THE ROLE OF PROFESSIONAL BODIES

1. Joint ACC/CMGS MRCPath Part 2 Study Day THE ROLE OF PROFESSIONAL BODIES

2. What is a professional body? • ACC / CMGS / CGS / AGNC/ BSHG • ROYAL COLLEGES / RCPATH / RCP / RCOG / RCPCH/ RCGP • HGC / UKGTN / HPC / GENCAG / NSC / DoH GENETICS TEAM • JOINT COMMITEE ON MEDICAL GENETICS

3. PROFESSIONAL BODIES • EACH HAS AN ADMINISTRATIVE STRUCTURE • ALL ARE CORPORATE MEMBERS OF BSHG • ACC/CMGS LOOKING AT IMPLICATIONS OF RAPIDLY DEVELOPING GENETIC TECHNOLOGIES AND CHANGES IN CLINICAL SCIENTIST AND TECHNOLOGIST TRAINING

4. ACC

6. CMGS

7. PROFESSIONAL BODIES

12. BSHG COUNCIL • CHAIRMAN (ROB ELLES)‏ • CHAIRMAN-ELECT • GENERAL SECRETARY • TREASURER • PRESS OFFICER • EXECUTIVE OFFICER (RUTH COLE)‏ • CO-OPTED (DOH, JCMG, DIAN DONNAI; EDUCATION; PHGF)‏ • REPRESENTATIVES FROM ACC (2); CMGS (2); AGNC (2); AMC; CGG; CGS (2); SPC; NEWSLETTER EDITOR; WEBMASTERS (2); ELECTED ORDINARY MEMBERS (3)‏

14. RCPath STRUCTURE • COUNCIL • EXECUTIVE • SPECIALIST ADVISORY COMMITTEES (Genetics and Clinical Embryology)‏ • REGIONAL COUNCILS • EDUCATION & PUBLICATION DEPARTMENTS

15. Current College activities • Overseeing the education and training of specialists in all pathology disciplines. • Setting standards of practice and organising assessment by examinations. • Monitoring the appointments of consultants in pathology. • Updating its members through scientific meetings and symposia. • Ensuring and monitoring a programme of continuing professional development for its members. • Publication of guidelines on aspects of best practice. • Maintaining standards of practice by promoting clinical audit and quality assurance and supporting accreditation for all pathology laboratories. • Funding research in association with industry and other partners in science. • Advising government departments, national organisations, medical and academic bodies on all matters relating to pathology. • Promoting public understanding of pathology.

16. Innovation • Because of its commitment to fostering research and the multidisciplinary approach to pathology, The Royal College of Pathologists is the only Medical Royal College to admit non-medical scientists, who now comprise a fifth of its Members and Fellows • It is the only organisation in Europe to work towards the improvement of standards and practice in pathology through examinations and training programmes. • The College was one of the pioneers in the developments of continuing professional development (CPD) to enable its members to keep up to date with medical and scientific advances. • It was instrumental in setting up the organisation Clinical Pathology Accreditation UK (CPA) for the purpose of accrediting all pathology laboratories.

17. TitleThe Group shall be known as “The Royal College of Pathologists’ Trainees Advisory Committee” (RCPath TAC). Terms of referenceThe Royal College of Pathologists’ Trainees Advisory Committee terms of reference are as follows. To advise the Council and Executive of The Royal College of Pathologists of matters of concern to trainees and seek ways to respond to these concerns To inform members of Council’s activities and to consider matters suggested for discussion by Council and Specialty Advisory Committees. To disseminate information about College activities amongst all pathology trainees. To report regularly to Council on the deliberations and activities of the Trainees Advisory Committee. The minutes to go to Council and a representative to attend Council meetings and give a verbal report. A written report of Trainees Advisory Committee’s activities should be made available for The Royal College of Pathologists’ Annual Report and the College Bulletin. Each trainee on the Committee should report twice a year, either in writing or orally, on the relevant specialty committees and sub-committees on which they sit.

