The formulation of health policy goals and the choice of policy instruments are value-bound activities that involve a normative (moral) judgment.
The normative model in health policy analysis conceptualizes health policy as the outcome of normative choices inspired by explicit or implicit moral beliefs.
The normative model aims to study moral judgments as empirical phenomena and their impact on health policymaking.
Public health ethics is concerned with the societal responsibility to promote and protect the health of the population as a whole. The purpose of public health ethics is to foster well-reasoned choices on moral issues and dilemmas based on a systematic conceptual framework.
Values are abstract normative principles involving a reasonable degree of intersubjectivity and stability.
Norms indicate what is permitted, rewarded, or penalized. A distinction can be made between legal, moral, and social norms.
Value pluralism relates to the presence of multiple values in health policymaking.
Judgment pluralism means that values can be interpreted differently and that value conflicts can be resolved differently.
The extension of state intervention, the growth of knowledge on health determinants, technological innovations, sociocultural changes, and the globalization of health issues have increased normative problems in health policymaking.
Empirical and moral statements are often closely intertwined in health policymaking.
Health policymaking involves moral dilemmas. Five well-known dilemmas are individual versus community rights; balancing benefits, harms, risks, and costs; paternalism versus individual responsibility; privacy versus public health; priority setting.
The settlement of moral conflicts is complex. Moral conflicts can be politically divisive. The value of evidence in settling moral conflicts is restricted.
Box 9.1 The politics of motorcycle helmet laws in the United States
The 1966 National Highway Safety Act included a provision that withheld 10 percent of federal funding for highway safety programs to states that did not enact mandatory motorcycle helmet laws. From the very beginning, the act was disputed because it conflicted with the libertarian US motorcycle culture. In reaction to state helmet laws, motorcyclist groups under the aegis of the American Motorcycle Association built a powerful antihelmet lobby. In various states, they mounted constitutional challenges to these laws arguing that they constituted an infringement of their motorcyclist liberty. In several cases, the state court accepted this complaint. For instance, the Illinois Supreme Court argued: ‘The manifest function of the headgear requirement in issue is to safeguard the person wearing it (….) from head injuries. Such a laudable purpose, however, cannot justify the regulation of what is essentially a matter of personal safety.' Courts in other states upheld legislation arguing that the helmet use protected the safety of other motorists: ‘(a) flying object could easily strike the bareheaded cyclist and cause him to lose control of his vehicle’. In political discussions on legislation, some politicians referred to the individualistic culture in the United States. One Republican representative summarized his position in only three words: ‘It’s my head’.
In reaction to political opposition and the lobby of the American Motorcycle Association, many states repealed their mandatory helmet laws. Their decision created a natural experiment. Advocates of mandatory helmet laws demonstrated that states without such laws had much higher traffic accident rates than states with such laws. However, this evidence did not convince the opponents of legislation.
A revision of federal legislation in 1991 continued to make federal support of highway safety programs contingent upon mandatory helmet laws, but the penalty or states abstaining from such legislation was lowered to 3 percent.
1992 was a historic year in helmet legislation. In that year, California enacted a universal mandatory helmet law. However, this brief moment of public health optimism was only short-lived when conservative Republicans took control of Congress. The federal 3% highway safety fund penalty was repealed. In 2006, only twenty-five states had required helmet use for all ages, twenty-one states required helmet use for minors only, and three states did not require helmet use at all. In their analysis of the legislative process, Moser Jones and Bayer conclude that the ‘history of motorcycle laws in the United States illustrates the profound impact of individualism on American culture and how this ideological perspective can have a crippling impact on the practice of public health’ The success of the lobby against helmet legislation ‘shows the limits of evidence in shaping policy when strongly held ideological commitments are at stake’ (p. 215).
Source: Moser Jones & Bayer, 2007.
The politics of motorcyclist helmet legislation in the United States highlights the pivotal role of normative or moral convictions in public policymaking. Proponents and opponents were diametrically opposed to each other. While the anti-helmet advocacy coalition prioritized individual freedom, the pro-helmet advocacy coalition found it reasonable to sacrifice some individual freedom to save lives. The case also plainly demonstrates that health policymaking cannot be reduced to an information-driven process. Even hard evidence of the life-saving effect of helmet legislation could not win opponents over legislation.
The central proposition of the normative model is that health policymaking involves explicit or implicit normative issues about right or wrong, just or unjust, legal or illegal, acceptable or unacceptable, appropriate or inappropriate, fair or unfair, and so on. None of these issues has an easy ‘yes-no’ or ‘right-wrong’ answer. At the same time, they can deeply divide society. Health policymaking includes ‘by definition’ normative or moral choices because it is directed at achieving something considered desirable. Sometimes, these choices spark passionate discussions. For instance, how far may or should the state go in protecting people against health risks? Where to draw the line between the public good of public health and the individual good of freedom and privacy (Dawson, 2011)? How to interpret the principle of individual responsibility in health protection (Schmidt, 2009; Nys, 2008)? Is there a risk of state overreach? Is it acceptable to use rest-embryos for medical research (Dondorp & De Wert, 2019)? Are abortion and medical assistance in dying at the request of the patient morally acceptable medical interventions? Is it morally acceptable that some pharmaceutical companies make excessive profits?
Moral issues also concern the choice of policy instruments. For instance, is mandatory vaccination of healthcare workers against the coronavirus a proportional policy instrument? Are ‘cash for sterilization’, the selling of a kidney, and cash benefits for healthy behavior (‘pounds for pounds’) morally acceptable instruments? Are there any moral limits to markets or, in the words of Sandel (20123), are there goods or services ‘what money can’t buy’? Even seemingly pure technical issues have a normative dimension. The determination of a maximum emission rate of a toxic substance is not just a matter of technical expertise. Expertise certainly contributes to prudent decision-making, but determining an emission norm ultimately requires a normative judgment about what is an acceptable risk from the perspective of public health.
Health governance also involves normative choices. Participation rules or decision rules require a normative model of good governance. Transparency rules, accountability rules, integrity rules, and legal protection rules are fundamental to the conception of the constitutional state of law.
This chapter discusses the normative dimension of health policymaking. Health policy is viewed as the outcome of choices inspired by moral beliefs. Health policymaking cannot be reduced to a merely technocratic activity fed by information, analysis, and expertise. The chapter consists of three main parts. The first part starts with a distinction between two alternative approaches to the study of the normative dimension of health policymaking. Other discussion topics are the concept of values and norms and the implications of value pluralism and judgment pluralism in health policymaking. Finally, the first part briefly discusses the increase of normative issues in health policymaking and the intricate relationship between analysis and appraisal. The second part is devoted to five fundamental moral dilemmas in health policymaking: the tension between individual and community rights; the balancing of the benefits, harms, risks and costs of public health interventions; the tension between paternalism and individual responsibility; the tension between privacy and public health; the problem of priority setting. The third part includes a discussion of the politicization of normative issues in health policymaking and the implications of the normative model for health policy analysis.
There are two alternative strategies to study health policymaking from a normative perspective. The first strategy is to judge the morality of public health decisions based on moral principles such as welfare, liberty, health, respect for human life, justice, privacy, and autonomy. This strategy has a long tradition in medicine. Medical ethics has developed as a distinct field of expertise and studies the ethical aspects of clinical practice with the purpose to formulate a well-reasoned point of view on these aspects (Beauchamp & McCullough, 1984). Particularly in the late twentieth century, public health ethics has emerged as a new branch of ethics. Its purpose is to develop a conceptual framework for a systematic debate about moral issues and dilemmas in policymaking on public health. Public health ethics is concerned with ‘the societal responsibility to promote and protect the health of the population as a whole’ (Buchanan & Miller, 2006; 729). Protection against health risks, infectious disease control, population screening, birth control, mass vaccination, and health inequities are examples of frequently discussed topics in publications on public health ethics (Dawson, 2011).
An alternative strategy is to study ethical (moral) issues from an empirical perspective. This strategy aims not to judge the moral status of arguments put forward in health policymaking but to investigate their role and impact in this process. For instance, what moral arguments do policy actors use to justify their position? How do they translate normative principles into concrete policy decisions? How do they deal with value pluralism? What is the role of evidence in the resolution of normative dilemmas? Which moral arguments remain unheard in normative policy debates?
This chapter follows the second strategy. A critical appraisal of public health policymaking from a moral perspective is beyond its scope. The purpose is to study the normative dimension in health policymaking from an empirical perspective and make health policy analysts aware of normative issues and dilemmas in dealing with public health problems. Notice, however, that the distinction between both strategies is less absolute than it might seem at first sight. The empirical study of normative issues greatly benefits from a deep knowledge of normative theories about mankind and human action. Consequently, health policy analysts need training in public health ethics.
Moral judgments in health policymaking draw upon values. Value orientations drive actors: they have ideas about what is important in their life, what they expect from the government, what they consider fair or unfair, and so on. Value orientations are explicit or implicit, context-bound, shift over time, due to social influences, and can be different for each person or group. But what does the concept of value mean? In his study on this question, Pepper (1958) chooses a broad definition: ‘anything good or bad ….’ (p.7). Vitality, health, freedom, solidarity, conscientiousness, progress, sincerity, beauty, and truth are examples of values. The problem with this definition is its non-selectivity and relativism. Anything can be taken as a value, even a very personal or questionable taste. Restrictions are necessary to demarcate the concept and make it useful for policymaking (WRR, 2005).
First, one may argue that it only makes sense to speak about values in relation to health policymaking if they refer to the ‘public interest’ or ‘common good’. Philosophers have spent their whole life on exploring the meaning and role of fundamental values such as welfare, freedom, solidarity, or virtue in human and social life (Sandel, 2008). Books have been written about the justification of political authority (Kymlicka 2002; Heywood, 2015).
A second restriction is that values should have a reasonable degree of intersubjectivity and stability. They are normative institutions or, put differently, institutionalized rules for making normative judgments. Values root in history. For instance, the contemporary emphasis on autonomy in medical and public health ethics has been described as the heritage of the Enlightenment in European cultural history (Ten Have et al., 1998). However, a reasonable degree of stability does not exclude value shifts or alterations in the meaning attached to values. The current emphasis on freedom of choice in health care and patient empowerment indicates a process of individualization in modern society (Ter Meulen, 2018).
While changes in moral judgments often take a more extended period, there are also examples of the contrary. An example is the rapid turn in the normative judgment of in vitro fertilization (IVF). The initial reactions to the birth of Louise Brown in 1978, the first IVF baby were negative. Opponents denounced IVF as an anti-nature activity. The pope reacted that artificial insemination could lead to women being used as ‘baby factories’. Nevertheless, the original critical stance towards IVF rapidly faded away and nowadays, the initial excitement about the new technology seems distant (Swierstra & Rip, 2007).
The importance of values lies in their directive effect on policymaking. Policymakers refer to values to motivate and legitimize their standpoints and choices. Values also have a mobilizing function. Referring to values in policy narratives is a well-known strategy to build popular support for or mobilize opposition to policy initiatives. The abstractness of values (see below) is of great help in this respect. Making values concrete easily causes political division.
A distinction can be made between ultimate and instrumental values. Ultimate values are also mentioned intrinsic values and instrumental values extrinsic values. While ultimate values are values of themselves, instrumental values derive their value from their contribution to the realization of ultimate values. Examples of ultimate values are health for all, autonomy, freedom of choice, universal access, equity, fairness, solidarity, integrity of the human body, and privacy. Examples of instrumental values are effectiveness, efficiency, fiscal sustainability, accountability, and transparency.
Though helpful, the distinction between ultimate and instrumental values is somewhat problematic. Health is an example. Many countries have formulated the right to health as a leading normative principle in their constitution. To materialize this principle, the state must protect and promote the health of the population and protect the rights of patients (Wiley, 2009; Daher, 2015). International treaties on human rights accord citizens a right to health care (chapter 1). However, health can also be viewed as an instrumental value because it is a precondition for working, earning money, enjoying one’s life, and so on. Neo-classical economic theory postulates consumer sovereignty (the economists’ terminology for freedom of choice) as a precondition for the maximization of social welfare (ultimate value). Yet, there are good reasons to classify effectiveness, efficiency, fiscal sustainability, accountability, and transparency as instrumental values. They have a lower moral status than the ultimate values. Ultimately, health policymaking is not about efficiency, accountability, or fiscal sustainability but about providing universally accessible and high-quality care according to need (Box 9.2). A strong emphasis on instrumental values is a risk for the ‘soul’ of health policymaking. It can degenerate into a technocratic approach in which the ultimate values are made subordinate to instrumental values.
Box 9.2 Value-based purchasing
Value-based purchasing (VBP) has become a widely favored strategy in current healthcare policymaking. It takes various forms but its underlying logic holds that payers (government agencies, health insurers, employers) should do more than pay for health services. Instead, they should pay for the optimal combination of value and price. Doing more is not necessarily better than doing less, and high-cost services do not necessarily yield better outcomes than low-cost services.
The focus in VBP is on efficiency. The value of healthcare is defined in terms of efficiency (Porter & Teisberg, 2006). VBP is driven by the pursuit of efficiency or, as Tanenbaum writes in her critical analysis of VBP, ‘more bang for the buck’ (p. 1037). But how are health outcomes and costs measured? The problem with outcome measurement is that measures are rudimental and may not capture what patients consider really important. This problem is particularly acute in the case of patients with comorbidities or serious and potentially life-ending chronic conditions. The measurement of costs is also problematic because only the immediate costs to the payer are incorporated. In short, the patient’s perception of value-based care may significantly differ from the definition of value-based care in VBP.
Source: Tanenbaum, 2016.
For impact on behavior and policymaking, values must be concrete. Whereas values are ‘open’, norms indicate or structure what is permitted, rewarded, or penalized. Norms are formal or informal rules of the game for behavior. Formal or informal sanctions support compliance with norms. Though norms are more concrete than values, even concrete norms often appear indeterminate and multi-interpretable in individual cases. Paraphrasing Streeck and Thelen (2005), one may say that the practical enactment of a norm is as much part of its reality as its formal structure.
A distinction can be made between moral norms, legal norms, and social norms (WRR, 2005). Moral norms indicate what is right or wrong, just or unjust, fair or unfair, and so on. Which moral norms should guide decision-making and how to interpret them are two recurrent issues in health policymaking. Various moral norms are deep-rooted in a country’s culture. Box 9.3 contains a framework of general moral considerations for public health interventions formulated by Childress and his colleagues.
Legal norms are the centerpiece of the state of law. They confer obligations and rights upon the state and its citizens. Legal norms protect citizens against abuse of power by the state (vertical norms) and the misbehavior of their fellow citizens (horizontal norms). Legal norms offer a normative framework for judging the state's and its citizens' behavior in terms of legal or illegal. The purpose of public law litigation is to test the lawfulness of state intervention or non-intervention on the basis of constitutional norms or international treaties.
Box 9.3 General moral considerations for public health interventions
In their mapping of the terrain of public health ethics, Childress and his colleagues formulate the following what they call ‘general moral considerations for public health. These considerations can be conceived of as basic norms for public health interventions:
- producing benefits;
The challenge for health policymakers is how to make these general considerations specific and concrete enough to guide action and how to resolve conflicts between them. This requires a complex process of specifying and weighing of these considerations in a cultural context.
Source: Childress et al 2002: 171-172.
Social norms are part of the prevailing culture in society (mores) and ‘regulate’ what people should do or refrain from. One may speak of social conventions. ‘Polderen’ is an example of a social convention in Dutch health policymaking: the social norm is that policy actors must negotiate a compromise. Compromise is no bad word. The policy style of consensus-seeking is considered superior to the policy style of confrontation. Social norms do not easily change. However, there are exemptions. The acceptance of seatbelts in cars was initially disputed as a patronizing state measure. Nowadays, seatbelts are widely accepted as an effective safety instrument in road traffic. Another example: only a few decades ago, smoking was still widely accepted, even in the doctor’s room. Presently, the social acceptance of smoking is significantly lower. A representative of the tobacco industry wrote in this respect that the centrality of social norms was ‘just a justification of our analysis that the social acceptability issue will be the central battleground on which our case in the long run will be lost or won’ (Willemsen 2018: p. 94). The trend towards polarization in some Western democracies can be interpreted as a signal of altering moral conventions in the political arena.
