Cordier C, Pestoff R, Moldovan R, Serra-Juhe C, Paneque M and Ingvoldstad C
Synlab Genetics, Switzerland Linkoping University Hospital, Sweden Babes-Bolyai University, Romania Universitat Pompeu Fabra, Spain Centro de Investigacion Biomedica en Red de Enfermedades Raras (CIBERER), Spain Universidade do Porto, Portugal Universidade do Porto, Portugal Karolinska Institute, Sweden Uppsala University, Sweden
Posters & Accepted Abstracts: Biochem Mol biol
The need for non-medical health-care professionals working as genetic counsellors has therefore increased rapidly in Europe and worldwide. However, there is no unified approach to genetic counsellors’ role in health-care services in Europe, as in most countries the profession is still emerging and the educational and experiential backgrounds diverge noticeably. This mixed-method study aims to describe the potential added value of genetic counsellors in clinical genetics teams and to explore their tasks and responsibilities in different European countries and to explore how genetic counsellors’ characteristics impact on their tasks in practice. A link to the study-specific online survey was distributed via email. Potential participants were ascertained via national and international associations via snowballing technique. 143 participants providing genetic counselling in Europe, representing 15 countries, responded. (134 were legible for the quantitative analysis). Twentynine were medical geneticists and the remaining were genetic counesllors. Various statistical analyzes was conducted for the quantitative part of the survey. Thematic analyzes were conducted to analyze the openended questions. Whereas most genetic counsellors in Europe perform similar tasks, factors influencing their roles and tasks are associated with the years of experience in the field, not with with their background or education. Genetic counsellors and medical geneticists both agreed that tasks with more psychosocial implications were seen as genetic counsellors’ responsibility while tasks with more medical implications were seen as medical geneticists’ attribution. The ability to establish a quality relationship with consultands was frequently mentioned as one of the strengths of genetic counsellors, as well as a patient-centred approach. In summary, genetic counsellors work in tune with international recommendations and seem to be supportive of multidiciplinary teams where genetic counsellors add a more holistic approach of psychosocial and familial dimensions of genetic concerns. Although the added value of genetic counsellors was manifested, professional recognition of genetic counsellors and appropriate education and training across Europe is still needed in order to support the quality of patients care and safety of practice.