Schneble Christophe Olivier, Elger Bernice Simone, Shaw David Martin
Institute for Biomedical Ethics, University of Basel, Basel, Switzerland.
J Med Internet Res. 2020 May 28;22(5):e16879. doi: 10.2196/16879.
Tremendous growth in the types of data that are collected and their interlinkage are enabling more predictions of individuals' behavior, health status, and diseases. Legislation in many countries treats health-related data as a special sensitive kind of data. Today's massive linkage of data, however, could transform "nonhealth" data into sensitive health data. In this paper, we argue that the notion of health data should be broadened and should also take into account past and future health data and indirect, inferred, and invisible health data. We also lay out the ethical and legal implications of our model.
所收集数据类型及其相互联系的巨大增长,正使人们能够对个体行为、健康状况和疾病做出更多预测。许多国家的立法将与健康相关的数据视为一种特殊的敏感数据。然而,如今大规模的数据关联可能会将“非健康”数据转化为敏感的健康数据。在本文中,我们认为健康数据的概念应予以拓宽,还应考虑过去和未来的健康数据以及间接、推断和无形的健康数据。我们还阐述了我们模型的伦理和法律意义。