Moral and social norms overlap each other if moral norms institutionalize as social norms. Legal norms may root in social and moral norms and become institutionalized as social and moral norms.
Norms are an important tool for policymakers. Legal norms regulate in great detail the relationship between the state and its citizens. State intervention in public health has resulted in an ‘explosion’ of regulations of the financing, planning, quality, and safety of health care, patient rights, ethical issues, and the protection and promotion of public health (public health law).
Social and moral norms can also be used as policy instruments. Persuasion is a strategy to internalize these norms. In countries where parents are free to decide on the vaccination of their children, public health authorities nevertheless encourage the vaccination of children by referring to the moral principle of solidarity: vaccination not only protects your own children but also children who cannot be vaccinated for medical reasons. Vaccination is only effective if the number of vaccinated children reaches a certain threshold (Hendrix et al., 2016). A similar moral appeal to the citizenry was done during COVID-19. In respect of everybody’s principal right to freedom of choice, most governments abstained from making vaccination mandatory. Nevertheless, they made a forceful appeal to all citizens to get vaccinated. ‘Only together can we overcome the pandemic!’ was the slogan of the Dutch government.
An important theme in policymaking is whether state intervention by legal and moral norms can be effective without the social norm of obedience. The answer to this question is self-evident: the effectiveness of state intervention is contingent upon the degree citizens accept the state’s authority to issue norms, irrespective of whether they are legal or moral. Sanctions only to punish non-compliance do not work. Effective intervention requires a high degree of public support. The problem, however, is that obedience and support have become less self-evident than they were in the past. A few decades ago, law-abiding behavior was, generally speaking, stronger than it seems nowadays (although there are certainly big differences within and between countries). Health policymaking was accepted as the responsibility of public health experts and the state. Public critique of state intervention was, with some exceptions (e.g. mandatory vaccination), uncommon. This situation has changed. Nowadays, people are more critical of state intervention than they used to be in the past. The decline of trust in the government means they do not automatically accept or abstain from what the state tells them to do or abstain from. Many of them also question the science-based arguments for state intervention. Individualization means, among others, that people are inclined to determine for themselves what they consider right or wrong or what they are willing to accept or not (see Chapter 7).
Value pluralism relates to the presence of multiple values in health policymaking and judgment pluralism to the fact that there are several answers possible to resolve value conflicts (Dawson, 2011: 9). Value pluralism and judgment pluralism are central to a democratic society: people have divergent ideas about what they consider most valuable in their life and about how to find a proper balance between conflicting values.
Value pluralism confronts policymakers with moral dilemmas for which no simple solutions are available. The challenge is to maximize each value to the degree possible without threatening other values. How much of a certain value should be sacrificed for another value? If one cannot have it all, what then is a good balance between conflicting values? Much health policymaking boils down to a complex balancing act. An example is the new health insurance legislation in the Netherlands. Policymakers had to find a balance between freedom of choice and solidarity in health financing. Public ethics aims to enable policymakers to help policymakers and the population to make reasonable choices in these moral dilemmas.
What complicates the resolution of moral dilemmas is judgment pluralism. Values are abstract concepts that are open to differing interpretations. The relative weight given to each value may be different. Context is always important: what is an acceptable resolution in a given context can be unacceptable in a different context.
Value pluralism and judgment pluralism are important sources of political conflicts that can deeply divide society. The struggle for mandatory motorcyclist helmet legislation was more than an ideological struggle on the balance between individual freedom and road safety. It was also a political struggle along party lines between the pro-legislation and anti-helmet advocacy coalition the outcome of which was contingent on the power balance in the political arena. Presently, just nineteen states have legislation requiring all riders to wear a helmet; in other states, this is left to individual choice for riders over twenty-one.
There are many examples of value conflicts. For instance, doctors who are critical of the introduction of market competition and the commodification of health care complain about the interference of management norms with the professional norms of good medicine. They reject the notion of health care as a product or production line and see health care as a trust-based instead of a contract-based service to patients. Price gauging during COVID-19 demonstrates how economic behavior can conflict with moral norms. Is it from a moral point of view acceptable that smart businessmen exploited the scarcity of essential protective equipment to make huge profits or that various pharmaceutical industries made windfall profits (Hannan et al., 2021)? Do they have a well-developed moral compass?
The resolution of normative dilemmas and conflicts is always context-bound. Under extreme conditions, a single value can have such a high priority that competing values largely lose their weight. Such a situation occurred during COVID-19. The exponential increase in the number of patients with COVID, the high death toll, the risk of a completely overwhelmed hospital sector, and great uncertainty on the development of the pandemic created a state of emergency in which the protection of public health was given the highest priority. The radical restrictions to public life meant that standard human rights were largely put aside. In the first stage of the pandemic, there was much sympathy among the population. In later stages, however, public sympathy started gradually crumbling. Critics of freedom-restricting policy measures called for a more balanced weighing of values and some of them even denounced these measures as a fundamental infringement of the state in private and public life. Some of them filed a lawsuit against the state to overrule these measures (Wagner, 2022).
Value pluralism and judgment pluralism are two important topics in comparative health research. They also offer an interesting starting point for the analysis of cultural differences between countries. What do countries value most and how do value judgments influence their health policymaking? An example is the difference in interpretation of the moral principle of distributive justice in the United States and Europe. Stone (1993) has shown that distributive justice has quite a different meaning in the States than in Europe, with far-reaching implications for the organization of health insurance (Box 9.4).
Box 9.4 The meaning of distributive justice in health insurance
In her article ‘The struggle for the soul of health insurance’, Stone explains that health insurance in the United States rests upon a specific interpretation of the normative principle of distributive justice. The fundamental question is whether medical care should be distributed as a right of citizenship or a market commodity.
On the European Continent, distributive justice in health insurance is interpreted in terms of solidarity. Medical care should be distributed according to need. Consequently, health insurance should remove financial barriers to medical care. For this reason, individual contributions should be income-dependent and not be related to medical risk.
The commercial health insurance industry in the United States is based upon quite a different interpretation of distributional justice. Distributive justice is interpreted in terms of actuarial fairness. According to this principle, there should be a relationship between the premium insured pay for health insurance and their medical risk: the higher the risk, the higher the premium. Some other strategies to apply actuarial fairness are exclusion waivers, waiting times before being accepted, or termination of health insurance. These strategies explain why in 2003 some 35% of the 19-64 adults in the United States (Schoen et al., 2005) had no insurance or were underinsured and why sickness could lead to individual bankruptcy. The purpose of the failed reform of Bill Clinton and the Affordable Care Act of Obama was to address this problem and make health insurance affordable to all Americans.
Stone argues that ‘actuarial fairness – each person paying for his own risk – is more than an idea about distributive justice. ‘It is a method of organizing mutual aid by fragmenting communities into ever-smaller, more homogeneous groups and a method that leads ultimately to the destruction of mutual aid’ (p. 290). The principle serves as the moral backbone of the commercial industry. It is their business strategy. ‘The very redistribution from the healthy to the sick that is the essential purpose of health insurance under the solidarity principle is anathema to commercial insurers’ (p. 294). Indeed, ideological hard-liners even discredit social health insurance as socialized medicine or something akin to communism.
Sources: Stone, 1993; Light, 1992.
Medicine and health care have always raised normative issues. The Hippocratic Oath of doctors even dates back to the fifth century before Christ. Compassion and social responsibility motivated charitable organizations to support people long before the state introduced social welfare programs. The founders of hospitals and sickness funds considered access to health care a matter of social justice.
The number and complexity of normative issues in health policymaking have considerably increased over the last two centuries. Each extension of state intervention raised moral issues about the role of the state in public health, the relationship between the state, civil society, and the market, the room for freedom of choice, the role of individual responsibility, and many other normative issues. Restrictions on the production or consumption of goods and services to protect and promote public health have not only been contested on economic grounds but also for moral reasons. The fundamental question is how far the state should go in influencing the lifestyle of its citizens.
