Ethical considerations for informed consent in infertility research: The use of electronic health records.

Advances in medical ethics Pub Date : 2015-01-01 Epub Date: 2015-12-21 DOI:10.12715/ame.2015.2.7

Kristen J Wells, Janna R Gordon, H Irene Su, Shayne Plosker, Gwendolyn P Quinn

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Abstract

The growing use of electronic health records (EHRs) in healthcare provides rich opportunities for biomedical research. Using EHRs, massive quantities of patient data can be extracted for research without the need to recruit patients, schedule study visits, or rely on self-reporting. However, this innovation poses significant concerns about patient privacy and confidentiality of data. Patients receiving infertility treatment may be particularly vulnerable to data breaches, as their EHRs often include sensitive health information about themselves, their partner, and their offspring. Helping patients with infertility to make informed decisions about sharing data is crucial, yet little is known about best practices for obtaining informed consent to use EHR data for research. This commentary reviews possible options for obtaining informed consent for EHR use among patients seeking fertility services. In addition, this commentary summarizes the limited research available on patient preferences for informed consent practices.

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不孕症研究中知情同意的伦理考虑:电子健康记录的使用。

电子健康记录(EHRs)在医疗保健领域的日益普及为生物医学研究提供了丰富的机会。使用电子病历，可以提取大量患者数据用于研究，而无需招募患者、安排研究访问或依赖自我报告。然而，这一创新带来了对患者隐私和数据机密性的重大担忧。接受不孕症治疗的患者可能特别容易受到数据泄露的影响，因为他们的电子病历通常包含有关自己、伴侣和子女的敏感健康信息。帮助不孕症患者做出关于共享数据的知情决定至关重要，但人们对获得知情同意将电子病历数据用于研究的最佳做法知之甚少。本评论综述了在寻求生育服务的患者中获得电子病历使用知情同意的可能选择。此外，这篇评论总结了现有的有限的关于患者对知情同意实践偏好的研究。

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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