This film documents the Progress Educational Trust/Genomics England event 'What Does Consent Mean for Generation Genome?'.
The event formed part of the Genomics Conversation, a programme of activities led by Genomics England which involves the public and stakeholders in discussions about key issues in genomic medicine.
(If you cannot see the film below, click here to view it.)
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| Introductions | |
| 0:00:00 | Sarah Norcross Director, Progress Educational Trust |
| 0:03:41 | Professor Bill Newman Director, Manchester Centre for Genomic Medicine |
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| Presentations | |
| 0:06:19 | Professor Anneke Lucassen Leader of Clinical Ethics and Law research group, University of Southampton |
| 0:18:26 | Professor Dame Sue Hill Chief Scientific Officer, NHS England |
| 0:30:22 | Dr Tara Clancy Consultant Genetic Counsellor, Manchester Centre for Genomic Medicine |
| 0:41:38 | Jillian Hastings Ward Chair of Participant Panel, 100,000 Genomes Project |
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| Audience contributions | |
| 1:01:02 | Simon Belt Coordinator, Manchester Salon |
| 1:02:39 | Robert Chapman Psychology researcher, Goldsmiths University of London |
| 1:03:43 | Sash Palaniswamy Bioinformatician |
| 1:04:21 | Derek Stewart Patient advocate |
| 1:15:35 | Dian Donnai Professor of Medical Genetics, University of Manchester |
| 1:17:00 | Rheanne Laybourn Paralegal in Healthcare Litigation, Hempsons |
| 1:17:54 | Ronnie Wright Clinical Scientist, Manchester Centre for Genomic Medicine |
| 1:18:40 | Dr Steve Lui Senior Lecturer, University of Huddersfield |
| 1:29:24 | Dr Fiona Ulph Senior Lecturer, University of Manchester |
| 1:31:04 | Dr Julia van Campen Genetic Technologist, Sheffield Diagnostic Genetics Service |
| 1:31:45 | Tina Nesbitt Parent Representative (North West), SWAN UK |
| 1:32:03 | Felix Gille Research Associate, University of Cambridge |
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| Close | |
| 1:43:25 | Sarah Norcross Director, Progress Educational Trust |
Documents referred to by panel speakers and audience members in this film include:
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Generation Genome
Report by the Chief Medical Officer -
Developing a Consensus on Data Sharing to Support NHS Clinical Genetics and Genomics Services
Report by the National Data Guardian -
General Data Protection Regulation
European regulation which comes into force in 2018 -
The Collection, Linking and Use of Data in Biomedical Research And Healthcare: Ethical Issues
Report by the Nuffield Council on Bioethics -
NHS Constitution for England
Document that sets out the objectives and principles of the National Health Service -
Royal Free London NHS Foundation Trust and Google DeepMind
Investigation and ruling by the Information Commissioner's Office
Additionally, panel speaker Professor Anneke Lucassen refers to the following two articles in her presentation:
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Is donating your DNA to the NHS worth the privacy risks?
New Scientist -
When gene tests for breast cancer reveal grim data but no guidance
New York Times
This film was made by the education charity WORLDwrite.
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