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GRANULAR PATIENT CONTROL OF PERSONAL HEALTH INFORMATION: FEDERAL AND STATE LAW CONSIDERATIONS. 个人健康信息的细粒度患者控制:联邦和州法律考虑。
Pub Date : 2018-01-01
Michael J Saks, Adela Grando, Anita Murcko, Chase Millea

The advent of electronic medical records and health information exchanges has facilitated the possibility of patients exercising increasingly granular control over sensitive health information. In principle, patients should be able to control which of their health information is made accessible to which of their healthcare providers. To meet this goal, the architects of any system of granular control of patients' health information face a variety of challenges. In addition to technical, ethical, and prudential considerations, the architects of any effective system must also ensure compliance with applicable legal requirements. The extent of a patient's permissible control depends upon whether governing law prohibits providers from disclosing health information to other providers without a patient's authorization, permits providers to disclose to other providers at the provider's discretion, or requires such disclosure. To inform efforts to design a viable system, this article analyzes U.S. federal and state (Arizona) law in regard to the sharing of the following types of sensitive health information: substance abuse, mental health, genetic, communicable diseases, and sexual and reproductive health.

电子医疗记录和健康信息交换的出现促进了患者对敏感健康信息进行越来越精细控制的可能性。原则上,患者应该能够控制哪些医疗保健提供者可以访问他们的哪些健康信息。为了实现这一目标,任何患者健康信息细粒度控制系统的架构师都面临着各种挑战。除了技术、道德和审慎考虑外,任何有效系统的架构师还必须确保遵守适用的法律要求。患者可允许的控制范围取决于管辖法律是否禁止提供者在未经患者授权的情况下向其他提供者披露健康信息,是否允许提供者自行决定向其他提供者透露,或者是否要求披露。为了为设计可行的系统提供信息,本文分析了美国联邦和州(亚利桑那州)关于共享以下类型敏感健康信息的法律:药物滥用、心理健康、遗传、传染病以及性健康和生殖健康。
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引用次数: 0
THE CRIMINAL PSYCHOPATH: HISTORY, NEUROSCIENCE, TREATMENT, AND ECONOMICS. 精神病罪犯:历史、神经科学、治疗和经济学。
Pub Date : 2011-01-01
Kent A Kiehl, Morris B Hoffman

The manuscript surveys the history of psychopathic personality, from its origins in psychiatric folklore to its modern assessment in the forensic arena. Individuals with psychopathic personality, or psychopaths, have a disproportionate impact on the criminal justice system. Psychopaths are twenty to twenty-five times more likely than non-psychopaths to be in prison, four to eight times more likely to violently recidivate compared to non-psychopaths, and are resistant to most forms of treatment. This article presents the most current clinical efforts and neuroscience research in the field of psychopathy. Given psychopathy's enormous impact on society in general and on the criminal justice system in particular, there are significant benefits to increasing awareness of the condition. This review also highlights a recent, compelling and cost-effective treatment program that has shown a significant reduction in violent recidivism in youth on a putative trajectory to psychopathic personality.

手稿回顾了变态人格的历史,从其在精神病学民间传说中的起源,到其在法医领域的现代评估。具有精神变态人格的人,或称精神病患者,对刑事司法系统造成了极大的影响。精神变态者入狱的可能性是非精神变态者的二十到二十五倍,暴力再犯的可能性是非精神变态者的四到八倍,而且对大多数治疗方式都有抵抗力。本文介绍了精神变态领域最新的临床工作和神经科学研究。鉴于精神变态对整个社会,尤其是刑事司法系统的巨大影响,提高人们对这种病症的认识大有裨益。这篇综述还重点介绍了最近一项令人信服且具有成本效益的治疗计划,该计划显示,在推测的变态人格轨迹上,青少年的暴力累犯率显著下降。
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引用次数: 0
Curing the unique health identifier: a reconciliation of new technology and privacy rights. 固化独特的健康标识符:新技术与隐私权的调和。
Pub Date : 2003-01-01
Wendy J Netter

The Health Insurance Portability and Accountability Act has mandated the assignment of a universal individual health identifier in 2003. Such an identifier can increase patient confidentiality, improve patient care, lower the cost of services to the patient, enhance administrative efficiency, and increase the opportunity for medical research. Nevertheless, national identification systems raise concerns about confidentiality and privacy. Instead of a mandatory, government-assigned number, this article proposes a technologically multi-tiered system that would be administered by a mixed government and private entity. Consumers could voluntarily opt-in to the system.

