Over the weekend, I attended a virtual board meeting for engineering education. One of the reports pertained to a working-group’s findings and recommended actions to support the aims the 30 by 30 Campaign to address low representation of women in the engineering profession. This is a great initiative and I’m looking at ways we can improve our own processes to support women in STEM in our programs at the college. There was a comment that made me think, and it’s worth considering.
One of the board members expressed support for the report, but also commented that she had provided input as early as the 1990’s on this very initiative. Her comment was not meant to cast doubt over the process, but instead highlighted two important things – that this is not a new issue, and that many people have tried to make sweeping changes for the profession, which clearly hasn’t been entirely successful. Her advice was to be cautious about taking on too much scope with the recommendations, and instead to support a “divide and conquer” strategy for making targeted, meaningful actions to promote change.
I don’t hold any illusions that we will solve systemic issues overnight. If I’ve learned anything this past year, it’s that my hopes for reform are likely to fail and that instead of refinement, we should be aiming at transformative changes.
There is also another tension – on some level, this line of thinking suggests a teleological progression of progress for society and culture. I want to think that our culture is aiming at progress (“the arc of the moral universe is long, but it bends towards justice” is a powerful vision to work towards), but a skeptical voice reminds me that, like our misunderstanding of Darwinian evolution, there is nothing inherent in the progress of change that aims towards a higher, final form. A kind of defeatism can creep in when one thinks that meaningful actions do not contribute towards progress, but instead are just the spinning of our collective wheels.
I reject this defeatist view and want to aim towards a higher vision. I grant that the universe is largely amoral and unconcerned with our progress. So, instead, we must clearly define our values and principles, and take actions towards achieving these ends. The actions are neither good nor bad in an absolute sense. Rather, we mark progress with how close we come to realizing the values we want to see manifested in our lives. Meaningful actions are measured not against morality, but instead on efficacy for the outcomes. There are trade-offs and consequences along the way, and so we must be prudent. Both history and mythology have given us plenty of examples of why hubris should be avoided.
I don’t have a good answer on what meaningful actions we ought to settle on as part of our agenda. As noted, this issue has been discussed far longer than my tenure in the employment game. I’ll defer to folks much smarter than I, and try to learn from their efforts to do my part.
Since the birth of our son, my wife has joined an online mom’s group in our town. Among the various posts asking for advice or to share items for sale, there periodically comes posts from the admin notifying the group of a request for aid. Families who find themselves in a financial pinch can contact the admin to anonymously ask for support.
The other day, my wife saw one of these posts, and in reflecting on how expensive life can be with our newborn, she felt instantly connected with the call for help. The pandemic has been hard on most people, but we feel we’ve been very fortunate to have our jobs reasonably secure this last year. While I have lost two side jobs over the course of the pandemic, my main source of income allows us to be fairly comfortable.
So, without much deliberation, we picked up some gift cards for the grocery store, loaded it with funds to help with groceries for a week, and offered them to the administrator. This is on top of the automatic monthly charitable contributions I started in November.
In the moment, this had me reflecting on what it means to be a part of a community. Setting aside questions about the role of government and the problems caused by exploitative capitalism, there is a strong moral case to be found in looking out for our community neighbours. We want our communities to be vibrant and healthy. Hyper-individualism may maximize utility for you and your family unit, but I think that outlook discounts the intangible benefits we see when we pitch in to help people feel safe, secure, and taken care of. Take your pick of moral argument:
Deontological – we have a moral imperative to help those who experience suffering due to a lack of resources.
Utilitarian – the morally right thing to do is to use surplus utility to offset the suffering experienced by others.
Feminism & Intersectional Ethics – redistributing wealth, even in the short-term, helps to buttress against the effects of systems that oppress people. This also applies to those who by luck or happenstance are experiencing suffering.
Rights-based & Social Contract – people have a right to security of person, and while this right is usually handled by the state, the community shares some of this responsibility as part of the social contract; if you want to derive the benefits of living in a community, you ought to be willing to support and contribute.
Virtue ethics – charity and magnanimity are virtues of the ethical person; giving neither too little, nor to excess.
Theory of Justice – if I were not in a privileged position to feel safe and secure, I would hope that my community could help me. It is better to work to lift all life conditions and raise the floor of suffering.
In truth, I often feel like a terrible neighbour because of my social habits. I feel awkward meeting new people and making small talk, so I’ll wave at neighbours at a distance instead of striking up conversation. Over a year into living in this house and we just learned the last names of one of our neighbours (who have been fantastic the entire time we’ve lived here – dropping off gifts for our son a few times since he’s been born). Where I lack the social grace to learn about the lives of my neighbours in a meaningful way, I hope I can make up a little bit of good will that comes from answering a call from a stranger online.
Our bookclub tackled A Christmas Carol as one of the last reads for the year. It was a wonderful chat about what the holidays means to us, how things have changed over time, and what the moral lessons are from the short story.
This was my second time reading the story, so in addition to my knowledge of it from cinema (thanks largely to the Muppets), I was able to pay closer attention to the themes threaded through the story.
I noticed, for instance, that while the story is largely about redeeming one’s soul and the spirit of giving during the holidays, knowledge kept popping in. For instance, when Scrooge is haunted by Jacob Marley, Marley notes that he walks the earth as a result of not letting his spirit roam while alive. This unfinished business suggests that experiencing the world (cultivating awareness of those beyond yourself) was an important element of living a fulfilling live (after all, why would a spirit need to roam if they had a fulfilling life?).
The chains worn by Marley were a symbolic reminder of the knowledge he now possessed of his life’s actions. Each link forged by his life’s misdeeds are discrete representations of his lack of personal knowledge of his actions while alive.
Scrooge is unable to be receptive to the ghosts’ messages of redemption until he gains personal knowledge of himself by traveling to the past and understanding the choices that lead him to this point.
The Ghost of Christmas Present beckons Scrooge with “Come in man, and know me better!” Becoming acquainted with the present requires one to be present in the moment.
Scrooge’s redemption is only realized because he confronts the Spirit of Christmas-Yet-To-Come, pleading to know whether the shadows he sees are set. Why would you show these images to me if my knowledge of them won’t change what’s to come! he cries to the ghost.
I couldn’t help but draw a connection to our own problems with empathy in our charged political moment. We often lament our failures to connect with folks “on the other side.” We lack the empathy to understand their position to see how our similarities vastly outweigh our differences.
Dickens’s solution to the problem of empathy is rooted in knowledge. Yes, Scrooge is motivated initially by the desire to redeem his immortal soul and to avoid the fate of Marley. But his change of heart comes by letting his soul out to walk around and to know others. He connects with them, which in turn creates empathy and a desire to help.
It’s a delightful story that I was more than happy to revisit at this time of year.
I took a new step today in the evolution of my personal giving. For Giving Tuesday 2020, I finally set up my first set of recurring monthly donations. Now, every month the The Food Bank of Waterloo Region and the Brantford Food Bank will each receive a deposit of $10 from me. It’s a small, almost embarrassing amount to type (when I think of charitable giving, I’m thinking of impressive amounts with more than two zero’s to the left of the decimal point), but the important thing to keep in mind is a.) it’s my initial amount that I expect to grow over time as my circumstances allow, and b.) the total for the year will actually be higher than what I would normally have given.
I’ve been growing more intentional over time with my charitable giving. Many moons ago, I was involved with a program created by the Kitchener Waterloo Community Foundation called Engage. The program has since ended, but the experiences have stuck with me. If I want to live in a vibrant and thriving community, it’s important that I take the benefits and privileges I’ve accumulated to help others in different living circumstances than my own.
In philosophy, there is a thought experiment called the veil of ignorance, where if I were to be placed randomly in a society, I would obviously want to choose a position that afforded me a degree of wealth, freedom, security, and privilege. To me, this translates into a moral imperative that we should actively work to raise the living situations for all persons in our community to promote flourishing and happiness. I don’t want to live in a world where people have to rely on charity, but it’s an inescapable reality and therefore it must be confronted.
