University of Southampton, United Kingdom
Brighton and Sussex Medical School, United Kingdom
Genomic approaches to diagnosis and treatment, such as the 100,000 Genomes Project, have become embedded in healthcare. Research and clinical practice are more co-dependent than in the past and responsibilities of care are changing for individual patients and their current and future relatives.
This research programme will combine empirical bioethical research with conceptual and theoretical analysis to examine the issue of ethical preparedness in genomic medicine which can be used to inform and develop policies for practice. We will focus on the extent to which professionals are prepared for the navigation of ethical issues in the new working environment of clinical genomics.
We will use a range of research methods across a variety of settings to map the experience of practitioners, patients and participants in genomic medicine, the ethical issues they confront, and the impact on practice when ethics challenge established practice, be that at the stage of recruitment, diagnosis (or lack of), treatment, surveillance, longer-term contact or the need to contact others.