Lako C J
Soc Sci Med. 1986;23(3):293-5. doi: 10.1016/0277-9536(86)90350-3.
In this article we discuss obstacles of privacy protection measures to population-based health research and we give suggestions for policies facilitating this research as well as protecting the privacy of the patient. Privacy is the capacity of the individual to determine which information is communicated to whom. Population-based health research is research among human populations and refers to health services research, medical sociology, epidemiology, occupational health, social dentistry, family medicine a.o. Although population-based health research focuses on groups and not on individuals, the access to health and other vital records and the possibility to identify the individuals for subsequent interview and study are of crucial importance. In various countries the legislation regarding privacy protection requires that medical records should not be disclosed unless with the consent of the individual. Therefore it forms a major obstacle to population-based health research as this research is very difficult to carry out if prior consent is required in order for the investigator to have access to medical records. Population-based health research has given us important knowledge about the etiology of many diseases and the effect of interventions. In the case of population-based health research disclosure of patient information without the explicit patient consent should be seriously considered. This disclosure should only be permitted if an institutional board has studied the project plans of the investigators and has carefully watched the privacy aspects of their studies.
在本文中，我们讨论了隐私保护措施对基于人群的健康研究的阻碍，并针对促进此类研究以及保护患者隐私的政策提出了建议。隐私是指个人决定将哪些信息传达给何人。基于人群的健康研究是针对人群开展的研究，涵盖健康服务研究、医学社会学、流行病学、职业健康、社会牙科学、家庭医学等领域。尽管基于人群的健康研究关注的是群体而非个体，但获取健康及其他重要记录以及识别个体以便后续访谈和研究的可能性至关重要。在不同国家，关于隐私保护的立法要求，除非得到个人同意，否则医疗记录不得披露。因此，这对基于人群的健康研究构成了重大障碍，因为如果研究者获取医疗记录需要事先征得同意，那么这项研究将很难开展。基于人群的健康研究为我们提供了有关许多疾病病因及干预效果的重要知识。对于基于人群的健康研究而言，应认真考虑在未经患者明确同意的情况下披露患者信息。只有在机构委员会研究了研究者的项目计划并仔细审视了其研究中的隐私问题后，才应允许这种披露。