If we are being technical, charitable giving breaks down into three kinds of support, known as the three “t’s” – time, talent, and treasure. Time and talent were my first introduction to giving back to my community. It started in my various youth groups, where I would exchange my time to support a cause: raising money for Beavers/Cubs/Scouts/Army Cadets/swim club, marching in Remembrance Day parades, highway cleanups, and building a library abroad. Later, when I was but a poor student, I volunteered my talents to support causes for school and to help fundraising efforts for the HopeSpring Cancer Support Centre (and eventually I became the minute-taker for their Board of Directors). I also supported my friends with their charitable causes, such as helping with my buddy’s Headshots from the Heart videogame marathon event. As I started to transition out of my student phase of life, I began exploring the third “t” – treasure.
My history of charitable monetary giving started in my mid-20’s. I created an elaborate birthday ritual for myself in an attempt to imbue the day with significance (after 21, there weren’t any milestones I cared to look forward to). One ritual I set for myself was to make a donation to a cause I was interested in. When I was a student of the Engage program, I reflected that I wanted my charitable giving to go to “feeding bellies and minds,” and so I would make a yearly donation to the local food bank. Despite having never used it myself, I recognize the value they bring.
My first donations were in physical goods. I would save up rewards points from the grocery store, then buy as much food as I could for a few hundred dollars, and bring all the canned goods in for donation. Then I found out that their purchasing power was much higher than mine, so I switched to monetary donations once a year on my birthday.
The next evolution in my charitable giving happened a few years back when I wanted to help support the preservation of our environment. The Bruce Trail is a massive network of linked trails that allows one to hike 900km from Niagara to Tobermory in Ontario. Despite having never hiked on the trail myself (though I have ambitions to take up the activity), this seemed like a good cause to support, so I started purchasing yearly memberships. This year, I switched from a buying a membership each year to an automatic renewal system.
Switching back to the Food Bank, my next evolution in giving started in January of this year. I emailed to follow up on the Christmas drive and to ask what kind of shortfall the KW Food Bank saw. They kindly shared their yearly report, but what stuck out was a throwaway comment that they were successful with the campaign, but that the regular commitments were more important to ensure meals throughout the year. So, I decided I would eventually switch to small monthly donations that would increase over time as my circumstances allowed.
It was accelerated this summer with the BLM protests. I wanted to do more than empty social media posts, so I started to think about how I could contribute financially to important causes. A close friend of mine has created a line in his budget for philanthropy, which I took some inspiration from.
But in the Canadian context, I thought I should find a way to support Indigenous causes. Truthfully, I haven’t yet made that commitment – I’m still on the lookout for an ongoing support cause that resonates with me. I value the input of my peers, so if you have any suggestions, I’d love to hear your input.
That brings us to today. I decided to finally set up my regular payments to support these organizations that do so much good in our community. While I don’t live in KW anymore, I still feel called to help them in their mission. And since I support KW, I thought it appropriate to also give money to support the same cause but for my neighbors. The $10 per month I’ve committed is indeed small, but over the year will amount to a higher giving than my one-off donations. Also, it’s important to note that these campaigns help to raise awareness (and it feels good to help feed people at Christmas), but the need is felt year-round. The reality is that these campaigns serve as a funnel to bring donors into the organization.
This isn’t to say that I will stop giving one-off donations. A lesson I took from Engage is that it’s ok to say no to charitable asks that come your way. You do it each time you decline to contribute a few dollars at the cash register when you check-out at the store. Rather than having to give to every cause, it’s important to determine how much you feel you can give, then to be selective with where you allocate your funds. During Charitable Tuesday today, I also made one off contributions to my alma mater’s Arts student fund because I value the time and experiences I collected when I was a student. I also made an additional donation to the Bruce Trail’s latest campaign to purchase and preserve additional land in the Niagara region for the trail. I doubt I’ll ever get out to see that portion of the trail, but it’s important to enable the organization to leverage its resources to improve access for everyone (include some of my friends who I saw posting to social media from the trail this summer!).
My birthday is coming up, and I plan to give another one-off donation to the Food Bank to keep with tradition. And in time, I’ll find new ways to offer support. There is no one right way to give, but regardless of the type and degree of your impact, there will always be needs that go unmet in our communities. In addition to my monetary donations, I still volunteer where time allows, such as on the two ethics boards I serve.
