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中文摘要
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项目总结 通过工作场所健康计划,即工作场所基因组测试(WGT)进行的基因组测试越来越多 由基因组测试供应商提供。据认为,雇主提供的工作场所健康计划 改善员工健康的目标,这些计划可能包括WGT。我们由NHGRI资助的R01是 分析雇主和雇员在这一领域的观点,以评估道德、法律、社会和 提供工作组的政策影响。然而,由于遗传顾问(GC)是医疗保健专业人员,他们 受过解释基因测试结果的培训,并为收到此类结果的个人提供咨询,他们是 也是工作组的关键利益攸关方。事实上,一般控制组预计将处于工作组结果和 员工将这些结果转化为实际的医疗福利,而GC服务通常是 WGT供应商包。由于工作场所是提供基因组测试的一个相对较新的领域,因此有一个 迫切需要审视地方政府的观点。因此,我们建议评估地方选区的经验和意见, 混合方法的方法。 为此,我们团队提出了这一补充研究项目,包括两个目标。在目标1中,我们将 通过与大专学生的访谈,了解曾就WGT向个人提供咨询的大专学生的经历 1)受雇于供应商(n=10),或2)不受雇于工作组供应商(n=10)。在目标2中,我们将调查 GCS通过评估GCS经验的网络调查了解WGT的经验、观点和知识 WGT;2)WGT的认知(包括WGT的感知风险和收益);3)相关咨询 体验(包括WGT的GC可访问性);以及4)了解遗传隐私和员工 保护措施。 影响:这项研究的结果将揭示大中华区目前对WGT的经验和看法,以告知我们 GCs对WGT的ELSI问题的认知以及他们的法律知识差距 适用于工作组的保护。
英文摘要
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.
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Ethical, Legal, Social, and Policy Implications of Workplace Genomic Testing
  • 批准号:
    10477263
  • 项目类别:
  • 资助金额:
    $82.79万
  • 财政年份:
    2020
  • 负责人:
    CHARLES LEE
  • 依托单位:
Ethical, Legal, Social, and Policy Implications of Workplace Genomic Testing
  • 批准号:
    10684009
  • 项目类别:
  • 资助金额:
    $82.12万
  • 财政年份:
    2020
  • 负责人:
    CHARLES LEE
  • 依托单位:
Ethical, Legal, Social, and Policy Implications of Workplace Genomic Testing
  • 批准号:
    10268974
  • 项目类别:
  • 资助金额:
    $82.81万
  • 财政年份:
    2020
  • 负责人:
    CHARLES LEE
  • 依托单位:
Comprehensive Mapping of Long-Range Chromatin Interactions in Humanand Mouse Genomes
  • 批准号:
    10241034
  • 项目类别:
  • 资助金额:
    $194.94万
  • 财政年份:
    2017
  • 负责人:
    CHARLES LEE
  • 依托单位:
国内基金
海外基金
层出镰刀菌氮代谢调控因子AreA 介导伏马菌素 FB1 生物合成的作用机理
  • 批准号:
    2021JJ40433
  • 项目类别:
    省市级项目
  • 资助金额:
    --
  • 批准年份:
    2021
  • 负责人:
    孙磊
  • 依托单位:
寄主诱导梢腐病菌AreA和CYP51基因沉默增强甘蔗抗病性机制解析
  • 批准号:
    32001603
  • 项目类别:
    青年科学基金项目
  • 资助金额:
    24.0万元
  • 批准年份:
    2020
  • 负责人:
    段真珍
  • 依托单位:
AREA国际经济模型的移植.改进和应用
  • 批准号:
    18870435
  • 项目类别:
    面上项目
  • 资助金额:
    2.0万元
  • 批准年份:
    1988
  • 负责人:
    史树中
  • 依托单位: