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

项目摘要 在美国，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的工作场所基因组检测。 事实上，越来越多的雇主正考虑为雇员提供这类服务。然而，在这方面， 工作组提出了重大的法律的和政策问题，包括遗传信息的隐私问题。考虑到 wGT在未来将变得更加普遍，因此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wGT的伦理，法律的，社会和政策影响 在研究的不同阶段采用不同的方法并让多个利益攸关方参与。 我们组建了一个由国家专家组成的跨学科小组，研究以下问题： 1)通过以下方式审查雇主对wGT的看法：a）进行景观分析，以确定wGT的普遍性， wGT在美国公司中的分布;以及B）对一系列公司的主要高管进行半结构化访谈。 提供或拒绝提供wGT的公司，以确定雇主的动机，挑战， 实施wGT的预期效益。 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）对wGT接受者（n=500）和 下降者（n=500）与大型医疗保健系统合作，评估对获益、风险和 wGT的局限性;以及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)采用多种方法的组合，包括研讨会和改进的德尔菲过程，以提取 目标1和2的研究结果，最终得出一个经验性的wGT规范性评估。我们将 让广泛的利益相关者参与，包括雇主、雇员、劳工和商业组织，以及 政策制定者关于wGT的潜在危害和益处。 影响：这项研究的结果将揭示一个国家的突出问题和利益相关者的观点。 基因组检测的未充分研究领域，并确定关键的伦理，法律的，社会和政策考虑因素， 工作组的报告，并就工作组的实施和治理提出了做法和政策选择。

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.