This summary of the second meeting, held on Thursday 13^th May 1999, has not been confirmed as a true record of proceedings.  It is presented as a guide to the committee's work, to aid dissemination of information and to promote further discussion.  

Agenda

Professor Peter  Farndon, Chairman RCP; Dr Julie Crow, RCPath Registrar; Professor Ian Gilmore, RCP Registrar; Professor Andrew Read, BSHG Chairman; Mr John Barber, RCPath; Dr Angela Brady, RCP trainee representative; Dr Naomi Brecker, NHS Executive observer; Dr Angus Clarke, RCP JCHMT SAC; Dr Jill Clayton-Smith, RCPCH; Professor Dian Donnai, CMO Adviser; Dr Rob Elles, RCPath; Dr Alan Fryer, RCP; Dr Lorraine Gaunt, BSHG; Mrs Penny Guilbert, BSHG; Dr Helen Hughes, BSHG; Professor Noor Kalsheker, RCPath; Professor Sue Malcolm, RCPath; Professor Robert Mueller, RCP; Dr Virginia Warren, FPHM; Ms Hilary Irons, RCP Committee Administrator

Dr Brecker reported that a National Health Service Executive strategy meeting had considered genetic services and new developments, including specialist services, biotechnology issues, and likely future developments. It had been attended by the NHSE Chief Executive, the Chief Medical Officer, Executive Directors and Regional Chief Executives, and there had been recognition of the need to develop strategic planning for genetics. A short to medium term action plan was being taken to the NHSE meeting in June.

Dr Elles reported that approval had been given for the Secretary of State to approach Myriad for exploratory talks and the current view was that a national licence, if necessary, would be the best way forward.

(a) UK genetic testing network

The British Society for Human Genetics had produced a document describing how a national network for DNA diagnosis of single gene disorders would be beneficial and cost effective. The document had been sent to the Department of Health.

(b) DNA Services for rare single gene disorders

A questionnaire had been distributed to regional genetics centres to ascertain the need for increasing the number of rare disorders for which DNA testing should be available.  A special concern was the transition of testing for rare disorders from a research project into clinical service once families had been offered such testing. Professor Mueller reported that there was support for a national organisation for testing for these disorders, each centre being responsible for a small number of rare disorders.  He suggested that it would be appropriate for a molecular geneticist to take this forward. The Scottish genetics centres had declined to take part in the exercise but he would nevertheless try to obtain data.

 

Members expressed concern about the ability to recover the costs of testing following the abolition of the ECR system on 1st April. The situation was acute as centres would be reluctant to carry out testing in case they were not reimbursed.

 

The committee heard that the NHSE recognised that there were problems which needed to be addressed urgently. The Chairman stressed that genetic testing for rare disorders required a national approach, and Professor Read agreed to ask the Council of the BSHG to consider reconvening its working party to look at how a national scheme might operate.     Dr Elles agreed to contact genetic centres to monitor the situation with regard to payment for out of area genetic tests over the next three months. The Chairman would convey the Joint Committee’s anxieties to the NHSE.

 

Professor Donnai reported that the Clinical Genetics Society had reviewed the documents issued by the Royal Colleges and hoped to produce a document on clinical governance in clinical genetics shortly. The group was also gathering existing guidelines from clinical genetics units.

 

Dr J Clayton-Smith presented the findings of a study of genetic education for non-geneticists provided by members of five UK genetic departments. In March 1999 91 hours of teaching were provided.   It was agreed that data should be obtained from all the centres to confirm the large amount of teaching which the survey had shown.

Professor Donnai presented two items discussed at the March meeting of ASAG: (i) haemochromatosis, and (ii) colorectal cancer.

 

Dr Brecker reported that a review of national regulatory bodies, following wide consultation, had been completed. Announcements would be made within the next few weeks.

A report from a workshop in February which had examined the commissioning of genetic services was presented by Dr Brecker. A paper for consultation would be published in the Autumn. The Chairman requested that the Joint Committee have an opportunity to comment.

 

          Dr Virginia Warren outlined the aims of the PHGU and its current initiatives.

