Interdisciplinary National Study Investigating Genetics and Health Testing at Work (INSIGHT@Work) Study
Research Team: Charles Lee and J. Scott Roberts (Co-PIs), W. Gregory Feero, Debra Mathews, Anya E.R. Prince, Kayte Spector-Bagdady, Wendy R. Uhlmann, Veda Giri, Amy Leader (CoIs), Kunal Sanghavi, Rebecca Ferber, Nicole Crumpler, Kerry Ryan, Betty Cohn, Alyx Vogle, Elizabeth Charnysh, Katherine Hendy, Sarah McCain, Drew Blasco, and Alexandra Truhlar.
About the Study: The INSIGHT@Work project was a National Human Genome Research Institute (NHGRI) of the National Institutes of Health (NIH)-funded R01 investigating the ethical, legal, social, and policy implications (ELSI) of genetic testing being offered by employers through workplace wellness programs, known as workplace genetic testing (wGT). The study team includes researchers from the University of Michigan, the Jackson Laboratory, the University of Iowa, Maine-Dartmouth Family Residency, Johns Hopkins University, and Jefferson Health, supported by researchers and stakeholders from across the nation. The team has expertise in genomics, medicine, genetic counseling, health law, ELSI research, public health, qualitative research methods, and survey design. This study had three specific aims and a supplement, employing various research methods:
- Aim 1: Examine employers' perspectives through a landscape analysis to ascertain the prevalence and distribution of wGT among U.S. 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 U.S. 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 findings 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.
The study revealed the perspectives of several key stakeholders and the primary benefits, risks, and limitations of workplace genetic testing (wGT). The findings led to the identification of key characteristics and specific design features of wGT that are of importance for relevant stakeholders.
For more information about the study, please visit the INSIGHT@Work website.
About the Data: Data and study materials shared here are organized by study aim. For additional context, review the publications associated with each aim. Data files include study instruments, codebooks, raw de-identified survey data, interview guides, and other materials. The team welcomes communication with anyone who explores the data or adapts study materials for other studies or initiatives. Please contact jscottr@umich.edu for discussion or questions about the materials in this series.
Funding Information: Ethical, Legal, Social, and Policy Implications of Workplace Genomic Testing, National Human Genome Research Institute, grant number R01HG010679.