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多学科利益相关者参与的工作场所基因检测实施关键特征识别

Multidisciplinary stakeholder-informed identification of key characteristics for implementation of workplace genetic testing.

作者信息

Charnysh Elizabeth, Sanghavi Kunal, Ryan Kerry A, Vogle Alyx, Truhlar Alexandra, Pal Subhamoy, Reader Jonathan M, Roberts J Scott, Lee Charles, Prince Anya E R, Feero W Gregory

机构信息

The Jackson Laboratory for Genomic Medicine, Farmington, CT, USA.

The Jackson Laboratory for Genomic Medicine, Farmington, CT, USA.

出版信息

HGG Adv. 2025 May 22;6(3):100458. doi: 10.1016/j.xhgg.2025.100458.

Abstract

Workplace genetic testing (wGT) is an evolving model for genetic testing where employees are offered consumer genetic testing through employer-sponsored wellness programs. However, the potential harms, benefits, and key characteristics for best implementation practices for wGT have yet to be defined. To address this issue, we conducted a three-round modified Delphi process, including multiple rounds of survey and a virtual deliberative workshop, with purposely chosen wGT stakeholders (employees, employers, ethical, legal, and social implications [ELSI] professionals, genetic testing industry representatives, and healthcare professionals) to share their perspectives. From the modified Delphi process, we identified 12 key characteristics for the implementation of wGT that were perceived to increase the potential for benefit while reducing the risk of potential harms. Most participants agreed that privacy/security, voluntariness, transparency, understanding and education, anti-discrimination, employee control, and evidence-based testing measures were both important (>90%) and necessary (>75%) for the implementation of wGT. However, some participants also expressed a lack of confidence in the likelihood of achieving these characteristics in wGT programs. Overall, stakeholders expressed qualified support for wGT at the conclusion of the modified Delphi process. Their perspectives on the topic varied over the course of the process and were at least partially contingent on whether the aforementioned 12 key characteristics were met. These findings help inform the establishment of a normative framework for wGT assessment.

摘要

职场基因检测(wGT)是一种不断发展的基因检测模式,通过雇主赞助的健康计划为员工提供消费级基因检测。然而,wGT的潜在危害、益处以及最佳实施实践的关键特征尚未明确。为解决这一问题,我们开展了三轮改进的德尔菲法流程,包括多轮调查和一次虚拟审议研讨会,邀请了特意挑选的wGT利益相关者(员工、雇主、伦理、法律和社会影响[ELSI]专业人士、基因检测行业代表以及医疗保健专业人员)分享他们的观点。通过改进的德尔菲法流程,我们确定了wGT实施的12个关键特征,这些特征被认为能够增加受益潜力,同时降低潜在危害风险。大多数参与者一致认为,隐私/安全、自愿性、透明度、理解与教育、反歧视、员工控制权以及基于证据的检测措施对于wGT的实施既重要(>90%)又必要(>75%)。然而,一些参与者也表示对wGT项目实现这些特征的可能性缺乏信心。总体而言,在改进的德尔菲法流程结束时,利益相关者对wGT表示有保留的支持。他们在这一过程中的观点有所变化,并且至少部分取决于上述12个关键特征是否得到满足。这些发现有助于为wGT评估建立一个规范框架。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/568f/12169765/70bc09fe8069/gr1.jpg

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