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

Drones and Improving CPR Time

A friend of mine wrote a great piece last week on recent developments in making response times faster and more efficient through technology.  Drones can be outfitted with portable AED units and can be flown to the scene of a cardiac arrest to save precious minutes while advanced medical assistance is en route.   Check out Blair’s article here.

I also highly recommend visiting his blog for musings on medicine, journalism and anything else he’s got on his mind.

Stay Awesome,

Ryan

 

 

Problems with EMS Infrastructure and Technology

This episode of Last Week Tonight with John Oliver aired last week, but I thought it was worth sharing as an irreverent but also serious aside.  I am still early in my attempt to navigate the world of emergency medicine, so I am broadly exploring all sorts of topics.  While my aim is to become a paramedic, I also acknowledge that taking a silo’d approach often leaves gaps that harm people.  When there are serious issues with how a service gets deployed to help people, you end up with a lot of avoidable mistakes, like those highlighted in the video.  I hope you had a great long weekend!

 

Stay Awesome,

Ryan

Pass the Salt – Public Health and Hidden Prophylaxis

At this stage of the game, almost everything I’m studying comes with “OH! That’s so cool!” moments.  For as weird and complex as things that we engineer are, they pale in comparison to just how marvelous our bodies are.  Through eons of evolution, our bodies have developed finely-tuned, complex systems to keep us going.  In general, our bodies are fairly robust and can tolerate a wide variety of environmental pressures because our bodies have adaptive mechanisms to bring the body into homeostasis, or physiological balance.  Without our conscious thought, our body will enact certain measures to protect us, such as breaking down bone matrix to release stored calcium, or shunting blood from the extremities during extreme cold to protect vital organs.  However, sometimes our bodies need some help.

Humans, in our marvelous capacity, migrated into all sorts of areas that we were not adapted to naturally.  Evolution selects for traits that best ensures reproductive survival in particular environmental conditions.  But evolution is slow in humans because we reproduce fairly slowly, so we often take a long time to develop protection against environmental changes.  To help mitigate harm, modern society has adopted many practices to ensure populations are protected from certain diseases and conditions.  Over time, we grow accustomed to the new norm and collectively forget what life was like before the intervention was introduced.  This is why I find public health so fascinating – there are so many systems built into western societies that we take for granted that were enacted to address specific diseases.

 

Goiters

At the moment, I’m studying for my endocrinology chapter test, so I’m learning about the complex systems of glands and hormones our bodies use.  When I say it’s complex, I mean it’s COMPLEX!  Outside of the nervous system, the endocrine system is what is responsible for keeping our body functioning.  It finely tunes our internal conditions to preserve homeostasis.  It does its best, but sometimes it needs some support.

Vitamin and mineral deficiencies can have dramatic impacts on our bodies.  One in particular is iodine deficiency.  In certain geographic areas, iodine is scarce in the food supply.  This problem doesn’t exist where diets are rich in seafood or foods grown in proximity to saltwater.  However, in the interior regions of North America, iodine is less common in the ground, so the nutrients are not absorbed into the local vegetation.  Humans need iodine in their diet for, among other things, healthy thyroid functioning.  The cells of the thyroid uses iodine in part of protein synthesis, so when iodine levels are low, protein synthesis is stalled and extra material accumulates in the tissues.  This leads to an enlarged thyroid, also known as a goiters.  This effect is so common among people with iodine-deficiency that large geographic populations exhibit similar physical characteristics.  In the United States, the phenomena was so common that the “goiter belt” was used to describe areas of the country where people commonly had the affliction.  In addition to physiological problems that arise from atypical thyroid functioning, iodine-deficiency also can result in impaired cognition.

As a public health measure, it was proposed that iodine be added to table salt, as was done in other countries like Switzerland.  Within a short amount of time, incidents of goiters declined and IQ scores were improved in goiter belts.  The practice is now common in developed nations, but according to estimates iodine-deficiency still afflicts some 2-billion people worldwide.

The funny irony with public health initiatives is that we often forget why the measures were enacted in the first place when we are no longer exposed to the diseases the prophylaxis was implemented to address.  This collective-forgetting of the harm our populations were once exposed to then leads to foolish rejections of those very policies that help keep us healthy, whether it’s rejection of vaccines or decrying fluoride in drinking water.  Legitimate questions of long-term exposure effects aside, knee-jerk reactions to chemicals and scientific illiteracy is reversing decades of public health initiatives that keep us healthy.  The hidden world of public health — when it works, you don’t even know it’s keeping you alive.

So, that’s why my table salt is iodized!  Cool!

Stay Awesome!

Ryan