ABOUT THE CGS

About the CGS

The Clinical Genetics Society (CGS) was set up in 1970 to bring together doctors and other professionals involved in the care of individuals and families with genetic disorders, with the following aims:

to advance and promote the science and practice of Clinical Genetics
to bring together workers who have a common interest in Clinical Genetics
to understand, prevent, cure and alleviate conditions with a genetic aetiology
to publish and disseminate reports, statements, and research findings

Since its creation, the CGS membership has increased steadily to over 400 members from around the world but principally in the UK. The aims have broadened, and now include:

promoting and facilitating education for the genetics community, other health care professionals, those outwith the profession, and the wider public
encouraging high standards of training for professionals within Clinical Genetics
facilitating research into basic human genetics and genetic disorders
maintaining excellent links with patient groups
continuing constructive dialogue with government and other politicians on genetics-related issues

At the Annual General Meeting in 2011, members voted to adopt a revised constitution which can be downloaded here.

Minutes of the Annual General Meeting of the Clinical Genetics Society held Thursday, 11 March 2010, Artis Zoo Amsterdam

The meeting started at 12:15. It was attended by 69 people.

The power point presentation from the meeting is attached.

President’s Report:

· CGS is in good shape and lead by an enthusiastic and hard working council. Thanks to Alan Fryer there are now clear structures and terms of reference for the subgroups.

· Submissions and documents: House of Lords enquiry received evidence from several people. A report has been published which conveys enthusiasm for the potential of new advances and identifies challenges for the NHS and the need for large resources for data storage. It perhaps under estimates the familiarity that clinical geneticists already have with multifactorial disorders.

· The Department of Health response to this does not commit to a new white paper, focus is on what is in place already, but commits to establish a human genomic strategy group in an institute of biomedical informatics.

· JCMG guidance on consent and confidentiality, also CGS guidance on the genetic testing of children is being reviewed by Anneke Lucassen. The latter is developing a more pragmatic and less dogmatic approach to dealing with such testing.

· Specialised Services: Definition set #20 for Clinical Genetics has been finished with revisions. Dian Donnai’s comments were very extremely helpful for this. It confirms that clinical genetics will continue to be commissioned as a specialised service.

· The genetic advisory board for CfH is making slow progress. Carole Gardiner was thanked for her hard work on this. Amanda Collins and Bronwyn Kerr are now working with CfH.

· HCG survey on PGD identified gross inequality in terms of funding and the long time that it can take to make a decision.

· HCG consultation on DTC tests: CGS responded to this, emphasising situations in which genetic counselling was required, and identified concerns about the NHS ‘picking up the pieces’.

· BSHG conference and the CGS spring meeting will remain as separate meetings by general consensus.

· NICE Guidelines: Contributions had been made by Birgitta Bernhardt and Mick Parker on autism and Charu Deshpande on neonatal collapse.

· The lead clinicians group has had many discussions about the 18-week pathway, tariff arrangements and six week diagnostic wait. Reporting times are generally much improved. Work is continuing on quality indicators and with the CfH on the incorporation of genetic data into the EPR. It is recognised that there is variation in the quality of commissioning and the relationship with commissioners in different Regions. Bronwyn Kerr and other lead clinicians were thanked for their hard work.

· International links: The CGS international scholarship for 2010 has been awarded to Dr K M Girisha from India who will attend the clinical genetics centre in Manchester for a week and attend the BSHG meeting at Warwick.

There is now pan European recognition of clinical genetics as a specialty.

· Specialist certificate examination: Mary Porteous is leading work on this. An MCQ has been ruled out on grounds of expense and an amended part 1 MRCPath will be developed. Approximately 10 trainees will sit the exam each year. Volunteers are required to set and mark the exams. There will be no set pass quota; the purpose of the exam is to demonstrate knowledge.

· Clinical Governance Committee: Sarah Smithson has taken over the lead for this subcommittee. The remit is:

Setting Evidence based standards for clinical genetics practice.
Reviewing standards set by others which apply to clinical genetic practice.
Developong a framework for monitoring and reviewing the standards in clinical generics practice.
Provision of advice on clinical governance issues to CGS council and its subcommittees are working parties.
Represent CGS on other appropriate groups.
It is expected that systems for delivering standards will be developed locally.

· Work in progress of the clinical governance committee includes issues of patient safety, patient experience and involvement, clinical effectiveness and quality metrics. Data has been collected from each centre about local clinic governance arrangements and issues. Information is also being sought from the NHS litigation authority to try to ascertain which, if any, claims had been in relation to genetics. Sarah Smithson is happy to receive any suggestions or requests for further projects.

Website: Summaries of the council minutes are now on the website. All documents on the website will be systematically reviewed. Volunteers to help with this are welcome. The website will be archived by a joint Welcome/British library collaboration. Adam Shaw was thanked for his hard work on maintaining the website.

Last year’s AGM minutes have been on the website. No comments or amendments have been received. They were accepted as an accurate record of last year’s AGM.

· Other issues:

Medical legal work: The CGS office has a list of individuals interested in undertaking medical legal work on the areas of interest.

