What Killed Informed Consent? Exploring the Erosion of Autonomy in Modern Medicine
By Dr. Julie Ponesse
Informed consent is the cornerstone of modern medical ethics. At its root is the principle of patient autonomy, which assumes that, as stated in a court decision by Justice Cardozo in 1914, “Every human being of adult years and sound mind has a right to determine what shall be done with his own body.”
Operationally, informed consent can be broken down into three elements. First, it requires clinicians to provide patients with relevant information about any proposed procedure, including risks, benefits, and alternatives. Second, it requires patients to possess the cognitive capacity to understand the information provided. Third, it requires that patients are in no way coerced or manipulated.
To most of us, the primacy of informed consent is obvious and uncontroversial because it is grounded in the fundamental belief – a belief with deep philosophical roots – that all human beings have inherent dignity. It is also the principal mechanism our society uses to prevent patients and research subjects from being abused. Over the last several centuries, we have seen countless horrific examples of what can happen when people aren’t protected from coercion, medical experimentation, and procedures that, while possibly well-intending, cause more harm than good. Consider some of the most flagrant violations: the Tuskegee Syphilis Experiment, the Skid Row Cancer Study, the Stanford Prison Experiment, the GlaxoSmithKline Hepatitis E vaccine experiments, and Nuremberg.
Despite its obvious importance, informed consent has in practice experienced a disquieting decline in recent times, and a punctuated erosion since 2020. At the root of this decline are two ancient ideas which are now exerting a renewed pull on our healthcare system. The first is the idea that the physician or “expert” always knows best (what is referred to in healthcare as “medical paternalism”). The second is the related idea that there are times when the value of “the greater good” supersedes that of patient choice.
As paternalism gained strength in healthcare, decision-making power based on a genuine understanding of all risks, benefits, and alternatives gradually shifted away from the patient, who bears the consequences of the decision, and who thus should be at its centre. This shift challenges core principles of patient-centred care and prompts us to critically examine the interplay between personal agency, societal norms, and the ethical obligations of healthcare providers.
The Historical Context of Informed Consent
It was only in the 20th century that the concept of informed consent began to gain serious legal traction. Prior to a series of key court decisions, medical decision-making was almost exclusively the physician’s domain. It was the physician who decided whether to withhold a course of antibiotics, to consider a newborn with birth defects a “stillbirth,” or to give one patient rather than another access to surgery when it was in short supply. Any information or “choice” exercised by the patient was only an accident of whether the particular health care provider chose to offer it.
One significant court decision, ruling in favour of a woman who sued her surgeon after being subjected to a hysterectomy without her consent, summarized the primacy of consent as follows:
“…the citizen's first and greatest right, which underlies all others … necessarily forbids a physician or surgeon, however skillful or eminent, who has been asked to examine, diagnose, advise and prescribe (which are at least the necessary first steps in treatment and care) to violate without permission the bodily integrity of his patient.”
This and other legal decisions represented a departure away from medical paternalism towards a norm of shared medical decision-making.
A Pandemic of Coercion
In our own time, the hard-earned triumph that is a medical culture with unwavering respect for informed consent lost its footing not so much by direct attack but rather by being indirectly undermined by an increasingly impersonal health care system congested by a growing number of stakeholders (such as government, public health agencies, and the pharmaceutical industry). Gradually, almost imperceptibly, the traditional relationships of trust between physicians and patients have worn thin and all too often the expectation of explicit consent has, regrettably, given way to more tacit understandings of the concept.
During the COVID-19 pandemic, the inverse of informed consent was on display for all to see. The Canadian government and public health establishment concluded that protecting the “greater good” required exceptional measures, such as vaccine mandates and extreme lockdowns. Informed consent was no longer a sacred, inalienable right, but an expendable luxury unregretfully dispensable in the name of “keeping people safe.”
Informed consent simply doesn’t fit within a collectivist narrative. It is irreducibly individualistic and, therefore, messy. It necessarily accepts that different people with different values will make different choices.
Academics and politicians alike have blatantly denigrated informed consent when it is a barrier to implementing widespread health policies. For example, almost 20 years before COVID, ethicist Onora O’Neill wrote that “informed consent procedures in medicine […] are useless for selecting public health policies.” Implicit in her statement is the idea is that public health policies must be uniform to be effective. From this perspective, there can be no exceptions regarding individuals’ quarantine restrictions or vaccination requirements and success at limiting the spread of a lethal virus. You can either have “safety” or individual choice (but not both); when the two conflict, informed consent must give way to the primacy of group safety.
Hence, during COVID-19 and mass vaccination, “free choice” was considered “free riding,” and those who made individual choices that departed from what was perceived to “keep people safe” were seen as benefiting from others’ sacrifices without incurring costs themselves. As Canadian singer-songwriter Jann Arden quipped in a 2023 podcast, “[V]accinated people have enabled everybody on this planet to be having the lives right now that they’re having.”
In general, the word “freedom” itself has been denigrated, often by the same people who aggressively champion freedom and consent in other areas of bodily autonomy. While never physically “forcing” individuals to get vaccinated by way of police action, genuine freedom of choice as it is understood outside the strictest authoritarian regimes was severely curtailed by actual barriers to employment, travel, and access to services, and more insidiously by shaming, blaming, and humiliating. It was just over a year ago (in January 2022) that the CBC reported that Quebec planned to impose a financial penalty on unvaccinated people who don’t have medical exemptions. And, at the time of this writing, public health officers are going door-to-door in Saskatchewan asking residents about their vaccination status. Officials of the highest political office in Canada questioned out loud whether those opposing vaccination should be tolerated or be allowed to “take up space” in public discourse.
