the paternalism of a system that is ironically also too cash-strapped to allow the flexibility to educate people on the nature of risk. People don’t have the time and ability to educate themselves, and doctors don’t have the time to share their experiences and knowledge with their patients.

Within this gap, opportunistic charlatans and sophists thrive to capitalize on people’s fears to push their own agendas. This is why bad actors like the disgraced former doctor Andrew Wakefield and movement leader Del Bigtree are able to charge fees to profit from speaking at anti-vaccination events. I’m not saying a person who spreads a message should do it for free. What I am saying is that they are able to turn a personal profit by preying on people’s fears while doing little to investigate the thing they claim to worry about.

We must find a way to communicate two simultaneous truths:

  1. There is an inherent risk in everything; bad stuff happens to good people, and you can do everything right and still lose. Nevertheless, the risks involved when it comes to vaccines are worth shouldering because of the net good that comes from it and the risks themselves are vanishingly small.
  2. In the 22 years since Wakefield published his study and the 16 years since its retraction, there has not been any peer-reviewed credible evidence that supports many of the claims given by the anti-vaxx movement. The movement is predicated on fears people have of the probability of something bad happening to them or their loved ones. The motivation behind the fear is legitimate, but the object of the fear is a bogeyman that hides behind whatever shadows it can find as more and more light is cast on this area.

The anti-vaxx ideology knows it cannot address head-on the mounting scientific evidence that discredits its premise, and so it instead focuses on a different avenue of attack.

This bears repeating: the anti-vaxx ideology cannot debate or refute the scientific evidence about vaccination. We know vaccines work. We know how they work; we know why they work. We understand the probabilities of the risk; we know the type and magnitudes of the risks. These things are known to us. Anti-vaxx belief is a deliberate falsehood when it denies any of what we know.

Because of this, the anti-vaxx ideology is shifting to speak to those deep fears we have of the unknown, and instead of dealing with the facts of medicine, it is sinking its claws into the deep desire we have for freedom and autonomy. It shortcuts our rational experience and appeals to the fears evolution has given us to grapples with the unknown – the knee-jerk rejection of things we don’t understand.

Informed consent as a concept is the latest victim of anti-vaxx’s contagion. It’s seeping in and corrupting it from the inside, turning the very principle of self-directed autonomy against a person’s self-interest. It doesn’t cast doubt by calling the science into question. Instead, it casts doubt precisely because the average person doesn’t understand the science, and so that unknown becomes scary to us and we reject or avoid what brings us fear.

Anti-vaxx ideology is a memetic virus. In our society’s wealth, luxury, and tech-enabled friction-free lives, we have allowed this dangerous idea to gain strength. By ignoring it and ridiculing it until now, we have come to a point where it threatens to disrupt social homeostasis. Unless we do something to change the conditions we find ourselves in – unless we are willing to do the hard work – I fear that this ideology is going to replicate at a rate that we can’t stop. It will reach a critical mass, infect enough people, and threaten to undo all the hard work achieved in the past. We have already seen the evidence of this as once-eradicated diseases are popping up in our communities. The immunity and innoculations have weakened. Let’s hope those walls don’t break.

Stay Awesome,

Ryan

To-Do Kanban

Kanban

Back in January, I discussed how I set up my monthly notebook.  I’ve since updated the system and added a new process that I thought I should share.

Previously, at the start of the notebook I would collect a running series of to-do items.  Most of the items at the top of the list would be things that had been carried-over for multiple months, with a few small items at the bottom that likely were first jotted-down in the previous month.  I found that I was continuously copying out the same items month-over-month and the list was growing.  On the one hand, if the thing isn’t important enough for me to complete in a reasonable amount of time, it could be the case that it’s not important enough for me to carry-forward and that I should just drop the task all together.

Yet, I felt that some of the tasks were things I’d want to complete “one day” in the undefined future, but that I had lots of other pressing things that needed my attention first.  Or, some tasks would require a fair amount of planning or coordination, and so I would tackle it after an adequate amount of lead time.

Some time ago, I created an account on Trello, but it was sitting unused as I didn’t know what kind of boards I would find useful.  This seemed like the perfect experiment to help me remain flexible.

I set up several columns (buckets) of items.  In the far left, I labelled the list “Pool” and dump in all to do items.  Within each of the cards I can make notes or sub-lists to help keep me on track of things.  At the start of each month, if there is something I don’t want to carry forward into the new book, I put the item into the bucket.

example
An example where I grouped a bunch of items under a single heading – in this case, splurge purchases I want to make but at a time when I have the discretionary funds.

Next, is the “Planning Phase” bucket.  The beauty of Trello is I can drag cards from one column to the next, so when I’m ready to move stuff from the Pool to another phase of activity, I can easy drag-and-drop.  Items in the Planning Phase might require me to do research or make purchases in preparation to work on the project.

If no further planning is required, I move it into the “Active” column.  When a task is active, it’s something that I’m placing priority on and is meant to remind me to carve out space in my schedule to address.

ants
An example of something that requires research and ongoing monitoring, I had ants in my yard last year and I wanted to deal with them without harming the grass or affecting my dog.  Now that it’s Winter, I can’t deal with this again until Spring.

Sometimes, a project needs to be put on hold.  I created a bucket to put tasks that are underway but I’m not making active progress on.  Items in this bucket might require someone to get back to me on some action of detail, or maybe I need to wait until a future date to complete the tasks.  Whatever it is, if I don’t want to move a task back into the pool column, I place it here and make a note of why the tasks is in limbo.

“Completed” is my win column – it gives me a chance to see what I’ve crossed of my list and as the column grows, I can take satisfaction in my accomplishments.

I created an “Abandoned” column because sometimes I will choose not to complete a task but I don’t want to delete it outright.  Maybe it’s something that’s still important, or maybe I missed a window but I want to be reminded of it.

Finally, for tasks that occur regularly but infrequently, I have a column so that I can see when the last time was that I finished a task, and remind myself that it will need to go back into the active column (e.g. changing my tires, changing the furnace filter, etc.).

I’ve been using this revised system for a few months and it seems to be satisfying my immediate needs.  It both cuts down on the number of items I need to manually copy from book to book while allowing me to indefinitely store things in a user-friendly format – effectively marrying my love of analogue with the convenience of digital.

Stay Awesome,

Ryan