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

What I Read in 2019

macro photo of five assorted books
Photo by Syd Wachs on Unsplash

Last week, I gave a highlight of the best books I read in 2019. Below, I present what I read in 2019. By comparison to 2016, 2017, and 2018, last year was a paltry year in reading for me.

TitleAuthorDate CompletedPages
1Harry Potter and the Deathly HallowsJ.K. Rowling6-Jan640
2The Bullet Journal MethodRyder Carroll31-Jan320
3Daring GreatlyBrene Brown4-Feb320
4Trumpocracy – The Corruption of the American RepublicDavid Frum25-Feb320
5DriveDaniel H. Pink4-Mar288
6TwilightStephenie Meyer10-Mar544
7The Gift of FailureJessica Lahey12-Mar304
8Better – A Surgeon’s Notes on PerformanceAtul Gawande27-Mar288
9The Graveyard BookNeil Gaiman11-Apr368
10Bad BloodJohn Carreyrou9-May352
11Atomic HabitsJames Clear23-May320
12Built to LastJim Collins25-May368
13Digital MinimalismCal Newport30-May304
14Right Here Right NowStephen J. Harper14-Jun240
15MasteryRobert Greene20-Jun352
16Complications – A Surgeon’s Notes on an Imperfect ScienceAtul Gawande25-Jun288
17VagabondingRolf Potts29-Jul240
18Becoming SupermanJ. Michael Straczynski4-Aug480
19A Game of ThronesGeorge R.R. Martin11-Aug864
20UltralearningScott H. Young31-Aug304
21Reader Come HomeMaryanne Wolf11-Sep272
22The ThreatAndrew G. McCabe14-Sep288
23IndistractableNir Eyal19-Sep300
24Permanent RecordEdward Snowden22-Sep352
25The Path Made ClearOprah Winfrey19-Nov208
Total:8924

I have a few thoughts as to why my reading rate dropped off significantly last year and what I can do about it in the year to come.

Life Pressures

Last year had a few significant pressures on my life that might have affected my desire to read. We started basement renovations early in the year, only to discover our basement’s foundation was cracked, requiring us to source quotes and opinions for repairs. This delayed our basement renovation, which didn’t finish until the summer. The protracted project weighed heavily on our minds throughout the year as we questioned whether we were making the right decisions for our home repairs, or whether we would need to make additional fixes later down the line.

Another big change for me was a change of my job at work. While I wouldn’t say it affected me as strongly as the basement renos, it disrupted my routine enough to impact my desire to focus on reading when I came home from work. Couple that with another full year as Board Chair for the non-profit I head up, and it left me with less cognitive bandwidth for self-improvement.

Podcasts and Music

If 2016 was my year of purchasing books, 2017 saw me start to utilize Libby to access the library, and 2018 was an all-out race for me to go through as many audiobooks as my brain could absorb, I felt a greater push away from books in 2019. Instead of working my way through 8-15 hours of content for one piece of work, I found the shorter format of podcasts more satisfying on my commutes. I enjoyed the variety in topics, shows, and voices.

However I also found I was drawn back to listening to music instead of information. With the sheer volume of books I’ve consumed in the last three years, it was nice to go long stretches without a goal of getting through books (or trying to learn new things) and instead allow the melodies, riffs, percussion, and lyrics sweep me away.

Book Burnout?

Overall, my rate for the year was a bit varied. I started slow in January and February, then picked back up in March. April only saw one book completed, then I found my footing again through May onward. However, October is when my wife and I traveled abroad for our honeymoon, and I never recovered my reading habit for the rest of the year.

Given that I spent most of the last three years focusing on business, personal development, and productivity books, I didn’t feel a strong desire to read those books in 2019. Even among the books I did read from that area, I found looking back that I don’t remember anything of note from those books. Neither the book’s theses nor the examples they offered have stuck with me as I enter the new year.

