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患者数据所有权中的伦理问题。

Ethical Issues in Patient Data Ownership.

作者信息

Chiruvella Varsha, Guddati Achuta Kumar

机构信息

Augusta University, Augusta, GA, United States.

出版信息

Interact J Med Res. 2021 May 21;10(2):e22269. doi: 10.2196/22269.

Abstract

Patient data have conventionally been thought to be well protected by the privacy laws outlined in the United States. The increasing interest of for-profit companies in acquiring the databases of large health care systems poses new challenges to the protection of patients' privacy. It also raises ethical concerns of sharing patient data with entities that may exploit it for commercial interests and even target vulnerable populations. Recognizing that every breach in the confidentiality of large databases exposes millions of patients to the potential of being exploited is important in framing new rules for governing the sharing of patient data. Similarly, the ethical aspects of data voluntarily and altruistically provided by patients for research, which may be exploited for commercial interests due to patient data sharing between health care entities and third-party companies, need to be addressed. The rise of technologies such as artificial intelligence and the availability of personal data gleaned by data vendor companies place American patients at risk of being exploited both intentionally and inadvertently because of the sharing of their data by their health care provider institutions and third-party entities.

摘要

传统上认为,美国概述的隐私法能很好地保护患者数据。营利性公司对获取大型医疗系统数据库的兴趣日益浓厚,这给患者隐私保护带来了新挑战。这也引发了与那些可能出于商业利益利用患者数据甚至针对弱势群体的实体共享患者数据的伦理问题。认识到大型数据库保密性的每一次泄露都会使数百万患者面临被利用的风险,这对于制定管理患者数据共享的新规则很重要。同样,患者自愿且无私地提供用于研究的数据,由于医疗保健实体与第三方公司之间的患者数据共享可能被用于商业利益,其伦理方面的问题也需要得到解决。人工智能等技术的兴起以及数据供应商公司收集的个人数据的可得性,使美国患者因医疗保健机构和第三方实体共享其数据而面临有意和无意被利用的风险。

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