· The Carter lecturer for 2010 is Martin Bobrow. Any suggestions for 2011 are welcome.

· Recruiting into clinical genetics: Council has agreed financial support for careers fairs, which is available for anyone attending such an event.

· ACCEA All CGS nominations for the last year were successful. A number of people have been nominated this year, but the results are not yet available.

· Communication: Cascading information through the CGS Reps group has not been effective and such information will now be cascaded through the Lead Clinicians Group.

· Deciphering Developmental Disorders has been funded by the Health Innovation Challenge fund (partnership project between 23 Regional Genetics Centre and the Welcome Trust Sanger Institute).

Revalidation - Alan Fryer

Alan has represented CGS at various meetings on revalidation organized by the RCP. Details can be found on the attached slides.

· The domains and attributes of the GMC’s revised frame work for appraisal and assessment include knowledge skills and performance, safety and quality, communication partnership and team work and maintaining trust.

· The RCP are producing a framework of evidence to support revalidation which will include some items on a core check list and other items on an optional check list. Other tools such as an E-portfolio and on the job teaching assessment tools are being considered. There is likely to be an open book knowledge assessment and there are active discussions with J Med Genet about this.

· We were asked if there were any specialty specific issues to include in the framework and we made the recommendation (not mandated) that those practicing dysmorphology should attend at least one national or regional dysmorphology meeting per year. We were also asked for specialty-specific questions for an addendum to the RCP MSF. We included items on the quality of written communications, approach to ethical issues, the use of appropriate investigations and appropriateness of referrals to other specialists, appropriate discussion with colleagues about difficult cases and following guidelines in relation to presymptomatic testing.

General Secretary’s report - Elisabeth Rosser

The present membership of the societies is 441 (In January 2009, there were 453 members) 15 new members have joined this year.

· There have been several changes in Council. Peter Turnpenny has been elected as President elect. Alan Fryer is demitting office as vice-president. Angie Brady and Teresa Homfray are demitting officer as Council members. Sahar Mansour and Geoff Woods were elected unopposed as members of Council. Sue Huson has stepped down as news letter editor and will be replaced by Natalie Canham. Sue Holder has stepped down as manpower representative and JCMG representative.

· Everyone who has contributed to Council this year was thanked, particularly those who are leaving office, especially Alan Fryer.

Ruth Cole, Eileen Connop, and Margaret Lynock were thanked for their hard work on behalf of the society.

Treasurer’s report- Mandy Collins

The accounts for the last year were presented and formally approved.

Activity has been low this year as the CGS meeting was held in Amsterdam and this international scholarship has not yet been paid for.

· Income: £11,118.40, expenditure £8,557.85 pence, surplus £2560.45, bank account balance £53,772.15. It was suggested that CGS should consider providing support for travel to meetings for some individuals.

Academic subcommittee - Judith Goodship

An ACF meeting was held in February 2009 and attended by nine trainees. They found this very useful. A young researcher’s forum was held at BSHG. Feedback for both meetings was very positive.

· Mentoring for trainees (separate from supervision): Is something that would be welcomed by the majority of trainees and will be discussed at Council.

Conference organizer’s report - Daniela Pilz

The Dutch organisers of the meeting were thanked for arranging an efficient and informative meeting. 11 hours CPD approval has been obtained from the RCP. Then next CGS conference will be held on March 10, 2010 at SOAS, London

Discussion of Report on Genetics in Mainstream Medicine - President

· This report was commissioned by the UKGTN and aimed at commissioners, especially for those commissioning mainstreams services, so that they are aware of the need for funding for genetics on top of the already provided specialist commissioning. UKGTN wishes to ensure that scientific advances in genetics are used to enhance patient care while protecting budgets for specialist genetic services. They recognise that increasing numbers of genetic tests are available for diagnostic and management use, but the interpretation of such test is becoming more complicated. It will not be possible for every patient having diagnostic genetic testing to have this through a geneticist. However, the skills of geneticists are essential to help with rare diagnoses and in the interpretation of difficult and unusual results as well as providing a genetic counseling and testing in certain situations.

· Clinical genetics will continue to be commissioned as a specialised service. There are many different models of multidisciplinary clinics and the help of geneticists is needed to describe and quantify the genetics input needed across other areas of medicine in order to help mainstream commissioners plan and pay for this.

· Geneticists may well be involved in treatment trials in the not too distant future. This report also identifies the need to increase the capacity of the specialist work force in both clinical and laboratory geneticists. The report has been welcomed by JCMG, responding on behalf of the BSHG and constituent bodies, as well as the Royal Colleges, and by the UKGTN. However, there have been some concerns raised from a few members of CGS, even though the majority of responses received have been positive. As there has been a wide spectrum of view it has been difficult to produce a consensus view from CGS without diluting the strength of the expressed opinions.

· CGS therefore proposes not to send in a unified response, but an extension to the deadline has been negotiated – the deadline has been extended to 15^th March 2010. Individual members were encouraged to respond.

ClinGenSki

· This was held for the first time this year. Anyone who is interested in attending next year should contact Susan Huson.

The meeting ended at 01:05.