I’ve mentioned a few time the concept of the animated bibliography on this blog, and I think I’ve hit peak saturation for the genre. I’ve read the canon, and find that reading new books in the genre is resulting in diminishing returns; that is, I’m not really seeing a lot of new insights being offered that leaves me wanting more.

In my list last week, I commented that the books that I’m drawn to now is starting to shift away from business and productivity and more towards moral lessons found in fiction, biography/memoir, and journalistic explorations of current events. That’s not to say I won’t continue to be tempted to pick up the latest book that promises to fix my life, but it does mean that I’m intending to be more selective in what I choose to prioritize.

Assuming I continue to live a somewhat healthy life that is free from accidents, I figure that I have around 45-50 more years of life left. If I read around 3 books consistently per month, I will get another 1,650 books in my lifetime (4 per month is 2,208 books, and 5 books per month is 2,760 more books before I die). While that sounds like a lot, it’s a drop in the bucket compared to the number of books that come out each year and the books that have already been written. There is more to life and learning than being more productive or seeking more meaning in one’s life. I’ve grown to appreciate the value of storytelling this past year, and there are a lot of stories out there to sink into. If I only get access to a few thousand more stories, I should make sure they count.

Happy New Year and Stay Awesome,

Ryan

Kindness and Picking Fights Online

kindness-1197351_1920
Image by reneebigelow from Pixabay

Recently, a lot of things circulating through social media and my podcast feeds have been enraging me.  I try to mitigate these things through a number of strategies – limiting my time on social media, intentionally targeting positive messages, not reading comments, not engaging, reminding myself that it is ok to disagree about things, etc.  The hardest things for me to let go are cases where my thought-processes seem to wildly diverge from others about the framing of the same set of facts.

Initially, I wanted this blog post to be my master rebuttal.  I wanted to lay out my case for why the conclusions others are drawing from this or that event are wrong and why.  I wanted to emphasize what the important, salient points are that we should keep in mind.

But I know in my heart that would be an exercise in futility.  A blog post is easy to skip; easy to ignore.  I won’t change hearts and minds by arguing against a strawman average of the viewpoints expressed in my network of known-people.  It would be antagonistic, hostile, and unproductive towards my goals.  In all likelihood, it would backfire and entrench or alienate friends.

Instead, I will offer a different approach that I want to continuously remind myself of.  When I feel compelled to dig in my heels for an argument, I should remind myself of the following.

First, remember what Aristotle (via Will Durant) tells us about virtue and excellence.  It doesn’t matter what others say or share/post online; we are what we repeatedly do.  Excellence, then, is not an act, but a habit.

Second, turning to fiction, remember why The Doctor helps people.

“Winning; is that what you think it’s about?  I’m not trying to win.  I’m not doing this because I want to beat someone or ‘cause I hate someone, or because I want to blame someone.  It’s not because it’s fun.  God knows it’s not because it’s easy.  It’s not even because it works because it hardly ever does.  I do what I do because it’s right!  Because it’s decent.  And above all, it’s kind.  It’s just that.  Just kind.”

Series 10, Episode 12: “The Doctor Falls”

Ultimately, it’s not about what I will say, or argue.  Arguing with other people doesn’t make me a decent person; picking fights online doesn’t put me on the high road.  If I want to bring about change in people I care about, it’s important to remember to be kind.  Always be kind and help people, because it’s the right thing to do.

I recognize that being kind doesn’t give a lot of direction and can seem cowardly when meeting the systems that do real harm to the vulnerable and oppressed.  In fact, espousing kindness can easily slip into inaction or forced neutrality.  It’s hard to be prescriptive in this case at a granular level.

However, if I start with the core values of kindness and action, that what is important is doing things that are kind to others, then you can use your values as a filter for determining what you will choose to do.

Instead of arguing online, I choose to try and lead by being kind.

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

On The Bus – Hello and Thanks!

It’s been some time since I’ve had to commute on the bus.  As a student, the bus was my main mode of getting around town (and the occasional trip home), but in my post-student days, I’ve been privledged to have a vehicle of my own to commute in.

