HealthConnect and privacy: a policy conundrum

A shared electronic health record is intrinsically privacy-invasive because it creates a comprehensive record for information-sharing. The author explains the significance of information privacy and why it is that health information warrants special protection. She also provides an overview of the existing regulatory framework and an evaluation of suggested options and proposals for addressing privacy-related issues. Her analysis of suggested consent models suggests that they ultimately involve a trade-off between privacy and the broader benefits promised by HealthConnect and that obtaining the right balance is essential if HealthConnect is to achieve optimal health outcomes.     

Altered states: state health privacy laws and the impact of the Federal Health Privacy Rule

Although the Federal Health Privacy Rule has evened out some of the inconsistencies between states' health privacy laws, gaps in protection still remain. Furthermore, the Federal Rule contains some lax standards for the disclosure of health information. State laws can play a vital role in filling these gaps and strengthening the protections afforded health information. By enacting legislation that has higher privacy-protective standards than the Federal Health Privacy Rule, states can play three important roles. First, because they can directly regulate entities that are beyond HHS's mandate, states can afford their citizens a broader degree of privacy protection than the Federal Health Privacy Rule. Second, by having state health privacy laws, states can enforce privacy protections at the local level. Finally, action by the states can positively influence health privacy policies at the federal level by raising the standard as to what constitutes sufficient privacy protection. High privacy protections imposed by states may serve as the standard for comprehensive federal legislation, if and when Congress reconsiders the issue. So far, states' reactions to the Federal Privacy Rule have been mixed. Only time will tell whether states will assume the mantle of leadership on health privacy or relinquish their role as the primary protectors of health information.     

Bioterrorism meets privacy: an analysis of the Model State Emergency Health Powers Act and the HIPAA privacy rule

Ms. Bruce's paper analyzes the interplay between the Model State Emergency Health Powers Act and the HIPAA Privacy Rule. The article begins by examining specific relevant provisions of the Act and Rule. Next, it traces the history of public health law through the court system and then uses this foundation to discuss how the Model State Emergency Health Powers Act and the HIPAA Privacy Rule could co-exist, protecting Americans in the case of a bioterror attack, while being appropriately sensitive to the confidentiality of private health information.     

Privacy Act of 1974--PHS. Notification of establishment of a new Privacy Act system of records

In accordance with the requirements of the Privacy Act, the Public Health Service (PHS) is publishing notice of intent to establish a new Privacy Act system of records 0937-0016, "Users of Health Statistics, HHS/ OASH / NCHS ." This system will be used to support the work of the National Center for Health Statistics ( NCHS ) by ascertaining from data users how NCHS can improve the usefulness of its health statistics to the public through changing content of data systems, statistical methodology used, or the nature or content of statistical publications. We are also proposing routine uses for this new system. PHS invites interested persons to submit comments on the proposed routine uses on or before June 29, 1984.     

论我国基因隐私保护的立法模式选择

基因科技的发展激发了一种新的隐私保护需要——基因隐私.学界在对基因隐私法律保护的必要性达成一致后,对具体的法律保护进路存有争议.通过梳理基因隐私综合立法和单独立法两种保护模式的学理论证、立法实践及立法背景,根据我国实际,可以认为,我国现阶段应当采取以小综合立法模式为主,辅以行业自律机制,并在条件成熟时,向单独立法的保护进路发展.     

基因检测技术与基因隐私权法律保护

当前,基因检测引发的相关法律和道德问题备受争议。基因隐私权有别于一般隐私权,其有特定的内容、性质及特征,在犯罪DNA库建立、亲子鉴定、雇佣及保险过程中进行基因检测应严格遵循知情同意、知情选择及信息安全等原则,此外也要兼顾公众知情权。应当建立符合中国国情和技术发展的保护机制,以实现合理使用遗传信息与保护基因隐私权的利益平衡。     

Privacy Act of 1974; system of records--PHS. Notification of establishment of a new Privacy Act system of records

5n accordance with the requirements of the Privacy Act, the Public Health Service (PHS) is publishing notice of a proposal to establish a new Privacy Act system of records: 09-20-0162, "Records of Subjects in Agent Orange, Vietnam Experience, and Selected Cancers Studies, HHS/CDC/CEH." We are also proposing routine uses for this system. The Center for Environmental Health (CEH), Centers for Disease Control (CDC), will use this system of records to support studies of the health effects of human exposure to the herbicide Agent Orange and to other environmental factors associated with service in Vietnam, and to assess the risks for selected cancers among Vietnam veterans. PHS invites interested persons to submit comments on the proposed routine uses on or before July 30, 1984.     

Privacy Act of 1974; report of altered system of records and new routine uses Privacy Act instructions--SSA

In accordance with the Privacy Act (5 U.S.C. 552a(e)), we are issuing public notice of our intent to make changes to the system of records entitled "Master Beneficiary Record (MBR), 09-60-0090." These changes are prompted by implementation of provisions of Public Law (P.L.) 98-21 (the Social Security Admendments of 1983, hereinafter referred to as the Amendments). We are amending the categories of individuals covered by the MBR to include individuals (nonclaimants) whose former spouses apply for or receive benefits based on their earnings and the categories of records in the MBR to includes data relating to the amount of tax withheld on the benefits of nonresident aliens. Additionally, we are proposing to establish new routine uses of MBR data in accordance with 5 U.S.C. 552a(b)(3). The proposed routine uses provide for disclosure to the Department of the Treasury for determining the Federal tax liability on Social Security benefits and, as necessary, to deposit in the Social Security Trust Funds the tax withheld on the benefits of nonresident aliens. We also are making minor revisions to the MBR notice. We invite public comments on this publication.     

基因信息与基因隐私权的保护

基因信息包含了一个人生命的全部秘密，应纳入隐私权的保护范围。基因隐私权的内容包括采样时的知情同意权，基因信息的知晓权，基因信息的保密权，基因信息的利用权。侵犯基因隐私权具有便捷性、隐蔽性、关联性、实质性、长久性等特点。我国立法应确立基因隐私权。侵害基因隐私权应承担相应民事责任。