Global health has become a source of fundamental moral problems. For instance, what is a reasonable balance between trade liberalization and the control of health risks? COVID-19 has again made clear that viruses do not respect national borders. Worldwide access to vaccination is not just a matter of effectiveness but, most notably, a matter of social justice. Wide health disparities across the world raise fundamental normative questions about unequal access to health care.
The advance of medical science also raises moral questions. New innovative interventions have made diseases once incurable curable. While most of these interventions were welcomed as a great success and a sign of progress, they also elicit critical questions. Should everything technically possible be permitted, and under which (strict) conditions? How to weigh the benefits of new treatment options against their costs? Organ transplantation, robotics, e-health, big data, and nanotechnology raise complex questions about the meaning of good and responsible care (e.g. Beauchamp & McCullough, 1984).
Moral disputes on new interventions are anything but new. For instance, Jenner's discovery of a vaccine against smallpox at the end of the eighteenth century (Riedel 2005) provoked heated disputes on the legitimacy of a state-imposed vaccination duty to protect public health. The dispute about the pros and cons of vaccination during COVID-19 is just a repetition of what happened so often in the past (Box 9.5).
Box 9.5 Vaccination politics
Mass vaccination programs have always raised controversy. The Dutch liberal Statesman Thorbecke (1798-1872) considered a state-imposed vaccination duty in the new Health Act an effective instrument to combat regular outbreaks of infectious diseases. In his view, a vaccination duty was justified because of the indifference and recklessness of many people. However, his view was contested. Orthodox religious communities denounced vaccination as an unacceptable intervention in God-given life and an objectionable consequence of the Enlightenment. The Protestant political leader Abraham Kuyper (1837-1920) rejected a vaccination duty on fundamental grounds but did not reject vaccination as an instrument to protect public health. Opponents to vaccination also put individual responsibility central and some of them warned of negative side-effects: they said to have information that vaccination had caused an increase in the prevalence of other diseases (Maas 1988).
Alternative evidence can stir up controversy on vaccination. An example is the MMR (measles, mumps, and rubella) vaccination controversy after Wakefield had claimed a causal relationship between MMR vaccination and autism. His study drew widespread attention in the media some of which did not refrain from depicting children and parents as victims, pharmaceutical companies as villains, and scientists as conspirators who helped the government to hide the truth about the adverse effects of vaccination. Even after the study had been unmasked as completely flawed, many parents still refused their children to be vaccinated, believing that MMR vaccination could cause autism (Gostin, 2015; Walkinshaw, 2011).
Comparable resistance to vaccination could be observed during COVID-19. Apart from principal reasons against vaccination and doubts about the safety of the vaccines which had been developed in a very short period (one year), opponents referred to complot theories to explain their negative attitude to vaccination, for instance, that the pandemic was complot of deep state or that vaccines contained a chip that enabled Bill Gates to control mankind (Bolsen & Palm, 2022).
A final example of how emergent technologies raise new moral questions is the rapid datafication of everything, artificial intelligence, and deep learning. Although much is unknown yet, this development is expected to have far-reaching consequences for public health. Searching for information nowadays means being searched. What does this mean for freedom of choice and privacy? There are serious concerns about the risk of being watched and controlled on an unprecedented scale (Box 9.6).
Box 9.6 Surveillance Capitalism and public health
In her book The Rise of Surveillance Capitalism, Zuboff (2019) argues that our use of the internet produces a surplus (information on behavior). Big internet players including Google, Facebook, and Amazon have been very successful to convert the surplus into prediction products for commercial ends. These products have made it possible to optimize the targeting of advertisements or the targeting of electoral campaigns on specific groups of voters. The next step is to exploit the surplus for developing signals to modify individual behavior. Zuboff speaks in this respect about a new species of power and calls the use of this power to condition human behavior instrumentarianism.
Public health is an attractive market for surveillance capitalists. Nowadays, numerous reliable wearable sensors render an increasing range of information on biometric data, including data about body temperature, heart rate, brain activity, muscle motion, blood pressure, energy expenditure, sweat rate, and so on. It is just a matter of time before this information will be commercially exploited for the promotion of public health or the development of personalized insurance premiums. However, there are serious privacy concerns and concerns about how newly available surveillance techniques will be used for private and public control of public health.
Sharon (2021) investigates the normative risks of what she calls the ‘Googlization’ of society. Using the example of automated contract tracing, she admits that new technologies offer several advantages over traditional contact tracing methods which are known as very time-consuming. However, she also warns of moral risks beyond the risk of loss of privacy. Building upon the theory of justice of the American political philosopher Michael Walzer, she mentions two specific risks. The first risk is the crowding out of essential ‘spherical’ expertise. The Googlization of public health can lead to a reshaping of the values of these sectors [health and medicine – JM] to align with the values and interests of non-specialist private actors’ (S52). In other words, digitalization and datafication in public health ‘risks’ may erode practices, norms, and values that have always been central to the sphere of health and medicine. Instrumental (commercial) values such as efficiency, speed, and optimization may push out traditional sectorial norms and values. The second risk is that the Googlization of public health will propel the privatization of public health by making the state increasingly dependent on new technologies developed and provided by the private sector. New technologies give ‘tech giants’ enormous leverage to influence health policymaking in the future.
The publicization of public health can be analyzed as a transformational social and political process. The question is how it will further evolve in the future. Critics have warned of the rise of the ‘nanny state’ (Wiley et al., 2013). Health tends to become an overriding value. Lupton (1995) speaks in this respect about the ‘health imperative’ and Frissen (2023) about state control ‘behind the front door, between one’s ears, and under one’s bed’. In this respect, it is helpful to pay brief attention to a critical analysis of the extension of state control by the French philosopher and historian Michel Foucault.
Foucault distinguishes three global periods in the emergence of state intervention in public health. In the seventeenth century, the sovereign abstained from intervention unless it was indispensable to protect the population. His example is the fight against leprosy. The sovereign used his/her power to isolate persons with leprosy in separate camps where they were left for themselves. Medical assistance did not exist. In the eighteenth and nineteenth centuries, public interventions were gradually directed at disciplining the population through surveillance techniques. Here, Foucault’s favorite example is pestilence. Infected persons were isolated and put under strict control. Violations of prescriptions were sanctioned. Gradually, control became increasingly impersonal. Aware of being under permanent control, people internalized the regulations they had to observe with the result that public control transformed into self-discipline and mind control. In the eighteenth century, state intervention entered a new stage with the emergence of what Foucault called ‘biopolitics’ which connected human biology with politics ‘to ensure, sustain, and multiply life, to put this life in order’. Examples of bio-politics are mass vaccination (Foucault’s example), birth control, family planning, health promotion, and issues of life and death. Interventions increasingly draw upon health statistics and epidemiology (Foucault, 1976; 2008).
Foucault’s analysis of the emergence and intensification of state control is central to his theory on the intimate relationship between knowledge and power in society. The fundamental question is how state intervention will evolve, particularly in the context of increasing technological options for the surveillance of health and health behavior at a distance. Will public control extend and, if so, to what extent and for what purpose? How much and which information may the state collect to control the health behavior of its citizens? Which limits should it respect? Are we heading towards the emergence of a ‘health-surveillance state’ in which the protection and promotion of public health have become such an overriding value that other essential values, in particular human rights, are made subordinate to it? The pursuit of an all-hazard approach to public health seems a self-evident and noble goal in itself but it raises serious moral dilemmas. A related question is to what extent public health is malleable.
Textbooks on policy analysis often assume a sharp distinction between facts and values or between analysis and appraisal. Analysis is presented as fact-based or value-free activity, and appraisal as value-bound. The formulation of policy goals and the choice of policy instruments are value-bound activities, the identification of policy instruments and investigation of their potential effects a value-free activity. The role of health policy analysis is to provide policymakers with ‘objective’ information for decision-making and the role of policymakers to make normative choices.
