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进行基因组检测，即，工作场所基因组检测（wGT），越来越多地 基因组检测供应商提供的。雇主被认为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R 01 分析雇主和雇员在这一领域的观点，以评估道德，法律的，社会和 提供wGT的政策含义。然而，由于遗传咨询师（GC）是医疗保健专业人员， 接受过解释基因检测结果的培训，并为收到此类结果的个人提供咨询， 也是wGT的关键利益相关者。事实上，GC预计将处于wGT结果和 员工将这些结果转化为实际的医疗福利，GC服务通常是 wGT供应商包。由于工作场所是提供基因组检测的相对较新的领域， 迫切需要审查GC的观点。因此，我们建议采用 混合方法。 为此，我们的团队提出了这个补充研究项目，包括两个目标。在目标1中，我们 通过与GCs的访谈，确定曾就wGT向个人提供咨询的GCs的经验， 1)被供应商雇用（n=10），或2）未被wGT供应商雇用（n=10）。在目标2中，我们将研究 通过网络调查评估全球理事会的经验， wGT的认知（包括wGT的风险和益处）; 3）相关咨询 经验（包括wGT的GC可访问性）;以及4）了解遗传隐私和员工 保护。 影响：这项研究的结果将揭示GC目前的经验和对wGT的看法， 除了他们在法律的知识方面的差距外，了解GC对wGT的ELSI问题的看法 适用于WGT的保护。