18. SAC MEETING • Matters arising from the minutes • a) Joint Committee on Medical Geneticsb) Clinical Embryologists • c) Metabolic Biochemistry • Chairman’s report • Issues arising from the meeting of the SAC on • Pre/Perinatal/Paediatric Pathology • RCPath Council meetings • Examinations and Training • Trainee Issues • National Assessors for clinical scientists • DoH Proposed Changes to Pre- and Post-Registration • Training for Clinical Scientists • RCPath and Department of Health Life Sciences Task Force • Academic Activities • National Pathology Week • RCPath Lay Advisory Committee • RCPath E-Learning initiative

19. PROFESSIONAL ASSOCIATIONS/ QUANGOS

20. Antenatal & Newborn Screening Programme New steering group to oversee implementation of NHS Fetal Anomaly Screening Programme (JCMG represented)‏

21. The UK National Screening Committee is chaired by the Chief Medical Officer for Scotland and advises Ministers and the NHS in all four UK countries about all aspects of screening policy and supports implementation. Using research evidence, pilot programmes and economic evaluation, it assesses the evidence for programmes against a set of internationally recognised criteria. Assessing programmes in this way is intended to ensure that they do more good than harm at a reasonable cost. In 1996, the NHS was instructed not to introduce any new screening programmes until the NSC had reviewed their effectiveness. This was communicated in EL96(110).

24. The UKGTN was established in 2002. 31 NHS Molecular Genetic Laboratories are members of the network. The gene dossier process was developed to evaluate new genetic tests in order to inform NHS commissioners whether particular genetic tests should be funded by the NHS. UKGTN evaluates tests for germ line disorders where nucleic acid is the analyte.

27. SATUTORY AUTHORITY WITH DIRECT PARLIAMENTARY ACCOUNTABILITY Welcome to the HPC website We are a regulator, and we were set up to protect the public. To do this, we keep a register of health professionals who meet our standards for their training, professional skills, behaviour and health. We currently register over 180,000 professionals from 13 professions.

30. VOLUNTARY REGISTERS Medical Technical Officers Genetic Counsellors

32. HUMAN GENETICS COMMMISSION 2007 22 MEMBERS Acting Chair Sir John SulstonMembers Baroness Helena Kennedy QC Professor Brenda AlmondProfessor Stephen BainDr Celia BrazellProfessor Sarah Cunningham-Burley Dr Paul Debenham Dr Frances FlinterMrs Ros GardnerProfessor John Harris Mr Michael HarrisonProfessor Christopher HigginsMr Alastair KentDr Rosemary Leonard Ms Alice MaynardMs Lola Oni OBE Dr Christine PatchMr Peter Sayers Representatives of the Chief Medical Officers . Dr Anita Thomas (England)Professor Angus Clarke (Wales)Dr Paul Darragh (Northern Ireland)Dr Rosalind Skinner (Scotland)

33. In 'Genes Direct (2003)' the HCG recommended there should be stricter control on genetic testing, without calling for any outright prohibitions. In 'More Genes Direct (2007)', the HCG made further recommendations.

34. JOINT COMMITTEE ON MEDICAL GENETICS

35. JOINT COMMITTEE ON MEDICAL GENETICS

36. THE JOINT COMMITTEE ON MEDICAL GENETICS UKNSC N. IRELAND CGS SCOTLAND RCPCH WALES GIG PHG FOUNDATION RCGP RCP PATIENT & CARERS ACC + TRAINEE CMGS + TRAINEE BSHG NGEDC DoH GENETICS RCOG RCPATH BSHG RCP NGRLs BSHG GENCAG UKGTN

38. RE-PUPLISH 2009

39. CMGS CURRENT WORKING GROUP LOOKING AT IMPLEMENTATION OF GENETIC TESTING UTILISING FREE FETAL NUCLEIC ACIDS Events however have overtaken this process with the publication today of a hitherto embargoed paper by Fan et al (see attachment) and the recent press release by Sequenome in which the latter have stated their intention of marketing a Down syndrome NIPD test in June 2009.  The press have picked up both initiatives and have approached Lyn Chitty (who is the PI on a multi-centred NIHR grant looking at NIPD implementation in the NHS) and myself as the chair of the JCMG (commissioners of the working party) to comment today CHAIRPERSON CMGS, OCTOBER 2008

40. SHOULD YOU GET INVOLVED?