Clinical Genomic Medicine and the Need for a Public Health Ethics Account (360G-Wellcome-200314_Z_15_Z)

The implementation and practice of clinical genomic medicine increasingly employs a population perspective in the utilisation of data and the integration of genomics within healthcare systems. However, the contemporary accounts of ethics and genomics tend to lag behind, focussing primarily on the best interests of individuals and their families. These ethical accounts are unsuited to addressing the new ethical problems resulting from the population approach in clinical genomic medicine e.g. the use of population level data sets to interpret variants of unknown significance. Might an account built upon public health ethics, which tends to emphasise the balance between protecting and promoting the health of populations, whilst avoiding individual harm, be more suited to the assessment of clinical genomic practice? This research will explore whether public health ethics can offer a more fitting and practical account for the ethics of clinical genomic medicine. The key research goals include combining empirical and normative analysis of public health ethical values for application in clinical genomic medicine, the formulation and dissemination of practical guidance and useful recommendations for application in clinical genomic medicine policy and practice. The methodology employed will involve conceptual ethical analysis and qualitative interviews with key stakeholder groups in the UK.