“An Ethical Approach to Genomic Analysis and Data Sharing” Caroline Wright (UoE)

Egenis seminar series. Large-scale DNA sequencing is increasingly being used in research and clinical care. This talk will argue that, in order to maximise the benefits of genomic medicine and minimise the potential harms, making accurate molecular diagnoses for individuals with disease should be the focus of genome sequencing. In this talk, I will outline some of the key lessons learnt from the UK-wide Deciphering Developmental Disorders study, a unique partnership between the Wellcome Trust Sanger Institute and all the NHS Regional Genetics Services across the UK and Ireland. By sequencing all the genes of affected children and their parents, and developing novel methods for responsible and effective data processing and sharing, we have been able to provide a diagnose to thousands of families and discover dozens of new disease-causing genes.