Biliary atresia in Uganda: Current ethical challenges and advancement of public policy

Area of Science:

• Pediatric Gastroenterology
• Hepatology
• Medical Ethics

Background:

• Biliary atresia is a neonatal cholangiopathy leading to liver failure.
• Prompt diagnosis and Kasai portoenterostomy are crucial in high-income countries.
• Liver transplantation is the definitive treatment for advanced or failed Kasai portoenterostomy cases.

Purpose of the Study:

• To discuss the ethical dilemmas in treating neonates with biliary atresia in Uganda.
• To analyze challenges in low- and middle-income countries where timely diagnosis and transplant access are limited.

Main Methods:

• Ethical considerations are explored through the lens of four patient-physician relationship models.
• Analysis includes financial toxicity, transplant tourism, and resource-limited healthcare system risks.
• Case scenarios highlight surgeon decision-making in complex pediatric liver disease management.

Main Results:

• Timely diagnosis and liver transplantation for biliary atresia are significantly challenged in Uganda.
• Ethical issues include catastrophic health expenditure for families and the risks of transplant tourism.
• Maintaining solid organ transplants in a low-resource setting poses medical and ethical complexities.

Conclusions:

• Ethical frameworks are essential for navigating biliary atresia treatment in resource-limited settings like Uganda.
• Patient autonomy and values must be considered within the context of available healthcare resources.
• Evolving healthcare policies in Uganda may impact future ethical considerations for solid organ transplantation.