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Question to be answered: What is your biggest “take-away” from this course?

Question to be answered: What is your biggest “take-away” from this course?

Write your personal reflection – not a research paper with references.

Reflection will be graded for the following criteria:

Relevance: 1 of the course topics selected

Conciseness: 1 page, 500-word maximum/single-spaced

Accuracy: specific course content discussed; other reliable sources mentioned, if applicable

Thoughtfulness: 2-3 organized paragraphs, with a logical transition between paragraphs

Importance: 2-3 key points

Week 1

https://vimeo.com/306440239

Chapter 4: Ethics in Transdisciplinary Practice

Learning Objectives:

Define three basic meanings of “ethics.”

Explain the distinction between deontology and consequentialism in ethical analysis.

Understand the basic history of professional ethics in public health.

Distinguish between the principles and procedures in medical ethics, research ethics,

legal ethics and public health ethics.

Identify ways in which ethics are supported or enforced through law.

Ethics and Professional Ethics

Ethics has at least three important meanings for practitioners working at the intersection of public health and law. First, ethics is a field of philosophical inquiry aimed at defining the “Good”—what is moral, what is decent, what is right. Ethics differs from law or religion or social norms in its how it does so: the Good is defined not through sacred texts or divine revelation, but rather an explicit process of reasoning. Although ethical principles may be influenced or derived from laws, religious beliefs, or conventional values, the distinctive quality of ethics is to justify ethical principles through reasoned argument rather than divine will, democratic deliberation, or custom.

Ethics is also the label for the set of basic principles that emerge from ethical deliberation. We will discuss several codes of ethics or ethical systems in this Chapter. These codes display ethics as objective statements of the good that people who adhere to a given profession or field are expected to accept and practice, unless they can use the ethical reasoning process to convince others that these principles are in some way incorrect. These codes are not developed or written like laws. They are nonetheless enforced, as we will discuss: at the very

least through some form of professional sanction, but sometimes through legal mechanisms like regulations or private lawsuits.

An ethical code sets out basic principles of good conduct at a fairly abstract level. In life, people (and the organizations they belong to) are confronted with particular situations that pose ethical dilemmas, but for which ethical principles may not supply an immediately obvious resolution. Ethical principles are meant to be a guide to virtuous behavior, so it is also important to understand the term ethics as naming an individual’s commitment to a moral course of conduct in life. The commitment to ethics in this sense consists of a desire to know what the good is in any particular moment of decision, to actually do the good thing, and to integrate all this in a lifelong practice of reflection and learning. Although professional ethical codes can entail sanctions, an ethical person regulates his or her own behavior, motivated by the desire to be virtuous rather than fear of punishment or hope of reward.

Ethics has a long history in all these forms. Defining the good, and the personal struggle to pursue it, were central preoccupations of the classical Greek philosophers like Plato and Aristotle, and has been pursued by philosophers ever since. The idea of “professional ethics” traces back to the oath of Hippocrates that is still sworn by new doctors beginning their careers. Medicine also led the development of modern professional ethics: Thomas Percival, an English physician, published a code of professional ethics at the turn of the 19th century, and the American Medical Association (AMA) adopted the first national code of medical ethics at its founding in 1847. The American Bar Association (ABA) adopted its first Canon of Ethics in 1908, and they were quickly adopted by nearly all state and local bar associations. Codes of professional ethics have proliferated in the last half-century, so that most professions or professional societies, from architecture to zoology, have one (you can Google it!).

Ethics are not just about clean hands and pure hearts. Professional ethics have been a matter of interest to sociologists seeking to understand how professions define themselves, gain authority and evade outside interference in complex modern societies. Ethics are obviously a way that professions can regulate their members, including in ways that have little to do with virtue: codes of ethics have often, for example, limited the extent to which a professional can do business in collaboration with a non-professional. Ethical codes support professional expertise in the argument for self-regulation over government regulation. Ethics and professionalism can be seen as a third way or third logic (between the market and government bureaucracy) for organizing and regulating individual behavior in society: markets incentivize behavior with the promise of wealth; bureaucracies depend on external oversight and the threat of punishment; professionalism and ethics mobilize internalized values and a personal commitment to proper conduct (Freidson 2001). The rise of ethics has made the profession of ethicists a powerful group, appointed to committees and called upon by the media to act as arbiters in public and private matters. As we will see, codes of ethics have also become bound up with law in subtle and important ways.

What Is Good?

Philosophers will generally agree that ethics entails defining the Good; they just can’t agree on how, exactly, to do it. For those entering transdisciplinary public health practice, it is useful to understand two powerful approaches that are still in use in professional and research ethics in our various fields. In the deontological approach, we judge our actions by their fidelity to the applicable moral rule or principle, which we are expected to obey without regard to consequences. For example, “thou shalt not kill” is a binding rule, as stated, even if we could

save innocent people by killing a marauding desperado. Moral reasoning works by identifying the applicable rules and deriving through reason an understanding of the conduct those rules require. The end, no matter how nice, cannot justify the means if the means entail violating an ethical principle. By contrast, in the consequentialist or utilitarian approach, the goodness of an action is assessed by the consequences the action is expected to produce. Killing a murderer to save the innocent may not just be permitted, it may be a duty. Beneficial ends can justify costly means, as long as the benefit/cost ratio is positive.

Deontology is the dominant mode of reasoning in medical, professional and research ethics; public health ethics tend to be consequentialist. The difference may be less in the kind of values espoused, as in the kind of ethical conundrums the different fields encounter. In medicine, law, and other helping professions, ethics focus on relationships with patients or clients, one at a time. In public health, the “client” is the democratically elected government, and the “patient” is a population. Trade-offs between ends, and imperfect means, are assumed. Research ethics has links to both a population and individual perspective, but historically developed out of biomedical ethics and still retains its individualistic cast. These differences in approach have continued importance in practice, which we can illustrate with a famous thought experiment.

In the “trolley dilemma,” a man is standing on a bridge above a rail yard. He sees that a runaway trolley car is heading toward a group of five workers who are making too much noise to notice or be warned. They will surely be killed unless the watcher runs and turns the switch to direct the car onto another track where one person is working and will surely be killed. What should the person do? In consequentialist theory, this should be easy: kill one to save five. But that feels wrong to many people, because we have a strong rule against killing and an instinctive

discomfort with treating a person as merely a means to an end. The deontologist has an equally easy answer: thou shalt not kill, even if the consequence is five preventable accidental deaths. Yet the deontologist, too, is uneasy: we’re just going to watch those people die? And it gets worse as the stakes get bigger: what if we replace the five workers with a group of 100, and make them school children? What if the issue is whether or not to mandate a vaccine that will prevent hundreds of thousands of deaths but will also cause a dozen deaths due to side effects?

The Many Flavors of Professional Ethics

Codes of ethics differ because the kinds of professional or other work they govern differ, and because they have emerged at different times, for different reasons. Legal ethics have deep historical roots in the regulations that judges and legislators set for the emerging practice of law in medieval England. Concerns of competence, and honest dealing with clients and the court, predominated. In the ABA’s 1908 Canon, and the subsequent ABA ethical models through the present Model Rules of Professional Responsibility, legal ethicists addressed these issues but within a larger attempt to understand the role of a lawyer who was at once an officer of the court (with duties to the system), a servant of the client (with duties to the client) and an expert practitioner of the law (with an obligation to exercise independent moral and professional judgment). Present Rule 2.1, for example, states:

I n representing a client , a lawyer shall exercise independent professional judgment and render candid advice. In rendering advice, a lawyer may refer not only to law but to other considerations such as moral, economic, social and political factors, that may be relevant to the client’s situation.

Rule 1.2 requires the lawyer, within certain limitations, to follow the client’s wishes in a matter, but Rule 3.3 sets out in detail situations in which the lawyer may have to balance or even abandon complete fidelity to the client in order to ensure that the court is not mislead. There are many interesting and challenging moral questions embedded in the polydirectional duties of a lawyer, but the Model Rules also deal with more prosaic issues, like the sale of legal practice, advertising and “Firm Names and Letterhead.” These are more than professional rules enforced by the disapproval of the professional’s peers. Every US state has adopted the rules as statutes or otherwise binding and enforceable rules of conduct for lawyers, who can be disciplined and lose the right to practice for violating them.

The AMA’s ethical code includes some inward-looking professional rules (affirming the right of a physician to be “free to choose whom to serve, with whom to associate, and the environment in which to provide medical care”), but carry forward the key ideas of professional competence, pursuit of the patient’s welfare (beneficence), and the foundational Hippocratic command to “first, do no harm” (non-maleficence) (Association 2016). Doctors were also intimately involved with the development of research ethics. Research has always been an important component of medicine and medical practice. Doctors and the rest of the world were shocked by the atrocities of Nazi doctors, who conducted torturous and murderous experiments on concentration camp prisoners, outrages detailed in the Nuremberg trials after WWII. In the trial verdict, the court listed ten basic principles of legitimate medical research (subsequently referred to as the “Nuremberg Code”), including the primacy of voluntary participation, protection of the research participants, and the value of the research in relation to risks. It took a while, but by the 1960s, American and British doctors had noticed that the record of our own research on patients, while not as quite as racist and callous as the Nazi record, left much to be

desired (Beecher 1966; Pappworth 1967). Nor was public health research immune: perhaps the single most infamous study in modern American history was the Tuskegee Study of Untreated Syphilis in the Negro Male, funded by the Public Health Service, which followed 600 black men for 40 years without ever treating the ones who had the disease, even after the discovery of penicillin.

