Self-Reported Genetic Discrimination: Experiences from a Large National Sample of Working Adults

As access to genetic testing outside clinical settings [e.g., direct-to-consumer, workplace genetic testing (wGT)] increases, genetic discrimination (GD) concerns persist.

A sample of 2,000 working adults, representing various occupations and employment sectors, was surveyed about their perspectives on and experiences with wGT, including GD. A multivariable logistic regression was conducted to examine respondent characteristics associated with self-reported GD.

Overall, 14% of respondents (n=279) indicated they experienced GD: 47.3% in healthcare/medicine, 45.5% in employment/workplace, 32.6% in insurance, 21.9% in social relationships, and 19.7% in their family. Increased likelihood of reporting GD was associated with younger age (18-34: aOR=3.10; 35-54: aOR=1.99), identifying as Black, non-Hispanic (aOR=1.67), Hispanic/Latino (aOR=1.74), having a personal history of disease (e.g., cancer, heart disease) (aOR=1.99), prior genetic testing (aOR=2.50), prior wGT (aOR=5.08), being offered wGT even if not participating (aOR=2.20), and awareness of genetic antidiscrimination laws (aOR=4.96) (all p<0.05).

Many respondents self-reported GD experiences, most commonly among certain racial/ethnic groups and those with a history of genetic testing and common diseases. As self-reports do not necessarily constitute legally recognizable GD instances, research and education should further examine such experiences. Education on genetic antidiscrimination protections, including information about what GD entails, existing policies, and limitations, should be a target for medical providers (e.g., genetic counselors) and employers who may offer wGT.