Cohn Betty, Prince Anya E R, Callahan Katherine, Roberts J Scott, Vogle Alyx, Mathews Debra J H
Institute for Public Health Genetics, University of Washington, Seattle, Washington, USA,
College of Law, University of Iowa, Iowa City, Iowa, USA.
Public Health Genomics. 2025;28(1):190-195. doi: 10.1159/000546189. Epub 2025 May 3.
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.
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.
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.
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.
考虑参与将职场基因和/或基因组检测（wGT）作为职场健康计划一部分的员工，应了解其个人基因信息的法律保护。鉴于《健康保险流通与责任法案》（HIPAA）和《基因信息非歧视法案》（GINA）对知情决策的相关性，提供wGT的雇主理想情况下应在收集任何基因数据之前，将这些健康政策告知员工。然而，目前尚不清楚此类信息是否以及在何种程度上得到了提供。公司网站是让员工以及广大公众了解一般适用于职场健康计划，特别是wGT服务的重要健康政策的一个重要资源。
我们系统地审查了420家提供wGT服务的公司的网站（包括2019年《福布斯》最大私营公司榜单中的140家私营公司、2019年《福布斯》最大上市公司榜单中的140家上市公司、104家医院/医院系统，以及36家有证据表明提供过/正在提供wGT的公司），以确定它们是否提及了HIPAA和GINA。
我们在公司网站上搜索wGT计划时发现，420家公司中有50家有提供wGT的证据。我们发现其中32/50（64%）提到了HIPAA，没有提到GINA。
供应商和雇主都必须遵守HIPAA和GINA。员工需要获取关于这些政策的易懂信息，以便分析参与wGT的利弊。