Medical ethicists took this on, and applied their evolving ideas of medical ethics to the research enterprise. The World Medical Association, meeting in Helsinki in 1964, adopted a declaration setting forth basic ethical principles for medical research with human subjects, based on the Nuremberg Code. Outrage at the Tuskegee Study and other instances of unethical medical research led to a national commission and a document called the Belmont Report, which laid the ground work for the ascendance of four basic ethical principles in research: respect for persons, beneficence, non-maleficence, and justice in the conduct of research and the distribution of its benefits. These ethical principles essentially became law when they were made the foundation of federal regulations governing the ethical conduct of research conducted by entities receiving federal funds. The federal regulations known as the Common Rule require recipients of federal funds to promise that research they conduct, whether or not funded by government, will be reviewed by an Institutional Review Board and found to be consistent with these four principles. Detailed requirements for informed consent are also set out, along with other specific requirements pertaining to common research issues like research on vulnerable populations such as children or prisoners; use of inducements for participation; and record-keeping. The Office for Human Research Protections in the Department of Health and Human Services enforces compliance with the Common Rule, and sanctions can range from training to suspension from research funding, which may be applied to individuals or institution-wide.

The Common Rule is now a significant regulatory system. All universities doing any significant amount of research employ full-time staff to manage compliance, ensure proper training of researchers, and keep track of studies. Over the years, the system has been criticized for its bureaucratic burden on the research process, for arbitrary decisions, and for a chilling effect on certain kinds of research (like research with children) that require more intensive oversight. Perhaps the most enduring criticism of the system was that it was devised by doctors and medical ethicists on a biomedical model and so is unsuited to guide or regulate research in other fields like anthropology, sociology — or public health. Ethnographers, for example, complained that requiring detailed protocols setting out the questions that would be asked of subjects was impossible in studies in which researchers would be living for an extended period of time in a community as participant observers. Oral historians, who could think of few ways in which their subjects could be harmed, asked why they were subject to the same rules as surgeons testing alternative invasive procedures. Public health researchers found that principles designed with clinical research in mind did not capture the range of duties, considerations and dilemmas they faced.

Public Health Ethics, Human Rights and the Law

To provide better guidance targeted at public health work, a working group of public health experts from both governmental and non-governmental entities developed an ethics code, introduced in 2002 (Thomas et al. 2002). The current version sets out 12 principles:

1) Public health should address principally the fundamental causes of disease and requirements for health, aiming to prevent adverse health outcomes.

2)  Public health should achieve community health in a way that respects the rights of individuals in the community.

3)  Public health policies, programs, and priorities should be developed and evaluated through processes that ensure an opportunity for input from community members.

4)  Public health should advocate and work for the empowerment of disenfranchised community members, aiming to ensure that the basic resources and conditions necessary for health are accessible to all.

5)  Public health should seek the information needed to implement effective policies and programs that protect and promote health.

6)  Public health institutions should provide communities with the information they have that is needed for decisions on policies or programs and should obtain the community’s consent for their implementation.

7)  Public health institutions should act in a timely manner on the information they have within the resources and the mandate given to them by the public.

8)  Public health programs and policies should incorporate a variety of approaches that anticipate and respect diverse values, beliefs, and cultures in the community.

9)  Public health programs and policies should be implemented in a manner that most enhances the physical and social environment.

10)  Public health institutions should protect the confidentiality of information that can bring harm to an individual or community if made public. Exceptions must be justified on the basis of the high likelihood of significant harm to the individual or others.

11)Public health institutions should ensure the professional competence of their employees.

12) Public health institutions and their employees should engage in collaborations and affiliations in ways that build the public’s trust and the institution’s effectiveness.

Consideration of this code reveals several basic ethical tensions in public health practice. For example, principle 7 refers to the “mandate” given public health. From a legal perspective, this refers in part to the fact that the agencies and activities that do core public health work are of the government, given powers by legislation and regulation, and even constitutions. In democratic theory, governments rest on the consent of the governed, and policy decisions are subject to voter approval at least indirectly in regular elections. Yet the Code also calls for communities to have a chance to give “informed consent” to programs. If a government agency decides to use its authority to require aerial mosquito spraying to control Zika virus, residents in the community to be sprayed have a practical interest and a moral right in being consulted, and the wise agency tries to bring people along with controversial actions. Ultimately, the agency is carrying out a legal mandate of the government; it has consent in that sense. Does the code really give the community a veto? Should it? Similarly, what is the ethical thing for a health worker or agency to do if the city council or the legislature has not provided the resources or authority to “work for the empowerment of disenfranchised community members”?

The complex relationship between ethics, law and public health shows up in other interesting ways. International law and the law of many nations includes forms of a right to health and obligations to respect, protect, and fulfill other rights that clearly relate to health, like education, housing, workplace safety, and gender equity. Commentators have argued that a human rights perspective helps ethics broaden its gaze to encompass population-level problems of inequity and injustice, while ethics can in turn strengthen legal claims in human rights litigation (Nixon and Forman 2008). Law also steps in to provide definitive answers to matters that continue to be questions in ethical discussion. Medical ethicists, for example, may debate whether hospitals have an ethical duty to treat all patients that show up for treatment, regardless of ability to pay. In practice, many U.S. hospitals by the 1980s were declining to treat emergency patients, including women giving birth, if they could not pay, leading to a practice of shunting patients to charity providers, known as “patient dumping.” Congress barred this practice as a matter of law in 1986, passing the Emergency Medical Treatment and Active Labor Act (42 U.S.C. § 1395dd), which required hospitals to provide obstetrical services to women in active labor, and to at least stabilize other emergency patients before transferring or discharging them. Finally, the law sometimes indirectly enforces ethics. In a notable example, the Maryland Court of Appeals held that the informed consent document created an enforceable contract between the research participant and the research institution under which the participant could sue for damages based on insufficient disclosure of research risks (Grimes v. Kennedy Krieger Institute 2001).

Conclusion

We have looked at the differing forms of ethics a public health practitioner will be likely to encounter in day-to-day work as if they were distinct and separate. But all these systems are operating at the same time: a lawyer and a doctor working together on a vaccination project in a public health agency will bring their professional ethics with them, and may find themselves dealing with research ethics and public health ethics. These systems of thought, though they can

all be called “ethics,” come with different histories, perspectives and concerns that do not always complement each other and may conflict. Nor, in real life, are ethics purely a matter of the individual or cooperative pursuit of virtuous behavior. Some, maybe most, of our ethical principles are now also legally enforceable rules.

So ethics are not simple, and they do not live purely in an abstract realm of philosophy. Failure to follow ethical principles when they are actually operating as legal rules or standards of reasonable behavior can lead to serious trouble for clients, lawyers, researchers, and practitioners in public health. But ethics also represent and support each person’s internal drive to do the right thing. Indeed, a danger of making ethics into enforced rules is that it can lead to people working to the rule: they do what’s required and don’t do or think about any more. The contemporary public health professional is challenged to develop a personal commitment to professional and public health ethics, while understanding and maintaining fidelity to the rules as they stand in professional codes and the law, and to do this in cooperation with people from a range of professional backgrounds. As we practice public health law, we run into dilemmas of real weight that cannot be answered to the complete satisfaction of everyone, or that pose tragic choices for everyone. A shared commitment to ethical behavior, careful collection and assessment of the facts, and a strong understanding of applicable law are crucial to effective
d ecision-making.

Further Reading:
• Halpern, S. D. (2004). Medical Authority and the Culture of Rights. J. Health Pol., Pol’y

& L., 29, 835-852.

Principles — Respect, Justice, Nonmaleficence, Beneficence

The focus of this perspective is on the four PRINCIPLES supported by or compromised by the question or issue at hand.

Philosophers Tom Beauchamp and Jim Childress identify four principles that form a commonly held set of pillars for moral life.

Respect for Persons/Autonomy

Acknowledge a person’s right to make choices, to hold views, and to take actions based on personal values and beliefs

Justice

Treat others equitably, distribute benefits/burdens fairly.

Nonmaleficence (do no harm)

Obligation not to inflict harm intentionally;
In medical ethics, the physician’s guiding maxim is “First, do no harm.”

Beneficence (do good)

Provide benefits to persons and contribute to their welfare. Refers to an action done for the benefit of others.

Draws on principles or pillars that are a part of American life – familiar to most people, although not by their philosophical term

Compatible with both outcome-based and duty-based theories (respect for persons and justice are duty-based, while nonmaleficence and beneficence are outcome-based).

Provides useful and fairly specific action guidelines

Offers an approach that is appropriate for general bioethics and clinical ethics

Requires weighing and balancing – flexible, responsive to particular situations

Lacks a unifying moral theory that ties the principles together to provide guidelines

Principles can conflict and the theory provides no decision-making procedure to resolve these conflicts

Difficult to weigh and balance various principles

Autonomy in some cultures refers to individual autonomy, while in others

refers to group/family/community autonomy

Adapted with permission from Laura Bishop, Ph.D., Kennedy Institute of Ethics, Georgetown University

Definitions of Ethics

Merriam-Webster Dictionary:

A set of moral principles;

a theory or system of moral values;

the principles of conduct governing an individual or group (professional)

Black’s Law Dictionary:

A system of moral tenets or principles;

the collective doctrines relating to the ideals of human conduct & behavior

Areas of Ethics & Examples

Law:

Commingling (combining) funds

Medicine:

Obtaining informed consent

Bioethics:

Withholding/withdrawing life support

Public health

Ordering isolation/quarantine

4 General Ethical Principles

Respect for persons

autonomy

Beneficence

“do good”

Non-maleficence

“do no harm”

Justice

“injustice anywhere is a threat to justice everywhere” MLK J

Ethics Examples & 4 General Ethical Principles

Law: Commingling (combining) funds

Principle(s)?

