A New Year’s Wish for 2021

In 2004, at age 47 with a busy practice and three children, I started a 2-year master’s degree in Bioethics at the University of Toronto. Why? This may sound bizarre, but at that point, despite having practiced medicine for more than 20 years, I really did not understand what I did for a living. My time at U of T proved highly beneficial and I would like to share with you what I learned.

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The practice of medicine has been around in one form or another for thousands of years. Its premise seemed fairly straightforward: good people doing good things for good reasons in the hope of improving both the quantity and quality of life of others.

It might seem that such a premise would be foolproof. Afterall, what could go wrong with such a wonderful triad of good people, good actions and good intentions? 

Less than a century ago elderly patients in nursing homes were injected with cancer cells, without their or their family’s knowledge, in the hope of understanding more about cancer.

The Tuskegee Syphilis Experiment ran for four decades (finally ending in 1972!) during which black men were deprived of available literally lifesaving treatment for syphilis (again without their knowledge) in order to understand the natural progression of syphilis.

During World War II, prisoners were placed in the path of explosives in order to devise the most lethal and sublethal design for explosives to be used against the enemy in order to maximize the likelihood of Germany winning the war. It goes without saying that these extremely unfortunate individuals did not consent to such ‘studies’.

You may be asking yourself what kind of monsters would do such things? (And note that all of these events occurred within the last 100 years. We don’t even want to imagine what happened in the medieval ages and before!)

Shockingly, the people either initiating or monitoring such ‘research’ mentioned above were not monsters at all. Many had families and successful professional careers. They were researchers, scientists, experts, and medical doctors all sincerely believing that they were good people performing good research with the best of intentions, the betterment of the rest of humankind. 

What they didn’t understand, and few people did at the time or before, was that good people, good actions and good intentions are necessary but NOT sufficient to ensure that bad things don’t happen. What they failed to realise was that in any endeavour involving two different individuals or groups of individuals, the ones performing the acts must engage the other party, the receivers of such actions, using a process referred to as consent, in order to make the situation maximally ethical. 

In other words, a fundamental and core principle is that every human life is sacred and must be granted equal respect for making decisions about what is done to them, even actions designed to be beneficial. No matter what the reason or potential for good, we ought not use people like things to advance our agendas, no matter how well-meaning. 

The discipline of Bioethics arose in the 1950’s from such a principle, particularly in response to the heinous research experiments above. The concept of consent involves three aspects: 1) Capacity (the ability to make rational decisions); 2) Disclosure (the transmittal of information necessary to make decisions); 3) Voluntariness (the right to make decisions freely).

Many people have been worried about COVID. I have been much more concerned with the ethics undergirding our response to it. In particular, I refer to the issue of consent.

Rational thought plays a key role with respect to capacity in the consent process, both for the person or group offering the treatment or therapy as well as the person or group receiving it. Such rational thought requires the use of reason to justify interventions in a transparent, consistent and fair manner. Science is one of the best tools we have for accomplishing this. But it has become clear to me that there is often very little science, or consistently applied scientific principles, being used in managing this COVID crisis. Rules, protocols and theories change daily it seems. 

More worrisome still is the lack of disclosure. I have witnessed a lot of opaqueness with respect to the scientific basis for the models used for decision-making during this crisis, the predictions regarding the efficacy of the interventions (such as lockdowns, masks, etc.) and the monitoring of the actual effectiveness of interventions which have been instituted. When I ask people what a ‘case’ is, no one seems to know. When I ask a particular person what their risk is of getting or dying of COVID is, they have no idea; they are just very scared. When I ask how much they can reduce their risk by wearing a mask, again I am met with a face that has gone blank. 

Even worse, there is little acknowledgement and even less monitoring of the downside to many of our measures. All medical interventions carry risks, whether we like to admit to it or not, and it is unethical to deny or minimize them and for COVID the measures have put us at risk of: postponement of necessary treatments of other diseases; the adverse effects of social isolation and suspension of normal daily activities like working, exercising, fresh air, socialization of children, visiting elderly relatives with short life expectancies, loss of support for addictions, etc.; exacerbation of poverty; business loss and job loss in addition to the tremendous costs of sustaining the economy; increased child and spousal abuse, often in the context of increased drug and alcohol use; increasing anxiety and depression and suicide; and the list does not end here. 

