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Background of the project Over the last 20 years, genetic tests have gained importance in personalized medicine and disease prevention, especially to healthy individuals who have a family history of disease or patients who may have a disease resulting from a genetic mutation (Klein, 2020). At risk relatives of the 30 million Europeans affected by genetic conditions may be neither recognised nor managed appropriately due to the lack of knowledge about genetics and the few trained health care professionals (HCP) (McAllister et al, 2015). This contravenes the EU’s aim and European Society of Human Genetics’s goals to create safe, efficient, patient-centered and sustainable health-care systems (European commission Innovation Union, 2011). On the other hand, research has demonstrated that genetic testing for Neurodegenerative Disorders (ND) for asymptomatic relatives of people with neurodegenerative disorders (PwND) for specific genes and mutations can be valuable and safe in certain contexts. However, individuals’ understandings about what genetic susceptibility tests can achieve, what they cannot achieve, and the risks they pose should be more realistic after testing than beforehand (Christensen et al, 2018). A lot of studies have shown that genetic testing increases risks for psychological harm, even among individuals who are at risk or positive for risk genes of ND, may elicit grief, distress, conflict, sadness, relief, guilt, uncertainty and ambivalence and that depends on the way that HCP disclose the genetic information (Rostamzadeh et al, 2019). Nevertheless, when well informative and supported Genetic Counseling (GC) sessions take place, the genetic information can cause behavioral, day life changes (diet, vitamins/medications, physical activity) and enhance decision making that can work as predictive measures for the diseases. Nowadays, because of the lack of trainings on GC on ND, few HCP are prepared to address the genetic risks and to manage the psychological impact of the disclosure to relatives (Manrique de Lara et al, 2018). Given the increased incidence of ND, the availability of Direct to Consumer Testing and the development of the precision medicine, an increased demand for high-quality information on ND genetics likely provided in the form of GC by well-trained health care professionals (HCP), is anticipated. All these global trends and challenges of genetic testing affect Higher Education Institutions (HEI)’s and their departments in the field of health as they aim to equip their students to become societal involved, well-educated HCPs. There is a crucial need to use the existing knowledge and experiences from a variety of disciplines on the field of genetics to build an innovative learning method and course which will include the best practice guidelines on how future HCP need to implement GC, which is the most appropriate method to introduce genetic testing to patients and people at genetic risk. The main aim and central impact of this project is to support people and society to better understand the aims of genetic testing and the usefulness of genetic counseling by involving students in an innovative learning and teaching setting. This project will provide the opportunity to take all the factors of an appropriate training course to society into account by involving the families of PwND in the development of the learning and teaching outcomes consequently improving their visibility and enhancing their level of knowledge. |
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Project Objectives
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GECONEU Outputs The project is divided in different WPs with different PRs. These PRs lead to the following main 4 outcomes: ¨Best Genetic Counseling Protocol¨ in Europe (PR1) Experts in the field of GC will share their existing GC protocols and partnership will create the final European Guidelines. A needs analysis, involving a large variety of participants from care and patient organizations, diagnostic institutions and genetic laboratories will be contacted in order to define their needs and the specifications of the protocol. The Methodological Guide will be the final result. An innovative creative course (PR2 and PR4) The project will develop an innovative interactive course that can be part of the curriculum of HEI’s in Europe. This will be done by involving care organizations, families, HCPs in the field of neurology, genetics and psychology in a co-design process, bringing theory and practice together, and taking the workplace as a starting point for new course material in education. Service System for Universities' e-learning platforms (PR3) The training material of the course will be offered through a Backend-as-a-Service (SaaS), which will be able to integrate into any e-learning platforms, increasing the sustainability and impact of the results of the project, while promoting the competencies of students and giving them the possibility to exchange results internationally. Guideline handbook (PR4) Finally, the result will be a guideline handbook, that helps HEIs across Europe to implement the training, the service system and the teaching material, supporting the impact, replicability and sustainability of GECONEU outcomes. This handbook will be set up based on extensive testing of the learning material and service system in pilots and experiences of 4 different faculties in 4 countries. The handbook will facilitate the implementation in HEIs throughout Europe. |
This project is co-funded by Erasmus+ Programme of the European Union under grant agreement