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.

项目概要 美国有超过 1.57 亿人通过雇主健康计划获得医疗保险。在 在某些情况下，雇主通过此类健康计划提供自愿工作场所基因组测试（WGT）。 事实上，越来越多的雇主正在考虑为其雇员提供此类服务。然而， wGT 引起了重大的法律和政策问题，包括遗传信息的隐私。鉴于预期 由于 wGT 未来将变得更加普遍，因此迫切需要了解其好处和风险。 因此，我们建议使用混合方法评估 wGT 的伦理、法律、社会和政策影响 方法并让多个利益相关者参与研究的不同阶段。 我们组建了一个由国家专家组成的跨学科团队来研究以下内容： 1) 通过以下方式检查雇主对工作转移的看法： a) 景观分析以确定普遍性和 wGT 在美国公司之间的分布； b) 对一系列关键管理人员进行半结构化访谈 提供或拒绝提供 wGT 的公司以确定雇主的动机、挑战和 实施 wGT 的明显好处。 2) 通过以下方式调查员工对 wGT 的看法和反应： a) 对就业成年人进行全国网络调查 评估他们对 wGT 的态度和信念； b) wGT 接受者的基线网络调查 (n=500) 和 拒绝者 (n=500) 与大型医疗保健系统合作，评估对收益、风险和风险的看法 wGT 的局限性； c) 对 wGT 接受者进行后续网络调查，以检查其心理、行为和 wGT 的经济影响。 3) 采用多种方法相结合，包括召开深思熟虑的研讨会和改进的德尔菲流程来提炼 目标 1 和 2 的结果，最终产生基于经验的 wGT 规范评估。我们将 吸引广泛的利益相关者，包括雇主、雇员、劳工和商业组织，以及 政策制定者了解 wGT 的潜在危害和益处。 影响：本研究的结果将揭示行业中的突出问题和利益相关者的观点 基因组测试的待研究领域，并确定关键的伦理、法律、社会和政策考虑因素 雇员和雇主，并就 wGT 的实施和治理提出实践和政策选择。

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