Interdisciplinary National Study Investigating Genetics and Health Testing at Work (INSIGHT@Work): Employer Perspectives, United States, 2020-2025 (ICPSR 39645)

Version Date: Mar 12, 2026

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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/ICPSR39645.v1

Version V1

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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-Investigators Debra Mathews and Kayte Spector-Bagdady, examined Aim 1 and the employer perspectives towards workplace genetic testing.

    Citation

    Lee, Charles, and Roberts, J. Scott. Interdisciplinary National Study Investigating Genetics and Health Testing at Work (INSIGHT@Work): Employer Perspectives, United States, 2020-2025. Inter-university Consortium for Political and Social Research [distributor], 2026-03-12. https://doi.org/10.3886/ICPSR39645.v1

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    Funding

    United States Department of Health and Human Services. National Institutes of Health. National Human Genome Research Institute (R01HG010679)

    Subject Terms

    Geographic Coverage

    Distributor(s)

    Inter-university Consortium for Political and Social Research
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    Time Period(s)

    2020 -- 2025

    Data Collection Notes

    1. Additional information about the Interdisciplinary National Study Investigating Genetics and Health Testing at Work (INSIGHT@Work) Study can be found on the study website.

    2. There are no data included in this release. The data depositor confirmed that the only document to be released is the survey instrument.

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    Study Purpose

    The aim of this study was to examine employers' perspectives through a landscape analysis to ascertain the prevalence and distribution of workplace genetic testing (wGT) within workplace wellness programs among US companies.

    Study Design

    The study team used three approaches to explore the prevalence and distribution of wGT programs: (1) analysis of publicly available information; (2) national surveys; and (3) interviews with company representatives.

    Mode of Data Collection

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    Original Release Date

    2026-03-12

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    Notes