Privacy and health information: the need for a fine-grained account.
Privacy and health information: the need for a fine-grained account.
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隐私和健康信息：需要细粒度的账户。
DOI：
10.1093/intqhc/12.1.5
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发表时间：
2000
期刊：
影响因子：
--
通讯作者：
J. van den Hoven
中科院分区：
文献类型：
--
作者：
J. van den Hoven
隐私问题是正在进行的关于隐私问题细节的辩论的核心。为了更准确地说，我们需要重塑几乎所有西方民主国家的“隐私与健康”问题--问题是如何平衡个人权利和集体利益。就更细粒度的账户而言。就医疗保健中的一般隐私问题而言，主题太复杂而不能处理，自由主义者倾向于强调个人道德权利的重要性，这些概念包括“健康数据”、“隐私”、“机密性”、“医患关系”。例如，我们需要医疗隐私和信息自决，而社区主义者通常辩称，社区利益规定了哪些利益相关者和各方参与[3]，提出了哪些具体的规范性访问规则[4]，从获取个人健康数据的成本降低、更好的医学研究、改善公共健康和质量、在哪些背景下创建和使用医疗信息[5、6]、在哪些不同的卫生保健领域使用这些信息。自由主义观点已在西方世界占据主导地位。特别是在欧洲，这导致了内部(临床、医学研究、质量测量、技术评估、医院管理)和外部强有力的保护个人隐私的法律。最近提交给欧洲委员会的一份报告(保险、商业、营销、政治、刑事司法、会计)医疗领域可以区分[7]，伦理呼吁在欧盟隐私权提供的框架内对医疗保健数据采取进一步的法律保护措施，允许哪些领域和领域的边界进行信息交换，哪些不允许，这是1995年的指令[1]。Don Detmer让人们注意到社群主义的一面是需求(了解、打印、复制到等)。以及(真实和感知的)相关利益相关者的脆弱性，如何引发关于健康数据隐私的争论。像Amitai Etzion i一样，他担心一些负面影响，他们对医疗保健系统的信任受到影响[8]。但首先，我们必须区分知情同意原则作为欧洲和美国大多数隐私倡议的核心内容的不同影响，道德理由可能证明健康数据的数据保护制度是正当的[9]。这将完成细粒度的帐户[2]。其中一个负面影响是，审查医疗保健质量衡量数据的能力严重侵犯了医疗保健的信息隐私，使我们能够更仔细地权衡相互竞争的主张。由个人自行决定是否选择退出的条款会造成损害。德特默的论点相当于数据保护的一种形式数据保护的第一种道德理由与防止伤害有关，更具体地说，是公共产品的论点：医学科学和高质量的医疗保健是公共产品，需要通过利用关于个人的信息对个人造成稳定的(经济损害)。个人信息被所有人使用的事实和信息)输入和努力。如果太多的人通过选择匿名、不对个人造成伤害或造成严重不利而“免费搭便车”，并不一定使这种使用违反道德规范的行为能够获得他们的健康数据，那么这些公共产品就不能在感兴趣的水平上持续和产生。这种隐私权。在信息社会中，有一种新的易受信息危害的脆弱性。阻止限制隐私和反对选择退出控制的争论旨在恢复个人隐私之间的平衡，以信息为基础的伤害为限制获取医疗记录提供了最有力的理由。社区方面的权利和需要知道。德特默认为，不那么第二种道德理由来证明数据保护与平等和公平有关，这符合我们的共同利益。对我们的医疗数据的使用越来越敏感。我同意德特默的观点，即隐私问题不会让人们意识到个人数据市场可以提供的好处。许多对隐私的担忧似乎已经消失，可能成为美国和欧盟之间关系的障碍，以及关于使用和二次使用个人数据的交换做法和私人合同的解散。但这阻碍了医疗保健的质量衡量。德特默正确地指出，尽管个人数据交易的市场机制似乎正在发挥作用，但并不是所有的个人消费者和对个人健康信息的使用都围绕着隐私的实际意义展开(我的重点)。我认为，一些患者正在透明和公平的市场环境中交易他们的数据。此外，他们并不总是知道，如果隐私的实际意义这一问题对他们在签署合同时所同意的内容有什么影响，那么确实可以解决棘手的隐私问题。其中的数据保护法针对的是正面的，如果我们可以更准确地
The privacy issue lies at the heart of an ongoing debate in the details of privacy questions. In order to be more precise we need to recast the ‘privacy versus health’ issue nearly all Western democracies – the question is how to balance individual rights and collective goods. As far as the in terms of a more fine-grained account. The subject matter is too complex to be handled in terms of general privacy issue in health care is concerned, liberalists tend to emphasize the importance of an individual moral right to notions such as ‘health data’, ‘privacy’, ‘confidentiality’, ‘doctor–patient relationship’. We need, for example, to medical privacy and informational self-determination, whereas communitarians typically argue that the community benefits specify which stakeholders and parties are involved [3], which specific normative rules of access are proposed [4], from access to personal health data in terms of cost reduction, better medical research, improved public health and quality in which contexts medical information is created and in which contexts it is used [5,6], which different domains of health care. The liberalist view has become dominant in the Western world. Especially in Europe this has lead to within (clinical, medical research, quality measurement, technology assessment, hospital administration) and outside strong privacy laws which protect the individual. A recent report to the European Commission of the European Group (insurance, commerce, marketing, politics, criminal justice, accountancy) the medical sphere can be distinguished [7], on Ethics calls for further legal protective measures for health care data within the frame provided