„Academia” special edition 1 2016: Speaking in the Language of Risk Mirosław Gryń

„Academia” special edition 1 2016: Speaking in the Language of Risk

The right to freedom and the ethics of preventive vaccinations


Szawarski_Zbigniew

Author: 
Zbigniew Szawarski

The Committee on Bioethics PAS National Institute of Public Health

 

Prof. Zbigniew Szawarski is a professor emeritus from the University of Warsaw who specializes in medical ethics. 

 


Areasonable person does not act to his or her own detriment. A reasonable person does not act to the detriment of his or her children. Also, a reasonable person should not act to the detriment of society. Effective prevention of various infectious diseases through vaccination is one of the greatest achievements of modern medicine. If vaccinations can protect us against numerous diseases and premature deaths, there is absolutely no reason why we should not benefit from this fact. Recent years, however, have witnessed a global rise in the number of parents who categorically refuse mandatory vaccinations for their children. With the ease of communication provided by the Internet, this anti-vaccination movement continues to spread throughout the international community. In the years 2011‒2015, the number of those avoiding mandatory vaccination in Poland increased severalfold and this trend shows no signs of abating.

 

If more and more parents are refusing to have their children vaccinated, they must have their reasons for doing so. So, should we or should we not have our children vaccinated? Answering this question, regardless of the actual answer given, requires a certain moral decision. Yes, we should get our children vaccinated, because vaccine refusal carries significantly greater risks than vaccination. No, we should not have our children vaccinated, because vaccination is a lot riskier than refusal. Despite appearances to the contrary, this is not a scientific dispute that involves simple and entirely objective calculations and risk assessment. Strictly speaking, it is a moral dispute that cannot be resolved through scientific methods.

 

As I understand it, this dispute is a natural consequence of three significant events that took place in the second half of the 20th century, namely:

 

  1. a characteristic shift in the moral paradigm of medicine,
  2. the emergence of a “risk society” and a crisis of authority, which characterize the modern era,
  3. the development of information technology and the advent of the Internet.

 

 

Informed consent

 

The doctor–patient relationship was traditionally paternalistic: through long years of study and clinical practice, doctors amassed adequate scientific authority and skills to be able to diagnose and treat diseases, whereas patients could only obediently and dutifully follow their recommendations. In addition, doctors were responsible for ensuring that all children under their care were vaccinated in timely fashion, according to the vaccination schedules mandated by their respective countries. This arrangement was entirely consistent with the traditional ethos of the medical profession. When deciding about vaccination, doctors were guided by the best interests of patients on the one hand (salus aegroti suprema lex) and strove to minimize potential harm by examining children before administering a vaccine on the other (primum non nocere). That was because both sides of the doctor–patient relationship had no doubt that preventive vaccination for children at an early age had been borne out by science and benefited both individuals and society at large. Consequently, no one questioned the rationale behind that practice. Simply put, there was no reason to call into question the authority of science or good faith on the part of doctors.

 

However, the situation changed fundamentally after World War II, when German doctors accused of conducting heinous medical experiments on concentration camp prisoners were brought to trial before the Nuremberg Tribunal and seven of them were sentenced to death. It was at that time that the Tribunal adopted the Nuremberg Code (1947), which introduced the principle that no medical examinations or experiments on human beings could be conducted without their informed consent. That was also when the principle of the moral autonomy of patients emerged in medical ethics. Aware of themselves, their situation, and their options, patients were now viewed as vested with the ultimate right to decide whether they want to be treated and how. A doctor’s sense of professional and moral duty thus came to be set against the concept of patient rights. Patients and doctors became equal partners in discussing treatment goals and options, with the final say being given to patients, not doctors. The patient’s right to autonomy gained an equally strong, if not stronger, status than the doctor’s obligations.

 

Risk society

 

Until recently, the primary goal of post-industrial society was the production and distribution of wealth. Since the emergence of what is known as the “risk society,” however, this goal has shifted to “the production and distribution of risk,”1 with science and technology acting as the most important producers of risk. The scientific and technological revolution has brought in its wake not only unprecedented advances in all branches of science and technology but also such events as the atomic bombing of Hiroshima, the Chernobyl disaster, climate change, successive environmental disasters, genetically-modified organisms (GMOs), cloning, genetic engineering, and the possibility of genetically enhancing the human species. “Risk society,” Beck writes, “is a catastrophic society,”2 a “commonality of anxiety.”3 The risk society is a community of uncertainty and mistrust. Anxiety, uncertainty and mistrust drive irrational and fanatic behavior. “Key institutions of modernity such as science, business and politics, which are supposed to guarantee rationality and security, find themselves confronted by situations in which their apparatus no longer has a purchase and the fundamental principles of modernity no longer automatically hold good. Indeed, the perception of their rating changes – from trustee to suspect. They are no longer seen only as instruments of risk management, but also as a source of risk.”4


