Interdisciplinary National Study Investigating Genetics and Health Testing at Work (INSIGHT@Work): Employee Perspectives, United States, 2020-2025 (ICPSR 39646)
Version Date: Jul 28, 2026 View help for published
Principal Investigator(s): View help for Principal Investigator(s)
Charles Lee, The Jackson Laboratory for Genomic Medicine;
J. Scott Roberts, University of Michigan. School of Public Health
Series:
https://doi.org/10.3886/ICPSR39646.v1
Version V1
Summary View help for Summary
This research was supported by a grant from the National Human Genome Research Institute of the National Institutes of Health (R01HG010679). This project was conducted as part of the multi-aim R01 and led by Charles Lee and J. Scott Roberts. The project explores stakeholders' perspectives on key characteristics for implementation of workplace genetic testing (wGT).
The project had three specific aims and a supplementary aim:
- Aim 1: Examine employers' perspectives through a landscape analysis to ascertain the prevalence and distribution of wGT among US companies
- Aim 2: Investigate employees' views and perceptions of the benefits, risks, and limitations of wGT through (a) a national survey of working adults and (b) a survey of individuals working at a large US healthcare system who were offered wGT by their employer
- Aim 3: Conduct a modified Delphi process with multiple surveys and a deliberative workshop among key stakeholders and distill the finding of Aims 1 and 2 to inform a normative assessment of wGT.
- Supplement: Examine genetic counselors' perspectives on and experiences with wGT using semi-structured interviews and a national survey
This study, led by Co-Principal Investigator J. Scott Roberts and Co-Investigator Wendy Uhlmann, examined Aim 2 and the employee perspectives towards workplace genetic testing.
Citation View help for Citation
Export Citation:
Funding View help for Funding
Subject Terms View help for Subject Terms
Geographic Coverage View help for Geographic Coverage
Smallest Geographic Unit View help for Smallest Geographic Unit
state
Distributor(s) View help for Distributor(s)
Time Period(s) View help for Time Period(s)
Date of Collection View help for Date of Collection
Data Collection Notes View help for Data Collection Notes
-
Additional information about the Interdisciplinary National Study Investigating Genetics and Health Testing at Work (INSIGHT@Work) Study can be found on the study website.
Study Purpose View help for Study Purpose
The aim of this study was to investigate employees' views and perceptions of the benefits, risks, and limitations of wGT through (a) a national survey of working adults and (b) a survey of individuals working at a large US healthcare system who were offered wGT by their employer.
Study Design View help for Study Design
The nationally representative survey included 2000 participants who were recruited and surveyed through the third-party survey firm Dynata.
The large healthcare system survey included 776 participants who were recruited through internal empoloyee communications and digital/print advertisements. The survey was adminsitered through SoundRocket's secure web-based platform.
Time Method View help for Time Method
Universe View help for Universe
Employed adults in the United States (Dataset 1) and individuals working at a large US healthcare system who were offered workplace genetic testing by their employer (Dataset 2).
Unit(s) of Observation View help for Unit(s) of Observation
Data Type(s) View help for Data Type(s)
Mode of Data Collection View help for Mode of Data Collection
Description of Variables View help for Description of Variables
Variables from the Dynata Survey Data (nationally representative survey) include information about: demographics, employment information, perceptions of/interest in wGT, genetic testing experience, genetics knowledge/awareness, health history, and individual characteristics.
Variables in the Jefferson Survey Data (large healthcare system survey) include information about: demographics, employment information, genetic testing decisions and views, and genetic testing results.
HideOriginal Release Date View help for Original Release Date
2026-07-28
Version History View help for Version History
2026-07-28 ICPSR data undergo a confidentiality review and are altered when necessary to limit the risk of disclosure. ICPSR also routinely creates ready-to-go data files along with setups in the major statistical software formats as well as standard codebooks to accompany the data. In addition to these procedures, ICPSR performed the following processing steps for this data collection:
- Created variable labels and/or value labels.
- Checked for undocumented or out-of-range codes.
Notes
These data are freely available to data users at ICPSR member institutions. The curation and dissemination of this study are provided by the institutional members of ICPSR. How do I access ICPSR data if I am not at a member institution?