Abstract
Advances in genetics have meant that the genetic services are now accessed by increasing numbers of patients. One way of dealing with the pressure on services without jeopardising patient care is the inclusion of nonmedical genetic counsellors and genetic nurses in the genetic services team. However, a cohesive approach to the profession has been lacking in Europe, and an educational programme and registration system for European practitioners is required. The aim of this study was to ascertain the type of work undertaken by genetic nurses and counsellors in Europe and the context in which they practised. We used a cross-sectional survey design to collect data from 213 practitioners, either genetic nurses or genetic counsellors, from 18 European countries. Respondents completed the survey online, and data were analysed using descriptive statistics and cross-tabulations. The majority were involved in undertaking the initial contact with the patient (89.9 %) and explaining the genetic test to the patient (91.5 %), while 74 % ordered tests and 91.4 % obtained informed consent for such tests. Psychological support before and after genetic testing was provided by 80.2 % of respondents, and 82.1 % reported regularly managing cases autonomously. While the genetic counselling profession is barely established in some countries, counsellors are able to contribute substantially to patient care as part of the multi-disciplinary team. Further efforts to establish the profession at the European level through a registration process will enhance the confidence in this new group of allied health professionals.
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References
Battista RN, Blancquaert I, Laberge AM, van Schendel N, Leduc N (2012) Genetics in health care: an overview of current and emerging models. Public Health Genomics 15(1):34–45
Cassiman JJ (2010) Quality genetic services for the population, now and in the future. Bull Mem Acad R Med Belg 165(10–12):475–482
Cordier C, Lambert D, Voelckel MA, Hosterey-Ugander U, Skirton H (2012) A profile of the genetic counsellor and genetic nurse profession in Europe. J Comm Genet 3(1):19–24
Gagnon A, Wilson RD, Allen VM, Audibert F, Blight C, Brock J-A, Désilets VA, Johnson J-A, Langlois S, Murphy-Kaulbeck L, Wyatt P (2009) Evaluation of prenatally diagnosed structural congenital anomalies. J Obstet Gynaecol Can 31(9):875
Gregory H, Wordsworth S, Gibbons B, Wilson B, Haites N (2007) Risk estimation for familial breast cancer: improving the system of counselling. Eur J Hum Genet 15(11):1139–1144
Harper PS (2007) A short history of medical genetics. Oxford University Press, Oxford
IDEC (2012) The Spanish Genetic Counselling Society is born. Available at: http://www.idec.upf.edu/en/seccions/idec/noticies.php?id=828. Accessed 22 Jun 2012
Ingles J, Semsarian C (2007) Sudden cardiac death in the young: a clinical genetic approach. Intern Med J 37(1):32–37
Mester JL, Trepanier AM, Harper CE, Rozek LS, Yashar BM, Uhlmann WR (2009) Perceptions of licensure: a survey of Michigan genetic counselors. J Genet Couns 18(4):357–365
Modell B, Darlison M, Birgens H, Cario H, Faustino P, Giordano PC, Gulbis B, Hopmeier P, Lena-Russo D, Romao L, Theodorsson E (2007) Epidemiology of haemoglobin disorders in Europe: an overview. Scand J Clin Lab Investig 67(1):39–69
Oliva A, Brugada R, D'Aloja E, Boschi I, Partemi S, Brugada J, Pascali VL (2011) State of the art in forensic investigation of sudden cardiac death. Am J Forensic Med Pathol 32(1):1–16
O'Shea R, Murphy AM, Treacy E, Lynch SA, Thirlaway K, Lambert D (2011) Communication of genetic information by other health professionals: the role of the genetic counsellor in specialist clinics. J Genet Couns 20(2):192–203
Peshkin BN, Demarco TA, Graves KD, Brown K, Nusbaum RH, Moglia D, Forman A, Valdimarsdottir H, Schwartz MD (2008) Telephone genetic counseling for high-risk women undergoing BRCA1 and BRCA2 testing: rationale and development of a randomized controlled trial. Genet Test 12(1):37–52
Quaid KA (2011) Genetic counseling for frontotemporal dementias. J Mol Neurosci 45(3):706–709
Sahhar MA, Young MA, Sheffield LJ, Aitken M (2005) Educating genetic counselors in Australia: developing an international perspective. J Genet Couns 14(4):283–294
Skirton H, Barnes C, Curtis G, Walford-Moore J (1997) The role and practice of the genetic nurse. J Med Genet 34(2):141–147
Skirton H, Voelckel MA, Patch C (2010a) Using a community of practice to develop standards of practice and education for genetic counsellors in Europe. J Comm Genet 1:169–173
Skirton H, Lewis C, Kent A, Coviello D (2010b) Genetic education and the challenge of genomic medicine: development of core competences to support preparation of health professionals in Europe. Eur J Hum Genet 18(9):972–977
Torrance N, Mollison J, Wordsworth S, Gray J, Miedzybrodzka Z, Haites N, Grant A, Campbell M, Watson MS, Clarke A, Wilson B (2006) Genetic nurse counsellors can be an acceptable and cost-effective alternative to clinical geneticists for breast cancer risk genetic counselling. Evidence from two parallel randomised controlled equivalence trials. Br J Cancer 95(4):435–444
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Skirton, H., Cordier, C., Lambert, D. et al. A study of the practice of individual genetic counsellors and genetic nurses in Europe. J Community Genet 4, 69–75 (2013). https://doi.org/10.1007/s12687-012-0119-8
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DOI: https://doi.org/10.1007/s12687-012-0119-8