GECONEU - Genetic counseling in European universities: The case of neurodegenerative diseases

In the last 20 years, genetic testing has gained importance in personalized medicine and disease prevention, especially for healthy people with a family history of a disease or for patients with a genetic mutation. However, there is still much skepticism surrounding the usefulness and benefits of genetic testing.

Ace Alzheimer Center Barcelona, together with 5 other European entities, form the Geconeu Council, the body in charge of promoting the new university-level training project on genetic counseling applied to neurodegenerative diseases, which aims to improve society's knowledge of the benefits of genetic testing.

What is genetic counseling?

Genetic counseling is a communication process that consists of counseling individuals and families affected by an inherited genetic condition to help them understand and adapt to the medical, psychological and familial implications of genetic contributions to the disease.

The importance of genetic counseling

Genetic studies open up a range of possibilities for personalized medicine and disease prevention, especially for those healthy people who have a family history and a higher genetic risk of developing the disease. However, the lack of knowledge about genetics at the population level and the poor training of healthcare professionals makes it very difficult to identify people at genetic risk and, even more, to treat them.

The way in which the healthcare professional reports genetic results is decisive. Thus, a poor approach may cause pain, distress, conflict, uncertainty or sadness in the patient. Instead, when proper training and genetic counseling sessions are conducted, this information can be very valuable and lead to changes in the patient's behavior and habits (nutrition, medications, physical activity), functioning as preventive measures.

An innovative training program

GECONEU's objective is to develop an innovative learning method to train students in the health sector in genetic counseling, so that they can transfer it to their professional practice and promote the benefits and usefulness of genetic testing among society.

Organization of the program

The program is divided into the following phases:

• Development of the "Best Genetic Counseling Protocol". This is a European protocol that will unify in a single document the already existing protocols of experts in the field of genetic counseling. In addition, 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 result will be a final Methodological Guide, which will be the basis for a common European-wide approach to provide effective and safe genetic counseling.
• Development of an innovative and interactive training course. The design of the course will be carried out jointly between care organizations, families and health professionals in the fields of neurology, genetics and psychology. The aim of the course is to train students in genetic counseling and how it should be offered to patients. The process will combine online, presential, theoretical and practical methods in which students will be able to test the skills acquired by working directly with families of patients with neurodegenerative diseases.
• Offering the training course at European universities. The aim of this training course is to be included in the curriculum of Higher Education Institutions in Europe. The training material will be offered, through e-learning platforms, in European universities in order to achieve a greater impact, promote student competencies, and provide a space for the exchange of results at an international level.
• Creation of a Guidelines Manual. This document will collect the learnings from 4 pilot tests carried out in 4 faculties in 4 different countries, and will help higher education institutions across Europe to implement the training in order to replicate the results of GECONEU.