Hello, and thank you for joining us today to explore ethics and decision making in public health I’m Lisa Lee, the executive director of the Presidential Commission for the Study of Bioethical Issues I am an epidemiologist and public health ethicist I started my public health career at a couple of state health departments, then worked at the Centers for Disease Control and Prevention for 14 years where I focused on infectious disease epidemiology, the ethics of public health surveillance, and privacy and public health data use I am delighted to be here today to talk with you about ethics and decision making in public health What I talk about today are my views and do not necessarily represent the official position of the Presidential Commission for the Study of Bioethical Issues or the US Government We will begin by defining and describing public health ethics I’ll then outline a set of skills in ethics that are useful for all public health professionals Finally, we’ll review an approach to resolving typical public health ethics dilemmas You might be wondering why you need to know any of this Isn’t that what an ethics committee or an IRB is for? Or, you might be wondering if you have the necessary expertise to deal with ethics questions Your health department or organization might or might not have ethics expertise, but what we will be talking about today is information that all public health professionals must know– especially those of you who work on the front line, who work in public health programs You serve as the eyes and ears of your ethics committee, if your organization has one If it does not, your ability to identify and act on the ethical dimensions of your work requires at least a working knowledge of the basic skills you will need in order to address these types of questions Let’s start with the word “ethics.” What is the first thing you think about when you hear the word, “ethics”? Many people respond with words or phrases such as: Right and wrong IRB Trouble Others say: Doing what is right Making sure we’re making the right decision And some say, justice Today we are going to talk about “ethics” both as the basis for “what we ought to do” AND as a process for deciding on how to move forward when values conflict Let’s begin with a case For Part 1 of this case exercise, we’ll read the description and then you can pause the recording to jot down answers to the questions that follow This is a case study in the ethical collection and use of public health surveillance data In 2005, New York City Department of Health and Mental Hygiene planned to expand its chronic disease reporting system for diabetes The name-based public health surveillance registry would now require that, in addition to reporting results back to the ordering physician, reports from laboratories on A1C results that indicated poor glycemic control must be reported directly to the public health department registry regardless of patient consent The health department then would notify both individuals and their physicians when the patient’s diabetes was not controlled properly The health department would provide referrals to diabetes-related services that were available to patients in their community Is this collection and use of public health data ethically justified? Why or why not? How would you make your case to your colleagues? Pause the recording here and take a few minutes to note your responses PAUSE Typically, there are 3 responses to the question of whether this is an ethically justifiable collection and use of data: No Yes It depends Most “no” responses are justified by concerns that diabetes is not infectious or contagious, so the health department should not interfere This response is supported by concerns about the need to gain informed consent to collect individuals’ personal information, and concerns about whether there is any evidence that this program would reduce the effects of diabetes These concerns represent two things we value in public health: autonomy and evidence-based action Most “yes” responses are justified by concerns that diabetes can lead to severe consequences such as limb amputation and that this eventually affects all of us in terms of costs of care both for the surgery as well as for supporting people who then might not

be able to work or interact in their communities Other “yes” responses are justified by concerns about health equity– that some people get good care for their diabetes and others do not These concerns represent another thing we value in public health: the just distribution of burdens and benefits The “it depends” responses represent attempts to reconcile the autonomy and privacy of individuals with the concerns about health inequity So, what exactly is it we value in public health and what does that have to do with public health ethics? We will begin with defining a few terms What is ethics? Bioethics? Public health ethics? And, importantly, why do we care about it? Ethics, broadly defined, is the consideration of what is right and what is wrong There are three major areas of study in ethics Descriptive ethics is the study of what people view as right or wrong We might survey people and ask them whether they think it is right or wrong for the state to tax or limit the size of sugary beverages, for example Normative ethics is what we think we ought to do and why For example, what should we do about the childhood obesity epidemic? And why should we do one thing over something else? Meta-ethics is the most philosophical of the three, and deals with how we know what is right or wrong We are going to focus today on normative ethics : We will explore what we think we ought to do and why Bioethics, as