Pathogen sequence data: ethical issues in the global context
Advances in technology and bioinformatics have made it possible to examine the genetic material of disease causing microorganisms (pathogens) with increasing speed and accuracy, and for falling cost. Pathogen sequencing offers major opportunities for diagnosing infection; investigating outbreaks; describing transmission patterns; monitoring antimicrobial resistance; and for the development of new vaccines, diagnostics and therapeutic agents. Pathogen genomic sequencing now holds near time potential for improved control of communicable disease.
Integral to this type of research is rapid and open data sharing, and the formation of global collaborative partnerships in research and public health practice. This can help predict disease spread, evaluate existing and novel treatments, and guide the deployment of limited resources. Yet the need for collection, use, storage and sharing of data at scale brings along a host of ethical concerns, including those related to privacy and confidentiality, as well as fairness and equity in access and capacity to utilise data between scientists from the high income and low income countries. This project will set out to respond to ethical issues raised by the conduct of global or transnational pathogen genomics research and practice.
This project will combine ethical analysis with empirical research.
The project may consider a number of broad ethical questions/considerations, such as:
- What are the conditions for equitable, effective and sustainable international collaborative research practices?
- Whose data is it? – should individuals, institutions or countries be able to claim ownership or intellectual property rights over pathogen sequence data?
- What are the ethical requirements for the collection, use and dissemination of genomic data internationally?
- How can ethical best practice be achieved in a systematic, sustainable and effective manner at both the transnational and local level?
- How can values such as justice and trust be promoted? – e.g. what are the requirements for equitable access to the benefits of genomic technology?
The project may set out to develop a governance framework, or principles of decision-making that could be used in a global context.
research experience, methods and training
This project will involve empirical bioethics methods, which combine philosophical and ethical analysis with empirical research. It will provide a range of training opportunities in empirical bioethics research methods, including literature review, conceptual ethical analysis, qualitative research and data analysis.
planned fieldwork, industry placement and training
Qualitative interviews will be required with practicing healthcare professionals and patients.
sciences, philosophy or public health wishing to develop expertise in the field of empirical bioethics.