Gostin Lawrence O
Kennedy Inst Ethics J. 1997 Dec;7(4):361-76. doi: 10.1353/ken.1997.0033.
Widespread collection and use of identifiable information can promote social goods while, at the same time, infringing on personal privacy. Information systems are developing within the context of a fundamental transformation in the organization, delivery, and financing of health care. Changes in the health care system include rapid development of employer-sponsored health coverage, managed care organizations, and integrated delivery systems. These complex, multifaceted arrangements for delivering and paying for health care require ever-more-sophisticated information systems that facilitate extensive sharing of personal data. Systemic flows of sensitive health information occur both vertically and horizontally among employers, hospitals, insurers, laboratories, and suppliers. Beyond this complex web of vertical and horizontal sharing are the multiple demands for information management, quality assurance, research, governmental regulation, and public health. Theoretical problems exist with the law and ethics of informational privacy. The traditional method of exercising control over personal health information is through informed consent. Informed consent, however, within a modern health information infrastructure becomes highly complex. In this kind of environment, the doctrine of informed consent is flawed and does not provide sufficient control over personal information to assure adequate protection of privacy.
可识别信息的广泛收集和使用在促进社会公益的同时,也可能侵犯个人隐私。信息系统是在医疗保健的组织、提供和融资发生根本性变革的背景下发展起来的。医疗保健系统的变化包括雇主赞助的医疗保险、管理式医疗组织和综合医疗服务体系的迅速发展。这些复杂、多方面的医疗保健提供和支付安排需要日益复杂的信息系统,以促进个人数据的广泛共享。敏感的健康信息在雇主、医院、保险公司、实验室和供应商之间纵向和横向流动。除了这种复杂的纵向和横向共享网络之外,对信息管理、质量保证、研究、政府监管和公共卫生还有多种需求。信息隐私的法律和伦理存在理论问题。对个人健康信息进行控制的传统方法是通过知情同意。然而,在现代健康信息基础设施中,知情同意变得高度复杂。在这种环境下,知情同意原则存在缺陷,无法对个人信息提供充分控制以确保对隐私的充分保护。