Department of Pharmacy Practice and Pharmaceutical Sciences, College of Pharmacy, University of Minnesota, Duluth, Minnesota, USA.
Department of Experimental and Clinical Pharmacology, College of Pharmacy, University of Minnesota, Duluth, Minnesota, USA.
Clin Transl Sci. 2022 Sep;15(9):2265-2274. doi: 10.1111/cts.13360. Epub 2022 Jul 14.
Genetic exceptionalism refers to a concept that genetic information is distinct from other health data and therefore should have additional safety guards in place. The objective of this study was to establish perceptions of pharmacogenetic (PGx) exceptionalism and genetic information privacy and management within the electronic health record (EHR) from individuals who attended a PGx-focused conference. A 47-question survey was distributed to 370 attendees at a PGx conference in September 2020. The survey assessed demographics, professional characteristics, perceptions of PGx exceptionalism, knowledge of genetic laws and regulations, and EHR management of PGx information. Of the 370 participants invited to take the survey, 30% (n = 110) responded. Most respondents were pharmacists with postgraduate training (76.2%, n = 48). When asked whether PGx information was exceptional, 44% of respondents agreed while 32% disagreed. Agreement with PGx exceptionalism was associated most with respondents' lack of familiarity or knowledge with PGx. Over two-thirds (67%) felt that all members of the healthcare team should be able to access their patients' PGx information without restriction in the EHR. This study identified a lack of unanimity in the perception of PGx exceptionalism and the management of PGx information within the EHR across attendees of a PGx conference. Describing the perception of accessibility of PGx information within the EHR is important to ascertain for designing privacy-related technology, institutional management policies, and legal regulations as this area in genetics is increasingly being implemented into clinical care and clinical standards of care need to be established.
遗传例外主义是指一种观点，即遗传信息与其他健康数据不同，因此应该设置额外的安全防护措施。本研究的目的是从参加以药物遗传学（PGx）为重点的会议的个人中，确定对 PGx 例外主义和遗传信息隐私以及电子健康记录（EHR）管理的看法。在 2020 年 9 月的一次 PGx 会议上，向 370 名与会者分发了一份包含 47 个问题的调查问卷。该调查评估了人口统计学、专业特征、对 PGx 例外主义的看法、遗传法律法规知识以及 EHR 中 PGx 信息的管理。在受邀参加调查的 370 名参与者中，有 30%（n=110）做出了回应。大多数受访者是具有研究生学历的药剂师（76.2%，n=48）。当被问及 PGx 信息是否具有特殊性时，44%的受访者表示同意，而 32%的受访者表示不同意。对 PGx 例外主义的认同与受访者对 PGx 缺乏熟悉度或了解程度最相关。超过三分之二（67%）的人认为，医疗团队的所有成员都应该能够在 EHR 中不受限制地访问患者的 PGx 信息。这项研究发现，在参加 PGx 会议的与会者中，对 PGx 例外主义的看法和 EHR 中 PGx 信息的管理存在不一致。描述 EHR 中 PGx 信息的可访问性的看法对于设计与隐私相关的技术、机构管理政策和法律法规非常重要，因为这一遗传学领域正在越来越多地应用于临床护理，需要建立临床标准。