Medicine: Obtaining informed consent

Principle(s)?

Bioethics: Withholding/withdrawing life support

Principle(s)?

Public health: Ordering isolation/quarantine

Principle(s)?

Week 2

Perspectives
The two most important questions for ethical public health

John Coggon1, Lawrence O. Gostin2

1Centre for Health, Law, and Society; University of Bristol Law School; and Bristol Population Health Science Institute, 8-10 Berkeley Square, Bristol BS8 1HH, UK 2O’Neill Institute for National and Global Health Law, Georgetown Law, 600 New Jersey Avenue, NW, McDonough 568, Washington DC 20001, USA
Address correspondence to John Coggon, E-mail: John.Coggon@bristol.ac.uk.

ABSTRACT

Public health ethics is a distinct and established field, and it is important that its approaches and rationales are understood widely in the public health community. Such understanding includes the capacity to identify and combine principled and practical concerns in public health. In this paper, we present a background to the ideas that motivate public health ethics as a field of research and practice, and rationalize these through a critical ethico-legal approach to analysis. Two essential points of inquiry are identified and formulated to allow philosophical and practical agendas regarding public health to be combined. These come through asking the theoretical question ‘what makes health public?’; and the practical question ‘how do we make health public?’. We argue that these two questions require to be addressed if we are to achieve a robust and rigorous, ethical public health.

Keywords ethics, public health

Introduction

Public health rests on a moral mandate.1 This mandate as most commonly articulated falls in two parts: first, it includes an imperative to improve population health (maxi- mizing or optimizing health as a particular social value); second, it includes a duty to mitigate unfair health inequal- ities (a commitment to principles of social justice).2 Given the inherence of ethics to public health, as a vocation and as a practice, it therefore can be said to reflect a social and pol- itical mission. As one of us has written elsewhere:

The public health community takes it as an article of faith that health must be society’s overarching value. Yet politi- cians do not always see it that way […]. What is needed is a clear vision of, and rationale for, healthy populations as a political priority.3

In accordance with the need presented in this quotation, the work of public health ethics, understood in its political context, is to explain and justify the moral mandate that drives public health policy, practice, research and leadership. Equally, public health ethics must provide the means of reflection and communication that allow health to be

promoted in public and political discourse. This is needed if we are to achieve a fairer society in which health needs are met, with particular attention to people who are most vul- nerable or disadvantaged.

The discussion in this paper is accordingly built around two questions. The first represents an inquiry in political philosophy: ‘what makes health public?’ The second represents an engagement in political science and social activism: ‘how do we make health public?’ The framing of these questions is indicative of the perspectives that we have sharpened on our respective journeys into public health ethics and law: one of us entering the field through a route of more ‘detached’ academic study; the other coming originally from a background in social advocacy and political engagement.

Our argument is that answering these two fundamental questions is essential if a rigorous, effective, ethical public health is to be developed. To explain our position, we first reflect on the relationships between ethics and public health. We then explore the theoretical work that is required if we

are to sustain claims that the moral mandate of public health is a compelling one. This leads finally to a discussion of the sorts of understanding that are required to move from the- ory to practice: from theoretical to applied and engaged pub- lic health ethics. We aim to explain the salience of understanding both why and how health is public.

Ethics and public health

Nancy Kass shows how public health ethics developed as a field, first from a point of relative neglect within bioethics, to a second stage from the years 2000–02 as an area that saw a surge of interest in the development of frameworks, to a third stage where there is a focus on questions of justice and populations’ health.4 As the importance of public health ethics as a distinct point of inquiry became apparent at the turn of the century, reflections moved to considerations of what distinguished public health as an area of activity. Concepts such as community, the public, society and health risks did not prominently feature in the vocabulary of main- stream bioethics.5 Scholars in ethics and law needed to examine the sources of the distinctive values relevant to understanding the health of the public, and to be able to address relevant institutional, social, political and professional contexts.6 Public health ethics was thus concertedly created as a fit-for-purpose area of study and practice, distinct from mainstream bioethics. In approaching its distinguishing features, Gostin argued that we could contrast three linkages between ethics and public health. The ethics of public health refers to professional ethics; the values that come from the practice and institution of public health itself. Ethics in public health relates to more critical or analytical understanding as applied to public health: the philo- sophical or bioethical critique of public health activities and agendas. Ethics for public health, by further contrast, denotes advocacy or activism directed to the promotion of the public’s health.7

These distinct points of ethical departure and application underscore both the importance and the diversity of chal- lenges for public health ethics. The dominance of norms and values in biomedical ethics are not apt for analysis of questions regarding population health, and create a skewed and impoverished analytical environment.8 Furthermore, even within materials ostensibly reoriented for appraising and guiding public health ethics, the weighting of individual liberty (of course, a value of great importance) is loaded in such a way that other important social values are wrongfully discounted.9 Public health ethics as a subject of research, education and training may be seen, therefore, as having emerged with a consciously-embraced need to be able to account for and respond to the following tests:

• A need to be conceptually and structurally coherent, and formulated rigorously: guiding values could not just be ‘inherited’ or unreflectively drawn from (say) the principle of respect for individual autonomy or from professional codes;

• A requirement to operate in necessarily political, profes- sional and social contexts: public health ethics would not be relevant if it could not address institutions, communi- ties and the roles of public and private actors that impact the public’s health;

• A necessary potential to have real-world applicability: although its philosophical rationales were essential, the lessons from public health ethics needed to have traction in order to support transformative agendas.

These requirements set public health ethics apart from main- stream bioethics and clarified the importance of its combin- ing meaningful ethical justification with practical mandates concerning public health activities and agendas. As a part of public health itself, public health ethics has to be a transdis- ciplinary field (so e.g. drawing from the expertise of law, which is the primary discipline of each of this paper’s authors).10 And it is for this reason that we identify respect- ively the philosopher’s and the activist’s questions as being the two most important questions for ethical public health: ‘what makes health public’; and ‘how do we make health public?’ We will consider each in turn.

The philosopher’s question: what makes health public?

What we are labeling the philosopher’s question allows us to examine the logically prior points that form the basis of public health: what does health mean, and what significance is there in saying that it is public?11 In relation to the first part of this question, it is well known that health is subject to conflicting meanings, from narrow biomedical definitions based on the statistically normal functioning of the human organism,12 through to very broad accounts of positive well- being and human flourishing, such as the World Health Organization’s concept of ‘complete physical, mental and social well-being.’13 There is not a linear spectrum of con- cepts of health. Rather, there is a plurality of accounts, with a notable added dimension when we contrast individual and population-level understandings.14 In the present paper, we do not aim to advocate for a particular definition, though would urge for the importance of a concept that accounts for positive states of well-being, and for the crucial role of population health to our understandings of social and polit- ical ethics: for example, in explaining that and why

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200 JOURNAL OF PUBLIC HEALTH

systematic health inequalities are problematic.15 Howsoever the question may be answered, public health advocacy and practice require an understanding of what health is, and how health stands in relation to other important values.

As well as needing to be clear on the meaning and scope of ‘health’, we need to understand what the term ‘public’ denotes. Marcel Verweij and Angus Dawson have produced important conceptual analysis exploring the meaning of ‘public’ in ‘public health’. Their work brings both explanatory and evaluative understanding: it allows us to explain and critique, and thereby to direct, health policy and practice.16 Drawing on dominant definitions of public health, Verweij and Dawson highlight two significant implications of ‘public’. First, we have the idea of the public’s health: the point raised above that we gain distinct understandings of health when studied at a population level. This can include understandings of risk as well as levels and incidence of dis- ease. And it allows us to contrast populations within a public, gaining insight not just into aggregate levels of health, but also of the distribution of burdens of disease, and of the attitudes of different populations to the value of health.

Second, we have a focus on coordinated efforts of social organization: the methods of effecting better health outcomes through institutional interventions. In this sense, health is public because it is addressed through collective and targeted social and political measures. No one can alone guarantee the health of individuals or populations, as each of us brings a range of capabilities. The US Institute of Medicine (now the National Academy of Medicine) famously defined public health as ‘what we as a society do collectively to assure the conditions for health.’17 That is, the job of public health is to improve underlying conditions of and for health. To do this ethically, we need to be able to establish the proper mandates and constraints under which government and lawmakers operate. A principled answer is required, in other words, to the question ‘what makes health public?’ This means undertaking a process of reasoning that explains why we should consider that a particular matter concerning health is a shared concern: a concern that we share with one another as members of a political community. It is by explaining what makes health public that we can argue, for example, that smoking tobacco is not just an individual’s own business: that smoking is the concern of others, and of the state.

To exemplify this, consider the following claim, which members of the public health community might treat as self- evident, but which is not and has not historically been treated thus across all social, commercial and political circles:18 that we ought to regulate tobacco use to the point of trying to abolish smoking altogether. This is another way of saying

that the production, sale and consumption of tobacco pro- ducts are public matters; matters that are a political concern. How do we arrive at this point?