you might suspect, is the application of ethics to health, medicine, science, and technology As a field, it helps us think about what we should do in situations related to health Public health ethics is two things: It is the set of values that motivates our work, also referred to as the moral governance of public health It helps us determine what we ought to do It is also the application of a decision-making framework that helps us determine a course of action when we are faced with two or more values that conflict, when we are trying to decide between two or more options– each with a set of risks and benefits or burdens and positive outcomes In public health, there are other ‘categories’ or subfields of ethics that apply to our work, which we won’t talk about today, but I did want to mention For example, if we conduct research, the field of research ethics applies This includes institutional review boards and federal laws and guidance that outline what is permitted and not permitted when conducting research with human [and animal] participants And all of us are subject to the professional standards and expectations of the field The public health code of ethics is a set of ethical standards to guide our professional practice Some of us have additional professional codes of ethics if we have another disciplinary home– such as medicine, nursing, or the various social sciences We will focus today on ‘public health ethics’ as both our moral governance and a decision-making framework to help guide complex ethical decisions we face in our practice Why do we care about ethics in public health? We are generally good people who are drawn to the field because we are drawn to the mission What more do we need? In public health we value action– we do more than just observe; we use our observations to act to prevent morbidity and mortality Our actions depend on three basic inputs Before we act, we consider the evidence: What are we able to do? What does the evidence say is possible? We also consider what we are permitted to do In governmental public health– that is in local and state public health– we are required to do certain things by law, that is, the health department has ‘police powers’ and is required to do certain things to protect the health of the county or state Local and state laws also put limits on what we are permitted to do and our public health action must consider these as well Equally important in our decisions for action is what we should do And this is where ethics comes in There are many things we are able to do, but before we do them, we ask ourselves whether

we should do them And we base that ‘should’ on what we believe is the right action That ‘should’ part is based on our duties as public health officials, the consequences of our actions, and what we think makes a ‘good’ public health professional We call these ‘operating ethical principles’ and they help us answer the question, “What should we do?” While there is no single checklist or recipe for deciding what we should do, there are many public health ethics frameworks that converge on a few important principles to guide our behavior For example, our duties or obligations to the public include that we use interventions that work, that we focus on the fundamental causes of disease, that we are transparent and accountable, and that we reduce health inequities We must also pay attention to consequences We must reduce harms and burdens and be sure that our interventions interfere as little as possible with individual liberty If we must infringe upon autonomy, we ought to do so only when necessary to meet the public health goal This includes respecting privacy and confidentiality of individuals and ensuring that there are benefits that outweigh any infringement It has become even clearer that our field cares about ethics since the Public Health Accreditation Board (PHAB) introduced an accreditation standard for local and state health departments that requires that every health department have policies and processes in place to identify and resolve ethical issues that inevitably arise in our work This standard is included in the most recent version of PHAB’s accreditation requirements and several health departments have achieved accreditation using these new standards So, where do these “shoulds” come from? We are going to take a look at how public health ethics developed from its close cousin, clinical ethics Importantly, we will highlight some of the differences in duties and consequences that help us think a little differently about the “should” in each field Let’s start with the “patient.” In clinical medicine, the patient is the individual sitting across from the provider The health care provider has what we call a fiduciary duty to that individual patient– a duty to ensure that the patient’s interests are primary The individual in the focus of the benefits, and to honor a person’s autonomy, individual consent is required for care In public health, on the other hand, the “patient” is the community or population We care about individuals and we seek benefits for the population We have a community orientation and are traditionally very effective at engaging affected communities in our decisions In addition to different ‘patients’, public health differs from medicine in its approach In the clinical setting, health care providers use medical interventions to cure or treat after a condition presents Whereas in public health, with the exception of vaccines, we use primarily non-medical means to prevent illness and promote health We use things like policy, laws, sanitation, and behavior change to promote well being In medicine, most professionals have