The European Society
of Human Genetics

Calls for collaboration

Calls for collaboration

Invitation to Participate in a Global Genetic Counseling Study

My name is Chinmayee B. Nagaraj. I am a genetic counselor working in the USA and a PhD candidate under the supervision of Professor Alison McEwen at the University of Technology Sydney (UTS), Australia.

I am conducting a research study to explore and articulate the values and purpose of the genetic counseling profession from a global perspective. We welcome diverse voices across practice roles and geographic regions, and we would greatly appreciate your support in sharing this survey with your members and professional networks.

 The survey consists of questions regarding the values and purpose of the profession in two parts:

  • Part 1 (~10 minutes): Objective questions
  • Part 2 (~45 minutes, optional): Descriptive questions

Further details are available in the study information sheet.

As a thank-you for your time, participants may enter a draw to receive one of 100 gift cards valued at USD 20 each. Priority will be given to participants who complete both parts of the survey.

Take the survey: https://redcap.link/geneticcounseling_valuesandpurpose_globally

Thank you,

Chinmayee B. Nagaraj, CGC
PhD Candidate, University of Technology Sydney
chinmayee.bhimaraonagaraj(at)student.uts.edu.au

Funding: This research is funded by the National Society of Genetic Counselors (NSGC) Special Interest Group (SIG) Research Grant and the UTS Higher Degree Research Student Fund.

Ethics approval: This study has been approved by the University of Technology Sydney Human Research Ethics Committee.  If you have any complaints or reservations about any aspect of your participation in this research that you cannot resolve with the researcher, you may contact the Ethics Committee through the Research Ethics Officer (Ph: +61 2 9514 2478, Research.Ethics(at)uts.edu.au) and quote # HE-2026-0560. Any complaint you make will be treated in confidence and investigated fully, and you will be informed of the outcome. 

 

canSERV - Invitation to join the European Network for Personalized Oncology and its European Molecular Tumor Board Network

A european-wide initiative by the EU cluster project canSERV

We would like to invite anyone involved in a Molecular Tumor Board (MTB) – e.g., physicians, scientists, patient representatives, ethicists – to join the European Network for Personalised Oncology (ENPO) and its European Molecular Tumor Board Network (EMTBN), both being established through the EU cluster project canSERV (visit canSERV About). The European Network for Personalised Oncology (ENPO) aims to provide state-of-the-art guidance and support to accelerate the implementation of personalised oncology. Through canSERV, the ENPO will establish the European Molecular Tumor Board Network (EMTBN), which aims to guide the establishment of MTB Standard Operating Procedures (consensus standards) and the set-up of a public registry of MTB recommendation outcomes. The ENPO and EMTBN will not be limited to the canSERV consortium partners but open to the wider community to be as inclusive and engaging as possible. Although participation in the networks is on a voluntary basis, some specific activities can be considered for cost reimbursement for those who will actively contribute.

More information

IGPrare Project - Partnership between Aix-Marseille University and EURODIS

This research project, elaborated in collaboration with Eurordis (https://www.eurordis.org/), aims to study the genetic information disclosure to a patient's family in case of a diagnosis of rare genetic disease, and to propose solutions to improve the efficiency and acceptability of this procedure in the future.

This European scale study aims to identify and review the different legal framework and ethical recommendations elaborated in European countries to disclose genetic information to family members.

You can find further information here.

If you are a geneticist or genetic counsellor please and you would like to take part, Please complete the questionnaire (https://columbo.univ-amu.fr/index.php/589445?lang=en). It should take about 10 minutes. Your input would be very much appreciated.

Please contact Marion Gottrau if you have any questions.