A few weeks back, I carpooled to Hamilton with my wife so that I could attend an ethics workshop at McMaster University.  After my business was done on campus, I took the bus from campus to her place of work.

I greeted the driver as I embarked the bus, paid my fare, and took a seat.  Instead of getting lost in whatever was on my phone, I took the opportunity to watch the streets as we drove by and listen to the sounds of the bus.

I was startled when I realized that I had forgotten that regular bus-riders always thank the driver when disembarking.    It was something I did back in my student days, and I was glad to see that not much had changed in the 5-7 years since I regularly rode the bus.

Given that I had forgotten this little gesture of appreciation and kindness, I wanted to take a moment in this otherwise dull blog to commit it to memory and share the sentiment.

Stay Awesome,

Ryan

The Value of Probing Assumptions

I was on a consultation call a few weeks ago about an ethics application.  The project was seeking feedback from participants about access to specific mental health information, and in my feedback to their application, I noted that their demographic question concerning the gender of the participant was probably too narrow.  The applicant asked for some advice how to address the comment.

On the one hand, they considered dropping the question as it a.) didn’t obviously connect to their research question, and b.) the literature supporting this branch of mental health was pretty well-studied in terms of incidence rates for the condition along the sex dimension, so they might not learn anything new by asking for the participant’s gender or sex.  On the other hand, if they left it in, they had to contend with whether they should use sex or gender as the focus of the question.  Since the mental health topic they were researching was a medical condition, it seemed like (biological) sex was the more salient feature, whereas my feedback suggested that if they chose gender, they would need to ensure it was inclusive.

While discussing the implications on the phone, I tried to tease out what the purpose of the study was.  Their study was collecting qualitative information about how people access information.  In the context of the demographic information, they weren’t seeking to know how a person’s sex/gender relates to the condition itself.  But, I wonder aloud, it seemed the purpose of the study was to understand how people seek information, which could arguably be influenced by one’s culture, behaviour, socialization, and experience of how the world treats them.  In that way, you would want to focus less on a person’s physiology and instead you might discover interesting differences in how a person seeks information based on their life-experiences.

The applicant noted that they started the phone call intending to drop the question from the survey, and through my line of questions and probes, was convinced to keep the question and modify it to be more inclusive.

I am not telling this story as a normative push on how we should conduct inquiry (though by reading through the lines, you should get a sense of how I feel about the topic).  Instead, I share this story as an example of why posing good questions is important to remove ambiguity and clarify thought.  One of the goals of our ethics board when we review applications is to make implied premises explicit so that we can be sure of what we take as a given when we set out to study a research question.  We often default to accepted practice and proceed with common tools, but sometimes we don’t think carefully through the implications of what using those tools means.  By leveraging my outsider status, I have an opportunity to get the applicants to explain concepts and lines of reason without assuming I share the same understanding of the material that they do.  This helps to spot those areas where the project is weakened by unsupported claims and assumptions.

Stay Awesome,

Ryan

Beware the Salesman

Podcast ads.

Hacks and routines.

Blogs that promote and sponsored content.

Look to the incentives and see if they align with your own.

What’s in their interest might not be in mine.

This might change over time.  Sources that don’t sell might eventually sell.  There is a future where I might try to sell you something or join my mailing list.

Beware the one who sells you solutions for problems they don’t have.

Beware the sponsored content coming from authorities you like.

Beware the salesman who makes universal the particular.  The one who puts everyone into a clearly defined box.  The one who makes money on your problems.  The one who charges to join their community.

I’m not saying these are all inherently bad things; merely that they merit many second thoughts.

Secret shortcuts don’t exist.  If they were valuable, they wouldn’t be secret and they wouldn’t be a shortcut – they would be the norm.

Everyone has to make a living.  Everyone has something to sell.  But not everyone has your best interest in mind.

Caveat emptor.

Stay Awesome,

Ryan