健康医疗大数据建设与隐私保护之冲突与协调

Conflict and Reconciliation in Big Data Construction and Privacy Protection in Health Care

个人健康信息具有高敏感性,承载大量个人隐私,健康医疗大数据建设有赖于个人健康信息的汇聚与融合,理应关注大数据技术给个人隐私带来的风险与挑战。在复杂的健康医疗数据集成应用过程中,个人对自身健康信息后续转化、衍生成为“大数据”的控制力度逐渐减弱,知情同意原则的贯彻与落实难度也在层层“加码”,个人知情同意权有可能在开放和共享的大数据建设理念下被架空。统一的行业标准缺位和“算法黑箱”的现实阻碍,导致个人主体处于一种相对弱势的地位。伦理审查制度作为医疗领域把控风险、保护个人主体权益的有效机制,在健康医疗大数据建设与应用过程中也应受到重视,并对保护个人隐私发挥作用。基于健康医疗大数据应用场景的转变产生的知情同意原则的落实困难,可探索动态同意模式提升个人对自身健康信息的控制力度。为提升公众信任度,可考虑构建隐私影响评估程序,搭建隐私政策开放共享平台。

Personal health information is highly sensitive and carries a lot of personal privacy. The construction of health care big data depends on the convergence and integration of personal health information, and it is reasonable to pay attention to the risks and challenges brought by big data technology to personal privacy. In the process of complex health care data integration and application, the control of individuals over the subsequent transformation and derivation of their health information into "big data" is gradually weakening, and the difficulty of implementing and enforcing the principle of informed consent is also "increasing". The right to informed consent may be hollowed out under the concept of open and shared big data construction. The lack of unified industry standards and the reality of the "algorithmic black box" have put individual subjects in a relatively weak position. As an effective mechanism to control risks and protect the rights and interests of individual subjects in the medical field, the ethical review system should also be emphasized in the process of construction and application of big data in health care, and play a role in protecting individual privacy. Based on the difficulties in implementing the principle of informed consent arising from the transformation of healthcare big data application scenarios, the dynamic consent model can be explored to enhance the control of individuals over their own health information. To enhance public trust, the construction of privacy impact assessment procedures and the establishment of an open sharing platform for privacy policies can be considered.