A short primer on Urban Bioethics
by Nora Jones, PhD — on behalf of the Center for Urban Bioethics at Temple University
Urban bioethics is a branch of bioethics grounded on the assertion that health disparities are an ethical problem. While health disparities — differences in health outcomes based on social, economic, political, and structural forces — are endemic to much of the United States, urban and rural alike, the Center for Urban Bioethics at Temple University points a critical lens on urban spaces, areas defined by their density, diversity, disparities.
We place the birth of urban bioethics in the late 1990s with a group of doctors, theologians, social scientists, public health workers, and others in and around New York City who shared a passion for working towards health equity. Much of the inspiration for the founding of our center and our MA program comes from the work of two of these scholars, Drs. Jeffrey Blustein and Alan Fleischman. In their roadmap for adapting bioethics to the urban context, they challenged our field to give greater importance to physical context — a person’s neighborhood and skin color, for example — as factors influencing health. If we are to accept this challenge, if we believe that more thoroughly integrating social context into bioethics can yield fruitful change in the practice of medicine, research, policy, public health and more, bioethics will need a fundamental reorientation.
Bioethics in general is a field that provides us with a set of guideposts and a toolbox. Guideposts help people make decisions about right versus wrong behavior. Obtaining informed consent in clinical care and research, for example, is the right thing to do because it respects an individual’s right to determine what happens to their own body. The requirement for clinicians to keep medical knowledge up to date through continuing education courses, for example, is the right thing to do to help ensure that we are not causing people harm by practicing with out-of-date information.
The bioethics toolbox helps us with the more quotidian and often more complex right versus right questions. The first element of the toolbox are principles (of autonomy, beneficence, non-maleficence, and distributive justice). Principles, and the stakeholders tied to them, are an integral first step in analyzing a conflict, impasse, or dilemma in which there is more than one right course of action.
The second step is applying a theory of decision-making that will help us weigh the principles ethically. Two of the most common theories are consequentialism (pull the lever, kill one to save five) and deontology (don’t pull the lever because killing is categorically wrong). The first evaluates the options based on the end result — the action that leads to the most ‘good’ is the more ethical action. The latter judges the options based on the nature of, and rationale for, the action. (NBC’s ‘The Good Place’ is a great tool for teaching about this toolbox as it is replete with scenes that explain, always amusingly & sometimes graphically, the trolly problem that reflects these two theories.)
So where does this leave us? It leaves us with a toolbox that does help with some important bioethics questions — How do clinicians work with families who continue to request what clinicians deem “futile” interventions for their loved ones? How should we organize our organ transplant networks to optimize individual patient autonomy while considering the social charge of institutions to be good stewards of scarce resources? How should we regulate medical aid in dying in a way that respects patient autonomy while also not asking clinicians to break their duties of beneficence and non-maleficence? The bioethics toolbox does help us break down and evaluate these questions.
And so the toolbox is necessary; it is not, however, sufficient.
What’s missing in this formulation is the ability to incorporate differentials in power or social, cultural, or economic capital. What’s missing is the ability to incorporate into our thinking the impact of a lifetime of exposure to racism that leads black and brown patients to experience later diagnoses and more deadly prognoses. What’s missing are critical voices in the room that tell us our disaster response plans requiring school closures would deprive many children the bulk of their daily caloric intake. What’s missing are advocates in funding panels that foster respect and attention to community-based research.
To practice medicine, conduct research, or enact policy in ways that are attuned to these urban bioethics concerns, we need 3 additional principles and 1 additional theory in our toolbox.
Autonomy → Agency
No one will say that autonomy should be kept off of the principles list. It should not, however, be placed first, for autonomy without context is too philosophically abstract, and if placed at the center of our deliberations can lead us to unintentionally behave unethically. All of us (adults with capacity, to be more specific) have autonomy — we all have the right to determine what happens to our bodies and are free to make independent and uncoerced choices.
None of us, however, is fully unconstrained by limits on our agency. Agency here refers first to our ability to see a complete range of options possible in a given situation, and second, to our capacity to carry out a particular choice. Our agency, the choices we are able to envision and make are dependent on the experiences we have had — and this applies to every one of us. And those experiences are influenced by our gender, sexual orientation, skin color, class background, educational experiences, schools attended — in other words, by our context. And if we act only in a way that respects a patient’s abstract autonomy, but doesn’t account for their particular agency, we are doing a disservice to that patient: We are setting them up for failure if they cannot actually take our advice, we are wasting resources when they are readmitted for preventable recurrences of illness, and we are contributing to our own burnout by making the same mistakes again and again.
Justice → Social Justice
The second principle we need to adapt is justice, and we should do this by more actively including attention to social justice. Social justice as a principle requires us to consider contextual and structural inequities when allocating resources. The common equality versus equity meme and all of its manifestations and adaptations reflect the underlying concern with the fact that we should be thinking about allocating resources so that everyone has the capacity for health. A social justice framework asks us to rethink the factors that contribute to our health. Health behaviors — smoking, exercise, alcohol consumption — should not be considered to be purely individual. Our behaviors are socially influenced, for example, by our access to healthy food and ability to exercise safely on our streets. The impact of our physical environment — air and water quality, for example — differs by where we are able to live, which is primarily socially determined. Social justice demands not simply that we provide proper advice to all patients regardless of context, but rather, that we tailor our advice to patients depending on their context. The advice to “eat a healthy and balanced diet” looks different in a community with a high median income and a local grocery store that carries fresh vegetables than it does in a community marked by poverty where the only accessible food is from corner stores and fast food restaurants.
Solidarity
Finally, solidarity should be added to our toolbox of principles. As a principle it binds two or more stakeholders together; it does not separate them into their disconnected corners of our bioethical conflict diagram. It is a principle that requires us to acknowledge that the social forces that led some of us to be particularly advantaged and set up for success are the same forces that have made it much more difficult for others. It is a principle that reinforces the fundamental healing bond between provider and patient, a bond that affirms that, as Levinas said, we each exist for the other. It reminds us that, in the words of activist Lilla Watson, “If you have come here to help me, you are wasting your time. But if you have come because your liberation is bound up with mine, then let us work together.”
Capacity Approach
When a patient comes to us with moderately elevated blood pressure, we can respect their autonomy by giving them multiple options for their care — lifestyle changes and several medication options — and help them decide what is best. But, if we ask questions about their social and cultural context, their preferred foods, their available grocery stores, their access to green spaces, and their ability to pay for medicine, we can work together to enhance their agency and choose a course of action that will better enable them to make an informed choice and work towards their own health.
This approach to practice reflects a theory of decision-making called the capacity approach, in which the ethicality of a choice is judged by the relationship of that choice to the person’s actual capabilities, that is, their real opportunities to do and be what they have reason to value. The capacity approach requires solidarity, reflects a social justice orientation, and fosters agency.
This adaptation of the trolly problem meme illustrated in the image above symbolizes the fact that some communities may have trolleys that are controlled by buttons and not levers, and others may have broken levers or no one to operate the controls. It places duties and consequences in context. And when that context is dense, diverse, and riddled with disparities, we cannot ethically continue to practice bioethics as usual.
About the Center for Urban Bioethics:
Our vision is simply health equity, and we are committed to eliminating unethical health disparities through education and research. Our interdisciplinary education gives clinicians, researchers, and policy makers the tools to advance health equity. Our community-driven research influences structural change to impact sectors including and beyond medical care. The unifying thread of all of our work is guided by the principles of social justice and solidarity with the community.
