Exploratory research on the death and survival of neonates with congenital disorders in North Korea

In 2016, North Korea ratified the United Nations Convention on the Rights of Persons with Disabilities (CRPD). However, previous data and the testimonies of North Koreans have suggested that infants born with congenital disorders are either being euthanized or else left unattended resulting in their deaths. The study focuses on the question, “How is the life or death of infants born with congenital disorders determined during childbirth in North Korea?” In-depth interviews were conducted with 20 North Korean refugees who were involved as doctors, nurses, or party officials in the policies and practices related to persons with disabilities. We analyzed the interviews using the Grounded Theory with constant comparison and confirmed that infants born with congenital defects were intentionally euthanized with the acquiescence of the North Korean political party, hospitals, or their parents. It was also observed that children with disabilities in North Korea are subjected to severe human rights abuses. The dismal conditions in North Korean society have made parents unwilling to and incapable of raising their disabled children. To preserve the lives and dignity of infants born with disabilities, systematic and profound changes are necessary in North Korean disability policies to comply with international disability rights standards. This study remains at an exploratory stage due to obstacles in accessing research data on North Korean governmental policies and the lack of credible statistics on persons with disabilities. Nevertheless, the current study offers a deeper insight and understanding of the actual conditions in North Korea. This study is significant as it addresses and shares the issues of human rights and welfare of persons with disabilities in North Korea with the concerned members of the international community.