Perceptions of genetic testing and genomic medicine among urban drug users

Introduction: Genomic medicine may potentially improve health care. Genetic testing (GT) will soon enter care for HIV, HCV, and addiction. We explored New York City DUs' perceptions of GT and genomic medicine.

Methods: Six focus groups (FGs) were conducted with active DUs recruited from syringe exchanges and an HIV clinic. Individual interviews were conducted with 3 FG participants who reported previous GT and with 6 young illicit prescription opioids users.

Results: Of 40 participants, 50% were female; 10 Black, 14 Hispanic and 16 white; average age 43 years. Most had some awareness of GT, with television, prison and paternity testing the main sources of awareness. Some reported GT while in prison. All participants expressed support for GT if it improved treatment, but most had concerns regarding confidentiality and stigma Many were dubious about race-based GT/treatment (“race pills”) not understanding why efficacious treatments might not work for all groups (“we are all humans”); most expressed more comfort with treatments based on individual level GT vs. inferring outcomes based on race/ethnicity. Participants were generally more comfortable with GT in medical care than in drug treatment, citing disbelief that addiction is genetically based. GT-experienced peers were identified as important sources of trust in GT.

Conclusions: Although these DUs had a general sense of the potential value of genetic testing, concerns regarding breaches in confidentiality, stigma, and discrimination may reduce willingness to be tested. Safeguards against these risks, and peer outreach, may be critical in efforts to increase GT among DUs.