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

Five* Digital Tools I Use

Last week I shouted from the rooftops about reaching zero unread messages in my inbox.  This feels like a good opportunity to geek out a bit on some cool digital tools I use for my process flow.  Below are a handful of applications and services I use to keep on top of things, which supplement any physical systems I use to stay organized (like my notebook, for example).  None of the referenced products below are sponsors and I have no business ties with them.

Boomerang (Paid)

I was introduced to Boomerang for Gmail a few years back and made use of their free tier for quite some time.  However, last year I made the jump to unlock some additional functionality and allow me to boomerang more messages per month.

Seamlessly integrated into Gmail, Boomerang allows me to kick messages out of my inbox and set to return at a predetermined time.  You may have noted in a caption that I mentioned “boomeranged messages;” this is what I was referencing.  If I have messages that I want to come back to, but I don’t want them to clutter my inbox, I use Boomerang to remove them temporarily without me forgetting about it.  Boomerang has other features, such as being able to append notes to myself or asking a message to return if no one responds within a certain time frame.  All in all, a great little service that doesn’t cost much for the year.

Evernote/OneNote

I use both Evernote (free) and OneNote (Enterprise).  I don’t really have a preference one way or the other at the moment, but I tend to use Evernote for personal items (saving notes, planning blog posts, etc.) where I use OneNote for Board work and my main job.  I was urged to go paperless by my boss, so I slowly adopted the services and moved away from extra notebooks and loose papers on my desk.  Especially within OneNote, I can use the attach document feature to put “print outs” of documents within a notebook page, then use my tablet’s stylus to annotate the document with handwritten notes.

Scanbot

Speaking of embedding print outs, I started using Scanbot for Android to capture paper documents and port them into my digital notes.  I like Scanbot over the regular camera because the AI recognizes the page and will use algorithms to digitally morph distortions of the page.  Instead of requiring perfect lighting and standing perfectly over the page, I can capture documents on camera and Scanbot flattens out and crops the image for me.  I’ve also found it handy for taking pictures of overhead presentation slides, and whiteboard writing.

Pushbullet

Pushbullet has a lot of features for pushing documents across devices, but I mostly use it as a way of preventing myself from always looking at my phone.  Instead, I can avoid temptation and quickly reply to text messages from my wife before jumping back into my task.  I know myself well enough that picking up my phone is inviting a trip down the rabbit hole of distraction, so Pushbullet really helps keep my monkey brain in check.  (Note: if you’re wondering about how I avoid distractions on my computer, I use the StayFocusd extension to block website during certain hours of the day)

Trello

Month over month, I will have lots of To Do items that are left incomplete.  I used to copy them over manually to the next notebook, but over time the list grew.  Out of laziness, I started porting those tasks over to Trello for longer term storage.  Yes, I should either discard those items I’m not doing or clearing my plate by completing the tasks.  However, there are items that are not urgent and not important enough to do at the time.  Instead, I’ve set up a kanban board that allows me to move tasks from a pool to an active list, then to a complete, abandon, or hold list, depending on the status of the task.  It’s a handy way of keeping on top of tasks that are not immediately pressing and allows me to use my notebook for day-to-day pressing concerns.

There are a few other tools I’m trying out, such as Toggl, RescueTime, Microsoft Teams, and Notion, but I’ll save those for a future post.

The five-ish tools above are a few things that makes it easy for me to keep on top of several process flows for work, my personal projects, and my volunteer work.  Without them, I would be drowning in trying to keep everything fresh in my mind.  Let me know what kind of tools you use (digital or analogue) in the comments below.  I’m always interested in learning what different people have set up for themselves.

Stay Awesome,

Ryan

First “Inbox Zero” In A Long Time

For as much as I read about productivity and “tactics,” I’m not all that organized, in my opinion.  I am forced to keep track of a lot of threads in my projects by necessity of having too much on my plate, so I make use of notebooks and applications to sort, categorize, and remind myself of things.  This includes my email inboxes – if something is unread, it means I haven’t tended to it yet and need to circle back.

From time to time I hack away at my unread messages, but items will sit there for long stretches during peak deadline times.

Last week, however, I hit inbox zero for my main account for the first time in a loooooong time.

inbox zero
Let’s ignore any messages currently in Boomerang limbo…

I honestly don’t remember the last time I hit zero messages in my inbox.  It’s been a long slow process of setting up filters on messages to get rid of promotions cluttering my inbox (which I started setting up in January).  I was tired of having to constantly decide whether I wanted to open promotional messages or auto-delete.  I didn’t want to block or unsubscribe from them all since I still used the promotions on occasion, but the constant, daily deluge of 30+ messages was draining.

I don’t really subscribe to the inbox zero system per se, but when I finally cleared the last message kicking around, I stared at my empty inbox in confusion.  It was weird to see.  And I feel a slight motivation to keep on top of clearing emails.  When a number pops up in the tab, an itching anxiety kicks in to get rid of it as soon as possible.

1 message

0 message
Demon be gone!

I feel odd celebrating something like this.  I know rationally that clearing emails isn’t really a marker of productivity.  Nevertheless, I think it’s important to celebrate those times when you feel a modicum of control over your life and work (even if it’s an illusion set up by my capitalist overlords… /s).

Knowledge workers, unite!

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

Knowing When To Quit

A recent article talking about knowing when to quit/retire from teaching had me reflecting on my own experiences with quitting.  Truthfully, I can’t recall many instances where I quit something.  Often, I will drag out experiences long after they have been useful, and instead of quitting as an active decision, I’m more likely to let things fall away through neglect.  Perhaps there isn’t a strong difference between the two since my history is littered with things that I eventually stopped doing.  I suppose in my mind, the difference comes down to whether I made a decision to stop – whether I took ownership over the act.

The strongest instance where I actively made a decision was when I stopped hosting at the local karaoke bar.  I was three or four years into my tenure as a host, and for the most part I enjoyed the experience.  I had a regular crew of friends who would come in and make the night interesting.  However, towards the end, I grew to resent patrons coming in who weren’t my friends.  I worked the slowest night, so if things were quiet, we’d shut down early.  But if patrons filtered in and kept purchasing stuff, we’d stay open.  Catering to the average customer felt like a chore, rather than chumming with friends with our own song preferences and inside jokes.

I started to dislike going into work, and even to this day I don’t sing much like I did while I was a host.  I’ll grab the mic from time to time, but I don’t go out to enjoy karaoke anymore.  I still work security at the bar, but I stopped hosting all together.

I made the decision to stop hosting because a small part of me knew it was time to move on.  I learned what I could from the experience, cherished the memories it gave me, but I recognized that I no longer wanted to spend time doing it.  I think that’s the critical part in the art of quitting.  It’s not about actually quitting or the how.  Instead, it’s about recognizing when the time has come and why.

Sometimes we have to slog it out in things we hate.  We don’t quit those things because we assign value to the activity (or someone else has assigned value and we are dragged along for the ride).  But quitting is more than stopping a thing you don’t like.  It’s about recognizing when the thing is no longer of value to you; that it won’t take you where you need it to go.  It is the recognition that your time is better suited elsewhere.  The art of quitting ultimately comes down to taking an active role in how you choose to spend your time.

Stay Awesome,

Ryan