Genetic Counselors and Workplace Genomic Testing
Genetic Counselors and Workplace Genomic Testing
批准号:
10614856
负责人:
CHARLES LEE
金额:
$30.9万
依托单位:
依托单位国家:
美国
项目类别:
财政年份:
2020
资助国家:
美国
项目状态:
已结题
起止时间:
2020-09-25 至 2024-08-31
关键词:
AddressAreaBenefits and RisksCardiovascular systemCaringColorCounselingDataDiseaseEducational workshopEmployeeEmployee HealthEthicsFoundationsFundingFutureGeneticGenetic CounselingGenetic PrivacyGenetic RiskGenetic studyGenomicsGoalsHealthHealth BenefitHealth ProfessionalHealthcareIndividualInternetInterviewKnowledgeLawsLegalManuscriptsMedicalMethodsModelingNational Human Genome Research InstituteParentsPatientsPerceptionPoliciesPreventivePrimary Care PhysicianQuantitative GeneticsRecommendationReportingResearch Project GrantsRoleServicesSocietiesStructureSurveysTest ResultTestingTrainingTranslatingVendorWellness ProgramWorkWorkplacecancer riskethical legal social implicationexperiencegenetic analysisgenetic counselorgenetic informationgenetic testingimprovedinstrumentlegal implicationpolicy implicationprogramsrecruitsocial implication
中文摘要
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.
期刊论文(0)
专著(0)
科研奖励(0)
会议论文
Ethical, Legal, Social, and Policy Implications of Workplace Genomic Testing
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Analysis of Patterns of Structural Variation in the 1000 Genomes Data Set
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Analysis of Patterns of Structural Variation in the 1000 Genomes Data Set
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Structural Genomic Variation Analysis for the1000 Genome Project
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Copy number variation in the human genome
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Characterization and Evolution of Copy Number Variation Among Primates
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Characterization and Evolution of Copy Number Variation Among Primates
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Characterization and Evolution of Copy Number Variation Among Primates
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