Study on ethical issues in collection and utilization of health data

本研究的目的是从隐私保护的角度考虑收集和利用个人健康数据的伦理问题，第一年使用一种通用的调查表，调查了农村和大城市居民、企业职工和学生对健康调查的态度。除家庭健康史、女性月经史、生育史等问题外，未发现心理抗拒。百分之七八十的考生同意将血样用于健康检查以外的目的。但同意在未经考生同意的情况下使用的人约为20%。总体而言，女性比男性更敏感，青少年比老年人更敏感。第二年，对流行病学家、公共卫生护士和职业卫生专业人员进行卫生专业人员态度调查。整体而言，他们对保障个人资料的态度与现行国际道德守则雅阁。然而，由于个人健康数据主要由非医务人员处理，因此在小型企业中可能会出现一些个人数据保护问题。以《劳动安全卫生法》为依据的强制性职业健康检查受到了年轻一代职业卫生工作者的批评。流行病学研究中的问题。在对个人资料有严格法律保护制度的西方国家，有许多评论强调利用研究成果的好处，以获得公众对流行病学研究的理解和合作。

This study was carried out to consider ethical issues on collection and utilization of personal health data in relation to the privacy protection.In the first year, the examinees' attitudes to the health surveys were studied using a common form on the inhabitants in rural and metropolitan areas, workers in an enterprise and students. No psychological resistances were found except for the questions on family's health history and menstrual or reproductive histories of females. Seventy or eighty percent of examinees agreed with the use of blood samples for the purposes other than health check-up. But those who agreed with the use without the examinees' consent were approximately 20%. In general, females were more sensitive than males and youngsters were more sensitive than the elders to the use without the examinees' consent.In the second year, the attitudes of health professionals were surveyed on the epidemiologists, public health nurses and occupational health professionals. In general, their attitudes on the protection of personal data were in accord with the current international codes on ethics. However, it is supposed that some problems on personal data protection may occur in small enterprises, because personal health data are mainly handled by non-medical staffs. The obligatory health check-up based on the Industrial Safety and Health Law was critisized by some occupational health professionals in younger generation.In the third year, we collected domestic and foreign literatures on ethical. problems in epidemiologic studies. In the Western countries where rigid protection system on personal data was provided by law, there were found much comments which stressed the benefit of utilization of the research results, to get understanding and cooperation of public to epidemiologic studies.