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Clinical governance and genetic medicine. Specialist genetic centres and the Confidential Enquiry into Counselling for Genetic Disorders by non-geneticists (CEGEN)
  1. Genetic Enquiry Centre (Web site geneticenquiry/homepage.htm), St Mary’s Hospital, Manchester M13 0JH, UK

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    The concept of clinical governance1 followed the search in most countries for accessible, effective, and economically efficient health services. In England, the NHS Executive’s definition2 of clinical governance includes the rapid detection of adverse events, which are openly investigated, and from which lessons are learned. Confidential enquiries are a way of studying adverse events, for example maternal deaths and perioperative deaths. These enquiries are an established part of British health care because they are a potential tool for improvement and are to be included within the remit of the newly established National Institute of Clinical Excellence (NICE). Their acceptance has depended on their being entirely non-censorious and governed by strict confidentiality. Their effectiveness is being tested3 and is presumably enhanced by regular reports which are covered by the national media. Starting in 1991, the UK Confidential Enquiry into Counselling for Genetic Disorders has shown that the study of adverse events can be applied to the bulk of counselling which is part of the routine work of many specialities.


    The speciality of medical genetics has been extensively documented in the UK.4-11 (“Medical genetics” is here used synonymously with “clinical genetics” to distinguish the speciality; the term “genetic medicine” is used to describe counselling and genetic technologies in many specialities.) In addition, an up to date overview of the strengths, weaknesses, opportunities, and threats to genetic services in 31 nations in Europe12 showed remarkable international agreement about most important issues concerning clinical, technical, educational, research, and ethi-cal matters. In contrast, there is much variation of access, many deficiencies, and poor coordination of services and resources for patients and families with genetic problems. In …

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    • * CEGEN steering committee set up in 1992 (with later co-opted members): Eva Alberman, Martin Bobrow, Ian Lister Cheese, John Dodge, Gareth Evans, Mike Gill, Alastair Kent, Hilary Harris, Rodney Harris (chairman), Anthony Hopkins, June Lloyd, Bernadette Modell, John Northover, Bruce Ponder, Charles Rodeck, Jill Clayton Smith, Tony Taylor, Nicholas Wald, Paula Williamson.