Beyond the Pandemic: Threats to Informed Consent
Many have written widely and persuasively about how the public health objectives sought during the pandemic might have been more effectively and humanely handled, i.e., other than by eroding informed consent. The question I now want to address is whether the damage that was done to informed consent might have implications far beyond an “exceptional” pandemic response.
Even if we grant the premise that consent should be obviated in extraordinary circumstances (and that isn’t clearly true, particularly as it relates to COVID-19), that doesn’t mean it should be eroded in the more general way we are seeing today. Many patients and clinicians are now sensing a kind of paternalism and social justice ideology (which is paternalistic at heart) sliding rapidly back into medicine.
From a philosophical perspective, the decline of informed consent has coincided not just with the specific events related to COVID-19, but more generally with the ascent of Scientism, an ideology that places unwavering faith in science as the ultimate source of truth. In our era of online discourse, the rallying cry of "#Trustthescience" or simply “#Science” has become an unimpeachable dogma used to render alternative viewpoints, however reasonable, as heretical.
It is important to emphasize that “Scientism” is not science. Scientism reduces all knowledge to the scientific form. At its most benign, people steeped in faith, literature or philosophy might say that Scientism has an incomplete view of the human condition – as if “science” could somehow explain the works of Shakespeare, the books of Scripture or the meaning of being a parent.
Unfortunately, Scientism is not so benign. It has a much darker side. One feature of this is the exaggerated authority given to “experts.” The fact that a physician or biologist understands the elements of DNA is often used to grant that person supreme authority in matters of public policy and medical ethics. Yet a genuine understanding of science should make it obvious that a biologist or physician does not have any special expertise either to answer fundamental questions around how a free society should be governed, or to justify restricting truly informed health care decision-making from individuals.
Related to this is an even more malignant feature of Scientism – its fundamentalist nature. The irony is that in replacing purportedly “outmoded” systems of belief, Scientism demands adherence to its incomplete orthodoxy, which among other things leaves little room for the perspectives and realities of a diverse group of patients who are bound to hold a multiplicity of values. Ironically, the rise of Scientism has led to a resurgence of the paternalism that once defined the dark ages of medicine.
Science should inform public health policy, to be sure. But we must bear in mind that science alone is ill-equipped to answer questions of ethics and questions of what makes for a good life, overall. There are important differences between facts and values, science and advocacy, the humility with which a scientist tests a hypothesis and the certainty with which a politician asserts a claim.
Rediscovering the Foundations of Medical Ethics
In the face of these challenges, it’s worth revisiting the fundamental principles underpinning medical ethics: autonomy, beneficence, non-maleficence, and justice. Autonomy, as we’ve discussed, demands respect for individuals' rights to make decisions regarding their own healthcare. Beneficence, the duty to "Do good," requires healthcare providers to act in the best interests of their patients. Non-maleficence, the principle often translated as "Do no harm," necessitates that any intervention be carefully assessed for potential risks. Justice, the principle of equitable treatment, mandates that healthcare professionals treat all people equally, regardless of their religion, ethnicity, gender, or social circumstance.
In situations where multiple principles are in conflict, we must deliberate on their relative weights. For example, if a patient requires life-saving medical intervention, but the intervention draws on a scarce resource, the physician must judge whether beneficence (and perhaps autonomy) or justice is the weightier norm. But to make this decision, the physician must draw on more fundamental ideas about what constitutes “the good” in the first place. This necessarily involves an appeal to a philosophical “theory of the good,” whether implicit or explicit.
We all differ in our theories of what is good. Some people value nonmaleficence over beneficence; others value individual good over collective good (or vice versa). This changes from culture to culture and evolves over time. The point is that a value theory of good is needed to carry out this judgement process in any ethical scenario. I believe that understanding the value theory that our culture holds supreme – Perfectionism – is key to understanding the punctuated decline of informed consent in recent times.
Perfectionism: Our Culture’s Value Theory of Good
While Hedonism (the pursuit of pleasure) and Eudaimonism (the pursuit of flourishing via a life of virtue) were the implicitly accepted value theories in medical ethics for a long time, they have gradually been supplanted by the prevailing value theory of Perfectionism.
Perfectionism asserts that the ultimate good lies in the perfection of human nature. As John Rawls put it, “perfectionism” aims at maximizing the good of “human excellence in art, science, and culture.” Moral perfectionism, as described byphilosopher Stanley Cavell, suggests that an unattained but attainable self exists, which individuals ought to strive to reach. Perfectionism is precisely the value theory that one would expect to predominate in a culture infected by Scientism, and it is the one we find ourselves saddled with today. Among much else, it explains our contemporary obsession with fine-tuning and optimizing every aspect of our lives, whether through pharmaceutical enhancement, integration with technology, or even social media life-hacks aimed at increasing efficiency in our day-to-day tasks.
Immanuel Kant presciently argued that a perfectionist society requires government paternalism to regulate human coexistence. Perfectionism curtails human choice precisely because free people will always make non-perfecting choices. Within this framework, which lies underneath our current predicament, informed consent represents an impediment to our collective perfection, a hindrance the pursuit of an ideal state.
The erosion of informed consent in recent years calls us to re-examine the delicate balance between personal autonomy and societal norms. It also demands that we interrogate the philosophical presuppositions guiding our most fundamental beliefs about what is right, what is good, and what ought to guide our decisions as individuals and as a society.
As we confront these complex issues, let us strive to forge a path towards a future where the dignity and autonomy of every patient are held sacrosanct – a future where the essence of informed consent shines brightly, illuminating the path to better healthcare, and better lives, for all.
In the words of Albert Schweitzer, "Ethics … are nothing but reverence for life." It is our collective responsibility to safeguard informed consent, for it forms much of the bedrock upon which ethical medicine thrives. Let us stand firm in our commitment to ensure that the voice of every patient is heard and respected in matters of their own health.
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