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.

项目摘要 美国有超过1.57亿人通过雇主健康计划获得其医疗保险。在 在某些情况下，雇主正在通过此类健康计划提供自愿的工作场所基因组测试（WGT）。 确实，越来越多的雇主正在考虑向雇员提供此类服务。然而， WGT提出了重大的法律和政策问题，包括遗传信息的隐私。考虑到期望 WGT将来会变得更加普遍，迫切需要了解其利益和风险。 因此，我们建议使用混合方法来评估WGT的道德，法律，社会和政策影响 在研究的不同阶段接近并吸引多个利益相关者。 我们已经组建了一个跨学科的国家专家团队来研究以下内容： 1）通过以下方式检查雇主对WGT的观点：a）景观分析以确定患病率和 美国公司中WGT的分配； b）一系列关键主管的半结构化访谈 提供或拒绝提供WGT的公司来确定雇主的动机，挑战和 实施WGT的感知好处。 2）调查员工对WGT的看法和通过a：a）成人的国家网络调查 评估他们对WGT的态度和信念； b）两个WGT接受者的基线网络调查（n = 500）和 与大型医疗保健系统合作，拒绝者（n = 500），以评估对利益，风险和 WGT的局限性； c）WGT接受者的后续网络调查，以检查心理，行为和 WGT的经济影响。 3）采用多种方法，包括审议的研讨会和修改后的Delphi过程来提炼 AIM 1和2的发现最终得出了对WGT的经验知情的规范评估。我们将 参与包括雇主，雇员，劳动和商业组织在内的广泛利益相关者，以及 关于WGT的潜在危害和益处的政策制定者。 影响：这项研究的发现将揭示一个重要的问题和利益相关者的观点 基因组测试的研究领域，并确定关键的道德，法律，社会和政策考虑因素 雇员和雇主，并提出了WGT实施和治理的实践和政策选择。

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