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。
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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会议论文
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