Genetic Counselling Profession in Europe

Abstract

Genetic healthcare has developed as a specialty in Europe over the past five decades and initially services were provided by medical specialists. However, due to changes in awareness of the psychosocial impact of genetic conditions, the amount of new options available to families and the consequent workload increase, clinical genetic services are now frequently provided by multidisciplinary teams. In many European countries, nonmedical genetic counsellors are working as part of the clinical team, providing both information and support for individuals and families at risk of or are affected by genetic conditions. Many genetic counsellors have a background in nursing or other health profession or have completed a Master level degree in genetic counselling. The European Board of Medical Genetics has supported genetic counselling as a profession in Europe through the development of standards of competence, promoting educational pathways for practitioners and managing a registration system for genetic nurses and genetic counsellors.

Key Concepts

  • Awareness of human heredity was advanced in the nineteenth century through the work of Mendel and Galton.
  • Specialist clinical genetic services were established in Europe in the mid‐twentieth century.
  • Genetic counselling is a task that may be undertaken by appropriately trained practitioners from a range of health professions.
  • Professional genetic counsellors are (nonmedical) practitioners with a background in one of the health professions or have undertaken a Master degree in genetic counselling.
  • Genetic counsellors provide information, discuss options, support adjustment and facilitate the client to make decisions.
  • Genetic counsellors are specially trained to offer the client psychological support.
  • There are disparities in the ways in which genetic counsellors work in different European countries.
  • In Europe, where different health and educational systems exist in each country, a uniform standard of competence is needed to ensure patient safety.
  • The European Board of Medical Genetics has developed standards of competence and is promoting educational pathways for practitioners.
  • The European Board of Medical Genetics assesses practitioners and registers those who are assessed as competent.

Keywords: genetic counsellor; genetic nurse; counselling; professionalism; competence; multidisciplinary team; registration

References

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Further Reading

Ad Hoc Committee on Genetic Counseling, American Society of Human Genetics (1975) Genetic counseling. American Journal of Human Genetics 27: 240–242.

Bennett RL (1999) The Practical Guide to the Genetic Family History. New York: Wiley‐Liss.

Cattini P and Knowles V (1999) Core competencies for clinical nurse specialists: a usable framework. Journal of Clinical Nursing 8 (5): 505–511.

Harper PS and Clarke AJ (1997) Genetics Society and Clinical Practice. Oxford, UK: Bios Scientific.

Skirton H, Patch C and Williams JK (2005) Applied Genetics in Healthcare – A Handbook for Specialist Practitioners. Abingdon: Taylor and Francis. ISBN 1-8599-6274-2.

Skirton H and Patch C (2009) Genetics for the Health Sciences – A Handbook for Clinical Practice. Oxford, UK: Scion Publishing Ltd.

Web Links

EuroGentest project, http://www.eurogentest.org

Health Education England, Genomics Education Programme, https://www.genomicseducation.hee.nhs.uk

Telling Stories: Understanding Real Life Genetics, http://www.tellingstories.nhs.uk/

Genetic Nurse and Counsellor Professional Branch Board, European Board of Medical Genetics, https://www.eshg.org/471.0.html

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Paneque, Milena, Moldovan, Ramona, Cordier, Christophe, Serra‐Juhé, Clara, Feroce, Irene, Bjørnevoll, Inga, Lambert, Debby, and Skirton, Heather(Aug 2016) Genetic Counselling Profession in Europe. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0005632.pub3]