David C Perlman1, Camila Gelpí-Acosta2, Samuel R Friedman2, Ashly E Jordan3, Holly Hagan3. 1. Mount Sinai Beth Israel, 120 East 16th Street, Floor 12, New York, NY 10003, USA. Electronic address: dperlman@chpnet.org. 2. National Research and Development Institutes, Inc, 71 West 23rd Street, Floor 8, New York, NY 10010, USA. 3. New York University College of Nursing, 726 Broadway, Floor 10, New York, NY 10003, USA.
Abstract
BACKGROUND: Genetic testing will soon enter care for human immunodeficiency virus (HIV) and hepatitis C virus (HCV), and for addiction. There is a paucity of data on how to disseminate genetic testing into healthcare for marginalized populations. We explored drug users' perceptions of genetic testing. METHODS: Six focus groups were conducted with 34 drug users recruited from syringe exchange programmes and an HIV clinic between May and June 2012. Individual interviews were conducted with participants reporting previous genetic testing. RESULTS: All participants expressed acceptance of genetic testing to improve care, but most had concerns regarding confidentiality and implications for law enforcement. Most expressed more comfort with genetic testing based on individual considerations rather than testing based on race/ethnicity. Participants expressed comfort with genetic testing in medical care rather than drug treatment settings and when specifically asked permission, with peer support, and given a clear rationale. CONCLUSION: Although participants understood the potential value of genetic testing, concerns regarding breaches in confidentiality and discrimination may reduce testing willingness. Safeguards against these risks, peer support, and testing in medical settings based on individual factors and with clear rationales provided may be critical in efforts to promote acceptance of genetic testing among drug users.
BACKGROUND: Genetic testing will soon enter care for humanimmunodeficiency virus (HIV) and hepatitis C virus (HCV), and for addiction. There is a paucity of data on how to disseminate genetic testing into healthcare for marginalized populations. We explored drug users' perceptions of genetic testing. METHODS: Six focus groups were conducted with 34 drug users recruited from syringe exchange programmes and an HIV clinic between May and June 2012. Individual interviews were conducted with participants reporting previous genetic testing. RESULTS: All participants expressed acceptance of genetic testing to improve care, but most had concerns regarding confidentiality and implications for law enforcement. Most expressed more comfort with genetic testing based on individual considerations rather than testing based on race/ethnicity. Participants expressed comfort with genetic testing in medical care rather than drug treatment settings and when specifically asked permission, with peer support, and given a clear rationale. CONCLUSION: Although participants understood the potential value of genetic testing, concerns regarding breaches in confidentiality and discrimination may reduce testing willingness. Safeguards against these risks, peer support, and testing in medical settings based on individual factors and with clear rationales provided may be critical in efforts to promote acceptance of genetic testing among drug users.
Authors: Diana S Catz; Nancy S Green; Jonathan N Tobin; Michele A Lloyd-Puryear; Penny Kyler; Ann Umemoto; Jennifer Cernoch; Roxane Brown; Fredericka Wolman Journal: Community Genet Date: 2005
Authors: Amanda Ritchie; Marya Viorst Gwadz; David Perlman; Rebecca De Guzman; Noelle R Leonard; Charles M Cleland Journal: J AIDS Clin Res Date: 2016-12-29