Confidential inquiries should be funded in clinical genetics

BMJ 2001; 322 doi: https://doi.org/10.1136/bmj.322.7293.1061 (Published 28 April 2001) Cite this as: BMJ 2001;322:1061
  1. Kirsty Challen, research assistant (kirstychallen@hotmail.com),
  2. Hilary J Harris, research associate,
  3. Rodney Harris, emeritus professor (medical genetics),
  4. Bernadette Modell, emeritus professor (community genetics),
  5. Bruce Ponder, professor,
  6. Charles Rodeck, professor
  1. Genetic Enquiry Centre, St Mary's Hospital, Manchester M13 0JH
  2. Department of Primary Care and Population Sciences, Royal Free and University College London Medical School, London N19 5NF
  3. CRC Human Cancer Genetics Research Group, Box 238, Level 3, Laboratories Block, Addenbrooke's Hospital, Cambridge CB2 2QQ
  4. Department of Obstetrics and Gynaecology, University College London Medical School, London WC1E 6HX

    EDITOR—The confidential inquiry into genetic counselling by non-geneticists (CEGEN) investigated free personal choice in consent for genetic screening, testing, or intervention in clinical records of non-directive genetic counselling. It audited 621 pregnancies affected by Down's syndrome in women over 34; 271 infants with neural tube defects; 46 infants with cystic fibrosis who had a full sibling with cystic fibrosis; 172 pregnancies affected by thalassaemia; and 212 people with multiple endocrine neoplasia type II. Adverse events were sought when cases lacked documentation of informed choice. …

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