September 23, 2014
Many fear lack of confidentiality and disclosure regarding 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.
Study Authors: David C. Perlman, Camila Gelpí-Acosta, Samuel R. Friedman, Ashly E. Jordan, Holly Hagan. Correspondence: David C. Perlman, Mount Sinai Beth Israel Health System, New York, NY, USA. (E-mail: firstname.lastname@example.org)
Acknowledgements: This work was supported by the National Institutes of Health grant P30 DA 011041. We gratefully acknowledge the assistance of the participating recruitment sites and all of the participants. Note: The findings and conclusions in the article are those of the authors and do not necessarily represent the views of the National Institute on Drug Abuse or the National Institute of Health.
The mission of the Center for Drug Use and HIV Research (CDUHR) is to end the HIV and HCV epidemics in drug using populations and their communities by conducting transdisciplinary research and disseminating its findings to inform programmatic, policy, and grass roots initiatives at the local, state, national and global levels. CDUHR is a Core Center of Excellence funded by the National Institute on Drug Abuse (Grant #P30 DA011041). It is the first center for the socio-behavioral study of substance use and HIV in the United States and is located at the New York University College of Nursing. For more information, visit www.cduhr.org.
About the Mount Sinai Health System
The Mount Sinai Health System is an integrated health system committed to providing distinguished care, conducting transformative research, and advancing biomedical education. Structured around seven member hospital campuses and a single medical school, the Health System has an extensive ambulatory network and a range of inpatient and outpatient services—from community-based facilities to tertiary and quaternary care.
The System includes approximately 6,600 primary and specialty care physicians, 12-minority-owned free-standing ambulatory surgery centers, over 45 ambulatory practices throughout the five boroughs of New York City, Westchester, and Long Island, as well as 31 affiliated community health centers. Physicians are affiliated with the Icahn School of Medicine at Mount Sinai, which is ranked among the top 20 medical schools both in National Institutes of Health funding and by U.S. News & World Report. For more information, visit http://www.mountsinai.org/
About New York University College of Nursing
NYU College of Nursing is a global leader in nursing education, research, and practice. It offers a Bachelor of Science in Nursing, a Master of Science and Post-Master’s Certificate Programs, a Doctor of Philosophy in Research Theory and Development, and a Doctor of Nursing Practice degree. For more information, visit https://nursing.nyu.edu/
National Development and Research Institutes, Inc. (NDRI) is a non-profit research and educational organization dedicated to advancing scientific knowledge in the areas of drug and alcohol use, treatment and recovery; HIV, AIDS and HCV; therapeutic communities; youth at risk; and related areas of public health, mental health, criminal justice, urban problems, prevention and epidemiology. For more information, visit www.ndri.org
Type: Press Release
Press Contact: Christopher James | (212) 998-6876