Your genetic blueprint: who should have access?

Date: Wednesday 15th June 2016, 6.30 pm – 8.00 pm

Venue: Said Business School, Oxford

On the soggiest day of the summer so far, we held the inaugural Living Well Oxford event: “Your genetic blueprint: who should have access?”  We were joined by Dr. Ingrid Slade, our chair for the evening, who is a public health doctor at Oxford University Hospitals NHS Foundation Trust and a Wellcome trust research fellow at the Ethox Centre at the University of Oxford.  Our panellists were Professor Jenny Taylor, Programme Director of the Oxford Biomedical Research Centre’s Genomic Medicine Theme; Professor Gil McVean, Professor of Statistical Genetics at the University of Oxford and Acting Director of Oxford’s Big Data Institute and Carol Moore, Executive Director of Healthwatch Oxfordshire.

After a brief introduction detailing what our genome is and why it is important for us to know more about individual genomes, we heard about genome data privacy from different perspectives.  We learned about the implications for research into rare diseases, we heard what this genome data will mean at a population level, and we considered what this wealth of data will mean to patients and the public.

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The floor was then open to questions from the audience, which included:

  • What makes DNA data different to our other healthcare data, such as blood test results or MRI scans?
  • Are there concerns for our genomic data to be hacked?
  • What will we learn about monozygotic (identical) twins from this new data?
  • Will the 100,000 Genomes project participants be able to have access to their own genetic data?

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The discussions between the panel and audience were very interesting and stimulating, and the chair did a sterling job.

This event formed part of the Future Debates series of public events supported by the British Science Association.  These events are part of the British Science Association’s work to make science a fundamental part of British society and culture, 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.  This event was organised in collaboration with the British Science Association Oxfordshire Branch and the Wellcome Trust Centre for Human Genetics (which provided additional funding).

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