SpeakersDr Jane Kaye, Wellcome Trust Research Fellow, The Ethox Centre, University of Oxford
VenueUniversity of Exeter,Egenis,Byrne House,St Germans Road,Exeter, EX4 4PJRoom no: GF7, Byrne House
Event detailsTime: 3:30 - 5:00 PMOne of the important challenges of the 21st century is how to regulate the sharing of personal information and in doing so protect the privacy of individuals in a global networked world. The field of genomics provides a case study to explore some of these issues, as this field is regarded as a leader in terms of the way that data is shared and in the development of infrastructure resources for sharing of data. Genomic research is characterised by large research consortiums and web-accessible platforms to facilitate research, such as the Human Genome Project, the HAPMAP Project and the 1000 Genomes Project. There are also plans to network biobanks to create a research infrastructure within Europe and funding bodies require that raw data should be shared unless arguments can be made to the contrary. This change in the way that the science is carried out, from hypothesis-led projects to data mining, is a result of a combination of factors;- such as the new genome-wide scanning technology (GWA); the scientific need for large sample sizes to discern the variants that are responsible for disease; and technological advances in our ability to store, manipulate and interrogate large amounts of data. The point of this paper is to explore the issues that are raised by data sharing in the field of genomics. It will focus on some perennial issues in medical research that are given a new twist such as informed consent; feedback of incidental findings; privacy and the governance of research. One of the difficulties is how we can establish global governance systems when our enforcement and legal systems are nationally based. Data sharing in genomics also raises broader questions about how we should regulate emerging technologies in the area of biomedicine.