Perceptions of Molecular Epidemiology Studies of Hiv among Stakeholders

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.Significance for public healthWhen molecular epidemiology is used to study HIV, it can demonstrate how HIV infections are related and how to target prevention efforts. Applying these analyses for maximal benefit in the fight against HIV would almost certainly make individuals whose data are analyzed vulnerable to discovery. However, absolute protection of this sensitive information would require that research into these methods not be done. The success of HIV molecular epidemiology will depend on finding a balance between public health and the interests of individuals living with HIV. The stakeholders interviewed in this study agreed that molecular epidemiology should be used to study HIV epidemics and transmission despite risks to privacy. However, these interviews also highlighted the difficulty of understanding molecular epidemiology and its privacy implications. For HIV molecular epidemiology to continue, privacy protections must go beyond simply masking traditional identifiers and assuming participants are informed enough to consent to the risks.

Reassessing the Ethics of Molecular HIV Surveillance in the Era of Cluster Detection and Response: Toward HIV Data Justice

“…These studies reveal that expert stakeholders are unsure of the benefit to participants in molecular HIV studies (Mutenherwa et al 2019), and that obtaining individual consent would be difficult due to the challenge of ensuring that participants would understand what they are consenting to. This also partly reflects the lack of clarity regarding individual and community benefit of molecular HIV studies (Schairer et al 2017).…”

Ethical challenges in pathogen sequencing: a systematic scoping review

“…Only two publications, by the same author, originated from the global south (South Africa). Eight articles were specifically about the use of sequencing in HIV 14 , 15 , 17 , 20 , 22 , 28 , 34 , 35 . Eleven were not specific to a particular disease.…”

Social Networks of Substance-Using Populations: Key Issues and Promising New Approaches for HIV

“…With the introduction of new approaches, as well the use of old ones, there is also a need for a close eye to ethical issues related to research with marginalized and often criminalized communities, such as PWUD. For instance, a recent study among HIV-infected individuals, individuals at high risk of HIV infection, and HIV care and prevention workers found support for the benefits of molecular epidemiologic research, but the authors cited a need for greater attention to concerns around privacy protection and for ensuring that participants truly understand what molecular epidemiology is and the potential risks [102]. In terms of geospatial and place-based research on the networks of PWUD, ethical concerns are also incredibly important as the mapping of drug use locations could draw attention to hotspots of illegal activity, which could put individuals at greater risk of being targeted by law enforcement [103].…”