Imagine that someone sits down next to you right now and goes to light a cigarette. The following, different lines of reasoning might be given to dissuade her from doing so:

• ‘Don’t smoke; it’s bad for your health.’ This may be characterized as ‘prudential’ reasoning: the rationale for not smoking is presented as advice based on the person’s own well-being; you are inviting the person to reconsider her decision for her own benefit.

• ‘Don’t smoke; it’s bad for the health of other people in the room.’ This may be characterized as ‘interpersonal’ reasoning: the rationale for not smoking is presented as a moral one; protecting others from harm is presented as the reason for reconsidering her decision.

• ‘Don’t smoke; it’s prohibited.’ This may be characterized as ‘political’ reasoning: we have moved to a rationale based on the exercise of the state’s power; we are saying here that the person’s smoking is the government’s business, even if she is unconcerned by harms to her own health or even the health of others. The decision is not hers alone to make because smoking is a public matter in this sense.

It is when we move from the personal and interpersonal to the political that we have arrived at a position that health has been made public (whether through coercive measures, as indicated in the above example, or through other methods of regulation). The ethical task at this political stage is to account for why government may be justified in regulating, and why the means chosen are legitimate.

The philosophical public health literature is rich with different arguments on the basis of ethical justification for making health public. These span radically skeptical positions such as Petr Skrabanek’s, which hold essentially that public agencies have no authority to institute health improvement measures,19 through to theories such as Jennifer Prah Ruger’s, which hold that health is the foundational capability from which human flourishing emanates.20 There is profound philosophical dis- agreement, so we must be able to explain and defend the position that we think justifies collective responsibilities for health. It is essential that arguments be clearly made not just about what health is, but also how it serves as an ethical— ultimately a political—value. To promote public health agendas, we need to be able to explain what makes health, and health- affecting phenomena, a shared concern. We need to explain, for example, why one person’s cigarette smoking is the business of other persons in her community, and of the institutions that govern that community.

Arguments about what makes health public combine philosophical and empirical analysis of the justification of government action across sectors. This is necessarily a political as well as a scientific debate. Some scholars, for example, deny the social determinants of health.21 To respond to such positions and argue that health is and should be a shared value within a community requires both scientific and philosophical critique.22 But so far, the debates simply as framed in this section mostly take place in the university seminar room. If health in reality is going to be made public, the question ‘what makes health public?’ has to be adapted to account for real-world complications concerning social, political, and legal bars that may inhibit perfectly principled and evidence-based arguments that, for example, cigarette smoking is a public concern. And this leads to the question for ethical activism and advocacy: ‘how do we make health public?’

The activist’s question: how do we make health public?

Ethics, including public health ethics, can seem to be too abstract for, and detached from, practical application. A grounding in the real world is needed if we are to move from asking ‘what makes health public?’ to addressing the question ‘how do we make health public?’. We have been clear that public health ethics operates within the political sphere, and it can be argued that understandings of politics —in how it works and how it might change—come primarily from social and political sciences rather than moral and political theory.23 However, works in an area that is some- times labeled ‘public ethics’24 explore the contributions of philosophy to practice and policy, taking the sorts of considerations found in the previous section and allowing them to inform political reality. In particular, we find that the philosopher’s question provides answers that can explain the coherence (or otherwise) of the ideas that underpin practice (provide conceptual and analytical clarity) and can rationalize the ethical reasons that motivate our political goals and side constraints on policy measures (provide normative reasons).25

For ethical public health, the ‘how’ question links philosophical discussions with understandings from political and social sciences, and with real-world experience. Practitioners, leaders, advocates and policy makers seek to understand how different ‘levers’ may be pulled in different settings in order to effect change.26 This means recognizing that different sorts of reasons and strategies are appropriate in different settings.27 Legal, political and social modes of advocacy will all be important, as will be understanding the strategies of actors whose interests are served by health-harming agendas (e.g. the tobacco industry).28

The ‘Tobacco Atlas’ is an excellent example of the range of methods of lobbying and advocacy that might be used in practical efforts to make health public.29 This important tool for health activism has been developed to advance the ‘endgame’ on smoking. It rests on a philosophically robust agenda in the senses outlined above: our understanding of the harms of tobacco derive from population-level studies; and our principled arguments about why these harms are a shared concern relate to the importance of health as a value, general social concerns about safeguarding and promoting health, and specific arguments about the institutional power dynamics, brute economic clout and systematic social inequalities that are compounded in the context of tobacco-related harm. We can argue that tobacco smoking should be a public matter. And to make it this, we have seen, and continue to see (e.g. given the Framework Convention on Tobacco Control) regulatory and other strategies explained in the ‘Tobacco Atlas’ that are making smoking—once treated as an intrinsically private choice—an increasingly public matter.

In practically seeking to make health public, ethical practice requires three important considerations to remain in view. First, the particular public health goal requires a clear ethical mandate. Second, the means used to reach that goal needs to be justified; we cannot just defend a policy or intervention because its outcomes are well-intended. And finally, we must not lose sight of the fact that our public health eth- ics must ultimately sit within a wholesale public and social ethics. In the end, the most compelling arguments to improve health will not be true simply because they make sense from a ‘public health perspective’; they will be compel- ling because they make sense from an overall social and political perspective, all things considered.

Conclusion: combining the academic and the activist

In this paper, we have emphasized our shared perspectives on public health and ethics, while endeavoring to explain what we consider to be the two most fundamental points of inquiry for anyone interested in ethics and public health. Formally, the academic’s and activist’s respective questions can be separated. However, we hope it is clear how each also feeds into the other, and how both are needed. Public health ethics must speak to practitioners, researchers, policy makers and leaders in public health. If we cannot articulate at the level of principle what makes health public, and in practice set strategies that will be effective in making health-related phenomena a shared concern, ethical agendas to protect and promote the public’s health will not be achieved.

Adpated Summary of a Public Health Ethics Framework Kass (2001) An Ethics Framework for Public Health

This short document presents an adapted summary of the framework proposed by Nancy Kass in 2001. We originally produced this summary for use during a webinar offered in October 2015.1 We have adapted this and other summaries of frameworks and republished them together so that they might be used in combination with the very brief public health ethics cases that we have produced to date. They are intended to give public health practitioners some material for practice in ethical deliberation.

Nancy Kass set out to produce a framework “designed to help public health professionals consider the ethics implications of proposed interventions, policy proposals, research initiatives, and programs” (2001, p. 1777). This document presents the six main questions around which the framework is organized and secondary questions to inform deliberation. It concludes by referring to a selection of resources for further reading.

The framework

Please discuss and respond to the six main questions as well as the secondary questions.

WHAT ARE THE PUBLIC HEALTH GOALS OF THE PROPOSED PROGRAM?

This calls for identifying the ultimate health goal(s), i.e., the reduction of morbidity and mortality, not just intermediate or process goals.

HOW EFFECTIVE IS THE PROGRAM IN ACHIEVING ITS STATED GOALS?

What are the supposed intermediate steps towards meeting the goals?

What evidence supports the claim that each of those intermediate steps achieves its goal? Explain the logic model.

“The greater the burdens posed by a program—for example, in terms of cost, constraints on liberty, or targeting particular, already vulnerable segments of the population—the stronger the evidence must be to demonstrate that the program will achieve its goals” (Kass, 2001, p. 1779).

WHAT ARE THE KNOWN OR POTENTIAL BURDENS OF THE PROGRAM?

What are the risks:

• To privacy or confidentiality? • To autonomy and liberty?
• To justice?
• To the health of individuals?

CAN BURDENS BE MINIMIZED? ARE THERE ALTERNATIVE APPROACHES?

“If 2 options exist to address a public health problem, we are required, ethically, to choose the approach that poses fewer risks to other moral claims, such as liberty, privacy, opportunity, and justice, assuming benefits are not significantly reduced” (Kass, 2001, p. 1780).

IS THE PROGRAM IMPLEMENTED FAIRLY?

Is the distribution of benefits and burdens equitable?

Does one group receive the benefits and another the burdens?

Will the program increase or decrease inequalities? Should the program be universal?
Should certain populations or groups be targeted?

Is there a risk of creating or perpetuating stereotypes or of stigmatizing some groups?

“That programs be implemented fairly is even more important if restrictive measures are proposed” (Kass, 2001, p. 1780).

HOW CAN THE BENEFITS AND BURDENS OF A PROGRAM BE FAIRLY BALANCED?

Have you planned for a democratic process or a form of procedural justice to determine if the balance between benefits and burdens is equitable?

“[T]he greater the burden imposed by a program, the greater must be the expected public health benefit”

The more that “burdens are imposed on one group to protect the health of another… the greater must be the expected benefit” (Kass, 2001, p. 1781).

Week 2 ethical framework

What makes health public?

The philosopher’s/academic’s Q

Meaning & scope of “health”

Meaning of term “public”

Reasoning

Personal (protecting self)

Interpersonal (protecting others)

Political (state power)

How do we make health public?

The activist’s/advocate’s Q

3 important considerations for ethical practice:

#1: Public health goal requires clear ethical mandate

#2: Means used to reach goal needs to be justified

NOT just well-intended outcomes

#3: Public health ethics must sit within public & social ethics

Public Health Ethics Framework (Kass 2001)

6-step framework:

#1: What are the public health goals of the proposed program?

