Understanding Sickle Cell Disease and the Concept of Bounded Justice

Melissa Creary, PhD, joins this episode of Michigan Minds to discuss sickle cell disease research, the concept of bounded justice, and her work on how public health researchers can help create anti-racist institutions. As an assistant professor of Health Management and Policy at the University of Michigan School of Public Health, Creary researches how science, culture, and policy intersect—particularly around ethical, legal, and social concerns. She is also the associate director for the Michigan Social Health Innovations to Eliminate Disparities (MSHIELD) Collaborative Quality Improvement (CQI )initiative at Michigan Medicine, supported by Blue Cross Blue Shield of Michigan. 

Understanding Sickle Cell Disease and the Concept of Bounded Justice
Melissa Creary, PhD

“I’m really interested in the ways that we as public health researchers can help turn institutions more anti-racist. And what I mean by that is how do we assist higher education institutions, public health institutions, and pharmaceutical companies in acknowledging the destructive power of racism in society, and attempt to ameliorate their own organizational racism,” she says. 

Creary’s two main foci—race, racism and discrimination; and equity, belonging and justice—use sickle cell disease (SCD) as a lens to help better understand these two research areas. Her research interest in the illness sprang  from her experience as a child who was diagnosed with SCD at the age of three. Creary recalls having a passion for science as a young child, and reading when she was at home sick. Throughout her education, Creary was able to link her interest in science with her experience with SCD, eventually becoming a public health researcher. 

A Scientific American article, We Need to Ground Truth Assumptions about Gene Therapy, uses Creary’s lived experience with SCD and her research as an anchor to help readers understand the complicated ways the scientific community and the general patient community think about gene therapy. When it comes to planning for gene therapy, Creary explains the tension between hope and reality, along with many questions and uncertainties in between.  

“For sickle cell disease, there is a lot of interest in providing a cure for what is considered a minoritized and marginalized community. There has been historical neglect including a historical lack of therapeutic interventions, despite being the first genetic disorder that was discovered—and this is just the continuing saga of the pervasive inequity for this population. This constant quest for equity for the sickle cell population is something I use as an example to help explain a concept I developed called bounded justice.”


The concept of bounded justice, Creary explains, involves the understanding that even when policies, programs and technologies are created to increase health equity and attend to historical indignities, these technologies are limited in their reach in delivering justice due to the underlying social and physical infrastructures that have been eroded by racism and other historically entrenched isms.

The month of September is Sickle Cell Awareness Month. When compared to other diseases that affect people who are not Black, Creary says, SCD trails  in funding, research and infrastructure, which in turn leads to a lack of advances in care and treatment.

“The public health burden, lack of understanding and lack of resources for this population is significant.” 

Creary explains why it’s important to think about the ways in which racism disrupts the health resources and care that the sickle cell community is provided, and the ways in which racism disrupts the quality of life for people living with sickle cell disease. 

“During this month of September, what I would love is for people to really think about what they can do to learn more about sickle cell disease, what they can do to support the research and funding about sickle cell disease, and what they can do to support the people they know in their lives that are living with sickle cell disease. Beyond September, I want them to think about sickle cell as well, and what it represents to this nation and beyond, in terms of our quest for decreasing health disparities and health at large.”

To learn more about how to support sickle cell disease research, Creary recommended the Sickle Cell Disease Association of America website and the CDC Sickle Cell Disease information page.