 

 

♦♦♦ A nineteenth-century satirical drawing, illustrating the anxieties related to cow pox vaccination ♦♦♦

 

 

In other words, we live in a risk society, yet we are unable to cope with risk. Rationality, truth, scientific facts, and scientific objectivity have all become myths. There is scientific rationality and there is public rationality. One truth, the traditional goal of those involved in the pursuit of science, has been replaced by the notion of multiple truths. Science has ceased to be axiologically neutral. By the same token, the concept of an expert has undergone a complete devaluation. There are scientific experts, whose integrity, credibility, receptivity to criticism, altruism, and qualifications are validated by the community of people of science, who respect ethical principles.5 But there are also “experts for hire,” who go beyond their areas of specialty and offer their services to those of the same moral or political affiliations or to anyone who can reward them handsomely. The leader of every political party has an entourage of obliging experts. Parents are the best experts when it comes to the well-being of their children. When a mother tells an emotional story about her sick, vaccine-disabled child, her words carry the same weight as the words of a scholar who has spent half of his or her life in a laboratory. Everything is subject to interpretation and every interpretation is equally credible or incredible. We can only, as politicians often say, agree to disagree. Everyone can be an expert in his own cause.

 

We no longer trust science. The same holds true for medicine, as we are not certain what it principally aims to achieve: to prevent diseases and treat patients or to maximize financial profits and minimize losses above everything else. Slowly but surely, patients are becoming consumers of health care and insurance services, with growing mistrust of evidence-based medicine (EBM) pushing more and more people to enlist the services of various missionaries and “experts” on what is referred to as alternative medicine. Published in 1975, Ivan Illich’s famous book Medical Nemesis6 contains an exceptionally radical criticism of modern medicine, which according to the author is not at all guided by the best interests of patients. The very first sentence of that book is, “The medical establishment has become a major threat to health” – because doctors create a lot more problems than they can resolve. This is, the author maintains, an inevitable consequence of the medicalization of life, old age, and death. We believe we can easily resolve all of our life problems thanks to unprecedented advances in biomedical sciences.

 

Anti-vaccination movements

 

Ever since routine vaccinations started to be given to children, many have challenged the practice as harmful and immoral. It was not until the advent of the Internet, bringing the ability to directly exchange posts and comments (Web 2.0), however, that various groups opposed to childhood vaccines became integrated and consolidated. Research libraries, once so closely guarded and accessible only to doctors and specialists, suddenly opened their gates to everyone. Any Internet user interested in a specific medical problem can now access all sorts of related information. Indeed, the Internet has become a gigantic garbage dump in terms of information, its content including not only objective and reliable scientific reports but also subjective accounts posted by patients, doctors, politicians, journalists, and ordinary people sharing their experiences, thoughts, opinions, and what they happen to have read.

 

The resulting situation is exceptionally dramatic for people who have little knowledge of medical issues, who instead browse the Internet to find answers to specific questions, for example if their children should receive the MMR vaccine (against measles, mumps, and rubella). What they find on the Internet is a confusing mixture of strong, valid, and convincing scientific arguments in favor of vaccination and also arguments against vaccination, which are ostensibly equally strong and equally convincing. Scientists cite specific studies and statistics, arguing that vaccinations make sense, because they indeed lead to the elimination of certain diseases among society and radically reduce the risk of infection for many common infectious diseases. Vaccine critics, in turn, cite the moving and sometimes tragic accounts told by mothers who feel they should ne

medical doctor

ver have trusted doctors. Such stories, which are very emotional, are usually more convincing to ordinary readers than dry and abstract references to legal regulations or study results and statistics published in medical journals. Which is more important to parents facing a decision, reason or emotion?

 

A turning point in the consolidation of anti-vaccination movements came in 1998, when the gastroenterologist Andrew Wakefield and his colleagues published an article on possible links between the administration of the MMR vaccine in children and certain symptoms of autism in the British journal The Lancet.7 That paper, retracted by the journal in 2010, triggered an extremely strong reaction among doctors, journalists, and parents. That is because conclusive evidence appeared to have been found of the harmful effect of vaccines. What other arguments could be cited to rationally explain the recent rise in the number of autism cases? Clearly, vaccines are to blame.

 

Vaccination opponents triumphed. The heated debate between supporters and opponents of vaccinations which was sparked off on the Internet still continues today. Over the course of those discussions, two distinct strands have emerged: one is normative and pertains to the rights and obligations of parents, the other concerns the safety of vaccines and their harmful effects.