#2: How effective is the program in achieving its stated goals?

#3: What are the known or potential burdens of the program?

#4: Can burdens be minimized? Are there alternative approaches?

#5: Is the program implemented fairly?

#6: How can the benefits and burdens of a program be fairly balanced?

Q: Do 6 steps link to 4 general ethical concepts?

Autonomy, Beneficence, Nonmaleficence, Justice

Types of Analysis

Policy (HSAP)

Ex. Policy brief

Program (CHE)

Ex. Program evaluation

Legal

Ex. Case memo

For this course, Ethical:

Roundtable (RT) Summary

RT Summary Template Forms:

Posted in Course Syllabus & Other Resources module

Week 3

https://www.cbsnews.com/video/the-hippocratic-oath/

https://www.pbs.org/wgbh/nova/doctors/oath.html

https://www.ama-assn.org/about/publications-newsletters/ama-principles-medical-ethics

https://www.hopkinsmedicine.org/henriettalacks/index.html

The History of Medical Ethics

In the past 60 years, modern medical ethics has reshaped medical practice in ways that many doctors may not even realize, and these changes have generally been for the better.

In the 1930s, medicine was a paternalistic profession. Doctors gave advice, and patients were expected to follow along. Patients did not have many rights. They could even be enrolled in experiments without their knowledge, which was widely condoned.

After World War II, the world learned the horrors of German doctors working in the concentration camps and conducting deadly scientific experiments in which the subjects had no say. Efforts to right these wrongs, enshrined in the Nuremberg Code, signaled the beginning of modern medical ethics.

It took several decades, however, for these changes to work their way through the system and become accepted norms. In 1972, word of the Tuskegee syphilis experiment in Alabama appeared in the media. Since 1946, researchers in an observational study of the disease at the US Public Health Service had been enrolling African Americans infected with syphilis under the guise of offering them free healthcare.

Even though penicillin became the standard treatment for syphilis in 1947, it was withheld from the Tuskegee subjects. They were lied to and given placebos. As a result, many of them died of syphilis, and many of their wives and children became infected.

The Rise of Patient Autonomy and Transparency

News of Tuskegee and other exploitative experiments in the United States prompted researchers in the 1980s to put strict limits on how research subjects are treated and heightened peer-based oversight. When skepticism of authority emerged in the 1960s and 1970s, medicine put a new emphasis on patients’ right to know what was being done to them and have a say in the clinical process. Medical values changed. Protecting patients from unwelcome news, such as a cancer diagnosis, gave way to forthright honesty toward patients, unless they explicitly stated that they didn’t want to know.

This new ethical standard, which still prevails today, states that physicians do not automatically know what is best for the patient—and, in fact, patients are normally the best people to know what is in their best interest.

This new ethical standard, which still prevails today, states that physicians do not automatically know what is best for the patient—and, in fact, patients are normally the best people to know what is in their best interest.

The Concept of Futility Emerges

Also in the 1960s and 1970s, hospitals began to routinely use ventilators, feeding tubes, and other technology to keep patients alive. All this life support, however, rarely helped dying patients to recover and eventually had to be removed.

It was up to hospital-based doctors, often in intensive care units, to decide when to remove life support. This put them in the uncomfortable position of deciding who should live and who should die. To deal with these sobering choices, the concept of futility emerged as a way to describe medical interventions that have little prospect of altering a patient’s ultimate clinical outcome.

Deciding what is futile care and when life support should be removed can pit doctors against families, and family members against each other. These battles have been played out in several high-profile legal cases involving patients in permanent comas, memorably Karen Ann Quinlan (1976), Nancy Cruzan (1990), and Terri Schiavo (2005).

Dialysis and Allocation of Resources

Dialysis, another new technology of the 1960s, could save many lives, but it was a scarce and expensive resource at the time. Doctors had the unwelcome task of selecting which patients would get dialysis. Bioethicists, a new profession at the time, arose to help make these determinations.

The bioethicists came up with new ethical principles that could be used to determine allocation. “Beneficence” described the provider’s obligation to support the well-being of the patient. Then, as more people received dialysis, providers had another ethical challenge: that dialysis could harm quality of life. The harms could outweigh the benefit in some dialysis patients. That is, providers had to balance beneficence with an obligation of “nonmaleficence”—to avoid harm.

Medicare began covering dialysis for patients of all ages in 1972, for- profit companies rose to meet the demand, and the need to allocate dialysis units slowly faded away. Allocation of scarce resources ceased to be an issue for dialysis, but it remains a pressing ethical issue in other areas, such as organs for transplantation and vaccinations. And most assuredly, it will become an issue in more areas.

Modern Ethics in Current Use

Today, the principles and values of medical ethics have achieved a great deal of acceptance within the medical community. The field can be roughly divided into four areas: hospital ethics, ethics at private practices, clinical research ethics, and ethics in public health.

Hospital Ethics

Much of modern ethics concerns itself with inpatient matters. Many of the most pressing ethical issues, such as withdrawal of treatment for dying patients and informed consent for procedures, primarily take place in the hospital.

This is why almost every large hospital today has an ethics committee, but hospital ethics committees are a relatively new phenomenon.

One of the first hospital ethics committees was mandated in a decision by the New Jersey Supreme Court on the right-to-die case of Karen Ann Quinlan in 1976. In a situation that made headlines across the country, the hospital had a very important ethics decision to make but did not have the expertise to do so. The hospital needed to have a panel of physicians and others who would be dedicated to such questions.

At first, the number of hospital ethics committees was quite small, but it took off in the next decade. Growth was accelerated by a new requirement by the Joint Commission, the hospital accreditor, that all hospitals had to have some mechanism for ethics review. In 1983, only 1% of US hospitals had an ethics committee, but by 2001 more than 90% had one. [1]

Hospital ethics committees bring together professionals from a variety of disciplines, including doctors, nurses, chaplains, social workers, ethicists, and lawyers. Their work is mainly advisory. Functions include developing hospital policies on key issues, such as end-of-life care; educating staff on ethical issues; retrospective review of cases; and overseeing clinical ethical consults in the hospital.

Ethics committees often defer to ethical consultants, usually known as “medical ethicists,” to help doctors resolve problems with patients or their families, as well as many other ethical issues in the hospital. Medical ethicists often are healthcare providers with training in bioethics. Their work requires one-on-one communications, tactful negotiation, and a firm grasp of the issues.

A recent survey found that 100% of hospitals with more than 400 beds had ethical consultants, and 81% of the smaller hospitals had them. [1]

Ethics committees often defer to ethical consultants, usually known as ‘medical ethicists,’ to help doctors resolve problems with patients or their families, as well as many other ethical issues in the hospital.

In the hospital, doctors, other clinicians, patients, and their families have the option of choosing whether or not they want to use ethicists. Physicians who consult with ethicists often appreciate having access to a second opinion when making a difficult ethical decision.

Doctors in general are split on the use of ethicists. According to a 2006 survey of doctors at a Florida hospital, 72.2% of those who did not use ethicists thought it was their responsibility to resolve issues with patient or families on their own, and 90.8% of those who used ethicists believed in shared decision-making and the need to consider alternate points of view. [2]

Ethics in Private Practices

Although most hospitals provide medical ethicists for doctors to consult, relatively few practices have them on staff. Physicians in small practices must fend for themselves in terms of ethics, even though they too have many ethical issues.

Whereas physicians in hospitals face high-profile issues, such as end-of- life decisions or the use of novel experimental treatments, private practices face such issues as cultural sensitivity, professional responsibility, distribution of resources, and time constraints on appointments.

Physicians in small practices have similar challenges to those in large organizations when it comes to finding the time for ethical decision- making. Whereas physicians in large organizations often have to see a certain number of patients each day, physicians in small practices may feel pressure to make more money. Both groups have the practical problem of having to carve out the time needed to deal with the ethical dimension of their work.

Clinical Research Ethics

Obtaining informed consent from research participants is the single greatest ethical issue in medical research. Investigators are asking participants to take a risk, primarily to benefit someone else. Potential participants sign up often because they think they’re going to get a new cure—even though they will often see little or no benefit, at least in early trials.

Clinical research is a closely monitored activity. Under federal law, the organization doing the research is required to set up an institutional review board (IRB), a group of peers who are not supposed to benefit financially if the study is successful.

The IRB sets criteria for the study’s deliberations and decisions, such as weighing risks and benefits of a particular experiment, making sure potential participants know their options, and overseeing the informed consent process.

Obtaining informed consent from research subjects is the single greatest ethical issue in medical research. Investigators are asking participants to take a risk, primarily to benefit someone else.

/

Owing in large part to IRBs, research institutions take their ethical obligations very seriously. They sometimes ask for help from professional ethicists to make sure their informed consent processes are ethically sound.

Informed consent documents must thoroughly describe the risks and benefits, but they can’t be so long that research participants can’t easily read through them, and they can’t use terms that the participants don’t understand. Increasingly, visual and electronic aids are used to supplement written consent and improve comprehension by research participants.

Ethics in Public Health

A great deal of medical ethics has to do with public health. This is territory riven with ethical pitfalls, involving such issues as preventing disease, prolonging life, and promoting health through organized efforts.