The distinction between facts and values draws upon the logical gap between ‘is-statements’ and ‘ought-statements’. ‘Is’ does not logically imply ‘ought’. For instance, the availability of a new costly medical treatment does not automatically mean that it should be covered in a public financing scheme. Not everything that can be done should be done. While advocates of new technologies herald the benefits of new technologies for mankind or postulate the inevitability of their application (if we don’t do it, our competitors will do), critics warn of unforeseen side effects and the risk of habituation and moral corruption (Swierstra & Rip, 2007).
In the practice of health policymaking, however, moral views and analysis influence each other. Obesity is an instructive case to unravel the intersection of analysis and appraisal. The World Health Organization frames obesity as a public health problem of epidemic proportions. In their analysis of frame contests on obesity in the United States, Saguy and Riley (2005) set out that the WHO frame of obesity is only one way of constructing obesity as a public health problem and that alternative frames compete for the attention of policymakers. Each of these frames has potential moral implications. They discuss four alternative frames. The first frame builds on traditions of anti-discrimination and human rights and constructs obesity as body diversity. In this ‘fatness as body diversity’ frame, weight is considered largely beyond personal control. There is nothing wrong with obesity. Body diversity should be accepted as a normal twist of nature. Representatives of the ‘obesity as risky behavior’ frame assume body weight to be under personal control and connect obesity with unhealthy behavior. This construction is not without moral implications: risky behavior is implicitly perceived as immoral (blaming the victim). Although its representatives recognize the impact of structural factors on obesity (obesogenic environment), they usually fall back on the risky behavior frame by advocating health education as the prime resolution. The third frame constructs obesity as a disease. While this ‘obesity as disease’ frame removes the blame associated with it in the previous frame, obese persons are morally obliged to undergo medical treatment. Medicalisation of obesity lurks in this frame (Conrad, 1992; Moynihan et al., 2002). The final frame constructs obesity as a contagious epidemic. This ‘obesity as epidemic’ frame opens the door for stigmatization. Saguy and Riley conclude ‘that what might be assumed to be strictly arguments over scientific method and empirical facts are actually heated struggles over framing and morality’ in which medicine has become the new ‘moral authority’ (p. 912).
The four frames of obesity (or four models of sense-making) illustrate how analysis and normative considerations may intersect in health policymaking. Each frame has its researchers to support its credibility and its activists to push the frame on the political agenda. Searching for facts and evidence and choosing theories to explain policy problems and explore solutions are not fact-free activities but correspond with a moral frame.
The intersection of analysis and morality resonates with how corporate interests respond to obesity. Corporations with commercial interests in providing goods and services to tackle obesity (e.g. weight-loss products) are likely to frame obesity as a disease or an epidemic. Both frames serve their commercial interests. Producers of unhealthy food and drinks, however, will underscore the role of individual responsibility to protest against policy measures such as age limits or ‘sin taxes’ that threaten the profitability of their business.
The intersection of analysis and values is also manifest in the political debate on competition in health care. Advocates of competition put the concepts of freedom and efficiency central and attribute many persistent inefficiencies in health care to a lack of freedom. Consumer choice and competition compel providers and payers to enhance efficiency. Opponents of competition warn of moral corruption. In his critical analysis of limits to competition, Sandel mentions two main reasons why markets are no morally-free zone. The first reason is inequality: differences in wealth mean that some people have access to market goods and other people cannot buy these goods. Second, the unfettered market implies that ‘some of the good things in life are corrupted or degraded if they turn into commodities’ (Sandel, 2012: 10).
The basic challenge in health policymaking is to balance the ‘public good’ and the ‘individual good’. For instance, how to balance the right to the confidentiality of a patient (individual good) in the event of a deadly infectious disease and the responsibility of the state to protect the health of its citizens (public good)? Is putting individuals with a disease that is known to be a great risk for public health into quarantine an acceptable strategy to protect public health? Is fluoridation of drinking water an acceptable public intervention if nobody can escape from it? Which moral principles should prevail: the right of the individual or the right of the community? None of these questions has a simple answer. Public health ethics is a new branch in ethics that seeks to develop a reasoned opinion on moral dilemmas (Dawson, 2011).
There are several theoretical approaches to public health ethics. A well-known approach is the utilitarian approach, also known as the consequentialist or practical approach. It takes the achievement of the greatest good for the greatest number of people as the leading normative principle. Decision-making requires a cost-benefit calculus to find out whether the public benefits of a public intervention outweigh individual costs. If so, the intervention is in principle justified. The utilitarian approach contrasts with the duty-based approach, also known as the deontological approach which gives absolute priority to a single moral principle (Sandel, 2008). Mass vaccination is an instructive case. Assuming the availability of hard evidence of the effectiveness of vaccination, utilitarians are in principle sympathetic to mandatory mass vaccination, even if there is a slight risk of adverse health effects. Deontologists, on their part, may reject mandatory vaccination because of prioritizing the principle of individual freedom, even at the expense of the public health gain of vaccination. This view does not necessarily imply a rejection of vaccination. It only means that vaccination must be voluntary.
The utilitarian and deontological approaches only indicate a general direction to decision-making on balancing the individual and public good. There are many unanswered questions. For instance, what do the individual and public good mean in a concrete situation? Under which strict conditions is the infringement of the individual good to protect the public good justified? Is state intervention to protect the public good at the expense of the individual good effective and proportional? Context is always relevant. What seems a reasonable balance in a specific context may be a less reasonable balance in another context.
The remainder of this section briefly discusses a couple of moral dilemmas that frequently arise in public health policymaking (htpps://health.researchnet.com). It should be emphasized that the resolution of these dilemmas is not just a matter of reasoned opinion. The political, cultural and economic context, and public opinion always influence the resolution of these dilemmas.
A moral dilemma arises when individual rights conflict with community rights. The classic example in public health policymaking is balancing individual and community rights in the event of an individual's contagious disease involving a health risk for other individuals (other-regarding harm). The containment of the disease requires control over individual behavior. The famous philosopher John Stuart Mill stipulated that restrictions of individual rights are justified to prevent harm to others. Complete freedom does not exist. If necessary, the state is justified to take all reasonable measures to protect the health of others, including the restriction of individual freedom. The right to liberty in the European Convention of Human Rights (article 5) contains an exception for ‘the lawful detention of persons for the prevention of the spreading of infectious diseases’.
The problem with this utilitarian type of reasoning is that it leaves important questions unanswered. The identification and reporting of infectious people are standard practices to monitor the spreading of the disease but under which conditions are more radical interventions a reasonable and justifiable option? Under which conditions are restrictions to individual liberty to protect public health justified? How serious should public health be at risk to warrant restrictions to individual liberty? What kind of restriction is justified, and for how long? Who is the community to be protected? Restrictions should not only be effective but also proportional and lawful.
None of these questions are new. In the past public authorities have frequently resorted to strict control measures such as isolation and quarantine to contain the spread of infectious diseases like leprosy, typhoid, plague, cholera, smallpox, and many others. The tension between individual and community rights was also clearly manifest in COVID-19. Governments declared the protection of vulnerable people and the threatening collapse of the nation’s healthcare system as a community right that justified radical interventions, including lockdowns, curfews, and the obligation to wear face masks in the public space. These interventions were considered effective and proportional. However, each country went its own way in balancing individual and community rights (Greer et al., 2021). While some countries (e.g. France and Spain) implemented a strict lockdown, other countries (e.g. the Netherlands) opted for a less restrictive ‘intelligent lockdown’. Sweden chose a policy of individual responsibility (Brusselaers et al., 2022). While some countries made vaccination mandatory (e.g. Austria) or mandatory for specific groups (e.g. care workers), other countries opted for voluntary vaccination, although only vaccinated persons could access public spaces. These differences in interventions demonstrate the impact of the political environment on state intervention. The role of context can also be inferred from the fact that public protests against freedom-restricting interventions increased with the lapse of time: interventions considered reasonable and legitimate in the early stage of the pandemic lost in the view of its critics much of their reasonableness and legitimacy after a while.
