Article

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

ABSTRACT

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

Full-text

Available from: Marie-Antoinette Voelckel
  • Source
    • "In addition, as many smaller countries do not have educational programmes for genetic counsellors, many will be trained in one country and work in another. Guidelines for uniform genetic counsellor education are needed to ensure the quality of professional practice, leading to equitable services for patients (Skirton et al. 2010a, b). "
    [Show abstract] [Hide abstract]
    ABSTRACT: The need for appropriately trained genetic counsellors to support genetic healthcare is now acknowledged. However, while programmes for education of genetic counsellors exist in a number of countries, these do not conform to any specific international standards. As genetic techniques, educational standards and professional standards have been evolved, and with increasing mobility of genetic counsellors, it is of great importance to have some comparison of education and training between different countries. This systematic review was conducted to determine the components of educational programmes for genetic counsellors worldwide that have been published in peer-reviewed literature.Databases were searched for studies published in English from 2000 to 2014 related to the topic.We identified 406 potential papers, of these, 11 studiesmet the inclusion criteria. The findings indicate that, in most cases, the theoretical components of genetic counsellor programmes conform to the recommendations and requirements of relevant professional bodies. However, clinical preparation of genetic counsellors in real-life professional practice settings seems to be less well addressed as this is essential to ensure genetic counsellors are able to provide safe patient care after graduation. Further work to gain agreement internationally on genetic counsellor education is needed. Keywords Geneticcounsellor .Education .Clinical practice .Programme content
    Full-text · Article · Oct 2015 · Journal of community genetics
  • 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.
    Full-text · Article · Jan 2013 · Journal of Genetic Counseling
  • 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.
    Full-text · Article · Feb 2012 · Journal of community genetics
Show more