Supplementary Material for: Workplace genomic testing: What do company websites say about federal privacy and anti-discrimination laws?

Introduction: Employees considering participation in workplace genetic and/or genomic testing (wGT) as part of workplace wellness programs should be aware of legal protections of their personal genetic information. Given the relevance of the Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA) for informed decision making, employers offering wGT should ideally inform employees of these health policies prior to collecting any genetic data. It is unclear, however, whether and to what extent such information is being provided. Company websites provide one important resource for making employees—and the public at large—aware of important health policies governing workplace wellness programs in general, and wGT services in particular. Method: We systematically reviewed the websites of 420 companies (including 140 privately-held companies from the 2019 Forbes list of largest privately-held companies, 140 publicly-held companies from the 2019 Forbes list of largest publicly-held companies, 104 hospitals/hospital systems, and 36 companies that had evidence that they offer/have offered wGT) offering wGT services to determine if they included reference to HIPAA and GINA. Results: Our search for wGT programs on company websites found that 50 of 420 companies had evidence of offering wGT. We found 32/50 (64%) mentions of HIPAA and no mentions of GINA. Conclusions: It is imperative that HIPAA and GINA are upheld by both vendors and employers. Accessible and understandable information on these policies is needed for employees to analyze the benefits and risks of participating in wGT.

引言：考虑将职场基因及/或基因组检测（workplace genetic and/or genomic testing, wGT）纳入职场健康计划的雇员，应当知晓其个人遗传信息所受的法律保护。鉴于《健康保险流通与责任法案》（Health Insurance Portability and Accountability Act, HIPAA）与《基因信息非歧视法案》（Genetic Information Nondiscrimination Act, GINA）对知情决策的重要意义，提供职场基因检测服务的雇主应在收集任何遗传数据前，优先向雇员告知此类健康政策。然而目前尚不清楚，此类信息是否得到了提供，以及在多大程度上得到了提供。公司官网是让雇员乃至广大公众了解一般职场健康计划、特别是职场基因检测服务相关重要健康政策的重要渠道之一。
方法：我们系统性检视了420家提供职场基因检测服务的公司的官网，其中包括2019年《福布斯》最大私营企业榜单中的140家私营企业、2019年《福布斯》最大上市企业榜单中的140家上市企业、104家医院/医院系统，以及36家有证据表明已提供或曾提供职场基因检测服务的公司，以核查其官网是否提及HIPAA与GINA。
结果：我们在公司官网中检索职场基因检测项目时发现，420家企业中有50家被证实提供职场基因检测服务。其中32家（占比64%）提及了HIPAA，但未提及任何与GINA相关的内容。
结论：供应商与雇主均须严格恪守HIPAA与GINA的相关规定。雇员若要分析参与职场基因检测的收益与风险，亟需获取清晰易懂的相关政策信息。