Tae-Woo Kang, J. Yang, In Young Lee, Sung-Jin Jeong
The Republic of Korea is facing a rapidly aging population, with the prevalence of dementia expected to more than double by 2050, which will create major social and economic pressures. The Dementia Management Act (DMA), which came into effect in 2011, provides a national framework for dementia prevention, care and research. The DMA includes provisions to facilitate the substantial registration and statistical utilization of dementia-related data, as well as the establishment of central and regional Dementia Centers. The primary function of these centers is to coordinate care and governance. While these measures have improved monitoring, surveillance and management infrastructure, they have also raised significant neuroethical challenges relating to privacy and stigmatization when utilizing the dataset. In this study, we address these concerns and propose integrating data governance with social governance to strike a better balance between data utilization and societal values of equity and justice.