GENETICS GREEN PAPER
Revised draft storyboard
Chapter 1: vision (with anxieties)
Vision/potential but anxieties, need education, regulation etc
- likely developments over (a) 5 years and (b) 10-20 years in technologies and knowledge gain
- resulting changes in healthcare (incl. treatment and prediction/prevention)
- examples of likely changes (benefits) to patient experience and outcomes
Needs to be inspiring enough to get readers to read on but acknowledging concerns about risk, ethics and cost pressures; and noting that the NHS (and society?) will need to adapt in various ways in order to take full advantage of genetic developments.
Chapter 2: establishing the baseline
- Where are we now?
- What technologies, treatments, services and regulations exist
- How far do we need to travel? - brief summary (for exploration of key points later in the paper)
Chapter 3: society, ethics and regulation
- Public awareness, understanding and confidence and how these can be increased
- Ethical and societal issues eg access to data, consent issues in relation to eg screening, etc
- Regulatory frameworks and what safeguards might be needed to assure safety and public confidence.
Chapter 4: R&D, industry
- R&D: government policy and initiatives on R&D (generally, and specifically concerning genetics); the role of DH and NHS R&D programmes; genetics knowledge parks; and how the UK might maintain and develop its "leading edge" status.
- Industry: NHS/industry partnership including intellectual property issues and issues around the use of in-patent technology by the NHS; roles, needs and responsibilities of industry (and NHS and government)
Chapter 4 (&5?): the NHS and how it needs to develop
Fleshed-out description(s) of what the NHS could look like including potential changes to the configuration of existing services; eg
- how testing might best be provided
- how primary, secondary and tertiary care might change as a result of predisposition tests for common diseases and pharmacogenomics.
Therefore how the NHS and others need to prepare themselves;
what is being done and what will need to be done to enable the NHS to make most appropriate use of these technologies: eg
- commissioning mechanisms and infrastructure
- the existing specialist services
- workforce planning especially for those groups working directly with genetics
- education and training (for groups working directly with genetics but also the wider spectrum of healthcare professionals). Both undergraduate training and continuing education will need to be addressed
- capacity issues in all sectors
- the role of primary care
- advice, guidance, decision support etc for healthcare professionals eg on the place of new technologies, differential risk, when to refer etc
- issues for the professions themselves to address
- horizon-scanning, financial planning and resource issues
- how patient and public understanding inter-relates with the NHS.
Chapter 6: issuing the challenge
Summary chapter reminding readers of the potential benefits and bringing together the main points about how the public, professions, NHS, government, R&D interests and industry need to prepare themselves.