Genetic Registers

Lauren Kerzin‐Storrar, Central Manchester Hospitals Healthcare Trust and University of Manchester, Manchester, UK

Published online: September 2006

DOI: 10.1002/9780470015902.a0005619

The term ‘genetic registers’ has been used to describe a range of entities, including databases of research cases and samples, sources of epidemiological data and clinical record systems; however, the current usage refers to a genetic service that proactively offers genetic counseling and long-term follow-up to extended families affected by specified genetic conditions, over generations. While having a primary aim of promoting ongoing access to genetic counseling services to all family members at risk, the nature of a proactive, family-based service necessitates careful attention to potentially controversial issues.

Keywords: genetic counseling services; confidentiality; proactive counseling; register

 References
    book British Medical Association (1998) Human Genetics: Choice and Responsibility, pp. 68–73, 142–151. Oxford, UK: Oxford University Press.
    book Clarke AJ (1997) "The genetic testing of children". In: Harper PS and Clarke AJ (eds.) Genetics, Society and Clinical Practice, pp. 15–30. Oxford, UK: BIOS Scientific Publishers.
    Dean JCS, Fitzpatrick DR, Farnden PA, Kingston H and Cuisine D (2000) Genetic registers in clinical practice: a survey of UK clinical geneticists. Journal of Medical Genetics 37: 636–640.
    Emery AEH, Brough C, Crawford M, et al. (1978) A report on genetic registers. Journal of Medical Genetics 15: 435–442.
    Fitzpatrick JL, Hahn C, Costa T and Huggins MJ (1999) The duty to re-contact: attitudes of genetic service providers. American Journal of Human Genetics 64: 852–860.
    book Harper PS (1997) "Huntington's disease and the abuse of genetics". In: Harper PS and Clarke AJ (eds.) Genetics, Society and Clinical Practice, pp. 15–30. Oxford, UK: BIOS Scientific Publishers.
    Harper PS, Walker DA, Tyler A, Newcombe RG and Davies K (1979) Huntington's chorea. The basis for long-term prevention. Lancet 2: 346–349.
    Kerzin-Storrar L, Wright C, Williamson PR, et al. (2002) Comparison of genetic services with and without genetic registers: access and attitudes to genetic counseling services among relatives of genetic clinic patients. Journal of Medical Genetics 39: e85.
    Lips CJM (1998) Registers for patients with familial tumours: from controversial areas to common guidelines. British Journal of Surgery 85: 1316–1318.
    Littler M and Harper PS (1989) A regional register for inherited cancers. British Medical Journal 298: 1689–1691.
    book Nuffield Council on Bioethics (1993) Genetic Screening: Ethical Issues. London, UK: Nuffield Council.
    Read AP, Kerzin-Storrar L, Mountford RC, Elles RG and Harris R (1986) A register based system for gene tracking in Duchenne muscular dystrophy. Journal of Medical Genetics 23: 481–586.
    Wilcke JTR (1998) Late onset genetic disease: where ignorance is bliss, is it folly to inform relatives? British Medical Journal 317: 744–747.
    Wright C, Kerzin-Storrar L, Williamson PR, et al. (2002) Comparison of genetic services with and without genetic registers: knowledge, adjustment and attitudes about genetic counseling among probands referred to three genetic clinics. Journal of Medical Genetics 39: e84.

Related Sub-Topics:

Bioinformatics and Genetic Disease | Genetic Counseling | Health Care | Bioethics
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Article Title: Genetic Registers
 
How to Cite close
Kerzin‐Storrar, Lauren(Sep 2006) Genetic Registers. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0005619]