Both Stats Can and Imagine Canada are seeing that while average donation amounts are trending upwards, the average donation rate is holding-to-declining over time. I hope to do my part in reversing this trend.
Thank-you for reading my story, and perhaps it might inspire you to reflect on your giving history.
When it comes to political engagement, our attention is typically drawn to issues at the federal and provincial levels. That is where the majority of our conversations centre – big events, big policy, and big money. But when it comes to politics that affects us directly as citizens, we shouldn’t forget the third level: local municipal politics. Municipal politics works quietly in the background, appearing in local papers and managing the invisible supports that allows a community to flourish. As I gain experience in life, I’ve slowly narrowed my focus from the federal to the municipal, realizing how important this layer of governance is.
Last week, our county’s council voted on whether to implement a mandatory face covering bylaw for indoor spaces. While the province has been responsible for most of the implementation of emergency and health measures, some decisions have been left up to the municipalities to determine how best to move forward. Cities and counties around where I live have begun voting in favour of enacting face-covering bylaws, often with majority or unanimous support.
Which is why I was very disappointment by last week’s council meeting. They thankfully passed the bylaw into effect, though it came at a slim margin of 6-5. Some of the dissenting votes were the result of residents contacting their Ward’s representative to express a desire to vote down the measure. Other felt it was too paternalistic for a county council to make these decisions. Some mentioned that this shouldn’t be the responsibility of the municipality, while others wanted to trust that citizens are smart enough to decide what’s best for themselves. A few also took issue with the specificity (or lack thereof) of the language of the bylaw, though when the bylaw wording was amended they still voted against.
I was happy to see my Ward’s Councillor both speak in favour of masks and vote to support the measure. In an effort to be more engaged, I wrote an email to my Councillor to commend him on his performance at Council, and to show my support for a continuation of support for the bylaw, since the bylaw was only passed with a proviso that the bylaw will expire before each council meeting unless it is re-affirmed at each regular meeting moving forward. I sent him the letter below, and I wanted to share that here as an example of how one can engage with their local politics. My Councillor responded almost immediately to thank me for my show of support and to assure me that he’s working on plans should the bylaw not receive ongoing support at future meetings.
Subject: Regarding Mandatory Mask Bylaw
I am writing to show my support and gratitude for your leadership during the council meeting this week. I thought your comments were thoughtful, forward-looking, balanced, and compassionate, and you demonstrated good leadership for the Ward.
I’m not sure what your personal emotions were during the meeting, but I doubt I would have held the same composure that you showed. In reading the emails sent to the council, I’m saddened by some of the beliefs held by my fellow citizens, especially those who purport to have medical knowledge but claim that masks are harmful.
I hope, given the narrow margin that the vote passed, that the bylaw isn’t defeated in the next few meetings due to the grumblings of people who don’t care enough about all of us to be a little uncomfortable when out and about. Please continue with your support of the Medical Officer’s direction to help keep us safe.
I hope you and your family are keeping well!
Provincial and Federal politics might be more glamorous, but remember that municipal politics affects us in many important ways.
My Monday post this week is late. Instead of trying to cobble something together, I will share this video from T1J’s YouTube channel published last week. It gave me a lot to think about.
“Now these stories are very complex and nuanced, and American schools generally do a bad job of teaching Black history. But the point I’m making is, it’s not true that Martin Luther King Jr. did some peaceful protests and gave some speeches and then single-handedly changed everyone’s minds. The progress we’ve seen is due to the combined efforts of Black leaders and activists throughout history, some of whom disagreed on the best path forward, but all of whom contributed towards shaping the world and making the world a little better for people of color. Another thing people fail to realize is that Martin Luther King Jr. was very unpopular during his time. So, whether or not something is palatable to the white masses is not a good measure of whether it is the right thing to do.”
I apologize for the late post this week. I had a few ideas kicking around in my head, but given the updates, I felt this ramble-post was a better attempt to capture some of the zeitgeist, rather than my usual attempt to feign some sort of authority on whatever it is I’m trying to accomplish on this site. Maybe I’ll rant another time about the scummy people who are profiteering through the COVID-19 scare.
