Interdisciplinary National Study Investigating Genetics & Health Testing at Work (INSIGHT@Work) Study

For more information, visit the study website at: https://insightatwork.org/

Background

Direct-to-consumer (DTC) genetic and genomic testing services have sky-rocketed in popularity, and employers are taking note. We are beginning to see employers offering genetic or genomic testing services within their wellness packages; yet, the research behind voluntary workplace genetic testing (wGT) is minimal. Our team is here to change that. We are utilizing a comprehensive, multi-step approach of quantitative and qualitative analysis (including surveys and interviews) to gather employee and employer perspectives, as well as workshops with stakeholders to illuminate what our findings mean for policy changes and the future of wGT.

Aims

The study aims to: (1) Examine the factors driving employers’ decisions whether or not to offer wGT, (2) Examine how employees view and respond to wGT, and (3) Assess the ethical, legal, and social implications (ELSI) of wGT from multiple stakeholder perspectives.

Funding Source

The INSIGHT@Work study is funded by an R01 grant (HG010679) from the National Human Genome Research Institute (NHGRI) within the National Institutes of Health (NIH).

Key Personnel

Scott Roberts, PhD, Site Principal Investigator; Multiple Principal Investigator

Kayte Spector-Bagdady, PhD, Co-Investigator

Wendy Uhlmann, MS, CGC, Co-Investigator

Rebecca Ferber, MPH, Site Project Manager

Sarah McCain, MPH, U-M Project Manager

Publications

Willard L, Uhlmann W, Prince AER, Blasco D, Pal S, Roberts JS, for the INSIGHT @ Work Consortium. The Genetic Information Nondiscrimination Act and Workplace Genetic Testing: Knowledge and Perceptions of Employed Adults in the United States. Journal of Genetic Counseling. 2024;00:1-9.

Charnysh E, Pal S, Reader JM, Uhlmann WR, McCain S, Sanghavi K, Blasco D, Brandt R, Feero WG, Ferber R, Giri VN, Hendy K, Prince AER, Lee C, Roberts JS. Health Care Utilization and Behavior Changes After Workplace Genetic Testing at a Large US Health Care System. Genetics in Medicine. 2024;36(8):101160.

Cohn B, Ryan KA, Hendy K, Callahan K, Roberts JS, Spector-Bagdady K, Mathews DJH. Genomic Testing in Voluntary Workplace Wellness Programs in the US: Evidence and Challenges. Molecular Genetics & Genomic Medicine. 2023;11:e2245.

Sanghavi K, Cohn B, Prince AER, Feero WG, Ryan KA, Spector-Bagdady K, Uhlmann WR, Lee C, Roberts JS, Mathews DJH. Voluntary Workplace Genomic Testing: Wellness Benefit or Pandora’s Box? NPJ Genomic Medicine. 2022;7(1):5.

Sanghavi K, Feero WG, Mathews DJH, Prince AER, Price LL, Liu ET, Brothers KB, Roberts JS, Lee C. Employees’ Views and Ethical, Legal, and Social Implications Assessment of Voluntary Workplace Genomic Testing. Frontiers in Genetics. 2021;12:643304.