Public health authorities deal with such problems as flu epidemics, drug abuse, providing mental health services, monitoring children for health issues at birth, and the cost of healthcare. All of these areas have to do with resource allocation, which is a seminal issue in modern medical ethics.

Public health issues traditionally exist at the government level, but they are increasingly arising at the practice level. A few examples in practices involve countering the opioid epidemic, counseling on safe use of guns, urging the use of bike helmets, and making sure patients are vaccinated.

Current Ethical Issues: Some Hot-Button Topics

Vaccination

In the case of vaccinations, some parents refuse the measles vaccine for their children, citing baseless claims that it causes autism.

At first blush, these parents appear to be merely exercising their individual rights, a sacred issue for Americans, but the overriding concern is a societal problem. Unvaccinated children can spread the disease to others. Requiring vaccinations thus becomes a matter of “protecting the herd.”

Politicization of Firearms

In 2011, Florida enacted a law that barred doctors from discussing the dangers of gun ownership with their patients. Doctors who disobeyed the law could be censured, fined, or lose their licenses.

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Besides Florida, 14 other states considered similar bills. But none of them were passed, and an appeals court overturned the Florida law in 2017, ruling that it violated doctors’ right to free speech.

Now that doctors are free to talk about gun safety, how should they

handle this issue? Studies show they will be more effective if they

refrain from a disapproving tone and instead focus on the risks of

suicide prevention, keeping guns in homes, and other storage practices. [3]

Cost and Utilization of Healthcare Resources

Cost issues are another topic that is increasingly turning up in physician practices. With the emergence of accountable care organizations and other modes of value-based payments, physicians are under greater pressure to keep costs in check without harming quality.

Some physicians are adopting the concept of stewardship as an ethical way to balance cost-savings with quality of care. Although patient advocacy comes first, doctors can also consider whether it is worthwhile to provide services that are only marginally beneficial to their patients.

Stewardship also is a growing need for patients. As patients increasingly pay for services out-of-pocket, the high costs of marginally beneficial services can threaten their livelihood.

Physicians can get help in deciding when to reject marginal services by consulting Choosing Wisely, a list of overutilized services selected mainly by medical associations. Doctors and their patients can discuss the list and hold conversations about the costs and benefits of medical services.

Discussions of Political Views

With physicians under pressure to take a stand on various issues, how much should they voice their views on these issues to their patients?

Physicians have a great deal of influence over patients’ views on healthcare issues, such as advocating the use of health savings accounts, defending the Affordable Care Act, or calling for a single-payer healthcare system.

Doctors may even bring up issues that directly affect the medical profession rather than patients; such issues include tort reform, opposition to maintenance of certification, or the need to reduce physician burnout.

Physicians do have a right to raise these issues. Political action is the only way they can deal with issues such as inadequate healthcare. Be prepared to lose some patients owing to your views.

However, physicians need to exercise discretion about their causes. If the patient does not appear to be interested in the pitch or actually disagrees with it, the doctor should drop it. Maintaining a good patient/doctor relationship is more important than scoring political points.

Week 4

https://www.ama-assn.org/press-center/press-releases/new-ama-policy-recognizes-racism-public-health-threat

https://www.npr.org/2021/05/27/1000780657/black-women-try-to-avert-medical-racism-by-searching-for-black-doctors

https://www.nejm.org/race-and-medicine

https://www.cdc.gov/healthequity/racism-disparities/index.html

Week 4 Ethics in Health Care

Medical Ethics – 1
Hippocratic Oath

Oath’s principles include:

Treat patients to best of ability

Preserve patient privacy

Oath’s principles don’t explicitly include

“First, do no harm”

Concern: Oath inadequate for issues in bioethics?

Abortion

Euthanasia/physician-assisted suicide

Life support

Medical Ethics – 2
World Medical Assn. Declaration of Geneva

Declaration is physician pledge

1948: first adopted

2017: revised version adopted

Includes

Patient-physician relationship

Medical confidentiality

Medical Ethics – 3
American Medical Assn. (AMA) Code of Medical Ethics

9 principles

1847: first adopted

NOT laws – standards of conduct

Legal standard: Medical malpractice

Informed Consent

Right of patients to make informed decisions about their own care

Includes right to refuse treatment, regardless of its nature or urgency

Ex. Discharge against medical advice

Q: 4 general ethical principles apply?

Research Ethics

1947: Nuremberg Code

“50 Years Later: The Significance of the Nuremberg Code” (1997) https://www.nejm.org/doi/full/10.1056/nejm199711133372006

1979: Belmont Report

3 basic ethical principles

Respect for persons, beneficence, & justice

Non-maleficence NOT included

2009: Protection of Human Subjects

2020: “Ethical compass” (next slide)

Q: Parallels with Dr. Kass’ 6-step ethical framework?

https://www.nuffieldbioethics.org/publications/research-in-global-health-emergencies

Ethics in
Health Care

Medical Ethics – 1
Hippocratic Oath

Oath’s principles include:

Treat patients to best of ability

Preserve patient privacy

Oath’s principles don’t explicitly include

“First, do no harm”

Concern: Oath inadequate for issues in bioethics?

Abortion

Euthanasia/physician-assisted suicide

Life support

https://www.pbs.org/wgbh/nova/article/hippocratic-oath-today/

https://www.nlm.nih.gov/hmd/greek/greek_oath.html

Medical Ethics – 2
World Medical Assn. Declaration of Geneva

Declaration is physician pledge

1948: first adopted

2017: revised version adopted

Includes

Patient-physician relationship

Medical confidentiality

https://jamanetwork.com/journals/jama/fullarticle/2658261

Medical Ethics – 3
American Medical Assn. (AMA) Code of Medical Ethics

9 principles

1847: first adopted

NOT laws – standards of conduct

Legal standard: Medical malpractice

https://www.ama-assn.org/delivering-care/ethics/code-medical-ethics-overview

Informed Consent

Right of patients to make informed decisions about their own care

Includes right to refuse treatment, regardless of its nature or urgency

Ex. Discharge against medical advice

Q: 4 general ethical principles apply?

Week 5

https://www.healthaffairs.org/do/10.1377/hblog20180209.367466/full/

https://www.commonwealthfund.org/publications/podcast/2021/may/sick-in-the-shadows-why-immigrants-should-have-health-care

Congress Should Insulate the Indian Health Service from the Next Government Shutdown

https://journalofethics.ama-assn.org/sites/journalofethics.ama-assn.org/files/2018-06/msoc1-0802.pdf

Demographics, Insurance Coverage, and Access to Care Among Transgender Adults

Right to Health Care

Right to Health Care in U.S.

Basic principle in U.S. health law:

In general, individuals with no legal right to health care services – or to public health insurance

Affordable Care Act (ACA) only ↑ access to care; ACA didn’t create right to care

And, health care providers with no general legal duty to provide care

“No duty” or “no duty to treat” principle

Uniqueness of U.S.

No guarantee of health care as a fundamental right

No mention of “health” in U.S. Constitution

No system insuring population against health care costs

Instead, “patchwork” coverage of specific populations

Medicare, Medicaid, CHIP, VA/Tricare, IHS

Global Right to Health Care

Worldwide, ~2/3 of national constitutions specifically address health or health care

Almost all do so in universal terms

Not limited to certain populations

International examples:

WHO Constitution (1946) “fundamental right”

UN’s Universal Declaration of Human Rights (1948) Article 25, “Right to an adequate standard of living”

3 Types of Rights in
U.S. Health Care

Right #1: Legal rights related to receiving services explicitly provided under health care, health financing, or health insurance laws

EMTALA, Medicaid program, ACA

Right #2: Rights concerning freedom of choice & freedom from government interference when making health care decisions (autonomy)

Informed consent, right to privacy

Right #3: Right to be free from unlawful (wrongful) discrimination when accesaccessing or receiving health care Race, ethnicity, disability

Right #1: Emergency Medical Treatment and Active Labor Act (EMTALA) (1986)

Enacted as anti-“patient dumping” law

Only truly universal legal right to healthcare:

Right to access emergency hospital services

Created legal duty of care for hospitals:

Appropriate screening examination, &

Stabilization of condition or transfer of patient to another hospital

“Eliminating Gaps in Medicaid Coverage During Reentry After Incarceration” (March 2020)

Right #2: Informed Consent

One of the most important health care rights:

Right of patients to make informed decisions about their own care

Includes right to refuse treatment

Ex. Discharge against medical advice

Right #3: Anti-Discrimination in Health Care

Anti-discrimination laws include:

Civil Rights Act of 1964 (Title VI)

“race, color, or national origin”

Americans with Disabilities Act of 1990 (Title III)

“places of public accommodation”

Affordable Care Act (Section 1557)

race, color, national origin, age, disability, sex/gender

6/12/20: New Final Rule rewrote regulation, removing protections against discrimination based on sex stereotyping & gender identity

6/15/20 Supreme Court decision on employment discrimination against LGBT people lawsuits on Section 1557

5/10/21: HHS announces Section 1557 will cover sexual orientation & gender identity

https://www.hhs.gov/about/news/2021/05/10/hhs-announces-prohibition-sex-discrimination-includes-discrimination-basis-sexual-orientation-gender-identity.html

“Demographics, Insurance Coverage, and Access to Care Among Transgender Adults” (10/21/2

Immigrants & Health Care

Documented (ex. “green card” holders)

Yes, but with

Limited access to employer-sponsored insurance

Eligibility restrictions on Medicaid, CHIP, & ACA Marketplace

Undocumented

No, except for

EMTALA

Access to FQHCs/CHCs

Emergency Medicaid, ex. pregnant women

“The Moral Determinants of Health” (JAMA 6/12/20)

Final Thought

“Every nation’s health care system reflects that nation’s basic moral values.”