Interventions in public health require balancing benefits, harms, risks, and costs. Because of potential adverse reactions to vaccines, vaccination campaigns always have an associated risk of harm. COVID-19 exemplifies the dilemma. From the very beginning, policymakers and public health experts considered the development of effective vaccines the fastest route to stop the pandemic. To expedite market authorization, it was decided to replace the standard procedure of sequential steps to assess the efficacy and safety of corona vaccines with a procedure of parallel steps. After some pharmaceutical companies had managed to develop vaccines in a very short period and the responsible authorities had provisionally authorized these vaccines, national governments had to decide about the launching of a population-wide vaccination campaign. Because the benefits of vaccination outweighed potential adverse health risks and these risks were assessed as very small though not wholly absent, they gave the go-ahead to mass vaccination.
Though resistance to vaccination campaigns is no new phenomenon in health policymaking, it can be argued that the complexity of balancing their benefits, harms, risks, and costs has increased, now public acceptance of risks and public trust in the government and the industry have declined and (fake) information on these risks is only a few clicks away. Nowadays, governments and industries have to inform the population extensively about the benefits and risks of interventions in a context of uncertainty and conflicting information. Other measures to acquire and preserve public support are the creation of a truly independent system of market authorization to avert the market release of unsafe medicines, the organization of an independent post-surveillance system to detect the occurrence of harmful side effects in the earliest stage possible, and the introduction of a fair compensation scheme for vaccine-related injuries without unreasonable legal obstacles (Parmet, 2011; Parasidis, 2016).
COVID-19 demonstrates another aspect of the complexity of balancing benefits, harms, risks and costs in health policymaking. For instance, which benefits and harms should be weighed against each other? Only benefits and harms for public health or also the economic damage of the lockdown? What about the consequences of lockdowns for mental health or the harm experienced by people whose care was suspended because of lack of capacity?
Health promotion by fostering a healthy lifestyle is a relatively young branch in health policymaking. It took an important place in the Alma Ata Declaration under the auspices of the World Health Organization in 1978. The basic idea is that some diseases can be self-inflicted due to an unhealthy lifestyle. The purpose of health promotion is to encourage people to adopt a healthy lifestyle and create a healthy environment through legislative measures (e.g. reduction of the sugar level in food products), incentive measures (e.g. high-taxed unhealthy food and low-taxed healthy food) or informational measures (e.g. health campaigns).
Paternalistic interventions are not justified by referring to a potential external health risk for other people. They are justified with a view to the welfare of the persons they are directed at (Nys, 2008; Buchanan, 2008). Paternalistic interventions should prevent people from making decisions they may later regret. A distinction can be made between hard and soft paternalism. Hard paternalism includes a ban on risky behavior (e.g. a ban on swimming in poisoned water), soft paternalism only makes healthy attractive or unhealthy behavior unattractive or difficult. Soft paternalism leaves, at least in theory, freedom of choice unaffected.
Because the risky behavior of an individual does not entail a health risk for other people, paternalistic interventions do not involve balancing a public good against an individual good. In practice, however, it is difficult to determine a clear dividing line between the individual and public good. For instance, one may argue that self-inflicted diseases cause high healthcare expenditures or a risk for employers who may lose respected employees. A second problem is under which conditions self-regarding harms can be accepted as a sufficient moral ground for interference with a person’s voluntary choices (Nys, 2008). Sunstein and Thaler (2003) defend the position that, ‘equipped with an understanding of all influences of bounded rationality and bounded self-control, libertarian paternalists should attempt to steer people’s choices in welfare-promoting directions without eliminating freedom of choice’ (p. 1159). In other words, they are willing to accept nudging as an instrument to promote healthy behavior. What they call libertarian paternalism is no oxymoron!
Paternalistic interventions have always been contested, not only on moral grounds but also on economic grounds. Radical libertarians argue that paternalistic state interventions, whether hard or soft, fundamentally conflict with the principles of individual freedom and personal responsibility. They frame these interventions as evidence of the emergence of a ‘nanny state’. People should be able to make their own choices and take personal responsibility for their choices. Moderate critics are concerned about state overreach: the state should be reserved in referring to the risk of self-regarding harm as a motive for public intervention. Unsurprisingly, corporate interests hide behind the principles of freedom of choice and individual responsibility. When Mayor Bloomberg of New York announced his plans for a ban on the sale of sugary beverages in containers larger than 16 ounces, the producers of these beverages pulled out all the stops to ridicule these plans as un-American and an unacceptable infringement of personal responsibility (Wiley et al, 2013).
The case of mandatory motorcyclist helmet legislation in the United States exemplifies how the paternalism-individual controversy may evolve in the health policy arena. While public health advocates followed a utilitarian-type of reasoning (saving lives), opponents of mandatory legislation used libertarian arguments to underpin their position in the debate. The case also casts an interesting light on the role of evidence in controversies on the justification of freedom-restricting measures. Public health advocates referred to empirical evidence as an argument pro mandatory legislation. Their opponents sought to undermine this evidence or denounced it as a valid argument to justify mandatory legislation. The case also highlights how policymakers tried to resolve the dilemma with money transfers.
Privacy is important individual good in modern society. States have issued strict legislation to protect individual privacy. Legislation also protects the use of personal data in medical and epidemiological research. Names must be anonymized and researchers are forbidden to collect or exchange personal information without informed consent.
The privacy issue was prominent on the political agenda during COVID-19. While timely, secure, and reliable data access and sharing were critical to understanding the spread of the virus and developing effective strategies to fight the pandemic, concerns over privacy called for caution and restrictions. For instance, contact-tracing technologies provided crucial information (though not perfect information) on the spread of the virus but this information, if left unchecked, could also be used for collecting and sharing personal data, mass surveillance, limiting individual freedoms, and challenging democratic governance. Given the sensitivity and urgency of the issue, countries introduced legal frameworks to support their extraordinary policy measures to control the spread of the virus while protecting the privacy of their citizens. In some cases (e.g. Germany), governments had to withdraw their original version of the framework because critics considered it too great an incursion of privacy. Privacy concerns were also prominent in discussions on developing a corona-app for tracing and warning purposes. While acknowledging the potential value of the app, the Dutch Privacy Authority argued that technical safeguards in the app were insufficient. The Authority had in particular concerns about the operating system and the risk that tech giants could misuse data for private purposes (DPA, 2020).
The need for priority setting in health care is associated with the scarcity problem. Scarcity of personnel, space, equipment, or budget compels policymakers to make (hard) choices. Who or what should be given priority? Should a new costly medicine be covered in statutory health insurance? Is the aging of the population a reasonable argument for prioritizing long-term care? Who should be given priority in vaccination campaigns? How to set priorities in a situation of shortage of IC capacity during COVID-19 (the so-called ‘severe triage scenario’)? Is it reasonable to prioritize COVID-patients at the expense of other patients? To quote the American health economist Fuchs (1974): ‘Who Shall Live?’
Some strategies for resolving the scarcity problem have a low ‘moral status’. Rationing by organizing a lottery or applying the principle of ‘first come, first served’ could mean that sick persons will be deprived of necessary health care. Rationing by market principle implies that people with ample financial resources have better access to health care than other people. Each of these rationing strategies has distributive effects that, in their opponents' view, conflict with the basic principles of social justice. Following a utilitarian line of reasoning in a situation of scarcity, those patients should be given priority who are most to rely on health care and, if that is unachievable, to those patients with the best medical prognosis.
Value pluralism and judgment pluralism are potential sources of conflicts. However, conflicts may not hinder practical cooperation. For instance, contestants can decide to bury their disagreements for a while or agree to disagree. By contrast, the settlement of normative conflicts can be complex. Negotiating a compromise on material issues (e.g. the quest for extra budget) compares relatively easily to resolving conflicts on deep-seated moral principles. The strategy of ‘give and take’ in settling conflicts on material issues is of limited value in a situation of conflicting moral judgments. The politics of motorcycle helmets in the United States demonstrates the limited value of evidence in politicized conflicts. Opponents simply refused to accept the evidence. Freedom of choice was an absolute priority for them.
