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

History Snippets – Demagoguery

demagogue-2193093_1920
Image by John Hain from Pixabay 

It is sometimes amazing how cyclical social and political problems can be.  While I am not pessimistic in our ability to move forward in something that can be recognized as “progress,” I do have some cynical attitudes towards our collective habit to backslide.  I realized some time ago that while we espouse enlightened positions, such as “never again,” people as a whole tend to by historically myopic and prone to letting fear get the best of them – or to quote Agent Kay “A person is smart. People are dumb, panicky dangerous animals and you know it.”

As of writing, I’m working my way through Ron Chernow’s biography of Alexander Hamilton.  Around ten-hours into the audiobook, Chernow is discussing the political maneuvering between Hamilton and New York Governor George Clinton over trying to get the newly-drafted Constitution ratified in 10 States in order to bring it into force.  The two sat on opposite sides of the federal government question, with Hamilton believing a strong central federal government was the key to sustaining the American experiment, while Clinton was distrustful of a central government superseding the power of the States.  Hamilton had a poor opinion of Clinton, believing Clinton to be only concerned with consolidating his own wealth and power, and only pandering to the populace when elections rolled around.

Chernow gives a striking description of what Hamilton feared, and in a single line spells out a looming threat we are seeing anew in our own modern political discourse.  Hamilton worried that “American democracy would be spoiled by demagogues who would mouth populace shibboleths to conceal their despotism.”

Chernow penned those words some fifteen years ago.  Whether it’s 1788, 2004, or the dawning of the neo-20’s, the fears expressed in those words caution us that we must remain vigilant against those who seek to exploit our fears to manifest their vision in reality.

Stay Awesome,

Ryan

Going Out Of Our Way To Vote

A few weeks back, my wife and I were preparing for a then-upcoming vacation.  Our voting cards had recently come by mail and I was listing off the voting information (location, date, etc.) when she realized that election day was happening while we were out of the country.  This was the first time I would be physically unable to vote on the day, so we started looking into what one does when this happens.  I had heard in the past about early voting, though never needed it.

Turns out, the early voting days would start the day after we departed for our trip (of course).

In cases like this, you need to contact your local elections office to request a special voting kit that would allow you to send in your votes early.  Thankfully the elections offices are open during the week until 9pm, so we were able to go in person to fill out the paperwork to pick up our kits and vote.  It required us to write out our candidate of choice on a blank ballot, then seal those votes in an envelope, which was then sealed in a separate envelope to track that we had voted but not track who received our votes.

I’m glad these kinds of provisions are in place to allow us to exercise our civic duties.  While we know our votes would not be missed if we had skipped this election, and even though we had to go out of our way to vote, my wife and I nevertheless feel it’s important that we do our part to show up and participate in the process.

Stay Awesome,

Ryan

Thinking and Research Habits

You can tell who has recently released a book based on who is making their way through the podcast circuit.  It’s never a coincidence if you see an author’s name pop up on the latest episodes of several shows your have saved in your playlist.  I enjoy listening to these episodes to get book recommendations, and for the most part find that the shows don’t go into too much depth with the author.

This was pointed out by a friend of mine (thanks, Wil, for smashing my illusions!) when he commented that a show I happen to listen to lacks the depth he looks for in a good podcast.  After he pointed that out, I saw it everywhere: the host of the show brings the author on, and by whatever means the talking-points get established, the show typically has the host ask 5-10 key questions that are ripped directly from the book.  It reminds me of students who skip the reading because the whole thing is covered in class.  You get a good sense of what the main points of the book are, but that’s about it.  If you’ve read the book already, you might as well skip the podcast episode.

However, there are gems in some shows, and I spotted two a few weeks back.  On two different shows, authors who had recently released books were chatting about the ideas in the book and the topic drifted to the idea-generation process.  They were short asides, but I found them fascinating to hear how these authors come up with their ideas and structure the construction of their books.

You can give the shows a listen yourself, but I’ve summarized the main points below.

David Epstein
(promoting his book Range)
The Longform Podcast, episode 348 (starts at 21:08)
https://www.stitcher.com/s?eid=62028020

How do you set up the bounds of research?  How do you delineate what you put in the book?  What should I include in the book?

  • There will be a few topics you generally know should be in, but after that you don’t know.
  • Epstein starts with a broad search down rabbit holes.  He used to think this was a bad thing and a waste of time, but now it’s thought of as a competitive advantage.  Sometimes, though, you end up with a bunch of nonsense.
  • He creates a master thought list – citation and key ideas or sentences.
  • As these coalesce into a topic, he moves like-ideas together.  When a topic emerges, he tags it with a title and creates keywords that he would use if he’s searching for it.  Then he moves similar tags together and a movie storyboard emerges where one topic flows into the next.
  • The goal is to avoid it being a bunch of journal articles stitched together.
  • It’s a road map of his brain’s exploration of the topic.
  • Unlike academics who just read journals and don’t go in-depth, he uses his journalism training to talk to the people – more will always come out in conversation than what’s included in the text.  Scientists will include interesting tidbits offhand that are related, but don’t expand on it, so it creates a thread to pull on.  It’s also a good fact-checking exercise and makes the story richer.

 

Cal Newport
(promoting his book Digital Minimalism)
Love Your Work, episode 183 (starts at 49:30)
https://www.stitcher.com/s?eid=62048017

How do you find ideas that are well-timed/timely with discourse on careers, technology, etc.?

  • He thinks, writes, and publishes all the time (especially blog posts and articles).  He’s constantly reading and testing out ideas.  He’s talking to people, having conversations, and seeing what topics emerges.  It’s a work ethic to him to constantly be reading and writing.
  • He tests out what he’s interested in and see if others are interested.  It might be foundational to something he works on over time, or it might wither because it doesn’t gain traction or doesn’t bear fruit.
  • To validate ideas:  1. He asks, “Are people talking about it, or leaving interesting comments on my blog posts?” 2. With ideas comes a sense of “mental confidence.”  He asks “Is this working for me?  Does it click as a structure to provide a workable framework for seeing the world?”
  • Over time, something will emerge and persist.  It generates advice that’s useful, more evidence comes up, and it is applicable across situations.
  • The search is opportunistic, but once something emerges, he does a deep dive. (Kadavy evokes the fox-porcupine reference from Isaiah Berlin, popularized by Jim Collins).

Stay Awesome,

Ryan

Masterclass in Political Oration – Jon Stewart

There are some people that when they speak, I will stop to listen.  We have many examples of people who are gifted public speakers, but to me few are more powerful than Jon Stewart, former host of the Daily Show.  He spoke at a House sub-committee hearing last week and so thoroughly presented his case, the bill passed unanimously.  I hope the initiative continues as smoothly through the House proper and the Senate, and is eventually passed into law, because the hypocrisy and virtue-signalling is appalling.  At the centre of Stewart’s argument is the notion that the sacrifice and bravery of the responders during 9/11 should be honoured by taking care of those who are suffering because of their service that day.

Public speaking as a skill is hard, but there is more than just vocalizing the words.  Stewart’s presentation, his ethos (he has earned the right to speak through his work), his pathos (the passion he speaks from on behalf of those he’s fighting for) and the pure logos (no one can form a devastating argument from observations the way a comedian can) all come together to give us a masterclass in political oration.

Give it a watch.  It made me feel choked up.

 

Stay Awesome,

Ryan