PS23. GENETIC COUNSELLING, GENETIC EDUCATION AND BIOETHICS
HELENA KÄÄRIÄINEN University of Turku, Turku, Finland e-mail: hkaaria@utu.fi
*Corresponding Author:
page: 28

Abstract

Clinical genetics slowly established itself as a medical specialty during the previous century. The slow speed, however, changed to an enormous growth when molecular genetic knowledge started to rapidly increase in 1980s and 1990s. Today, genetic services face an ever-increasing number of requests for diagnostic consultations, genetic tests and genetic counselling. The demand has so far mainly focused on rare Mendelian diseases but recently also the need to approximate genetic susceptibility to more common diseases has increased. Typically in Europe, both patients and samples cross boarders. All this has created the need to harmonize and improve the overall quality of these services. EUROGENTEST (www.eurogentest.org) is a Network of Excellence aiming at improving the quality of these services, especially when related to genetic testing.

Most of the efforts of EUROGENTEST are focused on improving external quality assessment and assurance schemes in genetic laboratories. However, genetic counselling can been seen as part of the genetic testing process and thus one of EUROGENTESTís important tasks is improving the quality of genetic counselling, especially when related to genetic testing. For that, several objectives have been performed or are in the future plans: to collect international recommendations and European national legislation in the field of genetic counselling, to survey the national practices and recommendations with the help of National Human Genetic Societies, and to find out how counselling is performed in reality and how the patients experience it. Based on all this knowledge, minimal criteria of genetic counselling is being drafted and will later be circulated among European clinical geneticists for comments and improvements.

Developing genetic services need different health care personals like well educated MDs of all specialties, medical geneticists, genetic counsellors, genetic nurses and also psychologists, social workers etc specially trained for genetics. At present, education of these professionals has a wide heterogeneity in Europe. Recently, both patientís organisations and professionals have worked together to identify needs and tools to improve education in genetics. The aim of both ESHG Education Committee and EUROGENTEST is to create an (official) European document that defines the minimum core competencies in genetics for different professionals in order to help and promote national initiatives for promoting education and training in genetics.

The rapid development in the field of clinical genetics has also accentuated the need for discussion about the ethical and social issues related to genetics. This becomes even more important if the field really moves towards public health genetics. Ethical issues are totally different if tests and screening programs are offered to (parts of) the population when compared to affected families asking themselves for genetic services.

In my presentation I will focus on genetic counselling but also present shortly the programs dealing with educational and ethical issues within EUROGENTEST.




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