Interdisciplinary National Study Investigating Genetics and Health Testing at Work (INSIGHT@Work): Modified Delphi Process, United States, 2020-2025 (ICPSR 39647)
Version Date: Apr 9, 2026 View help for published
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Charles Lee, The Jackson Laboratory for Genomic Medicine;
J. Scott Roberts, University of Michigan. School of Public Health
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https://doi.org/10.3886/ICPSR39647.v1
Version V1
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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-Investigators Greg Feero and Anya E.R. Prince, examined Aim 3.
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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 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 workplace genetic testing (wGT).
Study Design View help for Study Design
The study team conducted a three-round modified Delphi process, including multiple rounds of survey and a virtual deliberative workshop, with purposely chosen workplace genetic testing (wGT) stakeholders (employees, employers, ethical, legal, and social implications [ELSI] professionals, genetic testing industry representatives, and healthcare professionals) to share their perspectives.
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A Likert-type scale was used.
HideOriginal Release Date View help for Original Release Date
2026-04-09
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2026-04-09 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.
- Performed recodes and/or calculated derived variables.
- Checked for undocumented or out-of-range codes.
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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?