Most of the information circulating concerns how an individual can help protect themselves from contracting the virus. Obviously this information is spread around not to protect any one individual, but because it’s the government’s attempt to flatten the curve and ease the economic and public health downsides to the current behaviours of people, from clogging up emergency rooms with sniffles to wholesale runs on items in the grocery store.
I’m not entirely sure what I should write about this week. It’s pretty hard to form a coherent thought when the majority of my bandwidth is occupied with keeping up with the shifting narrative around what’s going on. Thanks to technology, information (or misinformation) spreads quickly, and we are seeing multiple updates per day as a result. At my place of employment, they took the unprecedented step of shutting down face-to-face curriculum delivery. Unlike the faculty strike from Fall 2017, the College is working to keep the educational process running. While it may be that in the School of Engineering it can be impossible to replicate lab or shop time, the majority of faculty are working hard to translate their delivery to an online format.
So far, our employer has done a good job, in my opinion, with taking prudent steps to a.) keep people meaningfully occupied in their work so that no one has to lose their salary, and b.) do its part to stop the spread of the virus. I’m not saying that things couldn’t be better, but given the circumstances they’ve done a good job.
I’ve been thinking about the purpose of social isolation as a pandemic response. As I said above, the point is less about protecting oneself and is instead about protecting hospitals from being overwhelmed. If we’ve learned anything from countries around the world that are going through the worst right now, it’s that it becomes impossible to protect our vulnerable when there is a shortage of hospital beds. Hospitals are having to triage patients to focus on saving those who can be saved, who have the highest chances of recovering.
It is because of this that I’ve been thinking about the concept of a “brother’s keeper.” It’s not necessarily enough that governments or citizens remain mindful about the well-being of our vulnerable populations. Oftentimes while we are focusing on immediate dangers before us, we tend to not anticipate higher-order consequences of our policies or decisions.
Closing schools is great in theory – children are rabid spreaders of contagions, whether they are actually symptomatic or not, which means they infect their parents (some of whom are front line medical workers). But when we close schools, you have second order consequences that parents struggle with childcare, or children living in poverty lose access to food that is supplied at school.
When you close borders, you stop carriers of the virus from entry. But it also means that our international students (who are in some cases being vacated from post-secondary residences as school’s work to limit social contact among students) have no where to go. Airports are limiting international travel and the cost of purchasing tickets are skyrocketing. By them being in a foreign country, these students are vulnerable and caught in difficult positions on how to keep themselves safe.
By shutting down public spaces, you are helping to keep people from accidentally infecting each other. But when you close down businesses such as restaurants, you cut off people from the economic means they need to support themselves. Sure, the government is offering assistance to persons and businesses alike, but that will provide little comfort to people who can neither travel for groceries, nor pay for the supplies they need.
And let’s not forget what panic purchasing is doing to our supply chain – leaving store shelves cleared out of supplies, which means folks like the elderly are left without.
The hardest part I’m finding in all of this is the feeling of being powerless. You can’t control other people, and so you are forced to anticipate their moves to ensure you won’t be left without. But it’s this kind of thinking that leads to more drastic measures being taken. The virus also makes you feel powerless because you feel like an invisible stalker is coming for you – you don’t know who will be the final vector that leads to you. And you aren’t totally sure if our ritualistic hand-washing and hand-sanitizing is actually keeping us safe, or merely providing comfort. You can’t predict the future, and you can’t be sure you’re doing everything you can; you always feel like there is more you could be doing.
This reminds me of the story of the tinfoil house and pink dragons. A person covers their house in tinfoil, and when asked about it they say it keeps the pink dragons away. When asked if it works, the person shrugs and says “I don’t know, but I haven’t been attacked yet.” Of course, asking “if it works” is the wrong question here because there are no pink dragons. But as Taleb tells us in his book about Black Swans, there are always those highly unprobable events with massive downsides that we don’t see coming. Public policy and budgets are created to deal with clear and present dangers, and those policies and budgets are eroded when it’s felt that the money is not being allocated optimally. Therefore, you run into problems where you are never sure if the resources you spend to prevent something actually works – it’s really hard to prove causality in something that never happens.