similar training, while in public health, we use diverse practitioners with diverse training, all of whom bring important perspectives to the table To change a single community behavior– let’s say we want to increase physical activity among children– to change this behavior we need expertise in child development, civil engineering, safety, nutrition, physical activity, and more These diverse perspectives bring together a variety of thoughts about what we ought to do to achieve our goal And those diverse perspectives enrich our approach These diverse perspectives also influence what it is we see as motivating our behavior Our ethical concerns, or the moral justifications for our work are different in public health In clinical medicine, the focus is on individual liberty, autonomy, and doing good for the individual patient This is what we want and expect when we go to a health care provider In public health, we respect individuals but have to consider additional moral justifications for our actions We focus on our interdependence and relatedness; we think a great deal about social good and avoiding social harm We are motivated by social justice and human rights

All of these things make up the moral governance of public health Importantly, public health ethics developed as a field separate from clinical ethics because we found that the heightened focus on autonomy in the clinical setting over past 40 years is often incompatible with health needs of a population We live on this planet with over 7 billion others and in public health we recognize that we must pay attention to the diversity and merits of pluralistic values, values such as equity, reciprocity, the common good, solidarity, and justice In public health we are dealing with a public good and this requires a shift from a focus on the individual to the collective, a shift from one’s own personal moral compass to a broader focus on ethical decision making for the community These decisions require professional judgment This reminds me of a something I once heard during an animal care and use site visit I participated in Jim Swearengen, who was then a senior director for the accreditation body, said, “Professional judgment is the judgment of the profession, not the professional.” This reinforces the move required of us in public health from our individual moral compass and consideration of what would be best for us in the situation, to consideration of the many perspectives with which we work as professionals This shift to a community perspective requires a shift in our ethical duty This requires transparency in order to nurture trust with those we serve; It requires pluralism to promote participation; And it requires a focus on the community to emphasize that what is good for the community is often best for the individual… Okay, back to our case Here we have the same case description, but now we will focus on the public health ethics dimensions of the situation Review the case again, and given what we’ve just discussed about what values drive public health, pause the recording and jot down responses to the following questions What are the public health ethics dimensions of this case? Would you do anything differently now (compared with your first response)? How would you justify your position differently? Pause the recording here and take a few minutes to note your responses PAUSE Among others, some of the important public health dimensions of this case include: Our concerns for health equity and public beneficence– What do we owe community members who have fewer resources? Should zip code determine how well a person’s diabetes is controlled? An emphasis on public benefits– How might this program help the entire community? Engagement and transparency– What do affected communities think about the program? What about reciprocity– Are we doing enough to provide affected populations with what they need to be healthy? Are there other root causes or social determinants that we should be considering or prioritizing? Will the benefits of this program outweigh the infringement on privacy and autonomy? Is there any other way to achieve the same goal that infringes less on already vulnerable community members? After considering these public health values, we are more likely to see a way forward for a program like this to help persons for whom something is falling through the cracks Faced with a case like this, or one of the many other kinds of public health problems, what does a public health professional need to know how to do? What are the skills we need to help us identify and deal with these ethically complex questions? All of us who work in public health should have a basic understanding of how to do four things related to ethics: Identify the ethical dimensions of our work: We have to know when there is a potential problem Recognize and articulate when we see value conflicts or ethical dilemmas: We need a vocabulary to describe when things ‘feel wrong’ or when conflicting values stop us from moving forward Deliberate a path forward to address the dilemma: In an action-oriented field like public health,

