全家福:隐私法和精准医疗

Q3 Social Sciences

Journal of Archival Organization Pub Date : 2017-10-02 DOI:10.1080/15332748.2018.1522090

J. Austria

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引用次数: 0

摘要

精准医学专注于根据基因、环境和生活方式因素定制医疗。家庭健康史是标准医学检查的常见组成部分，该检查收集患者及其家庭成员的基本临床数据。这些信息一直有助于评估患者的整体健康状况。但如今，临床医生可能会使用从简单的家族健康史中收集的信息来对某些癌症进行健康风险评估或制定个人健康建议。虽然家庭成员是获取信息的主要资源，但保存医学信息的档案也是医学家谱学家挖掘救命信息的重要场所。本文的目的是回顾影响档案管理员在精准医学和家庭健康谱系世界中角色的联邦和州法律。它包括介绍家族病史及其在精准医学中的应用；对隐私和医疗记录法的简要审查，包括特朗普政府对隐私法的拟议修改；最后，法律可能发生变化的领域。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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All in the Family: Privacy Laws and Precision Medicine

Precision medicine focuses on tailoring medical treatment based on genetic, environmental, and lifestyle factors. Family health histories are a common component of a standard medical exam, which collects basic clinical data about patients and their family members. Such information has always been helpful in assessing overall patient health. But today, clinicians may use the information gathered from a simple family health history to perform health risk assessments for certain cancers or to formulate personal health recommendations. While family members serve as the primary resource to obtain information, archives that house medical information also serve as an important site for medical genealogists to mine for life saving information. The purpose of this article is to review the federal and state laws that impact the archivist’s role in the world of precision medicine and family health genealogy. It includes an introduction to family medical histories and their use in precision medicine; a brief review of privacy and medical record laws, including proposed changes to privacy laws by the Trump administration; and, finally, potential areas for change in the law.

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来源期刊

Journal of Archival Organization Social Sciences-Library and Information Sciences

CiteScore

0.60

自引率

0.00%

发文量

期刊介绍： The Journal of Archival Organization is an international journal encompassing all aspects of the arrangement, description, and provision of access to all forms of archival materials. Articles on processing techniques and procedures, preparation of finding aids, and cataloging of archival and manuscript collections in accordance with MARC, AACR2, and other rules, standards, and cataloging conventions are only part of what you"ll find in this refereed/peer-reviewed publication. The journal places emphasis on emerging technologies, applications, and standards that range from Encoded Archival Description (EAD) and methods of organizing archival collections for access on the World Wide Web to issues connected with the digitization and display of archival materials.