The (Im)precise Promise of Precision Medicine: Sickle Cell Disease, Race and Artificial Intelligence in Health Care

Abstract

Precision medicine (PM) is an emergent technology and method of disease treatment and prevention that considers the genes, environment, and lifestyle of each person it seeks to treat. PM promises to generate more accurate and personalized treatment to improve a person's health outcomes. The ethical considerations of PM technologies warrant further investigation to ensure that its promises are not going to be flawed for certain populations. To evaluate whether the promises of PM will be met, and to better understand the kinds of diseases that these technologies seek to treat in the first place, this paper interrogates sickle cell disease (SCD) and new promising PM-enabled treatments for the disease. The objective of this paper is to understand the social, economic, political, and racialized context in which SCD is understood and similarly the social, economic, political, and racialized context in which PM is to be implemented and to evaluate whether the promises of PM can be guaranteed for all populations, especially racialized populations. In this paper and based on a consideration of the many factors that determine health outcomes, I argue that the health- related promises of PM will cannot be met unless a complete understanding of illness, disease and their contributing factors become integral to the technology and its implementation. Finally, I look to historical accounts of Black activism with enthusiasm to show what precision medicine should look like and how its promises could be achieved for all populations, especially Black populations.