医疗大数据利益分配的公平感与公义性——以中国台湾地区健康保险数据库为例

Discussion on Fairness and Justice of Benefit Distribution of Medical Big Data:Taking Taiwan Health Insurance Database as an Example

隐私风险与利益分配是医疗大数据时代所衍生的两个最重要的伦理争议。隐私风险包含信息安全、社会标签化等议题,利益分配主要关注在社会资源分配的公义性。探讨将医疗大数据所得到的研究成果作为一种社会资源,在使用和交换的过程中涉利者产生的公平感与整体社会公义是否能达到一致,前者是涉利者的主观心理感受;后者是客观的社会分配正义。主张在争论有关利益分配的议题上,只有尽可能满足所有涉利者心理上的公平感,公义的社会分配-利益共享才得以可能。

Privacy risk and benefit distribution are two of the most important ethical disputes in the era of medical big data. Privacy risk includes topics such as information security and social tagging, and benefit distribution mainly focuses on the justice of social resource allocation. This paper discussed whether the sense of fairness generated by stakeholders in the process of using and exchanging medical big data as a social resource can be consistent with the overall social justice. The former is the subjective psychological feelings of stakeholders;the latter is the objective social distribution justice.This paper argued that only by satisfying the psychological sense of fairness of all stakeholders as much as possible, can the just social distribution-benefit sharing be possible.