Human Genetics is a rapidly expanding field at the intersection of science and medicine, which aims to understand the mechanisms involved in the functioning of the human body.
The search for the molecular basis of human health and the study of traits transmitted from parents to children gave rise to the field of Medical Genetics less than half a century ago . This relatively young discipline is of great importance for diagnosing and understanding human diseases, predicting a possible risk of recurrence, and developing therapeutic strategies. Human Genetics comprises a scientific field with fundamental or translational research units and a medical field including Clinical Genetics and diagnostic laboratories (cytogenetics, biochemical and molecular genetics) .
Young geneticists (YG) face difficulties in accessing training and may feel professionally isolated due to the small number of peers at a local level. Although the use of the internet has greatly improved the cross-border dissemination of knowledge and data, human and technical resources vary considerably around the world leading to inequalities in training and practice. In addition, rapidly changing technologies have led to a widening generational gap between young and senior professionals . YG strongly felt the need for an online community that could: promote human genetics to young people, connect isolated professionals, encourage ambitious collaborations, reduce inequalities and the generational gap.
The Young Geneticist Network (YGN)
This idea was born when a few enthusiastic YG, sharing the same needs and aspirations, met at conferences, courses, and internships abroad. The Facebook® group, created in February 2018, is open to all students and young professionals under 36 years of age (or in training) interested in Human Genetics . The aim is to allow members to share information and ask questions related to Human Genetics (with respect to patient safety and ethics) in a friendly and supportive atmosphere, all within easy reach. Two non-for-profit structures played a key role in the development of the YGN: the European Reference Network for Intellectual disability, Telehealth, Autism, and Congenital Anomalies (ERN-ITHACA), a virtual network involving healthcare providers across Europe to improve the diagnosis and care of patients , and the European Society of Human Genetics (ESHG) . Their support was essential to promote this group at European meetings (Fig. 1).
From the initial small group, the community has grown to a dynamic network of 1377 members from 101 different countries and 42% (n = 583) of them belong to 24 member states of the European Union in July 2021 (Fig. 2). Among YGN members there are geneticists with scientific and/or medical training, and genetic counselors.
The ESHG-Young committee (ESHG-Y)
The ESHG-Y committee was launched with great enthusiasm at the ESHG 2019 conference in Gothenburg (Fig. 1) . Its mission is to represent and support European YG by developing strategies and programs that aim at a better education. Currently, the focus is on four main objectives: organize scientific events, provide equal access to educational opportunities, create a professional network, and support YG to become leaders. In addition, the ESHG-Y committee is managing the YGN. The ESHG-Y is open to all YG who join the ESHG and apply for the trainee membership. It is financially and administratively dependent on the ESHG. The members of the ESHG-Y elect seven individuals among them who will oversee coordinating the activities of the committee on a voluntary basis for a period of 2 years. Every year, half of the previously elected members (three or four interchangeably) are renewed to ensure better continuity in the projects and smooth hand-over. The ESHG-Y is constantly looking for more volunteers to contribute to the effective development of the various projects.
The ESHG-Y committee, through the YGN, is a multilingual community with medical and scientific expertize. It has demonstrated its ability to participate in ambitious collaborative projects.
Training opportunities for YG
The objective is to provide innovative ideas and support for the development of interesting and useful training opportunities keeping in mind the concrete needs and digital culture of the young generation. In association with the ESHG Education Committee , ESHG-Y assists the initiation of the Mentorship Program to support YG from less economically advantaged countries . The ESHG-Y contributes to share, disseminate, and promote existing resources that may be difficult to access due to a lack of information or costs. This activity increased during the COVID-19 pandemic when a multitude of events of interest were accessible online.
The ESHG-Y is involved in the development of innovative resources, recruiting volunteers for the implementation of two Massive Open Online Courses (MOOC). In addition, the ESHG-Y has been running its own session at the ESHG conference (Fig. 1). In 2020, it was a career development workshop and, in 2021, an educational session on human organoids. The ESHG-Y also participated in the scientific program of the 31st European workshop on Dysmorphology.
Educational materials for patients and families
The ESHG-Y assists the ERN-ITHACA in the translation of patient and family guides from Unique and Orphanet initiatives. The ESHG-Y offers a two-in-one solution, with native-speaking YG proofreading the automatically generated translations by artificial intelligence while consolidating their knowledge of the disease.
Over the past years, the European YG has built a network of mutual support and knowledge. The YGN provides easy access to quality resources from around the world to create a professional network that can last throughout a career, and the opportunity to build bridges between specialists who have a clinical and scientific background. The ESHG-Y allows YG to have their ideas and needs heard and understood as aspiring professionals. Together, they provided the missing building block for Human Genetics in Europe. There is every reason to believe that this community will bring about significant and lasting change with the support of existing societies. All generations can inspire each other and work together for a better future.
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This project has been supported by the AnDDI-Rares network (European Axis) and the European Reference Network on Rare Congenital Malformations and Rare Intellectual Disability (ERN-ITHACA). ERN-ITHACA is partly co-funded by the European Union [EU Framework Partnership Agreement ID: 3HP-HP-FPA ERN-01-2016/739516]. We warmly thank Dr Berardo Rinaldi and Dr Aurélien Trimouille for their ideas and help in building the project. We are very grateful for the work done by the referees and collaborators of the YGN network, which has been essential for its establishment. We thank Dr Sofia Douzgou, Prof. Gunnar Houge, Prof. Jill Clayton-Smith, Prof. Alain Verloes, Prof. Koen Devriendt and Mr Jerome Del Picchia for useful discussions and support. We thank the ERN-ITHACA team, the MOOC BiG team, Ms Roseline Favresse from the MOOC “Diagnosing Rare Diseases: from the Clinic to Research and back” team and the Unique Staff for their collaboration.
The authors declare no competing interests.
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Riccardi, F., Marcinkute, R., Azevedo Soares, C. et al. The Young Geneticists Network and the ESHG-Young committee, a forward-looking international community. Eur J Hum Genet 30, 252–255 (2022). https://doi.org/10.1038/s41431-021-01019-0
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