In September 2019, EnGagE hosted an ethics workshop in Oxford. It brought together 25 experts from 13 European countries, and dealt with identifying the major ethical issues in the emerging field of genetic testing and counselling in clinical psychiatry (PsyGCT). Four main topics were discussed:
- the problematic dualism between somatic and psychiatric disorders;
- the impact of genetic testing for psychiatric conditions on stigma;
- fulfilling professional responsibilities related to communication in PsyGCT; and
- ethical issues in public health services.
Due to the Covid-19 pandemic, EnGagE will not host any in-person meetings in 2021. On March 15th and 16th, 40 EnGagE members from more than 25 European countries, Israel, The United States, and Canada met online. This effort was led by Kristiina Tammimies and her team in Sweden.
The Chair and Working Group Leaders provided an update on the Network’s progress and the next steps of EnGagE were discussed. The Task Force Monitoring Tool (State-of-the art of PsyGCT in Europe) gave an update on the questionnaire that was circulated among all members. With this questionnaire, we aim to provide a systematic overview on the current state of genetic testing and counselling in clinical psychiatry (PSYGCT) in Europe. Furthermore, we reviewed different options for developing and sharing educational material on PSYGCT with the scientific and general population. The Task Forces Translation of Research Methods and Questionnaires; Developing Curriculum Content; and Guidelines and Practice Recommendations provided an update. Due to the Covid-19 pandemic, health care professionals across the world have moved from in-person patient appointments to remote options. This also affects genetic counselling and is a great opportunity for EnGagE to investigate the potential of alternatives to face-to-face genetic counselling in real-life settings. This is of particular interest due to the severe shortage of mental health professionals adequately trained in psychiatric genetics. The Task Force Alternatives to Face-to-Face Genetic Counselling discussed several options to pursue.
Both days ended with open access lectures. These were well attended by both EnGagE members and others interested in the field of PSYGCT. On Monday, Julia Perry (Department of Medical Ethics and History of Medicine, University Medical Center Göttingen, Germany) gave an excellent overview on Ethical issues of clinical psychiatry genetic counselling and testing. On Tuesday, Jacob Vorstman (Department of Psychiatry, University of Toronto, Canada) provided an exemplary presentation on Closing the gap between recommendation and clinical implementation for diagnostic genetic testing in individuals with neurodevelopmental psychiatric disorders.
- general questions related to EnGagE network,
- the website,
- task force “Monitoring toolof genetic counselling and testing services”.
New temporary vice-chair was confirmed; list of next deliverables and closed STSM calls as a tool to achieve them were discussed. Active participation of all MC members in at least one task force is kindly required.
Putting heads together about website was efficacious: the company who will design the website was elected, the structure of website was determined, and members of network were encouraged to write the content.
Aim of the task force “Monitoring toolof genetic counselling and testing services” is to question the availability of psychiatric genetic counselling and psychiatric genetic testing services all over Europe. Different aspects about carrying out survey were discussed, looking through questions in detail was started.
The first workshop of EnGagE took place in Paris on April 11th and 12th, 2019. The main aim was to train the participants to the Principles of Psychiatric Genetic Counselling and Testing and to develop a transdisciplinary shared culture across European countries.
The two days were organized around four sessions. The first session was an educational session from French psychiatrists (Pr Cohen, Dr Bourgeron, Dr Chaumette, Dr Poisson, Pr Bonnot, Dr Laurent-Levinson) about psychiatric disorders with a specific focus on organic disorders related to child, adolescent and adult neuropsychiatric diseases. The second session was dedicated to genetic counselling in psychiatry and Pr Brenda Finucane demonstrated the clinical utility of genetic diagnoses in neuropsychiatry. At the end of the first day, Dr Krawitz presented the Face2gene app for automatic identification of syndromic dysmorphia. Pr Lyonnet imagined the future of genetics. The third session during the second day was related to genetic testing in psychiatry especially to the detection, interpretation of Copy Number Variations. After an educational presentation by the EnGagE working group leader Dr Tammimies, Dr Kirov presented the very recent results from the UK biobank. Pr Anne Bassett gave some clues about the clinical application of genetic testing and counselling in the 22q11.2 deletion syndrome. Finally Dr Sebastien Jacquemont exhibited his work on prediction of the rare variants on quantitative traits. The fourth and last session was dedicated to patient perspectives with a presentation by Pr Tauber related to a trial in Prader-Willi syndrome and a presentation by B. Searle of the ressources of “Unique”, a charity supporting people affected by a rare genetic condition.
This workshop was attended by 157 participants from 32 different countries. Networking was encouraged and several opportunities for developing collaborations have emerged.
On January 29-30, 2019, the Polish EnGagE team hosted the Network’s first Working Group Meeting. EnGagE members from more than 20 different European countries were invited to attend this multidisciplinary meeting at the Medical Biology Center of the Medical University in Poznań under the honorary patronage of His Magnificence Rector of the Medical University in Poznań, Prof. Andrzej Tykarski.
More than 60 participants attended the meeting that aimed at establishing the Network and defining the main tasks that EnGagE will focus on. The two-day meeting created a unique opportunity for experts from various fields to actively engage and discuss topics relevant to genetic testing and genetic counselling for patients with psychiatric disorders. The attendees’ professional backgrounds’ were mainly in psychiatry, psychology, medical genetics, genetic counselling, ethics, and neuroscience.
The Working Group discussions focused on the current state-of-the art of genetic counselling and testing in psychiatric disorders in Europe and the ethical issues that EnGagE will need to address throughout its lifetime. These discussions were framed by presentations from experts in their respective fields. Andrew McQuillin (UCL London, UK) reviewed “What genetics has taught us about mental disorders so far”, while Filip Biały (insert affiliation) provided an overview on the recent literature addressing ethical issues relevant to genetic testing of patients with psychiatric disorders. Roos van Westrhenen (insert affiliation) gave an update on the current state of pharmacogenomics in psychiatry (“Pharmacogenetics in Psychiatry: a Dutch perspective”) while David Crepaz-Keay (insert affiliation) shared his view on genetic research from a patient perspective.
The first day ended with a guided tour of the Old Market in Poznań and a delicious, typical Polish dinner which encouraged the interaction between the participants who – in the majority – had previously not had the chance to collaborate.
A meeting of the Management Committee followed the successful meeting of the Working Groups.