Future Debates: Who owns my genome? Debating public and private uses of gen...
Public Genome Data Privacy Debate chaired by Sarah Cunningham-Burley, Professor of Medical and Family Sociology at Edinburgh University.
Hosted jointly by Edinburgh and SE Scotland Branch of the British Science Association and
University of Edinburgh, Deanery of Molecular, Genetic and Population Health Sciences, Edinburgh Medical School
Genomic medicine is evolving quickly, and data are being collected on a group of patients with rare diseases and cancers across the UK. There’s large potential for the technology to help us create new treatments and preventative approaches. Someone’s genome can explain lots of things about them, and we don’t yet understand all of what the genetic code means. This information therefore needs to be collected and stored securely, interpreted by experts and viewed in a way that protects the donor’s identity. There have been discussions among scientists about the implications of genomic medicine for privacy and the NHS, and the British Science Association believes that it is vital to open that conversation up to the public.
The Edinburgh and SE Scotland Branch of the BSA and Edinburgh Medical School are therefore holding a public future debate chaired by Sarah Cunningham-Burley, Professor of Medical and Family Sociology at Edinburgh University. There will be short talks from a panel of experts from Edinburgh University: Dr Sarah Chan (a Chancellor's Fellow at the Usher Institute for Population Health Sciences and Informatics), Dr Catherine Heeney (Research Fellow, Making Genomic Medicine) and Dr Claudia Pagliari (Senior Lecturer in Primary Care). Afterwards the debate will be opened up to those attending.
Future Debates events are part of the British Science Association's work to make science a fundamental part of British society and culture. We want to empower many more people – not just scientists – to constructively engage in debates over the applications and implications of science in their lives, their local economy and the UK’s future.
Doors open from <18.00>, with the debate to run from <18.30> until <20.30>. This event is suitable for 16+
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Collated, anonymised data from the Future Debates series will be provided to the Chief Medical Officer for the purpose of informing policy about Genome Data Privacy. The event will not be recorded, nor will any individual be identifiable in any of this information.