Many fear lack of confidentiality and disclosure regarding genetic test's purpose

Genomic medicine is rapidly developing, bringing with its advances promises of individualized genetic information to tailor and optimize prevention and treatment interventions. Genetic tests are already guiding treatments of the human immunodeficiency virus (HIV) and hepatitis c virus (HPC), and emerging research is showing genetic variants may be used to screen for an individual's susceptibility to addiction to a substance, and even inform treatments for addiction.

While there appear to be many benefits inherent in the development of this field and related research, there is a lack of data on the attitudes of marginalized populations towards genetic testing. A new study by researchers affiliated with New York University's Center for Drug Use and HIV Research (CDUHR) is the first to present the perceptions of genetic testing among drug users.

Published in the International Journal of Drug Policy, the study, "Perceptions of genetic testing and genomic medicine among drug users," gauged drug users' attitudes and understandings of genetics and genetic testing through six focus groups. The focus groups were segregated by race and ethnicity to increase participants' comfort in talking about racial and ethnic issues. Over half of the participants (53%) reported having either HIV/AIDs or HCV, or a co-infection, and understood the potential value of genetic testing.

The researchers found that the participants had concerns regarding breaches in confidentiality and discrimination which might have reduced their inclination to undergo testing. Participants' mistrust stemmed from concerns of lack of full disclosure of the test's purpose, or that once submitting to the test, their samples may be used for unspecified purposes. Participants were also uncomfortable with race/ethnicity-based genetic testing, and had concerns that a genetic test may adversely affect a drug user by aiding law enforcement.

"Most participants were uncomfortable with engaging in genetic testing for either addiction-related care or for research to understand addiction, because most did not consider addiction to be a genetic disorder," said David Perlman, M.D., Professor of Medicine at Mount Sinai Beth Israel's Icahn School of Medicine and director of Infectious Diseases and Biomedical Core at CDUHR. "All participants were more comfortable understanding genetics as explaining physical traits rather than behavior. They viewed addiction as a behavior resulting from environment and experiences rather than genetic inheritance."

However, despite these concerns, many participants indicated they would feel more positive towards genetic testing were they to believe it could improve their medical care. Additionally, participants indicated they would be more trusting of the test were it to be administered by their primary physicians, rather than drug treatment programs. The results of this study may inform further research and how programs and providers might best approach drug users, and potentially other marginalized populations, for genetic testing when appropriate.