we have to figure out what to do Then implement and evaluate the solution to inform our future work: We have to stay open to course correction and incorporation of new information Let’s look at each of these skill domains Identifying ethical dimensions in public health requires us to recognize that what we do in public health is based on two things: what we can do (that is, what science tells us is possible and effective) and what we should do (that is, moral justification for our action) For example, evidence tells us whether a vaccine is safe and effective for preventing this year’s influenza, and ethics helps us decide whether we should require all staff to be immunized for seasonal flu Identifying ethical dimensions of our work requires us to recognize how ethical questions differ from other kinds of questions Ethical questions are different from personal preferences and cultural customs For example, when we ask the question, “Should our department implement casual Fridays?” we are asking whether our workplace culture would support such a dress code This is a different question than whether we should promote employees based on how they dress at work Here we have to determine whether it is the right, or just, thing to do to promote people based on their wardrobe Ethical questions are also different from legal question We can ask the question whether we should allow a child who has not been vaccinated for measles into school and we can refer to what the law says on the matter That is different from the ethical question, “Should we force parents to vaccinate their children?” This is a question about whether we think it is right for the state to override parents’ decisions Not all questions or distinctly one type or another Some are both and depend on how we ask them Finally, when we look for the ethical dimensions of public health questions, we are articulating the values associated with the action or policy Many times these are straightforward and help pave the way for a reasonable justification for our actions in public health In fact, we all make many decisions about ethical dimensions every day, often without much thought Those are the easy ones It is still important in these ‘easy’ cases to identify and communicate the ethical justifications of our decisions to maintain transparency Knowing why is an important way to build trust with our stakeholders It is when we identify conflicting values that it gets more complicated When two or more values conflict and lead toward different decisions based on which of the conflicting values we prioritize, this is when we have an ethical dilemma on our hands In addition to skills in identifying the ethical dimensions of our work, we need a vocabulary to articulate ethical dilemmas we face We need a working knowledge of the underlying values that motivate our work Earlier we talked about the various moral motivations for our work and discussed that while there is no single public health ethics framework, there is agreement that public health ethics comprise both liberal concepts (not ‘liberal’ as in politically liberal, but liberal in terms of a ‘focus on the individual’) and collective concepts, those values that are more community oriented such as our public health duties and obligations, our need to produce community benefits and prevent harms, ideas like justice, equity, relationships, and participation There are times when two or more of these concepts are at odds and we must be able to articulate what it is that is conflicting Recently, some public health ethics scholars have moved from a framework of the individual versus the community toward a consideration of both respect for individuals and protection of community health There has been a move from the individualistic approach in bioethics toward the collective of the community and solidarity in public health ethics in part based on the observation that often what is good for the community is good for the individual and what is good for the individual is often good for the community

With this knowledge of the values that motivate our work, we can begin to articulate which of the motivations and values are in conflict for our particular problem The typical dilemmas we identify in public health are around the conflict between individual liberty and social good For example, if we have a flu pandemic and need to restrict a community’s movement or prevent people from gathering, say at school or even the grocery store, we can see the conflict between an individual’s freedom of movement and the good that would come from preventing exposure to a potentially deadly infection Which value should take priority? Before we can decide, we have to identify and articulate what is in conflict There are many other examples in public health where the values that motivate a policy or action conflict with each other Equity, reciprocity, and justice can conflict in a situation where we want everyone to be vaccinated and are trying to decide whether to provide free vaccine to the entire community, even those who could easily afford to get it on their own You might already be thinking of our A1C case, and how making decisions about pubic health surveillance can raise conflicts between public beneficence (or doing good for the community) and individual privacy So, let’s look again at our same case The third part of our exercise is to think about the following questions about the proposed program What are the ethical dilemmas in this case (e.g., what values conflict)? Recommend whether and how to move forward with a plan to reduce diabetes in the city Pause the recording here and take a few minutes to note your responses PAUSE We see a number of conflicts in this case– value conflicts that we must identify and deal with in order to make an effective and trustworthy public health decision We see autonomy and privacy conflicting with justice and social good We see public beneficence (or, doing good for the public) conflicting with the fact that we do not yet have evidence that this program will work We see confidentiality conflicting with our desire for health equity And I’m sure you found others It looks like we have an ethical dilemma on our hands… What do we do? We already discussed that in this case we need