But the most worrisome aspect is the lack of voluntariness. There are times when our individual civil liberties can be justifiably suspended by the government. Such situations include, for example, guilt in engaging in activities deemed illegal by prior consensus of the judicial and parliamentary systems. Another example is when one is deemed to be behaving in an unduly dangerous manner to themselves or others and they can be hospitalized for psychiatric evaluation. A final example is when one has a known, serious, communicable infectious disease, such as tuberculosis, and the authorities have the right to have you quarantined for a brief, definable time until the period of contagiousness has passed. 

But these are serious situations with very specific, time-honoured guidelines established after thorough vetting via publicly elected or appointed representatives. Suspending the civil liberties of individuals, let alone entire societies, is not to be done lightly. The benefits must be both commensurate with the seriousness of the potential harm and obtainable with no lesser intervention. I posit that the benefit of the present interventions does not justify the risks and harms that the interventions produce both now and in terms of future repercussions. I do not believe that COVID is sufficiently lethal nor serious enough a pandemic to justify such heavy-handed measures. I do not believe that these measures should be instituted without hearing from scientists who hold opinions that are contrary to the present narrative.  Free speech is critical in a free society and censoring those with alternative viewpoints is highly dangerous. We did not elect any politicians because of their platform for managing a pandemic and in a democracy the citizenry have not only the right but the duty to ask questions and request complete transparency from their elected officials in such a unique set of circumstances. We must develop a way for the electorate to have some say in how this pandemic is managed. It is too important to leave it to a few experts and politicians unchecked. Centuries of medical and political disasters should have proven that to us. Democracy may not be a perfect political system, but it has proven to be the best one we have. Let’s demand that it function as designed and not slip into a totalitarian state or a self-serving oligarchy of the world’s most rich and powerful which is only accountable to itself. 

So, for example, it is one thing to be quarantined for 2 weeks if I have known, active tuberculosis until medications become effective, but it is something else entirely to tell me who I can and cannot have Christmas dinner with in my own home when neither I, nor my invitees, are known to have any serious communicable disease at all. 

I know that everyone of us, myself included, are scared when our health or life may be at risk. But we will not be happy with the results of any interventions if we do not control our emotions well enough to be able to think and act rationally using the process of consent. We have proven that; that’s why bioethics came to exist, thank goodness. Panicking, letting fear control us, and reverting to denial and avoidance are not mature management plans in the long-term. 

I make a special appeal to those over age 55. I am 63 years of age and I feel very blessed to have made it this far and to live in a country as free and safe as Canada. But I am in the twilight of my life, whether I want to admit to that or not. Like many people my age, I do not have to worry about losing my job or business; we generally have more financial security than when we are first starting out in life. So, I believe very strongly that we need to speak up, particularly for our children and grandchildren who may not have the freedom, opportunity or wisdom to do so. We need to ask those difficult questions about the short- and long-term effects of these measures on our younger citizens. That includes physical, emotional, psychological, spiritual and particularly financial aspects. We need to come out from under our beds, stop shaking in fear, cease to be obsessed with only our personal safety and demand transparency and accountability from the experts and leaders, even though they are good people, with good ideas and good intentions! That’s ethics in action and we owe it to future generations. 

I know that in writing this article I am likely to scare a lot of people who are already very scared. I know that I am likely to irritate a lot of people who are very scared. But having obtained a degree in bioethics I feel morally compelled to do so. For far too long people turned a blind eye to abominable behaviours by believing that good people doing good actions with good intentions guaranteed good results. Sadly, without consent, they don’t. So, it is time that experts and politicians were made to face up to this reality.

Let’s each of us make a New Year’s resolution to contemplate these ideas, spread the word to those we know and love and ask that they do the same. Never underestimate how much good a little grassroots courage can accomplish!

Our grandchildren will thank us. 

Happy New Year!

Barry

J. Barry Engelhardt MD MHSc (Bioethics)

January 1, 2021