 

The right to parental care

 

My home, my family, my children – if I carry out my parental duties properly, no one can intrude into my family life and decide what is good for us and how we should live our lives, just like no one can conduct any medical examinations or experiments on me without my voluntary and express consent. Parents are the best experts when it comes to the interests and well-being of their children. In other words, if I know that vaccines are dangerous and harmful, it is clear I will not have my children vaccinated, and doctors have an absolute duty to respect my decision. After all, no rational parent wants his or her child to be harmed in any way.

 

The argument so expressed is simple, clear, and obvious. There is no way to question the right to parental care or the fact that parents are morally obliged to look after the well-being of their children. It does seem doubtful, however, that they understand the word “well-being” correctly. Not so long ago, the Polish media published shocking reports about a six-month-old girl that died under the care of a local quack that her parents had decided to trust over an actual medical doctor.8

 

From the perspective of the risk of infectious diseases and their grim consequences, what matters is the well-being of all children. Let us imagine a situation in which parents refuse to have their child vaccinated against polio,9 a dangerous and exceptionally infectious disease. Although mass polio immunization has made it possible to prevent an epidemic from occurring in Western societies, the disease continues to take its toll in Africa and in Asian countries. In a world where people often spend their vacations on faraway continents, how certain can we be that a child that has not been vaccinated will not come into contact with the polio virus and bring the disease home, to pre-school or school? Indeed, can I be absolutely certain that the virus will not attack my child? At present, there is no risk of polio in Poland, but the measles virus has been raising its ugly head more and more frequently. A reckless decision to consistently avoid all vaccinations may therefore entail disastrous consequences for a specific child, for all the children that come into contact with that child, and, by the same token, for the whole of society. If we care for the well-being of all children and the maintenance of herd immunity, we should have our children vaccinated.

 

The right to distrust

 

If it were not for the Internet, we would not have witnessed the eruption of such a heated debate over the ethics of vaccinations. That is because the Internet enables both sides of the dispute to present their arguments. On the one hand, there is the community of scientists, medical literature, journals, abstracts, reports, reviews, publications, press commentaries, and blogs. People of science know the advantages and disadvantages, effects, and production of specific vaccines. Even if they become involved in heated arguments, they have scientific methods at their disposal to resolve such disputes. One illuminative example is the history of the dispute over the credibility of the hypothesis of Andrew Wakefield and his colleagues that took place in scientific journals.10

 

Opponents of vaccination form a community whose organizational structure and methods resemble a cult on a great moral mission to save millions of children from being subjected to the inhumane and criminal activity of the medical establishment that propagates vaccinations. Its members support and quote each other, write passionate blogs that cite the same scientific or pseudoscientific authorities, reiterate the same dramatic stories and experiences of people who had their children vaccinated. This movement has its saints and martyrs as well as its favorite enemies. One of its most recent heroes is Andrew Wakefield.

 

Just like opponents of abortion, those opposed to vaccinations are questioning the moral motives behind the behavior of doctors, challenging and misinterpreting the concepts and reports that can be found in scientific literature, and collecting information about the dangers and harmful effects of vaccines. Sometimes, those involved in vaccine research face direct threats to their lives and well-being or are harassed with lawsuits. One example is Paul A. Offit, the co-inventor of a rotavirus vaccine, a staunch critic of alternative medicine and anti-vaccination movements.11

 

We cannot trust doctors – opponents of vaccination keep repeating – because they are embroiled in a permanent conflict of interest. Faced with a choice between loyalty to a pharmaceutical company (obligations related to funding for research projects, medical hardware, and trips to conventions and conferences) and loyalty to patients, doctors will usually opt for loyalty to Big Pharma. That is because rich and big pharmaceutical groups, which are motivated predominantly by financial profits, are the most powerful drivers of modern medicine.12 They wield so much power that they can even influence to a significant degree the means and methods by which reliable clinical research gets done.13

 

Likewise, we cannot trust doctors, because it is impossible to create vaccines that are absolutely safe and completely harmless. Every vaccine, as their opponents claim, is always toxic to some greater or lesser degree and may do fatal harm to children in certain circumstances. The more we know about the harmful adverse effects of vaccines, the better we can ensure the well-being of our children. This is why every thinking and sensitive person, especially doctors, should join the general crusade against vaccination for children. Indeed, there are doctors and scientists who spare no effort to devotedly fight against alleged arrogance and complacency in the world of science.

 

Finally, we cannot trust doctors, because they are forcing us to sacrifice the well-being of our children for the sake of the well-being of the community. Parents know best what is good for their children. Parents have no obligation to heroically sacrifice their children on the altar of the well-being of society at large.