by the EU privacy which information exchanges across the boundaries of spheres and domains are allowed and which are not, which directive of 1995 [1]. Don Detmer draws attention to the communitarian side are the needs (to know, print, copy to, etc.) and (real and perceived) vulnerabilities of the relevant stakeholders, how of the controversy of the health data privacy debate. Like Amitai Etzioni he is concerned about some of the negative their trust in the health care system is affected [8]. But first and foremost we must distinguish between the different effects of the principle of informed consent as the centrepiece of European and most US privacy initiatives moral reasons that may justify data-protection regimes for health data [9]. This will complete a fine-grained account [2]. One of the negative effects is that the ability to review data for quality measurement in health care is seriously of informational privacy in health care and will enable us to weigh competing claims more carefully. compromised by ‘opt out’ provisions at the discretion of individuals. Detmer’s argument amounts to a form of the The first type of moral reason for data protection is concerned with the prevention of harm, more specifically public goods argument: medical science and quality health care are public goods, which require a steady (financial harm done to persons by making use of personal information about them. The fact that personal information is used to and informational) input and effort by all. If too many people ‘ride free’ by choosing anonymity and not making inflict harm or cause serious disadvantages to individuals does not necessarily make such uses violations of a moral their health data available, then these public goods cannot be sustained and produced on an interesting level. This right to privacy. In an information society there is a new vulnerability to information-based harm. The prevention of argument for limits to privacy and against opt-out controls aims at restoring a balance between individual privacy information-based harm provides the strongest possible justification for limiting access to medical records. rights and the needs to know on the part of the community. It is in our common interest, Detmer suggests, to be less The second type of moral reason to justify data protection is concerned with equality and fairness. More and more sensitive to the use of our medical data. I agree with Detmer that the privacy issue will not people are aware of the benefits a market for personal data can provide. Many privacy concerns seem to have simply go away and may become an obstacle in the relations between the USA and EU, as well as an dissolved in quid pro quo practices and private contracts about the use and secondary use of personal data. But impediment to quality measurement in health care. Detmer correctly points out that ‘much of the debate about the although a market mechanism for trading personal data seems to be kicking in, not all individual consumers and use of person-specific health information swirls around the practical meaning of privacy (my emphasis). I think that some patients are trading their data in a transparent and fair market environment. Moreover they do not always know of the hard privacy problems could indeed be resolved if this issue of the practical meaning of privacy would be what the implications are of what they are consenting to when they sign a contract. Data protection laws in these addressed head-on and if we could be more precise about