Genetic counseling in European universities: The case of neurodegenerative diseases

<< Background >>Over the last 20 years, genetic tests have gained importance in personalized medicine and disease prevention, especially for healthy individuals who have a family history. Research has demonstrated that genetic testing (GT) for Neurodegenerative Disorders (ND) can be valuable and safe. However, individuals’ understandings of what GT can achieve, what they cannot achieve, and the risks they pose should be more realistic. A GT result can have a negative psychological impact and that depends on the way that healthcare professionals (HCP) disclose the genetic information. Nevertheless, when well-informative and supported Genetic Counseling (GC) sessions take place, the genetic information can cause positive changes which can work as predictive measures for the diseases. Nowadays, because of the lack of training on GC on ND, few HCP are prepared to address the genetic risks and manage the psychological impact of the disclosure to relatives. Thus there is an increased need to develop educational programs on GC. The main aim and central impact of this project are to support people and society to better understand the aims of GT and the usefulness of GC by involving students in an innovative learning and teaching setting. << Objectives >>-Creating an innovative Course on Genetic Counseling (GC) on Neurodegenerative Disorders.-Supporting the introduction of GC Courses in Higher Education Institutions (HEIs) and other institutions. -Developing the “Transnational Implementation Guidelines for GC on Neurodegenerative Disorders”.-Cultivating new competencies, knowledge and new skills of students related to communication, empathy and support.-Supporting families by offering them an innovative GC approach. -Enhancing genetic literacy and understanding of the general public as well as behavioral and day life changes as predictive measures for Neurodegenerative Disorders.<< Implementation >>WP2 Development of GC Methodology: Experts in the field of GC shared existing GC protocols and the partnership created the final Guidelines. A needs analysis, involving a large variety of participants from care and patient organizations, diagnostic institutions and genetic laboratories contacted to define their needs and the specifications of the protocol. WP3 Development and design of the GECONEU course and material: A cross-country comparison of the courses in partnership universities was conducted. The learning materials were developed using also feedback from end-users.WP4 Design, Development and Testing of a Service System: The System which included in the course was developed after the feedback of end-users. WP5 Pilot: It contains the tasks related to piloting the course in 4 HEI’s and local care facilities. Students and HCPs run the course and participated in interactive workshops. They shared feedback which guided the improvements in the course. An LTTA was organised before the pilot to train teachers in the course. A Handbook on how to implement the course was developed.Finally, many dissemination and evaluation actions were conducted.<< Results >>1. ¨TRANSNATIONAL IMPLEMENTATION GENETIC COUNSELING GUIDELINES¨. Experts in the field of GC shared their existing GC protocols and partnerships created the Guidelines. A needs analysis, involving a large variety of participants from patient organizations, diagnostic institutions and genetic laboratories contacted to define their needs and the specifications of the guidelines. 2. AN INNOVATIVE COURSE. The project developed an innovative e-course by involving care organizations, families, HCPs in a co-design process, bringing theory and practice together. The course is available in English, Dutch, German, Greek, Spanish & Turkish. https://www.genecounsel.eu/index.php/test13.SERVICE SYSTEM FOR UNIVERSITIES. The course training material is offered through Software-as-a-Service that can be integrated into any e-learning platform. This canincrease the sustainability and impact of the project's results while promoting students'competencies.4. GUIDELINE HANDBOOK. It supports the implementation of the course. It is set up based on extensive testing of the course in pilots and experiences of 5 different faculties in 5 countries. It also includes proposals with other European courses for extending the knowledge of GC.