“Once a nation decides that it has a moral obligation to provide health care for everybody, then it can build a system to meet that obligation.”

Health care economist Uwe Reinhardt

Week 6

https://www.apha.org/-/media/files/pdf/membergroups/ethics/ethics_brochure.ashx

https://www.youtube.com/watch?v=7zK2yzvi5rs

https://www.cdc.gov/tuskegee/timeline.htm

https://www.tuskegee.edu/about-us/centers-of-excellence/bioethics-center/about-the-usphs-syphilis-study

my discussion post

Informed consent is one of the 12 principles of the ethical practice of public health that was MOST violated by the Tuskegee study. The patients (the hundreds of rural Black men recruited in 1932) were given and supplied with free meals and checkups, but the researchers did not explain that they would be human subjects in a study designed to withhold medical treatment. This means that they were not fully informed on the whole research’s procedures and requirements.  Patients and participants who need to participate in research must be fully informed and educated about the intervention’s risks, procedures, benefits, and alternatives. The patients and the participants need to make voluntary decisions based on the procedures and guidelines that will be taken on the intervention.

          Moreover, informed consent can be both an ethical practice and a legal obligation. This is because it involves and firmly is based on the patient’s life and health. The health care providers need to make clear the decision-making process and avoid making the patient feel forced to the patients and the participants involved in the research. The health care provider also needs to work hand in hand with the patients to make recommendations and reasoning based on the participant’s decisions. Patients need to understand and acknowledge every process that will be taken in the research.

Week 7

https://www.apha.org/-/media/files/pdf/membergroups/ethics/code_of_ethics.ashx

Home

Ethics in Public Health:
Past Principles, New Code,
& Legal Concepts

12 Principles of the Ethical Practice of Public Health (2002)
Adopted by the APHA

#1: Public health should address principally the fundamental causes of disease & requirements for health, aiming to prevent adverse health outcomes

#2: Public health should achieve community health in a way that respects the rights of individuals in the community

#3: Public health policies, programs, & priorities should be developed & evaluated through processes that ensure an opportunity for input from community members

#4: Public health should advocate & work for the empowerment of disenfranchised community members, aiming to ensure that the basic resources & conditions necessary for health are accessible to all

#5: Public health should seek the information needed to implement effective policies & programs that protect & promote health

#6: Public health institutions should provide communities with the information they have that is needed for decisions on policies & programs & should obtain the community’s consent for their implementation

#7: Public health institutions should act in a timely manner on the information they have within the resources & the mandate given to them by the public

#8: Public health programs & policies should incorporate a variety of approaches that anticipate & respect diverse values, beliefs, & cultures in a community

#9: Public health policies & programs should be implemented in a manner that most enhances the physical & social environment

#10: Public health institutions should protect the confidentiality of information that can bring harm to an individual or community if made public. Exceptions must be justified on the basis of the high likelihood of significant harm to the individual or others

#11: Public health institutions should ensure the professional competence of their employees

#12: Public health institutions & their employees should engage in collaborations & affiliations in ways that build the public’s trust & the institution’s effectiveness

Public Health Code of Ethics (APHA 2019)

6 Core Ethical Values

Professionalism & Trust

Health & Safety

Health Justice & Equity

Interdependence & Solidarity

Human Rights & Civil Liberties

Inclusivity & Engagement

“Public Health Code of Ethics: Deliberative Decision-Making & Reflective Practice”
(AJPH April 2020)

“Did Infamous Tuskegee Study Cause Lasting Mistrust of Doctors Among Blacks?”

NYT 6/17/16

“There is no question that the Tuskegee study is one of the most horrific examples of unethical research in recent history … the utter lapse in ethics of the Tuskegee experiment …”

Tension in
Public Health System

Balancing approach

Legal trade-offs:

Individual (private) rights & freedoms

versus

Public (population) health responsibilities & duties

Important Concepts in
Public Health Law

#1: Federalism

#2: Constitutional Limits

#3: Police Powers

#4: Due Process

Important Concept #1:
Federalism

U.S. Constitution, 10th Amendment:

Federal government: limited powers

State government: all powers not expressly left only to federal gov’t

Important Concept #2:
Constitutional Limits

U.S. Constitution:

Empowers gov’t to act in public health

But doesn’t require gov’t to do so

Important Concept #3:
Police Powers

U.S. Constitution, 10th Amendment:

States with primary power to regulate public health, safety, & welfare

So state/local gov’t – including public health – with authority to regulate

Individuals & private businesses

But police powers limited by constitutional rights

Important Concept #4:
Due Process

U.S. Constitution right

Federal: 5th Amendment

Due Process Clause

State & Local: 14th Amendment

Protects individuals’ liberty & property rights vs. unfair gov’t action

Due Process &
Public Health

Individual’s liberty rights

Action by public health official/dept.:

Interfering with right to move about freely, or

Invading body in some way

Ex. Isolation & quarantine orders

Individual’s property rights

Ex. Inspections & licenses

Week 9

https://www.nbcnews.com/tech/social-media/vaccine-mandates-spread-protests-follow-spurred-nurses-rcna1654

my discussion post

To the editor,

I am writing to respond on an article, “Why Are So Many of My Fellow Health Workers Unvaccinated?”published by New York Times. It is troubling to note that despite all the warnings, there seems to be a huge number of health workers who deliberately choose not to vaccinate themselves for fear that vaccines may adversely affect their health. For quite a number of these health workers, they believe that the vaccines are unsafe and ineffective.

Conversely, some argue that since majority have already been exposed to the virus, it is not as important to be vaccinated against a virus they already have. Much as this makes some sense, the risk of exposure to the patients they handle each day, health workers have become the greatest spreaders of the virus.

I call upon the Federal Government, therefore, not to allow any health workers to continue treating people without being vaccinated. I also urge the members of the public not to accept vaccine shots from unvaccinated health workers.

 

Flu Vax Recommendations for
Health Care Workers (HCWs)

CDC, ACIP, & others recommend annual flu vax for all HCWs

HCWs include

Physicians

Nurses

Pharmacists

Other personnel

https://www.cdc.gov/flu/professionals/healthcareworkers.htm

“Flu Vax Coverage Among Health Care Personnel (HCP) – U.S., 2016-17 Flu Season” (MMWR 9/29/17)

Overall, ~79%

↑ from 64% in 2010-11 season

Similar to coverage in last 3 seasons

Higher flu vax coverage

Employer vax requirements

Free vax at workplace

Lower flu vax coverage

LTC settings

Non-hospital settings

Assistants, aides, non-clinical personnel

https://www.cdc.gov/mmwr/volumes/66/wr/mm6638a1.htm

Flu Vax Coverage Among HCP & Employer Policies, 2016-2017

Work setting w/required vax: ~98%

Work setting w/o required vax, but free onsite vax offered

> 1 day: ~83%

1 day only: ~76%

Work setting w/o free onsite vax, but active vax promotion: ~76%

Work setting w/no requirements or policies: ~42%

https://www.cdc.gov/mmwr/volumes/66/wr/mm6638a1.htm

Hospital Health Care Worker Flu Vax Laws (as of Oct. 2017)

18 states: Flu vax requirements for workers

Not NJ

11 states: Hospitals required to offer flu vax

10 states: Flu vax assessment requirements for workers

Ex. NY hospitals must document status

8 states: Hospitals required to ensure workers w/flu vax

3 states: Workers required to wear surgical masks during flu season, if exempted from/declined vax

https://www.cdc.gov/phlp/docs/menu-shfluvacclaws.pdf

week 10

https://www.medscape.com/viewarticle/951673

https://www.ncsl.org/research/health/school-immunization-exemption-state-laws.aspx

my discussion

Inoculant mandates with medical exemptions but without religious exemptions are ethical. This is because permitting religious exemptions to inoculant mandates is difficult to manage and is habitually played. In the United States, religious freedom is a key value implying that policing people’s religion by the government will only cause multiple thorny issues. Another disturbing fact about religious exemptions is misused to avoid inoculation by the same individuals who avidly advance anti-inoculation misinformation (Reiss, 2021). Compare these shoddy reasons to the serious grounds of seeking a medical exemptions-feeble immune system due to another medical condition or a serious allergy connected to the inoculant. These individuals do not hesitate to coach others in their ways, and it becomes easier, without policing, for people deceived by anti-inoculant misinformation to use the religious exemption.  

Unlike medical exemptions, assessing the sincerity of an individual seeking religious exemption is tricky as individuals often lie and are mostly focused on playing the system (Reiss, 2021). Religious exemptions will only benefit the better lies or individuals who have entree to experts who can coach them on what to say. This is a bad policy as the individuals who successfully get these religious exemptions pose a considerable threat to the well-being of the wider community, which often results in fatal consequences. 

The above became evident in the measles outbreak in Brooklyn, New York, between March to June 2013, where 58 cases were reported in the Orthodox Jewish community (Vox, 2015). This was also evident when in 2014, the massive uptick in measles cases involved the Ohio Amish, where upwards of three hundred and fifty individuals were infected with measles by one man who had traveled to the Philippines and became infected by a local strain. Due to these stated reasons, inoculant mandates with medical exemptions but with no religious exemption be ethical.

