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

 

 

Citing Your Sources

writing-828911_1920
Image by Free-Photos from Pixabay 

While reading a post from A Learning A Day, I thought I’d keep the irony train rolling by linking to Rohan’s linked post from Derek Sivers about the perceived need to quote an idea’s source.  Specifically, I wanted to respond to this point:

2. School teaches us to reference. But we’re not trying to impress a teacher anymore. And every unnecessary fact dilutes our point.

I often reflect on the learning objectives I expect to achieve in a course lesson while teaching.  I try to parse out the meaningful things I want students to learn from rote procedural tasks that don’t serve a purpose.  The last thing I want to do is to reinforce the wrong lesson or derive the wrong conclusion from a student’s performance (e.g. did a student do well on a test because they understood the material, or because they are good at taking tests?).

Derek’s point above about references is well-taken and got me thinking: why do I want students to cite their sources?  I brainstormed a few reasons and listed them below with comments.

Reason

Thoughts

I want a student to be mindful of their research process (procedure). Having gone through writing my master’s thesis, it’s easy to lose track of references and citations if you don’t stay on top of it.  This isn’t super relevant to most assignment learning objectives, but it’s a good practice to have before launching into a bigger endeavor or capstone project.
2. I want a student to critically examine their own knowledge (what do they believe to be true facts, where did that fact come from, and why do they think it’s true). I’m not sure if making students cite their sources achieves this aim on its own, but I suppose I could use citation requirements to help guide them through this process.
3. I want a student to be mindful of idea ownership and give credit to people who have done work.

 

I’ve used this mostly in plagiarism cases where students copied work and submitted it as their own.  I try to distinguish between sloppy citing and outright theft, and I remind students that they shouldn’t get marks for work they didn’t do.  I’m still undecided if this is a rule of the academy or a legitimate thing to prevent fraudulently passing work off as your own in the future.  This point, though, is mostly relevant in academic contexts as opposed to Derek’s notes about doing this during conversations.
4. I want an easy way to see if the student did the work. This is a trick I’ve developed to see whether a student giving me their opinion is right by chance, or if they have informed their opinion by doing the course reading.  The same result could be gained if students inserted relevant information without citations, but the citations help to highlight this when I’m reading through their submission.  In other words, it makes my job easier.
5. I want to reinforce good academic writing habits. Using references is part of what it means to write academically, and is used as part of the integrity process.  This is only a good reason if my objective is to teach/reinforce academic writing for students.
6. This is the way it has always been done.

 

More cynically, requiring citations is part of the tradition, and who am I to question it?  It’s not a good reason to require it, but it is what it is.  I won’t included in the list to the left, but a more sadistic version of this is “I had to do it, so you have to (go through this rite of passage) too!”
7. I want to remain consistent with departmental policies and culture. Whether written or unstated, most departments adhere to some level of standards.  This was less the case for me in undergrad and it depended largely on the preferences of the prof.  By the time of my thesis, I ended up developing a hybrid referencing system that did not strictly follow any of the major citation methods.  I received no comments from anyone who reviewed my thesis on my citation practices.
8. It’s important to trace an idea’s lineage as much as possible to spot fabrication. If you are going to insert facts or conclusions into your work, it’s important to point to where you found them.  Without a citation or an adequate way of accounting for how you know what you purport to know, it’s possible that the information is made up.  Being able to trace these things helps, albeit this is more useful from a scholarship point of view, as I suspect a lay-reader isn’t concerned with checking a text for factual accuracy and instead takes it on authorial authority.

9.

Related – to see if a student is able to either properly reference work, or at the very least charitably restate ideas without dropping important content from the idea. This perhaps falls under sloppy citation practices, but on occasion students will misunderstand a piece of text and paraphrase or summarize information incorrectly.  Knowing where the student is drawing their source from can have pedagogical merit if you take the time to compare the student’s work with the source and discuss the divergence.

10.

Related – when an author cites their sources, a reader can use the bibliography of sources for further reading.

 

This is perhaps more for book nerds, but I love having references to be able to learn more for things that pique my interest.  This is, however, not the context Derek is referencing when he discusses giving citations during a normal conversation.  If Derek’s conversation partner was interested and want to know more, I’m sure they would ask Derek for more information.

11.

More abstractly, knowledge and academics is a web of mutually reinforcing facts, so academic writing is an extension of that reality. This one is a bit of a stretch as to why a student who is not adding to a body of knowledge is required to rigorously cite their sources in a pedagogical exercise, but I include this more epistemological point to try and be exhaustive.

12.

It’s a symbolic representation that the student (in most contexts) is not generating new or novel work/insights that creates new knowledge, but instead is remixing ideas from other sources. I think this is a good reminder of what the goal of the assignment should be (students are often far too ambitious in what they think they can reasonably achieve in x-number of pages), but I wouldn’t consider this to be an adequate reason to insist on proper citations.

13.

Like other skills, the act of referencing needs to be practiced. I’m sympathetic to this, but as Derek is implying, you should be practicing skills that transfer into other domains or that you will need.  In most instances, outside of school you don’t need to cite sources.

14.

Citing references is part of the argumentation process.  In order to build a successful argument, you must clearly express and state your premises, which includes any premises taken from the work of others (either their premises or their conclusions). I’m also sympathetic to this as I think everyone should keep in mind that arguments need to be made to help convey ideas.  It shows the logical chain from premise to conclusion and seeks to make the implicit explicit, and the unstated stated.

Other than a subset of the reasons above, a strict requirement for citations is often unnecessarily enforced in the classroom, and is almost never required outside of the academic setting.  I think there are some good pedagogical reasons to have students go through the effort  to cite their sources, but you should be intentional when teaching as to when those cases apply.  For instance, I am less strict about my students citing sources and instead I look for them to directly apply material from the course in their assignments (instead of giving me their opinions).

I enjoyed Derek’s point about how citing sources is a common trope in pop non-fiction, which sounds like a convergence on my ideas concerning animated bibliographies, or Ryan Holiday’s “15 academic studies” comment from a few weeks back.  Maybe Derek’s right – we should have more courage to integrate knowledge into our existing schema and be prepared to state things as facts instead of citing our sources.  I’m not sure I’m prepared to abandon the practice wholesale, but it has given me something to chew on.

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