Perceptions of molecular epidemiology studies of HIV among stakeholders
Background: Advances in viral sequence analysis make it possible to track the spread of infectious pathogens, such as HIV, within a population. When used to study HIV, these analyses (i.e., molecular epidemiology) potentially allow inference of the identity of individual research subjects. Current p...
| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
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SAGE Publishing
2017-12-01
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| Series: | Journal of Public Health Research |
| Subjects: | |
| Online Access: | http://www.jphres.org/index.php/jphres/article/view/992 |
| _version_ | 1797972992104333312 |
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| author | Cynthia Schairer Sanjay R. Mehta Staal A. Vinterbo Martin Hoenigl Michael Kalichman Susan Little |
| author_facet | Cynthia Schairer Sanjay R. Mehta Staal A. Vinterbo Martin Hoenigl Michael Kalichman Susan Little |
| author_sort | Cynthia Schairer |
| collection | DOAJ |
| description | Background: Advances in viral sequence analysis make it possible to track the spread of infectious pathogens, such as HIV, within a population. When used to study HIV, these analyses (i.e., molecular epidemiology) potentially allow inference of the identity of individual research subjects. Current privacy standards are likely insufficient for this type of public health research. To address this challenge, it will be important to understand how stakeholders feel about the benefits and risks of such research.
Design and Methods: To better understand perceived benefits and risks of these research methods, in-depth qualitative interviews were conducted with HIV-infected individuals, individuals at high-risk for contracting HIV, and professionals in HIV care and prevention. To gather additional perspectives, attendees to a public lecture on molecular epidemiology were asked to complete an informal questionnaire.
Results: Among those interviewed and polled, there was near unanimous support for using molecular epidemiology to study HIV. Questionnaires showed strong agreement about benefits of molecular epidemiology, but diverse attitudes regarding risks. Interviewees acknowledged several risks, including privacy breaches and provocation of anti-gay sentiment. The interviews also demonstrated a possibility that misunderstandings about molecular epidemiology may affect how risks and benefits are evaluated.
Conclusions: While nearly all study participants agree that the benefits of HIV molecular epidemiology outweigh the risks, concerns about privacy must be addressed to ensure continued trust in research institutions and willingness to participate in research. |
| first_indexed | 2024-04-11T03:56:05Z |
| format | Article |
| id | doaj.art-451bd486d25e47a6b41912988a90f474 |
| institution | Directory Open Access Journal |
| issn | 2279-9028 2279-9036 |
| language | English |
| last_indexed | 2024-04-11T03:56:05Z |
| publishDate | 2017-12-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Journal of Public Health Research |
| spelling | doaj.art-451bd486d25e47a6b41912988a90f4742023-01-02T00:20:15ZengSAGE PublishingJournal of Public Health Research2279-90282279-90362017-12-016310.4081/jphr.2017.992176Perceptions of molecular epidemiology studies of HIV among stakeholdersCynthia Schairer0Sanjay R. Mehta1Staal A. Vinterbo2Martin Hoenigl3Michael Kalichman4Susan Little5Department of Medicine, University of California San Diego, CADepartment of Medicine, University of California San Diego, CA; Department of Medicine, San Diego Veterans Affairs Medical Center, San Diego, CA; Department of Pathology, University of California San Diego, CADepartment of Medicine, University of California San Diego, CADepartment of Medicine, University of California San Diego, CADepartment of Pathology, University of California San Diego, CADepartment of Medicine, University of California San Diego, CABackground: Advances in viral sequence analysis make it possible to track the spread of infectious pathogens, such as HIV, within a population. When used to study HIV, these analyses (i.e., molecular epidemiology) potentially allow inference of the identity of individual research subjects. Current privacy standards are likely insufficient for this type of public health research. To address this challenge, it will be important to understand how stakeholders feel about the benefits and risks of such research. Design and Methods: To better understand perceived benefits and risks of these research methods, in-depth qualitative interviews were conducted with HIV-infected individuals, individuals at high-risk for contracting HIV, and professionals in HIV care and prevention. To gather additional perspectives, attendees to a public lecture on molecular epidemiology were asked to complete an informal questionnaire. Results: Among those interviewed and polled, there was near unanimous support for using molecular epidemiology to study HIV. Questionnaires showed strong agreement about benefits of molecular epidemiology, but diverse attitudes regarding risks. Interviewees acknowledged several risks, including privacy breaches and provocation of anti-gay sentiment. The interviews also demonstrated a possibility that misunderstandings about molecular epidemiology may affect how risks and benefits are evaluated. Conclusions: While nearly all study participants agree that the benefits of HIV molecular epidemiology outweigh the risks, concerns about privacy must be addressed to ensure continued trust in research institutions and willingness to participate in research.http://www.jphres.org/index.php/jphres/article/view/992HIVmolecular epidemiologyqualitative interviewsprivacyresearch ethics |
| spellingShingle | Cynthia Schairer Sanjay R. Mehta Staal A. Vinterbo Martin Hoenigl Michael Kalichman Susan Little Perceptions of molecular epidemiology studies of HIV among stakeholders Journal of Public Health Research HIV molecular epidemiology qualitative interviews privacy research ethics |
| title | Perceptions of molecular epidemiology studies of HIV among stakeholders |
| title_full | Perceptions of molecular epidemiology studies of HIV among stakeholders |
| title_fullStr | Perceptions of molecular epidemiology studies of HIV among stakeholders |
| title_full_unstemmed | Perceptions of molecular epidemiology studies of HIV among stakeholders |
| title_short | Perceptions of molecular epidemiology studies of HIV among stakeholders |
| title_sort | perceptions of molecular epidemiology studies of hiv among stakeholders |
| topic | HIV molecular epidemiology qualitative interviews privacy research ethics |
| url | http://www.jphres.org/index.php/jphres/article/view/992 |
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