Ethical, Legal, Social, and Policy Implications of Workplace Genomic Testing

工作场所基因组测试的伦理、法律、社会和政策影响

• 批准号: 10684009
• 负责人: CHARLES LEE
• 金额: $ 82.12万
• 依托单位: JACKSON LABORATORY
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-25 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10684009
• 关键词: Address; Adult; Area; Attitude; Automobile Driving; Behavioral; Belief; Benefits and Risks; Businesses; Decision Making; Discrimination; Disease; Educational workshop; Employee; Ethics; Exhibits; Future; Genetic Privacy; Genetic Risk; Genomics; Health; Health Professional; Healthcare; Healthcare Systems; Individual; Insurance; Internet; Interview; Legal; Literature; Medical; Methods; Motivation; Perception; Persons; Policies; Policy Maker; Population; Population Heterogeneity; Prevalence; Preventive; Preventive Medicine; Privacy; Process; Professional Organizations; Research; Risk; Sales; Sampling; Service delivery model; Services; Structure; Surveys; Symptoms; Testing; Time; Wellness Program; Workplace; biobank; economic impact; ethical, legal, and social implication; expectation; follow-up; genetic information; genetic testing; health plan; improved; legal implication; policy implication; precision medicine; programs; psychologic; psychosocial; response; social implication; stakeholder perspectives; web site

PROJECT SUMMARY More than 157 million people in the US receive their healthcare insurance through employer health plans. In some cases, employers are offering voluntary workplace genomic testing (wGT) through such health plans. Indeed, a growing number of employers are considering offering such services to their employees. However, wGT raises substantial legal and policy concerns including privacy of genetic information. Given the expectation that wGT will become more prevalent in the future, there is an urgent need to understand its benefits and risks. Thus, we propose to assess the ethical, legal, social, and policy implications of wGT using a mixed-methods approach and engaging multiple stakeholders at different stages of the study. We have assembled an interdisciplinary team of national experts to study the following: 1) Examine employers' perspectives on wGT through: a) Landscape analysis to ascertain the prevalence and distribution of wGT among US companies; and b) Semi-structured interviews of key executives of a range of companies who are offering or declined to offer wGT to identify employers' motivations, challenges, and perceived benefits of implementing wGT. 2) Investigate employees' views on and response to wGT through a: a) National web-survey of employed adults to assess their attitudes and beliefs about wGT; b) Baseline web-survey of both wGT takers (n=500) and decliners (n=500) in partnership with a large healthcare system to assess perceptions of the benefits, risks, and limitations of wGT; and c) Follow-up web-survey of wGT takers to examine the psychological, behavioral, and economic impact of wGT. 3) Employ a combination of approaches, including a deliberative workshop and modified Delphi process to distill the findings of Aim 1 and 2, ultimately yielding an empirically informed normative assessment of wGT. We will engage a broad set of stakeholders including employers, employees, labor and business organizations, and policy makers regarding potential harms and benefits of wGT. Impact: The findings from this study will reveal the prominent issues and stakeholder perspectives in an understudied area of genomic testing and identify key ethical, legal, social, and policy considerations for employees and employers, and suggest practice and policy options for implementation and governance of wGT.

项目总结 在美国，超过1.57亿人通过雇主健康计划获得医疗保险。在……里面 在某些情况下，雇主通过这样的健康计划提供自愿的工作场所基因组测试(WGT)。 事实上，越来越多的雇主正在考虑向员工提供此类服务。然而， 工作组提出了大量的法律和政策问题，包括遗传信息的隐私。考虑到人们的期望 鉴于工作组将在未来变得更加普遍，迫切需要了解其益处和风险。 因此，我们建议使用混合方法来评估工作组的伦理、法律、社会和政策影响。 在研究的不同阶段采取不同的方法，并让多个利益攸关方参与进来。 我们组建了一个由国家专家组成的跨学科小组，以研究以下问题： 1)通过以下方式审查雇主对WGT的看法：a)环境分析，以确定普遍和 WGT在美国公司中的分配；以及b)对一系列关键高管的半结构化访谈 提供或拒绝提供WGT的公司，以确定雇主的动机、挑战和 认识到实施工作组的好处。 2)通过以下方式调查员工对WGT的看法和反应：a)对在职成年人进行全国网络调查 评估他们对WGT的态度和信念；b)对WGT参与者(n=500)和 下跌者(n=500)与大型医疗保健系统合作，评估对收益、风险和 WGT的局限性；以及c)WGT受试者的后续网络调查，以检查心理、行为和 工作组的经济影响。 3)采用多种方法相结合的方法，包括审议研讨会和改进的德尔菲流程 目标1和目标2的调查结果，最终产生了对工作组的经验性规范评估。我们会 吸引广泛的利益相关者，包括雇主、员工、劳工和商业组织，以及 关于工作组的潜在危害和好处的政策制定者。 影响：本研究的结果将揭示突出的问题和利益相关者的观点 研究不足的基因组测试领域，并确定关键的伦理、法律、社会和政策考虑因素 雇员和雇主，并为工作组的实施和治理提供实践和政策选择建议。

项目成果

Voluntary workplace genomic testing: wellness benefit or Pandora's box?

• DOI: 10.1038/s41525-021-00276-8
• 发表时间: 2022-01-20
• 期刊: NPJ genomic medicine
• 影响因子: 5.3
• 作者: Sanghavi K;Cohn B;Prince AER;Feero WG;Ryan KA;Spector-Bagdady K;Uhlmann WR;Lee C;Roberts JS;Mathews DJH
• 通讯作者: Mathews DJH