Session IV: panel and audience discussion

The audience was invited to discuss themes emerging during the day with the panel, which consisted of Alastair Kent (Genetic Interest Group), Ainsley Newson (London IDEAS Genetics Knowledge Park), Imran Rafi (St George’s Hospital Medical School), Fiona Lalloo (St Mary’s Hospital, Manchester) and Simon Stockhill (Centre for Primary Care and Social Medicine, London). The moderator was Charlotte Augst (CancerBACUP).

The main themes that emerged during this of discussion were:

1. All political talk is now about a primary care-led NHS. Yet we are probably still at stage of “specialists” second-guessing what GPs and their colleagues need in order to act on this with regard to genetics. GPs are well placed to deal with genetic issues - they deal with families, there is continuity over time, and they are used to real-life complexity. Indeed, GPs already practice care based on genetics, such as accessing screening programmes. It was felt that this conference went some way to helping GPs articulate their needs.

2. Many delegates are well aware of the importance of genetics in their practice, but it was acknowledged that there is a lot of basic awareness raising to do done. Delegates encouraged each other to “evangelise” to their colleagues the fact that probably more than 10% of their patient list was at risk of a genetic disease.

3. A major theme of the day, and key to increasing awareness of patients who may be at risk from familial conditions, is taking good family histories. Delegates were keen to discuss the practicalities, amid concerns about time and resource pressures. Tools such as computer-based questionnaires, which might be filled out with basic information in the waiting room, and the use of genetic counsellors in the clinic or community, are under development. Important questions that need to be addressed include how to validate information from patients, how to update records as new events happen in a family, and how best to store the information.

4. Leading on from questions about storing information, it was noted that GPs have a responsibility to maintain confidentiality between family members when dealing with familial conditions. Similarly, regional genetics centres keep separate notes to the rest of the NHS because they include information on more than one person.

5. It was noted by several panel members that GPs should find out where their regional genetics centre is, and be reassured that staff there will welcome any question, however simple or complex it may seem.

Resources:

• list of regional genetics centres at www.bshg.org.uk
• background information on clinical genetics services at www.clingensoc.org