HEALTH LAW & POLICY WORKSHOP
presents
Jane Kaye
Ethox Centre, University of Oxford
Data Sharing in Genomics – what are the implications?
Thursday, March 12, 2009
12:30 - 2:00
Solarium (room FA2) - 84 Queen's Park
Faculty of Law, University of Toronto
One of the important challenges of the 21st century is how to regulate the use and sharing of personal information and how to 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 as they raise a number of questions about the role of law and in particular, the relationship between ethics and law in the field of emerging technologies. Data sharing in genomics also raises questions about how we should regulate emerging technologies and how we can establish global governance systems when our enforcement and legal systems are nationally based.
Jane Kaye is Wellcome Trust Fellow in Medical Law at the Ethox Centre, University of Oxford. She obtained her degrees from the Australian National University (B.A); University of Melbourne (L.L.B); and University of Oxford (D.Phil). She was admitted to practice as a solicitor/barrister by the Australian Capital Territory Supreme Court in 1997. She is a member of the Faculty of Law, University of Oxford and has taught the Regulation and Medical Law and Ethics BCL courses at the University of Oxford. Within the Ethox Centre, Dr. Jane Kaye is responsible for directing the Law, Health and Emerging Technologies research programme. She is also Director of the University of Oxford’s Oxford Bioethics Network http://oxbionet.medsci.ox.ac.uk. She is involved in a number of expert committees focusing on the issues surrounding biobanks within Europe and internationally.
A light lunch will be served.
For more workshop information, please contact Nadia Gulezko at n.gulezko@utoronto.ca.
