Using a community of practice to develop standards of practice and education for genetic counsellors in Europe

University of Plymouth, Plymouth, UK, .
Journal of community genetics 12/2010; 1(4):169-73. DOI: 10.1007/s12687-010-0024-y
Source: PubMed


The profession of genetic counselling is developing in Europe in response to the increased need for genetic healthcare. Standards of education and professional practice are needed to ensure that patients are provided with genetic counselling of an appropriate quality. However, such standards need to be relevant to practitioners in many different national and healthcare settings. In order to develop appropriate standards and a code of practice to guide professionals in Europe, we formed a community of practice that includes genetic nurses and counsellors, plus other interested health professionals, from 23 European countries. With reference to the European core competences for genetic counsellors, the members of the network developed a set of professional standards for practice, educational standards and a code of practice. It is strongly suggested that the title genetic counsellor should become a protected title in Europe and that practitioners are educated via a master level degree in genetic counselling. These standards have been approved by the members of the network and the existing professional national societies for genetic nurses and counsellors. They provide a foundation for building the profession of genetic counselling in Europe and for provision of equitable care across European countries. Further work is now needed to ensure that appropriate educational opportunities exist to train practitioners and that clinical teams utilise the expertise of these professionals appropriately to enhance the care offered to families at risk of or affected by genetic conditions.

Download full-text


Available from: Marie-Antoinette Voelckel,
  • Source
    • "Genetic counselling is a holistic process. The counselor needs to be sensitive to the specific needs and expectations of consultands as well as their personal and social backgrounds , so that persons affected by or at risk of a genetic condition may be able to make better informed decisions and adjust to their situation (Skirton et al. 2010). Among many other testing options available, presymptomatic testing (PST) for inherited adult-onset conditions is provided by genetic and some other specialist health services (such as oncogenetics or cardiogenetics). "
    [Show abstract] [Hide abstract]
    ABSTRACT: Genetic counselling must be offered in the context of presymptomatic testing (PST) for severe late-onset diseases; however, effective genetic counselling is not well defined, and measurement tools that allow a systematic evaluation of genetic practice are still not available. The aims of this qualitative study were to (1) recognize relevant aspects across the whole process of genetic counselling in PST for late-onset neurodegenerative disorders that might indicate effective practice from the consultand's perspective; and (2) analyse aspects of current protocols of counselling that might be relevant for successful practice. We interviewed 22 consultands undergoing PST for late-onset neurological disorders (Huntington disease, spinocerebellar ataxias and familial amyloid polyneuropathy ATTRV30M) in the three major counselling services for these diseases in Portugal. The main themes emerging from the content analysis were (1) the consultand's general assessment of the PST process in genetic services; (2) appropriateness and adaptation of the protocol to the consultand's personal expectations and needs; and (3) consultand's experience of the decision-making process and the role of engagement and counselling skills of the counsellor. Participants also provided a set of recommendations and constructive criticisms relating to the length of the protocol, the time gap between consultations and the way results were delivered. These issues and the construction of the relationship between counsellor and counselee should be further investigated and used for the improvement of current protocols of counselling.
    Journal of Genetic Counseling 01/2013; 22(4). DOI:10.1007/s10897-012-9561-3 · 2.24 Impact Factor
  • Source
    • "Such endeavours require a significant policy shift in the current provision of cancer genetic counselling in Portugal, and, perhaps more importantly, in its planning. Theoretical and practical education is required in order to gain understanding and skills in implementing specific interventions (Jacobsen 2009); besides the harmonisation of practices and professional recognition, the training of (non-) genetics healthcare professionals is currently one of the greatest challenges for genetic counselling across many countries (Skirton et al. 2010). Although Portugal is among the group of European countries having specific legal provisions on genetic counselling practice (EuroGentest and Unit 3 Expert Group 2008), the outlined constraints emerge as encapsulated by the inexistent tradition of psychosocial practice in genetics settings, which may in some extent perpetuate the assumption that family support and genetics are incompatible matters. "
    [Show abstract] [Hide abstract]
    ABSTRACT: This article examines genetics healthcare professionals' opinions about a multifamily psychoeducational programme for hereditary cancer susceptibility families, implemented at a Portuguese genetics service. Their views on how a family-oriented approach is envisioned to be incorporated in Portuguese genetic counselling services are also reported. Six focus groups and three individual interviews were undertaken comprising 30 professionals working in the provision of genetic counselling and genetic counsellor trainees. Participants were given a page-summary describing the intervention and asked to comment the strengths and limitations of the multifamily intervention. All interviews were fully transcribed and analysed using the constant comparison method. The qualitative analysis generated data comprising four thematic categories in relation to the professionals' views: (a) usefulness of the programme; (b) programme's methodological and practical obstacles; (c) genetics services constraints; and (d) suggestions for improving the programme and further family-oriented interventions. We reflect on the reported views examining the intervention, and on how current constraints of genetic services limit the provision of psychosocial support for cancer susceptibility families. The implications of these findings regarding the purpose of genetic counselling are discussed. Results may sensitise stakeholders and policy makers for the need to deliver family-based services in cancer genetic counselling, with adequate planning and collaborative involvement of different professionals.
    Journal of community genetics 02/2012; 3(4). DOI:10.1007/s12687-012-0079-z
  • Source
    • "While appropriately trained genetic counsellors and genetic nurses can offer clinical care for patients seeking information or testing for a wide range of genetic conditions (Nuffield Trust Genetics Scenario project 2000), there is at present no legal or voluntary regulation of genetic counsellors in many European countries or in Europe as a whole. Following the acceptance of the specialisation of medical genetics at the European level (European Commission 2011a, b), The European Society of Human Genetics is making efforts to set up a system of accreditation for genetic counsellors, to ensure safe practice (Skirton et al. 2010b). However, in preparing for the development of such a system , it is necessary to have data on the number of genetic counsellors working in each country and the framework around their practice. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Quality genetic healthcare services should be available throughout Europe. However, due to enhanced diagnostic and genetic testing options, the pressure on genetic counselling services has increased. It has been shown in many countries that appropriately trained genetic counsellors and genetic nurses can offer clinical care for patients seeking information or testing for a wide range of genetic conditions. The European Society of Human Genetics is setting up a system of accreditation for genetic counsellors, to ensure safe practice, however there has been little information about the practice and education of non-medical genetic counsellors in Europe. To collect baseline data, we approached key informants (leaders in national genetics organisations or experienced practitioners) to complete an online survey, reporting on the situation in their own country. Twenty-nine practitioners responded, providing data from 18 countries. The findings indicate huge variation in genetic counsellor numbers, roles, and education across Europe. For example, in UK and The Netherlands, there are more than four counsellors per million population, while in Germany, Hungary, Turkey, and Czech Republic, there are no non-medical counsellors. There are specific educational programmes for genetic counsellors in seven countries, but only France has a specific governing legal framework for genetic counsellors. In the post-genomic era, with added pressure on health systems due to increases in availability and use of genetic testing, these disparities are likely to result in inequalities in service provided to European citizens. This study underpins the need for a coherent European approach to accreditation of genetic counsellors.
    Journal of community genetics 12/2011; 3(1):19-24. DOI:10.1007/s12687-011-0073-x
Show more