However, negotiating a compromise on morally controversial issues is not impossible. Binding the execution of a contested practice (e.g. research on rest embryos) to strict conditions, making exemptions for specific categories of people (e.g. exemption from vaccination), or making controversial policy measures temporary (e.g. a lockdown or curfew) are examples of strategies for the settlement of moral conflicts. Moral conflicts can also be settled by majority voting. The new Dutch Donor Act which came into effect in 2020 and involved a switch from the opt-in model to the opt-out model to raise the number of potential donors was eventually approved by a one-vote majority. Sometimes, the political majority pushes through highly controversial regulations. An example is the decision of the government of the state of Texas in 2021 to ban abortion from as early as six weeks and allow anyone to sue involved in the procedure. What also happens is that court rulings play an important role in depoliticizing moral dilemmas and paving the way for a broadly accepted solution. An example is the introduction of legislation on euthanasia and other forms of medical assistance in dying (Box 9.7).
Box 9.7 Policymaking on euthanasia and other forms of medical assistance in dying in the Netherlands
In 2002, the Netherlands formally legalized euthanasia and medical assistance in dying at a patient's request. The Act on the Termination of Life on Request and Assisted Suicide permits euthanasia, defined as the active termination of life at the patient’s voluntary and well-informed request, under strict conditions. These conditions involve a repeatedly expressed voluntary and earnest patient request for euthanasia and unbearable suffering without hope for improvement. Patients do not have a right to euthanasia, nor are physicians obligated to perform euthanasia. Regional review committees assess in retrospect whether legislation has been applied properly. Physicians who fail to fulfil the due criteria can be prosecuted.
The passing of the bill on euthanasia marked the provisional end to a development that originated in the late 1960s and early 1970s under the influence of the progressing secularization and individualization in society. Since the issue was highly controversial, the government sought to depoliticize and remove it from the political agenda by repeatedly asking for external advice. In various publications, the Dutch Royal Medical Association came up with suggestions for strict criteria under which euthanasia could be permitted. Meanwhile, courts had to judge several cases of active medical assistance in dying. Because the Criminal Code did not recognize euthanasia as a legitimate intervention, they formulated criteria under which strict conditions euthanasia by a physician could be excused. Actually, courts had to fill the gap in legislation left by the government and the Parliament. The 2002 legislation largely codified the existing judicial practice.
To a great extent, the political controversy on euthanasia corresponded with the dividing line between religion-based and secular political parties. While proponents spoke out for it on the principle of human dignity and freedom of choice, opponents reasoned that life was God-given and that mankind had no right to terminate it. Other arguments opponents put forward were the fear of a slippery slope, the risk that severely ill patients would feel social pressure to request euthanasia, and the availability of good alternatives to euthanasia. The 2002 legislation has never stopped the debate. New issues were whether euthanasia is permitted if people feel lonely and tired of life without unbearable suffering, and how to deal with people with dementia who can no longer express their own will. The practice of euthanasia indicates that the interpretation of the set of strict conditions under which it is legally permitted has gradually been stretched after its legalization in 2002.
Source: Andeweg et al, 2019.
Moral issues can be politically divisive. One explanation for this is the collective nature of public health regulation. The obligation to wear a seatbelt when driving a car or set speed limits to save lives are regulations nobody can escape from. Politicization is also likely to happen if deeply seated normative beliefs (core beliefs) clash. In many countries, emotionally charged issues such as medical assistance in dying at the voluntary request of the patient or abortion have elicited heated political debates. Policy measures with coercive impact, such as mandatory childhood vaccination programs or the obligation of healthcare workers to be vaccinated against COVID-19, have also proven highly controversial. Opponents filed lawsuits with the request to repeal these measures. In the United States, the Supreme Court decided in 2022 that the landmark decision in Rue versus Wade missed a legal basis in the Constitution. This highly controversial decision meant that the right to abortion was no longer protected by federal law.
Politicization fuels polarization if moral beliefs coincide with political dividing lines and are used as a political tool to discredit opponents. In various countries, populists, driven by a profound distrust of ‘elites’ or ‘political cartels’, seized the pandemic to profile themselves in the political arena. A populist party in the Netherlands denounced the government’s decision that visitors of public spaces (e.g. bars, restaurants, public spaces, and sports matches) had to show a QR-code as evidence of being vaccinated as an attempt to introduce ‘a medical apartheids-state with QR-slaves’ (De Volkskrant, 17 September 2021).
A defining characteristic of polarized debates on moral issues is the adoption of a deontological style of reasoning. A single value is given so much weight that there is little room for other values and a balanced perspective. Weighing the benefits and costs of alternative strategies – the essence of the utilitarian model of reasoning in value dilemmas – is absent.
The politicization of moral issues is associated with distrust in science and government. Evidence is contested, ignored, or discredited as ‘fake news’ or ‘just another opinion’. Social media are an excellent platform to spread alternative theories for which often no evidence exists. ‘Cherry picking’ by the selective use of evidence confirming one’s own beliefs or the creation of alternative facts nowadays spreads rapidly. Government information is systematically cast into doubt by a vocal minority. Hard-core opponents to mandatory vaccination are skeptical of the safety of vaccines and warn of concealed adverse health effects. Some argue that the state works hand in hand with the profit-driven pharmaceutical industry. In her analysis of the role of law in the H1N1 vaccine campaign in the United States, Parmet (2011) cites Fisher, who described the federal government’s subsidization of the development of pandemic vaccines, the large-scale purchase of these vaccines and legal immunity for vaccine manufacturers as a ‘pharmaceutical company stockholder dream scenario’ at the expense of the taxpayer (p. 145).
The central proposition of the normative model in health policy analysis is that health policymaking involves normative or moral choices. Health policymaking cannot be reduced to an information-driven process. The ultimate value in health policymaking is health. Health policymaking aims at the protection and promotion of public health. However, health is not only a value of itself. It is also an instrumental value for economic prosperity. Because of the presence of multiple values in society (value pluralism), policymakers are confronted with moral dilemmas for which no easy solutions are available. The resolution of these dilemmas is a complicated issue because of judgment pluralism which means that actors in most situations have differing ideas about their resolution. Value pluralism and judgment pluralism are important sources of normative conflicts.
The purpose of the normative model is to focus the attention of health policy analysts on the explicit or implicit normative choices in health policymaking. Below is a list of research suggestions from a normative perspective:
Which values are prominent in health policymaking (value pluralism), and which actors stand for these values? Which value conflicts or moral dilemmas are policymakers and other actors confronted with?
Which concrete meaning do they give to these values, and what is their resolution of moral dilemmas (judgment pluralism)?
Which contextual factors influence the resolution of moral dilemmas?
Can an increase in value conflicts be observed? Which are these value conflicts?
Which normative choices underlie problem formulation, the choice of the policy goals, and policy instruments? Which value orientations form part of actors' assumptive world (policy paradigm)?
Do values and analysis intersect in the health policymaking process?
Which normative choices underlie the governance structure of health policymaking?
The normative model in health policy analysis has implications for the advisory role of health policy analysts. They must develop a good understanding of the normative ‘face’ of health policymaking and support policymakers with critical questions about their (normative) policy beliefs and choices and the normative implications of these beliefs and choices. Furthermore, it is their task to advise and assist policymakers in approaching moral dilemmas and conflicts in health policymaking. This task requires that health policy analysts are trained in public health ethics.
Andeweg R, Irwin G, Louwerse T (2020). Governance and Politics of the Netherlands. Red Globe Press (5th edition).
DPA (Autoriteit Persoonsgegevens) (2020). Privacy Gebruikers Corona-app Onvoldoende Gewaarborgd. https://autoriteitpersoonsgegevens.nl/nl/nieuws/ap-privacy-gebruikers-corona -app-nog-onvoldoende-gewaarborgd.
Beauchamp T, McCullough L (1984). Medical Ethics: The Moral Responsibility of Physicians. Englewood Cliffs.
Berenson R, Cassel Chr (2009). Consumer-driven Health Care May Not Be What Patients Want – Caveat Emptor. JAMA, 301(3): 321-323. doi: 10.1001/jama.2008.994.