 

The situation is indeed paradoxical. Science is sometimes described as a form of organized skepticism. Oddly enough, anti-vaccination movements also take a skeptical position on scientific discoveries and achievements. Science, they say, makes mistakes. Scientists err. We must constantly watch their every move. As far as I know, however, no scientific studies are actually being conducted among such movements that might confirm or refute the hypothesis that vaccines are dangerous and harmful. Skepticism of anti-vaccination movements resembles the behavior of some politicians, whose arguments boil down to one simple claim – “you are lying.” That is not the kind of methodological skepticism that is typically associated with science.

 

Prospects

 

So what is the upshot of all this: does it mean that we should have our children vaccinated, or not? Who is right, people of science or people of faith? Who should concerned parents trust in the first place? Any such decision is accompanied by anxiety and uncertainty, because one can never be sure in advance that a particular decision is the right one.

 

I do not believe it is possible to solve this dispute rationally, because it essentially boils down not to facts but to a clash of moral positions. It has played out amidst a profound crisis of confidence in all institutional authorities – science, medicine, even ethics. Ethics offers specific arguments in favor of vaccinations, but their opponents find such reasoning unacceptable. If a radical egoist believes that the only thing that matters is his or her own well-being, what might be done to convince this person that the well-being of others is at least as important? What arguments could be used to convince responsible parents who want the best for their children that there is absolutely no reason to doubt the recommendations of doctors, if doctors themselves argue over the importance and safety of vaccinations?

 

It would be good if the state took specific measures aimed at reducing the drastic drop in trust in the ethics and professionalism of doctors and facilitating a general debate on the principles of vaccination policy in Poland. It would be good if doctors finally learned how to talk to patients and saw them as something more than merely “recipients of health care services,” consumers or clients.

 

Finally, it would be good if a coherent, fair, and realistic program of health policy were adopted that would specify in black and white what we find especially important, how we intend to achieve it, and what rules of preference we will use in conflict situations. It is not fair if recommended vaccines, which are important for public health, benefit only the families who can afford them. Epidemics spread fastest among poor communities.

 

It is not enough to choose the simplest and least expensive option and launch a general educational program to inform the public about the benefits of vaccinations and potential adverse reactions. The fact that we no longer die of chicken pox and not a single case of polio has been reported in Poland for a long time constitutes no argument to fanatics convinced of the existence of a global conspiracy. References to articles published in the most prestigious medical journals are likewise not arguments, because, as opponents of vaccination claim, it is clear that they are also more or less reliant on and controlled by politicians and the sinister world of Big Pharma.

 

What can be done and what should be done? If we indeed live in a risk society, as defined in contemporary sociology, we must above all learn to think and speak in the language of risk. We must learn to predict and reliably assess the potential risks of our planned actions or omissions. In other words, we must learn the elementary rules of prudent choice. I fear that this modest plan goes beyond the imagination of our politicians and educators. The Poles, as the malicious joke goes, are an odd nation: if given the option to choose between the lesser and the greater evil, they will always choose both.

 

1 Ulrich Beck (1992). Risk Society: Towards a New Modernity. London: Sage. p. 13

2 ibidem, p. 24

3 ibidem, p. 49

4 Ulrich Beck (2006). Living in the world risk society. Economy and Society, vol. 35, no. 3, p. 336.

5 ibidem

6 Ivan Illich (1975), Medical Nemesis – The Expropriation of Health, Marion Boyars, London, New York, republished 1995 as Limits to Medicine.

7 Andrew Wakefield et al., Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children. The Lancet 1998; 351(9103): 637–41, [Retraction of Wakefield et al. in: The Lancet 2010; 375(9713): 445].

8 Cf. e.g. http://www.gazetakrakowska.pl/artykul/3430553,zaufali-znachorowi-poili-corke-nieprzegotowana-woda-i-kozim-mlekiem,id,t.html. (Accessed 01 June 2016).

9 Cf. e.g.. David M. Oshinsky (2006). Polio: An American Story. Oxford: OUP.

10 Cf. https://en.wikipedia.org/wiki/MMR_vaccine_ controversy (Accessed 01 June 2016)

11 Cf. http://paul-offit.com/; https://en.wikipedia. org/wiki/Paul_Offit (Accessed 01 June 2016)

12 Ben Goldacre (2013). Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients. Faber & Faber. Peter C. Gøtzsche (2013). Deadly Medicines and Organised Crime: How Big Pharma Has Corrupted Healthcare. CRC Press.

13 John P.A. Ioannidis (2016). Evidence-based medicine has been hijacked: a report to David Sackett. Journal of Clinical Epidemiology. http://endotoday. com/endotoday/perm_EBM_hijacked.pdf (Accessed 01 June 2016) 


© Academia special issue 1 (2) 2016

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