Genetic Counselors and Workplace Genomic Testing

遗传咨询师和工作场所基因组测试

• 批准号: 10614856
• 负责人: CHARLES LEE
• 金额: $ 30.9万
• 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/10614856
• 关键词: Address; Area; Benefits and Risks; Cardiovascular system; Caring; Color; Counseling; Data; Disease; Educational workshop; Employee; Employee Health; Ethics; Foundations; Funding; Future; Genetic; Genetic Counseling; Genetic Privacy; Genetic Risk; Genetic study; Genomics; Goals; Health; Health Benefit; Health Professional; Healthcare; Individual; Internet; Interview; Knowledge; Laws; Legal; Manuscripts; Medical; Methods; Modeling; National Human Genome Research Institute; Parents; Patients; Perception; Policies; Preventive; Primary Care Physician; Quantitative Genetics; Recommendation; Reporting; Research Project Grants; Role; Services; Societies; Structure; Surveys; Test Result; Testing; Training; Translating; Vendor; Wellness Program; Work; Workplace; cancer risk; ethical legal social implication; experience; genetic analysis; genetic counselor; genetic information; genetic testing; improved; instrument; legal implication; policy implication; programs; recruit; social implication

PROJECT SUMMARY Genomic testing through workplace wellness programs, i.e., workplace genomic testing (wGT), is increasingly being offered by genomic testing vendors. Employers are thought to offer workplace wellness programs with the goal of improving employee health, and these programs may include wGT. Our NHGRI-funded R01 is analyzing the perspectives of employers and employees in this sphere to assess the ethical, legal, social, and policy implications of offering wGT. However, as genetic counselors (GCs) are healthcare professionals who are trained to interpret genetic test results and counsel individuals who have received such results, they are also key stakeholders in wGT. Indeed, GCs are anticipated to be at the interface between the wGT results and an employee's translating those results into practical healthcare benefits, and GC services are often part of wGT vendor packages. As the workplace is a relatively new area for offering genomic testing, there is an urgent need to examine GCs' perspectives. Thus, we propose to assess GCs' experiences and views using a mixed-methods approach. Toward this end, our team proposes this supplemental research project comprising two Aims. In Aim 1, we will ascertain the experiences of GCs who have counseled individuals on wGT through interviews with GCs either 1) employed by a vendor (n=10), or 2) not employed by a wGT vendor (n=10). In Aim 2, we will investigate GCs' experiences, views, and knowledge regarding wGT through a web survey assessing GCs' 1) experiences with wGT; 2) perceptions of wGT (including perceived risks and benefits of wGT); 3) related counseling experiences (including accessibility of GCs for wGT); and 4) understanding of genetic privacy and employee protections. Impact: The results from this study will reveal GCs' current experiences and views on wGT to inform our understanding of GCs' perceptions of ELSI issues of wGT in addition to their knowledge gaps of legal protections applicable to wGT.

项目摘要 通过工作场所健康计划，即工作场所基因组测试（WGT）进行基因组测试，越来越多 由基因组测试供应商提供。人们认为雇主会提供工作场所健康计划 改善员工健康的目标，这些计划可能包括WGT。我们的NHGRI资助的R01是 分析该领域雇主和雇员的观点，以评估道德，法律，社会和 提供WGT的政策影响。但是，作为遗传咨询师（GCS）是医疗保健专业人员 经过培训以解释基因测试结果和咨询获得此类结果的个人，他们是 也是WGT中的主要利益相关者。实际上，预计GC将处于WGT结果和 员工将这些结果转化为实际的医疗保健福利，GC服务通常是 WGT供应商软件包。由于工作场所是提供基因组测试的相对较新的领域，因此有一个 迫切需要检查GC的观点。因此，我们建议使用 混合方法方法。 为此，我们的团队提出了这个补充研究项目，其中包括两个目标。在AIM 1中，我们将 确定通过与GCS的访谈向个人咨询个人的GC的经验 1）由供应商（n = 10）或2）不使用WGT供应商（n = 10）使用。在AIM 2中，我们将调查 通过评估GCS的网络调查，GCS的经验，观点和知识'1）经验 与WGT； 2）对WGT的看法（包括WGT的风险和收益）； 3）相关咨询 经验（包括WGT的GC的可及性）； 4）了解遗传隐私和员工 保护。 影响：这项研究的结果将揭示GCS对WGT的当前经验和观点，以告知我们 了解GCS对WGT的ELSI问题的看法除了其法律知识差距 适用于WGT的保护措施。