The ethics of returning individual-level genomic results to research participants
Rapid advances in genomics and big data increasingly contribute to the blurring of boundaries between clinical practice and research. The issue of returning results to individual participants is a prime example of where clinical care and research practice appear to merge. For example, recently there have been suggestions that research projects should clinically validate individual level results before they return them to research participants. Such suggestions raise questions about the role of researchers and their duties towards research participants, but also of the practical and moral distinction between research participants and patients.
This project will investigate the ethical and practical issues genomic and big data research raise regarding the return of results to individual research participants.
RESEARCH EXPERIENCE, RESEARCH 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, data analysis.
FIELD WORK, SECONDMENTS, INDUSTRY PLACEMENTS AND TRAINING
With the support of the supervisors, the candidate will identify a suitable research project to use as a case study in the Department. Qualitative interviews will be required with researchers working in genomics and big data, with patient representative groups that regularly participate in research such as Genetic Alliance UK, and with relevant policy makers.
This project would suit a candidate with a background in social sciences or philosophy wishing to develop expertise in the field of empirical bioethics with an interest in genomics and big data research.