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Perceptions of molecular epidemiology studies of HIV among stakeholders

Cynthia Schairer, Sanjay R. Mehta, Staal A. Vinterbo, Martin Hoenigl, Michael Kalichman, Susan Little
  • Cynthia Schairer
    Department of Medicine, University of California San Diego, CA, United States
  • Sanjay R. Mehta
    Department 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, CA, United States | srmehta@ucsd.edu
  • Staal A. Vinterbo
    Department of Medicine, University of California San Diego, CA, United States
  • Martin Hoenigl
    Department of Medicine, University of California San Diego, CA, United States
  • Michael Kalichman
    Department of Pathology, University of California San Diego, CA, United States
  • Susan Little
    Department of Medicine, University of California San Diego, CA, United States

Abstract

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.

Keywords

HIV; molecular epidemiology; qualitative interviews; privacy; research ethics

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Submitted: 2017-05-11 05:02:52
Published: 2017-12-13 10:22:27
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Copyright (c) 2017 Cynthia Schairer, Sanjay Mehta, Staal A Vinterbo, Martin Hoenigl, Michael Kalichman, Susan Little

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