Brusselaers N, Steadson D, Bjorklund K, Breland Stilhoff Sörensen Jewing A, Bergmann S, Steineck G (2022). Evaluation of Science Advice during COVID-19 Pandemic in Sweden. Humanities & Social Sciences Communications. https://org/10.1057/ s41599-022-01907-5
Buchanan D, Miller F (2006). A Public Health Perspective in Research Ethics. Journal of Medical Ethics, 52: 729-755. doi: 10.1136/jme.2006.015891
Buchanan D (2008). Autonomy, Paternalism, and Justice: Ethical Priorities in Public Health. American Journal of Public Health, 98(1): 15-21. doi: 10.2105/AJPH.2007.110361
Childress J, Faden R, Gaare R, Gostin L, Kahn J, Bonnie J, Kass N, Mastroianni A, Moreno, Nieburg (2002). Public Health Ethics: Mapping the Terrain. Journal of Law, Medicine & Ethics, 30: 170-178. doi: 10.1111/j.1748-720x.2002.tb00384.x.
Conrad P (1992). Medicalization and Social Control. The Sociological Review, 20(4): 487-504. doi.org/10.1146/annurev.so.18.080192.001233
Daher M (2015). Patient Rights. In: Encyclopedia of Global Bioethics. Springer Science: 1-9.
Davies B. Savulescu J (2019). Solidarity and Responsibility in Health Care. Public Health Ethics, 12(2): 133-144. doi: 10.1093/phe/phz008.
Dawson A (2011). Public Health Ethics: Key Concepts and Issues in Policy and Practice. Cambridge University Press.
Dondorp W, De Wert G (2019). The Role of Religion in the Political Debate on Embryo Research in the Netherlands. In: Willems U and Weiberg-Salzman M (eds), Religion and Biopolitics. Springer.
Foucault M (2008). The Birth of Biopolitics (published after his death and based upon radio recordings).
Frissen P (2023). De Integrale Staat [The total state]. Boom
Fuchs W (1974). Who Shall Live? Health, Economics, and Social Choice. New York: Basic Books.
Gostin LO (2015). Law, Ethics and Public Health in the Vaccination Debates: Politics of the Measles Outbreak. JAMA, 515 (11): 1099-1100. doi: 10.1001/jama.2015.1518.
Greer S, King E, Massard da Fonseca E, Peralta-Santos A (eds) (2021). Coronavirus Politics: The Comparative Politics and Policy of COVID-19. University of Michigan Press.
Hannan F, Yamey G. Abassi K (2021). Profiteering From Vaccine Inequity: A Crime against Humanity? British Medical Journal, 374: n2027. doi: 10.1136/bmj.n2027.
Hendrix K, Sturm LA, Zemet GD, Meslin EM (2016). Ethics and Childhood Vaccination Policy in the United States. Public Health Ethics, 106(2): 275-278. doi: 10.2105/AJPH.2015.302952.
Heywood A (2015). Political Theory: An Introduction. Red Globe Press (4th edition).
Kymlicka W (2002). Contemporary Political Philosophy: An Introduction. Oxford University Press.
Light D (1992). The Practice and Ethics of Risk-rated Health Insurance. Journal of the American Association, 267(18): 2503-2508.
Lupton D (1995). The Imperative of Health: Public Health and the Regulated Body. SAGE Publications.
Maas P (1988). Parlement & Polio (Parliament & Polio). Staatsdrukkerij en Uitgeverij.
Moser Jones M, Bayer R (2007). Paternalism & Its Discontents. American Journal of Public Health, 97(2): 208-217. doi.org/10.2105/AJPH.2005.083204
Moynihan R, Heath I, Henry D (2002). Selling Sickness: The Pharmaceutical Industry and Disease Mongering. British Medical Journal, 324: 886-890. doi: 10.1136/bmj.324.7342.886.
Nys Th (2008). Paternalism in Public Health Care. Public Health Ethics, 1(1): 64-72.
OECD (2021) Ensuring Data Privacy as We Battle COVID-19. www.oecd.org/corona virus /policy-responses/ensuring-data-privacy-as-we-battle-covid-19-36c2f31e/
Parasidis E (2016). Public Health Law and Institutional Vaccine Scepticism. Journal of Health Policy, Politics and Law, 41(6): 137-149. doi: 10.1215/03616878-3666204
Parmet W (2009). Populations, Public Health and the Law. Georgetown University Press.
Parmet W (2011). Pandemics, Populism and the Role of Law in the H1N1 Vaccine Campaign. Northeastern Public Law and Theory Faculty Working Paper Series, no. 48-2010.
Pellegrino E (1999). The Commodification of Medical and Health Care: The Moral Consequences of a Paradigm Shift from a Professional to a Market Ethic. Journal of Medicine and Philosophy. 24(3): 243-266. doi: 10.1076/jmep.126.96.36.1993.
Pepper S (1958). The Sources of Value. University of California Press.
Porter M (2010(. What is Value in Health Care? New England Journal of Medicine, 363:2477-248. doi/10.1056/NEJMp1011024
Saguy A, Riley K (2005). Weighing Both Sides: Morality, Mortality, and Framing Contests over Obesity. Journal of Health Politics, Policy and Law, 30(5): 869-921. doi: 10.1215/03616878-30-5-869.
Sandel M (2009). Justice: What is the Right Thing to Do? Farrar, Straus and Giroux.
Sandel M (2015). What Money Can’t Buy: The Moral Limits of Markets. Allen Lane.
Schoen C, Doty M, Collins S, Holmgren A (2005). Insured But Not Protected: How Many Adults Are Underinsured? Health Affairs , 24 (suppl). doi-org.mu.idm.oclc.org /10.1377/ hlthaff.w5.289
Schmidt H (2009). Personal Responsibility in the NHS Constitution and the Social Determinants of Health Approach: Competitive or Complementary? Health Economics, Policy and Law, 2: 129-138. doi: 10.1017/S1744133109004976.
Sharon T (2021). Blind-sided by Privacy? Digital Contact Tracing, the Apple/Google API and Big Tech’s Newfound Role as Global Health Policy Makers. Ethics and Information Technology 23 (suppl 1):545-557. doi: 10.1007/s10676-020-09547-x.
Spitzer M (2021). The Politics of Gun Control. Routledge.
Stone D (1993). The Struggle for the Soul of Health Insurance. Journal of Health Politics, Policy and Law, 18(2): 287-319. doi: 10.1215/03616878-18-2-287.
Streeck W, Thelen K (eds) 2005. Beyond Continuity. Institutional Change in Advanced Political Economies. Oxford University Press.
Swierstra T, Rip A (2007). Nano-ethics as NEST-ethics: Patters of Moral Argumentation About New and Emerging Science and Technology. Nanoethics, 1(5): 5-20. doi.org/10.1007/s11569-007-0005-8
Sustain C, Thaler R (2005). Libertarian Paternalism is not an Oxymoron. The University of Chicago Law Review, 70(4): 1159-1202.
Tanenbaum S (2016). What is the Value of Value-based Purchasing? Journal of Health Politics, Policy and Law, 41(5): 1033-1046. doi: 10.1215/03616878-3632254.
Ten Have H. Ter Meulen R, van Leeuwen E (2009). Medische Ethiek. Bohn, Stafleu en Van Loghum.
Ter Meulen R (2018). Solidarity and Justice in Health and Social Care. Cambridge University Press.
Wagner D (2022). The Emergency State: How We Lost Our Freedoms in the Pandemic and Why it matters. Bodly Head.
Wetenschappelijke Raad voor het Regeringsbeleid (2005). Waarden, Normen en de Last van het gedrag [Values, Norms and the Burden of Behavior]. Amsterdam University Press.
Wiley L, Berman M, Blanke D (2013). Who’s Your Nanny? Choice, Paternalism and Public Health in the Age of Personal Responsibility. Journal of Law, Medicine and Ethics, 41:88-91. doi.org/ 10.1111/jlme.12048
Willemsen M (2018). Tobacco Control Policy in the Netherlands: Between Economy, Public Health and Ideology. Palgrave MacMillan.
World Health Organization (2021). Obesity and Overweight. https://www.who.int/news-room/fact-sheets/detail/obesity-and-overweight
Zuboff S (2019). The Rise of Surveillance Capitalism. Profile Books.