Advancing Bioethics in Chronic Disease: Addressing Gaps and Guiding Policy

Chronic diseases—such as diabetes, cardiovascular conditions, and autoimmune disorders—are the leading causes of death and disability in the United States. Despite their prevalence and profound impact on individuals and society, bioethical discourse has historically centered on acute care, end-of-life decisions, and emerging biotechnologies. This focus has left a significant gap in ethical guidance concerning the long-term management and lived experiences of individuals with chronic illnesses. Recent scholarly work highlights this deficiency. For instance, Tom Walker notes that ethical reflection on chronic illnesses has been largely omitted within the field of medical ethics. Additionally, studies emphasize the need to consider the unique ethical challenges posed by chronic care, such as the reproduction of disadvantages within long-term treatment practices. Given the NIH’s leadership in biomedical research and its commitment to ethical standards, there is a critical opportunity to expand the bioethical framework to more comprehensively address chronic disease. This expansion would involve engaging multiple stakeholders, including federal agencies, the pharmaceutical and food industries, healthcare providers, and, importantly, patients themselves.

How can the NIH lead in identifying and addressing the ethical dimensions of chronic disease management, thereby filling existing gaps in bioethics literature and informing policy and practice across diverse stakeholders?

Project Team

• Bryan Conston
• Chloe Balin
• Justin Zou
• Monona Zhou