医疗健康大数据透明度的实现与界限

The Realization and Limits of the Transparency of Big Data Used in Medical and Health Services

在大数据技术推动下,生物医学、医疗诊治、基因测序、健康管理等医疗健康技术跨越式发展,并且具有无可估量的潜在社会价值。然而,医疗健康大数据呈现出公共利益和个人利益融合与冲突、个体利益和群体利益糅合、敏感信息和非敏感信息混同等“个性化”特征,诱发了多样化生命伦理问题。大数据过程不透明是影响数据准确性、完整性及决策正确性的重要因素,故医疗健康大数据呼唤透明度的实现,但透明度应当把握限度,这取决于数据安全、累积性创新、反垄断规制等方面。现行隐私规则束缚了透明度的实现,透明度实现应突破“个人中心主义”藩篱,以数据隐私和激励创新协同保护为目标确立透明度原则,以“算法+正当程序”为中心建立透明度监管模型,以个人利益和群体利益糅合为新面向构建透明度实现机制。

Driven by the big data technology,medical and health services,including biomedical,medical diagnosis and treatment,gene sequencing,health management,etc.,have achieved leapfrog development,and have immeasurable potential social value.However,the big data of medical and health care shows the characteristics of“individualization”issues such as the fusion and conflict of public interest and personal interest,the fusion of individual interest and community interest,the mixture of sensitive information and non-sensitive information,which leads to diversified bioethics issues.The current privacy rules restrict the realization of transparency.The realization of transparency should break through the barrier of“individualism”,establish the transparency principle with the goal of data privacy and incentive innovation collaborative protection,establish the transparency supervision model with the center of“algorithm+due process”,and construct the transparency realization mechanism with the new orientation of the combination of individual interests and community interests.