Perceptions of genetic testing and genomic medicine among drug users
Open accessAbstract
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.
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The willingness and interest to undergo precision medicine interventions and a positive attitude towards them is high among the majority of patients surveyed.
“The willingness and interest to undergo PM interventions and a positive attitude towards them is high among the majority of patients surveyed [29, 63, 65, 69, 73, 74, 77, 91–93].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [74]
The Results report that all participants would support genetic testing if it could improve treatment or prevent disease, though most had reservations. The Methods describe focus groups with 34 drug users, not a survey of patients; the findings concern genetic testing rather than precision-medicine interventions generally. The Discussion also cautions that this qualitative study does not measure how prevalent the attitudes are. (LLM, conf=0.87)
Experimental — accuracy not yet measuredSome patients are reluctant to use targeted therapies.
“Therefore, some patients are reluctant to use targeted therapies [74].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [74]
The Results section on genetic testing to guide HIV/HCV treatment reports that many drug-user focus-group participants were uncomfortable with medication described as helping only a specific racial group. This supports reluctance toward race-specific treatment, but not the broader claim about targeted therapies generally or patients beyond the study population. (LLM, conf=0.85)
Experimental — accuracy not yet measuredPeople with a drug addiction history are concerned that medical practitioners cannot refuse information requests from courts.
“People with a drug addiction history are concerned that medical practitioners cannot refuse information requests from courts [74].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [74]
Genetic tests arouse suspicion among members of ethnic minorities who fear not being fully informed about the purpose and further use of the tests.
“However, genetic tests arouse suspicion among members of ethnic minorities who fear not being fully informed about the purpose and further use of the tests.”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [74]
Ethnic minorities seem to have a stronger distrust of genetic testing.
“The concerns of ethnic minorities, who seem to have a stronger distrust of genetic testing [74] and the needs of people with disabilities [76] should be taken into consideration.”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [74]
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Erdmann, A., Rehmann-Sutter, C., & Bozzaro, C. (2021) · BMC Medical Ethics · doi:10.1186/s12910-021-00682-8 · Cited by 86 · see citing works
- Authors
- Perlman, D. C., Gelpí-Acosta, C., Friedman, S. R., Jordan, A. E., & Hagan, H.
- Affiliations
- Mount Sinai Beth Israel (US)
- National Development and Research Institutes (US)
- New York University (US)
- Corresponding author
- Perlman, David C.
- Venue
- International Journal of Drug Policy
- Publisher
- Elsevier BV
- Published
- 2015-01
- Volume
- 26
- Issue
- 1
- Pages
- 100-106
- ISSN
- 0955-3959 (ISSN-L)
- PMC
- PMC4276555
- OpenAlex
- W2064270964
- Cited by
- 12
- References
- 3
- Citations by year
- 2026: 2 · 2025: 1 · 2023: 1 · 2022: 2 · 2021: 1 · 2019: 1 · 2017: 2 · 2016: 1 · 2014: 1
- FWCI
- 1.53
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- International Journal of Drug Policy (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institutes of Health (P30 DA 011041)
- Topics
- Life Sciences › Pharmacology, Toxicology and Pharmaceutics › Pharmacology › Pharmacogenetics and Drug Metabolism
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Medicine › Epidemiology › HIV, Drug Use, Sexual Risk
- Keywords
- genetic testing, genomic medicine, drug users, HIV, hepatitis C, addiction, needle exchange programs, confidentiality, genetic discrimination, law enforcement, peer support, willingness to test, marginalized communities, race and ethnicity
- MeSH terms
- Adolescent, Adult, Confidentiality, Female, Genetic Testing, Humans, Male, Middle Aged, Perception, HIV Infections, Substance Abuse, Intravenous, Focus Groups, Needle-Exchange Programs, Genomics, Drug Users, Social Marginalization
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