Instead, we often are left to scramble to try and get ahead of trouble when we are already flat-footed, which means that our vision narrows as we focus on the fires in front of us that needs to be put out. Fighting fires is great (even heroic at times), but often the measures we take to deal with crisis have unanticipated second-order consequences that become difficult to deal with.
I’m not sure how to deal with this, but it makes me wonder about being my brother’s keeper, and what I can do to protect them.
From time to time, I catch myself thinking some pretty stupid stuff for entirely dumb reasons. A piece of information finds a way to bypass any critical thinking faculties I proudly think I possess and worms its way into my belief web. Almost like a virus, which is a great segue.
A perfect example of this happened last week in relation to the COVID-19 news, and I thought it important to share here, both as an exercise in humility to remind myself that I should not think myself above falling for false information, and as my contribution to correcting misinformation floating around the web.
Through a friend’s Stories on Instagram, I saw the following screencap from Twitter:
My immediate thought was to nod my head in approval and take some smug satisfaction that of course I’m smart enough to already know this is true.
Thankfully, some small part at the back of my brain immediately raised a red flag and called for a timeout to review the facts. I’m so glad that unconscious part was there.
It said to me “Hang on… is hand-sanitizer ‘anti-bacterial’?”
I mean, yes, technically it is. But is it “anti-bacterial” in the same way that it is getting implied in this tweet? The way the information is framed, it treats the hand-sanitizer’s anti-bacterial properties as being exclusively what it was designed for, like antibiotics. For example, you can’t take antibiotics for the cold or flu, because those are not bacterial infections but viral infections.
According to the author on the topic of alcohol-based hand sanitizers (ABHS),
There are some special cases where ABHS are not effective against some kinds of non-enveloped viruses (e.g. norovirus), but for the purposes of what is happening around the world, ABHS are effective. It is also the case that the main precaution to protect yourself is to thoroughly wash your hands with soap and water, and follow other safety precautions as prescribed.
The tweet, while right about the need for us to wash our hands and not overly rely on hand-sanitizers, is factually wrong generally. Thanks to a mix of accurate information (bacteria =/= virus) and inaccurate information(“hand sanitizer is not anti-bacterial”), and a packaging that appeals to my “I’m smarter than you” personality, I nearly fell for its memetic misinformation.
There are a number of lessons I’ve taken from this experience:
My network is not immune to false beliefs, so I must still guard against accepting information based on in-group status.
Misinformation that closely resembles true facts will tap into my confirmation bias.
I’m more likely to agree with statements that are coded with smarmy or condescending tonality because it carries greater transmission weight in online discourse.
Appeals to authority (science) resonate with me – because this was coming from a scientist who is tired of misinformation (I, too, am tired of misinformation), I’m more likely to agree with something that sounds like something I believe.
Just because someone says they are a scientist, doesn’t make the status true, nor does it mean what they are saying is automatically right.
Even if the person is factually a scientist, if they are speaking outside of their primary domain, being a scientist does not confer special epistemological status.
In the aftermath, the tweet was pulled and the person tried to correct the misinformation, but the incident highlights that the norms of Twitter (and social media more broadly) are entirely antithetical to nuance and contextual understanding.
It’s interesting how much information spread (memetics) resembles pathogen spreading. If the harmful thing attacking us is sufficiently designed to sidestep our defenses, whether that’s our body’s immune system or our critical thinking faculties, the invading thing can easily integrate within, establish itself within our web, and prepare to spread.
The one thing that really bums me out about this event is the inadvertent harm that comes to scientific authority. We as a society are caught in a period of intense distrust of the establishment that is coinciding with the largest explosion of information our species has ever seen. The result of this is not that good information is scarce, but rather the signal-to-noise ratio is so imbalanced that good information is getting swept away in the tide. If people grow distrustful of the sources of information that will help protect us, then forget worrying about gatekeepers that keep knowledge hidden; there will be no one left to listen.
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:
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.
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.