Nuffield Trust Genetics Scenario Project:  The aim is "to assess the impact of advances in genetics and molecular biology on the organisation, funding and provision of clinical services, on changes in clinical practice, and on the potential for disease prevention and public health action".  Dr Warren commented on the seven stakeholder groups, explaining that each group would include a nominee from GIG which would organise an eighth workshop. The Nuffield Trust would aim to publish a report early next year.

 

 

Summer school for policy makers in 2000: Dr Warren reported that this was aimed at policy makers, for example senior executives and people working in primary care and cancer care. A detailed paper was available.

 

 

Development of a communications function:  The PHGU is aiming to offer authoritative statements to the press on genetic issues, particularly those of public health importance.

 

UK Genetic Testing Network:   Dr Warren said that the PHGU would be pleased to contribute to the work on the UK Genetic Testing Network.

Royal College of General Practitioners Primary Care Genetics web discussion forum                     (http://www.rcgp.org.uk/forums/genetics/wwwboard.htm)

The Chairman drew  attention to a web discussion forum hosted by RCGP.

 

Professor Kalsheker tabled a paper listing four key issues, and commented that they mirrored the previous discussions on dealing with rare disorders.  The Committee asked Professor Kalsheker, Dr Clayton-Smith and Dr Warren to identify the problems before deciding how the committee should become involved.

 

 

Mrs Guilbert presented a position statement from the Association of Genetic Nurses and Counsellors (AGNC) for the development of the profession of genetic counselling. Members expressed their support for the proposals and made the following comments: (a) it would be helpful to include the mechanism for registration; (b) the status of those already practising should be considered; (c) the two years professional clinical experience be regarded by Trusts and purchasers as a two year probationary period. Mrs Guilbert advised that it was anticipated that manpower issues should be considered in the context of professions supplementary to medicine. 

 

The Chairman felt that the Joint Committee should examine the career structure and prospects for the future of academic medical genetics. Professor John Saville, Chairman of the Academy of Medical Sciences working party, is reviewing the structure for academic medicine. Professor Connor has been asked to prepare a paper on academic medical genetics in the UK for the Joint Committee.

 

The RCP was shortly to publish specimen consultant job plans in a College document "Consultant Physicians Working for Patients".

 

RCPath SAC: A report would be available after the next meeting.

 

 

JCHMT SAC in clinical genetics: Dr A Clarke reported that the curriculum had been revised slightly. It was hoped that every training centre would be visited over the next year. The role of educational supervisor had been defined and a sub-group was working on appraisals and assessments. For manpower purposes the length of training was regarded as four to five years.

 

 

Course on management for clinical geneticists in training: Dr Brady gave a report on the first course which had been held in Edinburgh for 36 trainees. The aim had been to provide confidence in day to day management issues, and the planning and development of services.

 

 

Manpower planning

The chairman noted that many issues of service provision discussed at the meeting depended on the co-ordination and availability of the different disciplines of medical genetics.  Equitable provision of service from region to region would best be met if manpower planning for posts in the separate disciplines could be co-ordinated nationally.   

(a) Learning to manage health information: a theme for clinical education. NHS Executive (www.enablingpp.exec.nhs.uk)

 

                    (b) Confidentiality guidelines: Genetic Interest Group

(c) Genetic Guidelines: United Kingdom Haemophilia Centre Directors Organisation.

 

 

(d) Physicians maintaining good medical practice: clinical governance and self-regulation (February 1999) Royal College of Physicians

 

 

Guidelines on the retention of tissues at post mortem examination

Professor Malcolm asked for comments on the guidelines on the retention of tissues at post mortem which were being prepared by RCPath. The general view of members was that the guidelines should be more positive in relation to retaining tissue for genetic purposes.

 

 

National Horizon Scanning Unit

The Chairman had been contacted by the National Horizon Scanning Unit, which would feed information into NICE. He asked members for their views on any genetic technologies which should be included.

 

 

Wednesday 22^nd September 1999

Tuesday 11^th January 2000

May 2000