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Project

Erasmus+ Key Action 2 : Genetic counselling in European universities: The case of neurodegenerative diseases - GECONEU (EUPOM118)

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 the European Society of Human
Genetics’s goals to create safe, efficient, patient-centered and sustainable healthcare 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 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 in 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 are 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.
Date:1 Nov 2021 →  30 Apr 2024
Keywords:Genetic Counselling, neurodegenerative diseases, health care
Disciplines:Health information systems of medical informatics
Project type:Collaboration project