Medizinische Universität Graz Austria/Österreich - Forschungsportal - Medical University of Graz
Gewählte Publikation:
SHR Neuro Krebs Kardio Lipid Stoffw Microb
Schairer, CE; Mehta, SR; Vinterbo, SA; Hoenigl, M; Kalichman, M; Little, SJ.
Trust and Expectations of Researchers and Public Health Departments for the Use of HIV Molecular Epidemiology.
AJOB Empir Bioeth. 2019; 10(3):201-213
Doi: 10.1080/23294515.2019.1601648
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- Co-Autor*innen der Med Uni Graz
- Hönigl Martin
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- Abstract:
- Background: Molecular epidemiology (ME) is a technique used to study the dynamics of pathogen transmission through a population. When used to study HIV infections, ME generates powerful information about how HIV is transmitted, including epidemiologic patterns of linkage and, potentially, transmission direction. Thus, ME raises challenging questions about the most responsible way to protect individual privacy while acquiring and using these data to advance public health and inform HIV intervention strategies. Here, we report on stakeholders' expectations for how researchers and public health agencies might use HIV ME. Methods: We conducted in-depth semistructured interviews with 40 key stakeholders to find out how these individuals respond to the proposed risks and benefits of HIV ME. Transcripts were coded and analyzed using Atlas.ti. Expectations were assessed through analysis of responses to hypothetical scenarios designed to help interviewees think through the implications of this emerging technique in the contexts of research and public health. Results: Our analysis reveals a wide range of imagined responsibilities, capabilities, and trustworthiness of researchers and public health agencies. Specifically, many respondents expect researchers and public health agencies to use HIV ME carefully and maintain transparency about how data will be used. Informed consent was discussed as an important opportunity for notification of privacy risks. Furthermore, some respondents wished that public health agencies were held to the same form of oversight and accountability represented by informed consent in research. Conclusions: To prevent HIV ME from becoming a barrier to testing or a source of public mistrust, the sense of vulnerability expressed by some respondents must be addressed. In research, informed consent is an obvious opportunity for this. Without giving specimen donors a similar opportunity to opt out, public health agencies may find it difficult to adopt HIV ME without deterring testing and treatment.
- Find related publications in this database (using NLM MeSH Indexing)
- Adult -
- Aged -
- Confidentiality - ethics
- Female -
- HIV - genetics
- HIV Infections - epidemiology
- HIV Infections - transmission
- Humans -
- Informed Consent - ethics
- Interviews as Topic -
- Male -
- Middle Aged -
- Molecular Epidemiology - methods
- Molecular Epidemiology - organization & administration
- Motivation -
- Public Health Administration -
- Research Personnel - psychology
- Risk Assessment -
- Trust -
- Young Adult -