Vaccines & Public Health
Since 1900: Average lifespan in U.S. ↑ by 30 years
25 years credited to public health actions
CDC “Ten Great Public Health Achievements – U.S.,
1900-1999”
Vaccination
• https://www.cdc.gov/mmwr/preview/mmwrhtml/00056796.htm
CDC “Ten Great Public Health Achievements – U.S.,
2001-2010”
Vaccine-preventable diseases
• https://www.cdc.gov/mmwr/preview/mmwrhtml/mm6019a5.htm

Key U.S. Supreme Court Case
on Vaccines & Police Powers:
JACOBSON v. MASSACHUSETTS (1905)
State Law: Local health boards with
power to require vaccination “when
necessary for public health or safety”
Board of Health Order: All adults in city
required to vaccinate bc of smallpox
outbreak
Mr. Jacobson: Refused fine
State court: Upheld fine, so Mr.
Jacobson appealed

Key U.S. Supreme Court Case
on Vaccines & Police Powers:
JACOBSON v. MASSACHUSETTS (1905)
Question: Is the state law inconsistent
with an individual’s liberty rights?
Answer: No, vaccine order within
state’s police powers
Liberty right not absolute right
Importance of public safety >
restriction on individual freedom

2 More U.S. Supreme Court
Cases on Vaccines
ZUCHT v. KING (1922)
School vaccination requirement &
individual’s due process rights
PRINCE v. MASSACHUSETTS
(1944)
School vaccination requirement &
parents’ religious claims

Anti-Vaxx Movement
1998 Lancet study linked MMR vaccine
& autism
Falsified data, “fraudulent” 2010
retraction
Studies: No evidence of association

“Policy Views & Negative
Beliefs About Vaccines in the
US, 2019” (AJPH Oct. 2020) Objectives: To determine whether holding vaccine
misconceptions – in the form of negative beliefs about
vaccines – correlates with opposing governmental
action at all levels designed to increase vaccination
Ex. Removing personal belief & religious vaccine
exemptions
Conclusions:
Negative beliefs about vaccines in the general
population may thwart the passage or implementation of
policies designed to increase vaccination
Implementing strategies that reduce these negative
beliefs should be a priority of educators and public
health officials

“Quantifying the effect of Wakefield et al.
(1998) on skepticism about MMR vaccine
safety in the U.S.” (PLOS ONE 8/19/21)
How a fraudulent 1998 study
empowered modern anti-vaxxers:
Increased complaints to the national
Vaccine Adverse Events Reporting
System (VAERS) &
Overall, more negative press coverage
by major TV outlets & newspapers
Finding: Misleading research seemed to
lead to stronger anti-vaxx attitudes https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0256395

Measles Outbreaks in U.S.
Jan. 1 – Dec. 31, 2019
Greatest # of cases reported since
1992
1282 cases in 31 states confirmed
• NJ: 19 cases
5 areas with ongoing outbreaks
73% of cases linked to outbreaks in
NYC & NYS (Rockland County)

Timeline of Measles Outbreak
in Rockland County, NY
Fall 2018: 1st suspected case
By Spring 2019: 186 cases
March 27th: County Executive
Declares “State of Emergency”
Bars anyone under 18 & unvaccinated from
“public places”
Sept. 25th: Outbreak declared over
312 cases
April 2019 lawsuit: Parents’ request to stop order
granted
Definition of epidemic
% of population

Timeline of
Measles Outbreak in NYC
Fall 2018: 1st case
By Spring 2019: 390 cases
323 (83%) in 4 zip codes in Brooklyn
April 9th: NYC Health Commissioner
Finds “public health threat”
Orders vaccination of people living/working/going to
school in 4 zip codes
Sept. 3rd: Outbreak declared over
654 cases (72% in 4 zip codes in Brooklyn)
April 2019 lawsuit: Parents’ case dismissed
Emergent measles epidemic = public health emergency
Reasonable reaction

Vaccine Exemptions
Medical
All states & Washington, DC
Philosophical/Personal Belief
15 states
Religious
All states, except 6 (including CA)
6/13/19: NY
• Gov. Cuomo signed bill – effective immediately

hostilityJune 2019:
Vaccine Law in NYS
Bill passed in 1 day
• Gov. Cuomo: “public health emergency”
Eliminates exemption for parent/guardian
with “genuine & sincere religious beliefs” vs.
immunization
Dec. 2019 lawsuit: Families’ case dismissed
• Public health objective
• Not religious

Jan. 2021: Request for Emergency
Injunction Denied in NYS
Jan. 2021: U.S. Supreme Court Associate
Justice Sonia Sotomayor denied parents’
request
Parents: School immunization requirement
violates 14th Amendment
Lower courts: “Public health concerns”
Maintaining high vax rates
Avoiding outbreaks
https://www.edweek.org/policy-politics/sotomayor-declines-parents-
request-for-relief-from-school-vaccination-requirements/2021/01

Week 11

Feud erupted between CDC, Puerto Rico over reporting of Zika cases, document shows

my discussion

The one sentence on the core ethical value of health Justice and Equity that best describes the situation in Puerto Rico is that public health physicians and entities have a moral commitment to use their influence, experience, skills, and knowledge to advance equitable distribution of opportunities, burdens, and benefits for health notwithstanding a group’s or individual’s relative position in social hierarchies (APHA, 2019). This is evident in that despite Puerto Rico’s health care system being destroyed by Hurricane Maria, the island’s physicians are striving effortlessly to provide essential medical services, particularly Zika virus testing for pregnant women.  Despite the government proclaiming that there aren’t new Zika virus cases in Puerto Rico, a team of doctors from the island teamed up with the CDC to commence a new testing scheme for pregnant women. The physicians purposed to continually test all the pregnant women in their clinics during every trimester. Also, the physicians provided their expertise to verify whether or not the government’s claim that the Zika virus pandemic had ended with Maria was true. They put mosquito traps all over San Juan neighborhoods to hypothesize that they would consider the Zika risk to be significant if they catch more than three Zika-carrying mosquito species per trap. They discovered the government’s claim to be false as in the traps, the numbers of captured mosquitoes were three times more than expected. 

Week 12

https://www.pbs.org/wgbh/nova/article/short-history-of-quarantine/

my discussion

In the face of the COVID-19 pandemic, the ethical principle of public health that best supports cordon sanitaire in Nj is “Public health should seek the information needed to implement effective policies and programs that protect and promote health”(APHA, 2002). Cordon sanitaire involves drawing a ring around a geographical area affected by the pandemic to stop the spread of the disease. However, the strategy, like quarantine, sheltering in place, and isolation, are ethically troubling strategies used to contain the pandemic (Francis & Battin, 2020). Cordon sanitaire is effective only if it is strictly enforced and no one moves across the boundaries with the disease.

​ However, the method restricts the movement of the people living within the protected area who would otherwise have protected themselves by moving to other places. This would have been a privilege that would help them escape from the disease. Also, cordon sanitaire prevents the spread of the essential items to the restricted areas or visiting family and friends. Additionally, it violates the human rights of interstate visiting and equal treatment (Gostin & Chertoff, 2021).  Public health should have considered the consequences of putting restrictions on the areas. Also, the restrictions should be supported by scientific evidence that the strategy promotes human health and follows WHO guidance. 

​In essence, the disadvantages of the strategy are more than the advantages. If people fail to receive foodstuff and other essential supplies, it may lead to anxiety and frustration. The people may suffer from mental issues such as depression, and the worst would be death due to lack of food. However, implementation of the strategy is only helpful to the people living outside the boundaries of the restricted areas since it leads to the slow spread of the disease (Gostin & Chertoff, 2021). The policy is concerned with protecting a greater population but sacrifices the health of the people living in the affected area.

Week 14

my discussion

One of the most significant ethical roles or values expressed by is the role of health and safety. The health of any individual is much essential; therefore, it must be seriously considered. In this case, it is easier to note that the doctor had a very significant concern about the health of these citizens, including their safety. Dr. Attisha Hanna played a good ethical role by addressing the harmfulness of the water consumed by the Flint people. This water was found to have been contaminated by the eroded lead metal, the lead metal in the water could destroy the intellect part of the Flint people. She was also behind the Flint people’s cry that involved the encampment procedure of the Flint people. It demonstrates how concerned and human the doctor was about the health of the Flint people and, most significantly, the children in the Flint city. Another aspect of the doctor’s action shows that she ensured an agreement that the waters contained an excessive amount of lead.

Week 15 what is harm reduction

https://www.opensocietyfoundations.org/explainers/what-harm-reduction

my discussion

Supporting harm reduction in New Jersey is ethical since it helps prevent those in harm’s way from being victims of their substance. Ensuring people do not face or experience specific harm is ethical, as it is a fight to lengthen victims’ lives and avoid early deaths from a preventable cause. Harm reduction in New Jersey is also ethical since it advocates for community safety. When harm has been reduced, the community or society will be safe, eliminating worry over unpredicted or unexpected damage. When one supports harm reduction in New Jersey, they help the victims from harming themselves and disturbing the community’s peace or society (Beers & Schulman, 2021). Finally, harm reduction is ethical as it helps reduce the harm that victims could have experienced. Harm reduction does not dwell solely on ultimately making victims seize from substance use but also on reducing consumption.

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