AbstractDue to technical and computational advances, the use of phylogenetics in HIV is evolving. Previously, analyses were time consuming and expensive allowing only retrospective analyses on relatively small scales, but now phylogenetic analyses can be, and are, used in near-real time to describe transmission dynamics and guide public health response, aiming to prevent further transmission. While phylogenetically underpinned prevention is being implemented in the USA as part of its epidemic response, there is less experience in the UK, and there has been little research into the ethical and acceptability issues in this context.
This thesis aims to identify how the use of real-time phylogenetics to guide HIV prevention interventions could be acceptably implemented in the UK. A literature review and two empirical studies were conducted to address two research questions: 1. How could phylogenetics be implemented in a way that is acceptable to patients?; 2. Can real-time phylogenetically guided interventions be piloted on a local scale, providing evidence for effectiveness and real-life acceptability?
A systematic review was conducted to identify and draw lessons from the use of approaches for case finding of infectious disease guided by phylogenetics, and the barriers, facilitators and ethical issues associated with this. A phylogenetic analysis sought to identify sources of HIV infection in incident cases of HIV in Brighton, to identify whether this was a relatively ‘closed’ cohort, and inform piloting of a real-time phylogenetically led prevention system. A qualitative study explored acceptability of the use of phylogenetics with key stakeholders, and potential negative outcomes of its use.
The findings of these studies were synthesised to inform intervention development. There has been a paucity of previous research or reporting of barriers, facilitators, and acceptability and ethical issues in the context of phylogenetic data used for purposes of infectious disease case finding. The acceptability of such data use to patients and healthcare staff depends on the perceived risks balanced against potential public health benefits of this use of data, and use of phylogenetics in a manner deemed unacceptable risks disengaging patients from testing for HIV. Acceptability of the use of phylogenetics to guide public health interventions increases as the potential prevention benefits increase, and is enhanced by certain protections, including strict security measures and limiting access to data, informed consent, protection from police use and improved understanding of the purposes and limitations of phylogenetic analysis. Sources of transmission to patients attending Brighton’s HIV centre were found to be geographically dispersed throughout the UK, suggesting piloting a phylogenetic system locally would limit its utility in terms of prevention benefits, and to be effective, such a system would require large scale, national input.
To introduce phylogenetically guided public health interventions in the UK, evidence of clear public health benefit is required, which may be achieved through nationwide anonymous realtime phylogenetic surveillance to identify whether clusters that may be disrupted by interventions exist, and will be supplemented by outcomes reported in the USA. If we gain evidence of benefit, strategies to mitigate risk require development, including protections from judicial use, approaches for informed consent and stringent security and data management policies. Introducing phylogenetics to guide public health interventions in the UK without addressing these considerations risks disengaging individuals from testing and on-going care
|Date of Award||2019|
|Supervisor||Jackie A. Cassell (Supervisor), Jaime Vera (Supervisor) & Andrew Leigh Brown (Supervisor)|