2003年,《健康保险流通与责任法案》要求分配一个通用的个人健康标识符。这样的标识符可以增加患者的保密性,改善患者护理,降低对患者的服务成本,提高行政效率,并增加医学研究的机会。然而,国家身份识别系统引起了对保密性和隐私的关注。本文提出了一个由政府和私人混合实体管理的多层技术系统,而不是强制性的政府分配的号码。消费者可以自愿选择加入该系统。
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引用次数: 0
Governing population genomics: law, bioethics, and biopolitics in three case studies. 管理人口基因组学:法律、生物伦理学和生物政治学的三个案例研究。
Pub Date : 2003-01-01
David E Winickoff

Existing scholarship on population genomics has only superficially addressed issues of power and political process. Accordingly, questions of politics and governance pervade the analysis of three population genomics case studies that follow: the Human Genome Diversity Project, Iceland's Health Sector Database, and "Clinical Genomics" as defined by the Beth Israel-Ardais collaboration. An examination of these case studies reveals that the common law, U.S. regulatory law, and international law have not developed the political sophistication to make the traditional promises of biomedical ethics--respect for autonomy, justice, and beneficence--come to fruition. Further, comparisons of these projects illuminate three areas ripe for reframing--informed consent, expert ethical oversight, and commercial benefits. Four avenues of reform are suggested.

现有的人口基因组学研究只在表面上讨论了权力和政治过程的问题。因此,政治和治理问题贯穿于以下三个人口基因组学案例研究的分析:人类基因组多样性项目、冰岛卫生部门数据库和贝斯以色列-阿尔代斯合作定义的"临床基因组学"。对这些案例研究的研究表明,普通法、美国监管法和国际法没有发展出政治上的复杂性,无法使生物医学伦理的传统承诺——尊重自主性、正义和善行——实现。此外,通过对这些项目的比较,可以看出三个领域已经成熟,即知情同意、专家道德监督和商业利益。提出了四条改革途径。
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引用次数: 0
The coming pharmacogenomics revolution: tailoring drugs to fit patients' genetic profiles. 即将到来的药物基因组学革命:根据患者的基因特征定制药物。
Pub Date : 2002-10-15 DOI: 10.2139/SSRN.326582
L. Noah
The opportunity for increased precision in pharmaceutical therapy will represent one of the important legacies of the Human Genome Project. Medical researchers have long suspected that genetic differences account for some of the variability in patient response to drugs, but now they hope that the identification of single nucleotide polymorphisms will allow physicians to customize pharmaceutical interventions. Pharmacogenomics will lead to fundamental changes in how drugs are discovered, tested, manufactured, labeled, and marketed. Federal regulators, the courts, and other policy makers will face challenges in accommodating these changes, and, in turn, their responses may have important impacts on the maturation and diffusion of this technology. This Article describes these scientific developments as a prelude to asking whether legal institutions will manage to catch up to or, instead, hinder such advances.
提高药物治疗精度的机会将代表人类基因组计划的重要遗产之一。长期以来,医学研究人员一直怀疑基因差异在一定程度上解释了患者对药物反应的差异,但现在他们希望,单核苷酸多态性的识别将使医生能够定制药物干预。药物基因组学将从根本上改变药物的发现、测试、生产、标签和销售方式。联邦监管机构、法院和其他政策制定者将面临适应这些变化的挑战,反过来,他们的反应可能对这项技术的成熟和传播产生重要影响。本文将这些科学发展描述为一个前奏,以询问法律制度是否能够赶上或相反地阻碍这些进步。
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引用次数: 6
Perspectives on research in American Indian communities. 美国印第安人社区研究的观点。
Pub Date : 2002-01-01
Malcolm B Bowekaty

This article discusses research-oriented responsibilities of the Zuni governor and tribal council to the Zuni people. To reduce potential negative effects and to enhance the lifestyle of the Zuni, these bodies screen and review research in an effort to ascertain compliance with tribal law, to be culturally respectful, and to determine what, if any, beneficial effects the research will have for the Zuni people. As a result, studies concerning high prevalence disease, such as diabetes, are given preference. These principles may apply to other American Indian and Alaskan native communities.