to do more than just consider our own moral compass And… …there is no 1-800-call the ethicist, red phone we can call to reach the moral authority on the question We need some tools to help us approach the dilemma that help us get beyond personal opinions about what we should do, and move us toward a reasoned decision based on both evidence and the moral justifications of our field This is where a process for ethics decision making comes in And this process is what Philip Kitcher calls “social technology.” He said, “Ethics is a social technology, one for which there are no experts There is only the possibility of conversation, ideally free of factual mistakes and imbued with mutual sympathy.” There is a myth that an ethics committee has a red phone and is the moral authority for ethical dilemmas But, alas, this is not the case Ethics committees can be experts in the process of deliberating through conflicting values, especially if they use a process called deliberation Deliberation is an effective method for addressing open questions– questions to which there is not an immediately obvious answer Not all questions or decisions are ripe for deliberation Deliberation is not useful if a decision has already been made or if input is unwanted And nothing hurts public trust quite like ‘acting’ like we want feedback, then doing nothing with it Sometimes community engagement is sufficient for public health decisions In more ethically complex situations, we need to engage the community in a deliberation, not just asking them what they think, but bringing them to the table to help find a path forward Deliberation is a particular method of problem solving for the kinds of questions that can benefit most from it– open questions with many diverse perspectives to consider

Deliberation requires that we get as many of those diverse perspectives around the table as we review scientific evidence and the lived experience of affected communities We should think of affected communities as any group affected by our policy decision Often this is the public, or subpopulations in our communities, but in some circumstances it is also health care providers, public health personnel, other public officials It can be a sign that we missed a critical perspective if the deliberation seems to come to common ground very quickly and without much discussion The process of deliberation includes developing an understanding of the values at stake from the various perspectives It hinges on participants providing publicly accessible reasons for their positions, and mutual respect for differences Deliberation differs from discussion and debate in important ways For additional information on how to conduct deliberative processes, please see the Bioethics Commission’s 2016 report entitled, Bioethics for Every Generation: Deliberations and Education in Health, Science, and Technology, available at bioethics.gov Once we’ve decided on a solution to our ethically complex problem, we face a final step, which is to implement and evaluate This is not unlike what we do in all of our routine public health practice Implementation and evaluation requires us to monitor progress, collecting evidence and keeping the process open to new information We must ask our diverse stakeholders and make necessary adjustments and changes Keeping tabs on how things went this time will help us learn lessons when similar cases present themselves in the future To summarize the skills we hope to develop in order to infuse ethics into our public health practice: There are four domains, or sets of skills, that all public health professionals need to implement in order to make ethical decisions in their practice These four domains fit together in an iterative cycle, starting with the ability to identify the ethical dimensions of our work, then identifying and articulating when ethics dilemmas (or value conflicts) emerge Even in the absence of an ethical dilemma, it is useful for public health officials to communicate the ethical dimensions of their decisions This transparency builds trust, which is necessary for us to do our work If an ethical dilemma emerges, we can seek the assistance of the health department’s ethics committee, if one exists, to deliberate a path forward Finally, we need to implement our solution and keep tabs on how things went in order to integrate new information should it arise Deliberation is a reflective and participatory method It is multidimensional and open to revision based on experience and evidence Gaining skills in deliberation will provide public health ethics committees with a new set of tools to find a way forward on the many ethically complex problems we face Before we wrap up, a note about our case This is an actual case, faced in NY city in 2005 After a couple of years of community engagement and deliberation about how best to address the various value conflicts brought about by this plan, the NYC health department moved forward with the system with an option for patients to opt out of being contacted by the health department They continue to monitor the system, including hearing from another affected community– health care providers They hope the system will provide much-needed evidence about how a system like this affects the targeted health outcomes I hope as you reflect on the role of ethics in public health, that your thoughts are now filled with new words and an interest in the role that each of us plays in infusing ethics into our work Thank you for joining us today

You can find more about bioethics and the work of the Presidential Commission for the Study of Bioethical Issues at bioethics.gov

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