Workplace perk or pitfall? A qualitative study of genetic counselors' perspectives and experiences with workplace genetic testing

Abstract

Some employers offer genetic testing for increased cancer and cardiovascular disease risk, as well as pharmacogenetic variants, as a wellness benefit, which presents unique considerations for genetic counseling. Our ethical, legal, and social implications (ELSI) of genomics study, positioned in a post-positivist paradigm, aimed to qualitatively assess the perspectives and experiences of genetic counselors (GCs) who had counseled on workplace genetic testing (wGT). Semi-structured interviews were conducted with 18 US GCs who either worked in the wGT industry (i.e., role-directed wGT experience) or provided post-test counseling in a clinical setting (i.e., patient-directed wGT experience). Interviews were analyzed following the principles of codebook thematic analysis using a codebook developed from key domains from the interview guide and emergent themes that were identified during data collection. De-identified transcripts were double-coded. Both role-directed and patient-directed GCs recognized the potential benefits of wGT such as increasing access to genetic services and thereby improving health outcomes. However, patient-directed GCs had more concerns about the lack of access to follow-up care and increasing healthcare disparities. Role-directed GCs were generally more supportive of wGT and were more likely to endorse the benefits. Overall, both role- and patient-directed GCs emphasized the need for guardrails, particularly adequate pre- and post-test education, to mitigate potential harms of wGT, such as lack of informed decision-making, psychological distress, false reassurance, and decisional regret. GCs spontaneously drew parallels between wGT and population genomic screening efforts, noting that wGT similarly attempts to increase access to genetic testing for the general population. GCs' perspectives on strategies to maximize the benefits and minimize the harms of wGT may inform ELSI considerations when developing population genomic screening efforts and other programs that aim to expand access to genetic testing for the general population.

Keywords: consumer genetics; genetic counseling; genetic testing; population screening; qualitative research; workplace wellness programs.

FIGURE 1

“Guardrails” on the “Road” of Workplace Genetic Testing (wGT). Genetic counselors (GCs) described guardrails to maximize the benefits and minimize the harms of wGT.