本文探讨了祖尼总督和部落理事会对祖尼人的研究性责任。为了减少潜在的负面影响和改善祖尼人的生活方式,这些机构对研究进行筛选和审查,以努力确定是否遵守部落法律,尊重文化,并确定研究对祖尼人有什么有益的影响。因此,优先考虑有关糖尿病等高流行疾病的研究。这些原则可能适用于其他美洲印第安人和阿拉斯加土著社区。
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引用次数: 0
Native American recommendations for genetic research to be culturally respectful. 印第安人对基因研究的建议是尊重文化。
Pub Date : 2002-01-01
Linda Burhansstipanov, Lynne T Bemis, Mark Dignan

This article describes genetic research issues and recommendations identified by inter-tribal Native American groups in meetings with tribal leaders from 1995 through 1999.

这篇文章描述了基因研究的问题,以及1995年到1999年印第安人部落间在部落领导人会议上提出的建议。
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引用次数: 0
A critical appraisal of protections for aboriginal communities in biomedical research. 对生物医学研究中土著社区保护的批判性评价。
Pub Date : 2002-01-01
Charles Weijer, James A Anderson

As scientists target communities for research into the etiology, especially the genetic determinants of common diseases, there have been calls for the protection of communities. This paper identifies the distinct characteristics of aboriginal communities and their implications for research in these communities. It also contends that the framework in the Belmont Report is inadequate in this context and suggests a fourth principle of respect for communities. To explore how such a principle might be specified and operationalized, it reviews existing guidelines for protecting aboriginal communities and points out problems with these guidelines and areas for further work.

随着科学家将社区作为研究病因,特别是常见疾病的遗传决定因素的目标,一直有人呼吁保护社区。本文确定了土著社区的独特特征及其对这些社区研究的意义。它还认为,贝尔蒙特报告的框架在这方面是不充分的,并提出了尊重社区的第四项原则。为了探讨如何具体规定和实施这一原则,报告审查了保护土著社区的现有准则,并指出这些准则存在的问题和需要进一步开展工作的领域。
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引用次数: 0
A caution to Native American institutional review boards about scientism and censorship. 对美国土著机构审查委员会关于科学主义和审查制度的警告。
Pub Date : 2002-01-01
Andrew Askland

Native American Institutional Review Boards (IRBs) promote the health and welfare of tribes by reviewing protocols for research studies that focus on their tribes. The benefits of approved protocols should not be overstated lest good studies disappoint because they do not satisfy unachievable expectations. IRBs also should avoid the temptation to censor the outcomes of those studies. Science relies on candor and clarity about results and methods to move forward.

印第安人机构审查委员会(irb)通过审查以他们的部落为重点的研究协议来促进部落的健康和福利。批准方案的好处不应被夸大,以免好的研究因为无法满足无法实现的期望而令人失望。审查委员会也应该避免审查这些研究结果的诱惑。科学的发展依赖于结果和方法的坦率和清晰。
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引用次数: 0
Genetic research and communal narratives. 基因研究和公共叙事。
Pub Date : 2002-01-01
Dena S Davis

The use of DNA evidence to prove Thomas Jefferson's paternity of Sally Hemmings' children is a powerful example of how genetic research can have an impact upon the communal narratives of families and nations.

利用DNA证据证明托马斯·杰斐逊是莎莉·海明斯孩子的父亲,这是一个强有力的例子,说明基因研究如何影响家庭和国家的公共叙事。
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引用次数: 0
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Jurimetrics
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