Calls for collaboration
Genomic newborn screening in public health
With an increasing number of countries piloting genomic sequencing in newborn screening, it is timely to consider the public health implications of genomic newborn screening. This survey explores professionals’ perspectives on potential implementation, as well as differences across countries and disciplines. With your contribution, we hope to gain insight into the governance, readiness, and responsibility of genomic newborn screening in public health.
The study is being conducted by an independent, interdisciplinary group of researchers from the University of Exeter (UK), Amsterdam University Medical Center and the RIVM National Institute for Public Health and the Environment (the Netherlands), Case Western Reserve University (USA), and the University of Toulouse/INSERM (France). The findings will be summarized in an academic publication and are intended to contribute to ongoing international discussions about genomic newborn screening and, ultimately, to inform policy discussions in this field.
The questionnaire should take approximately 10 minutes to complete and can be found here: https://tinyurl.com/genomicnbs
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.
Consanguinity and Genetic Counseling
This graduate research study, The Relationship Between Genetic Counselors' Personal Experience of Consanguinity and Their Approaches to Clinical Care, explores how genetic counselors' own experiences with consanguinity may shape the way they support patients and families.
As consanguinity is practiced worldwide and understood differently across cultures, input from practitioners in diverse cultural and geographic settings is essential to this research. Insights from genetic counselors in your region will help ensure that the findings reflect the global context of consanguinity and potentially inform more culturally responsive clinical care.
This study has two parts: an anonymous survey, followed by an optional one-on-one interview for eligible participants.
Survey: Anonymous, 6–10 minutes, no compensation
One-on-one interview: 60–90 minutes, compensation available. Interested participants can sign up via the link at the end of the survey.
Eligibility:
- Currently practicing genetic counselor with formal credentialing
- Patient-facing clinical experience within the past 2–10 years, with more than 1 year of total experience
- Experience working with consanguineous patients or families
Survey link: https://surveys.scuhs.edu/jfe/form/SV_4VB7Ly6fKmjYUpE
If you have any questions regarding this study, please contact khadijaahmed(at)scuhs.edu or msebastin(at)gm.slc.edu.
This study has been approved by the Southern California University of Health Sciences Institutional Review Board (IRB #AHME001) and is funded by the National Society of Genetic Counselors (NSGC) Special Interest Group (SIG) Research Grant.
Khadija Ahmed, BS
Primary Student Investigator
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.
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.
