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

IF 3.3 Q2 GENETICS & HEREDITY
Elizabeth Charnysh, Kunal Sanghavi, Kerry A Ryan, Alyx Vogle, Alexandra Truhlar, Subhamoy Pal, Jonathan M Reader, J Scott Roberts, Charles Lee, Anya E R Prince, W Gregory Feero
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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.

多学科利益相关者知情的关键特征的识别,以实施工作场所基因检测。
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,为员工提供消费者基因检测。然而,wGT最佳实施实践的潜在危害、益处和关键特征尚未确定。为了解决这个问题,我们进行了三轮改进的德尔菲过程,包括多轮调查和虚拟审议研讨会,有针对性地选择了wGT利益相关者[雇员、雇主、道德、法律和社会影响(ELSI)专业人员、基因检测行业代表和医疗保健专业人员]来分享他们的观点。从改进的德尔菲过程中,我们确定了实施wGT的12个关键特征,这些特征被认为可以增加潜在的利益,同时降低潜在危害的风险。大多数与会者认为,隐私/安全、自愿性、透明度、理解和教育、反歧视、员工控制和循证测试措施对于实施wGT既重要(>90%)又必要(>75%)。然而,一些参与者也表示对在wGT项目中实现这些特征的可能性缺乏信心。总体而言,利益相关者在修改后的德尔菲过程结束时对wGT表示了有条件的支持。在整个过程中,他们对这个主题的看法各不相同,至少部分取决于上述12个关键特征是否得到满足。这些发现有助于为建立一个评估wGT的规范性框架提供信息。
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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来源期刊
HGG Advances
HGG Advances Biochemistry, Genetics and Molecular Biology-Molecular Medicine
CiteScore
4.30
自引率
4.50%
发文量
69
审稿时长
14 weeks
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