Programs, policies, and technologies — particularly those concerned with health equity — are often designed with justice envisioned as the end goal. These policies or interventions, however, frequently fail to recognize how the beneficiaries have historically embodied the cumulative effects of marginalization, which undermines the effectiveness of the intended justice. These well-meaning attempts at justice are bounded by greater socio-historical constraints. Bounded justice suggests that it is impossible to attend to fairness, entitlement, and equity when the basic social and physical infrastructures underlying them have been eroded by racism and other historically entrenched isms. Using the case of Brazil’s National Health Policy for the Black Population, this paper proposes that bounded justice can contribute to justice discourses by serving as a concept, a proffering to a multi-disciplinary conceptual framework, and a potential analytic for those interested in the design of policy, technology, and programmatic interventions towards health equity.
View recent talks that center Bounded Justice here. These talks were made possible by the Center for Bioethics and Social Sciences in Medicine at the University of Michigan and the Center for ELSI Resources and Analysis (CERA)
Applications of Bounded Justice
I take up the call for a more nuanced engagement with race in bioethics by using Creary’s analytic of bounded justice and argue that it helps illuminate processes of racialization, or racial formation, specifically Blackness, as a dialectical processes of both invisibility and hyper-visibility. This dialectical view of race provides a lens through which the ethical, legal, and social implications (ELSI) of genetics and genomics field can reflect on fraught issues such as inclusion in genomic and biomedical research. Countering or interrupting racialization in precision medicine can involve asking how marginalized groups are made invisible or hyper-visible in various aspects of the research process. Incorporating these kinds of questions into biomedical research inclusion efforts could lead to potentially powerful engagements with marginalized groups and could provide the opportunity for stakeholders to engage with the ways that racialization can happen in real-time and might undermine good intentions.
To date, attempts to address racially discriminatory clinical algorithms have largely focused on fairness and the development of models that “do no harm.” While the push for fairness is rooted in a desire to avoid or ameliorate health disparities, it generally neglects the role of racism in shaping health outcomes and does little to repair harm to patients. These limitations necessitate reconceptualizing how clinical algorithms should be designed and employed in pursuit of racial justice and health equity. A useful lens for this work is bounded justice, a concept and research analytic proposed by Melissa Creary to guide multidisciplinary health equity interventions. We describe how bounded justice offers a lens for (1) articulating the deep injustices embedded in the datasets, methodologies, and sociotechnical infrastructure underlying design and implementation of clinical algorithms and (2) envisioning how these algorithms can be redesigned to contribute to larger efforts that not only address current inequities, but to redress the historical mistreatment of communities of color by biomedical institutions. Thus, the aim of this article is two-fold. First, we apply the bounded justice analytic to fairness and clinical algorithms by describing structural constraints on health equity efforts such as medical device regulatory frameworks, race-based medicine, and racism in data. We then reimagine how clinical algorithms could function as a reparative technology to support justice and empower patients in the healthcare system.
The intertwined pandemics of racism and COVID-19 have been deadly for Black Americans and other communities of color. They have put a spotlight on public health and the important ways that the field must become explicitly anti-racist to advocate for institutional and systemic changes that will facilitate good health. The Washtenaw County Board of Health passed a resolution June 30, 2020 explicitly declaring racism as a public health crisis and confirming our collective commitment to health equity in Washtenaw County. We will use the concept of Bounded Justice to help the health department ask new questions that will lead to anti-racist actions. The concept of Bounded Justice helps us understand that we must assume that deeply entrenched systemic racism undercuts any intended health equity processes. It helps institutions and actors name the limits of what is possible in any given action. By co-creating a model of organizational anti-racist decision making that leads to the development of a Justice Impact Assessment (JIA) tool (see Aim 2), we will move the health department from mere recognition of racism as a public health issue to anti-racist practice. Using the Washtenaw County Health Department (WCHD) as our partner, we propose to implement and evaluate the Anti-Racist County towards Justice (ARC towards Justice) project. Our research proposal aims to:
Aim 1: Conduct formative research to identify community perceptions and baseline knowledge, attitudes, and practices of WCHD staff related to racism at WCHD.
Aim 2a: Co-create with WCHD and WC community members a Justice Impact Assessment.
Aim 2b: Apply the Justice Impact Assessment within WCHD to assess and revise one area of internal policies and practices and one WCHD external community
Aim 3: Conduct a mixed-methods process and impact evaluation