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PETBioNewsCommentFILM: What Does Consent Mean for Generation Genome?

BioNews

FILM: What Does Consent Mean for Generation Genome?

Published 31 October 2017 posted in Comment and appears in BioNews 923

Author

BioNews

PET BioNews

This film documents the Progress Educational Trust/Genomics England event 'What Does Consent Mean for Generation Genome?', which formed part of the Genomics Conversation...

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.)


Introductions
0:00:00 Sarah Norcross
Director, Progress Educational Trust
0:03:41 Professor Bill Newman
Director, Manchester Centre for Genomic Medicine

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

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

Close
1:43:25 Sarah Norcross
Director, Progress Educational Trust

Documents referred to by panel speakers and audience members in this film include:

  • 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:

  • 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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