Genetic counselors' perspectives and experiences with workplace genetic testing: Results of a national survey

Abstract

Purpose: Workplace genetic testing (wGT) is a wellness benefit offered to employees, providing a new access point for genetic testing. Although genetic counseling is not typically required in wGT, genetic counselors (GCs) play a key role in integrating genetic testing into health care and may interact with wGT in industry, laboratory, or clinical settings.

Methods: To ascertain US GCs' perspectives and experiences with wGT, we administered a web-based survey, targeting GCs most likely to have professional experience with wGT. Descriptive statistics were used to characterize responses.

Results: Of n = 331 participants (mean age = 36, >80% White female), 27.0% reported having professional experience with wGT. Over half (62.4%) were open to providing counseling on wGT. Most (92.7%) expected wGT to increase genetic testing access, especially for those not meeting clinical criteria (94.8%), but 59.4% expected wGT to increase genetic discrimination. The majority (69.2%) agreed employers should be permitted to offer wGT but disagreed with employers selling (90.9%) and accessing (68.3%) employees' aggregate data.

Conclusion: GC participants demonstrated qualified support for wGT and favored limited employer access to, and use of, employees' wGT data. As genetic testing avenues expand, these findings can inform the effective implementation of wGT and testing in nonclinical settings.

Keywords: Direct-to-consumer genetic testing (DTC-GT); ELSI; Genetic counseling; Genetic counselors; Workplace genetic testing (wGT).

Figure 1

Perceptions of workplace genetic testing (wGT) (N = 331).