IN CONFIDENCE

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
• informatics
• 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.