Calls for collaboration
Invitation to participate in a short survey related to preferences and attitudes of uncertain prenatal results
Preferences for reporting uncertain results- Health professionals’ preferences for prenatal tests. What aspects of genetic testing do health professionals value most?
What’s the aim of this research study?
We are inviting you to complete a survey for our research study. This research study aim to assess health professionals’ preferences reporting uncertain prenatal genetic test results to parents.
Any health professionals can participate
Health professionals can participate in this study.
How do you participate?
Participation is completely voluntary. You participate by answering this web-survey. The survey contains ten background questions, and a choice based experiment (discrete choice experiment) with 12 choice scenarios. The survey will take about 5-10 minutes to answer.
https://uuc-app041.its.uu.se/sawtooth/asagr372/vus/login.html
If you have any questions, do not hesitate to contact Charlotta Ingvoldstad Malmgren
Charlotta.ingvoldstad-malmgren(at)regionstockholm.se
Thank you in advance for your comments and feedback to this.
CRM with genetic data/ Invitation to participate in online Interview
Dear ESHG Community,
I hope this email finds you well. My name is Ivelina Kadiri, and I am a doctoral researcher from the University of Economics - Varna, currently exploring the integration of genetic data into customer relationship management (CRM) processes. My current focus centers on the ethical and privacy implications associated with the integration of genetic data within customer relationship management frameworks.
In contrast to a marketing-centric perspective, my research aims to examine the ethical considerations inherent in leveraging genetic data within CRM systems, especially in light of the ongoing EU GDI project. I am particularly interested in understanding how this integration may impact individual privacy, autonomy, and rights. While my academic pursuits have encompassed various dimensions of this subject, my recent efforts have focused on delineating the potential ramifications of incorporating genetic information into CRM models. This includes the development of frameworks designed to promote innovation and sustainability within businesses, all while upholding ethical standards.
As part of my ongoing research and as an ESHG trainee member, I am extending an invitation to esteemed members of the geneticist community within ESHG. I invite you to participate in an online interview aimed at elucidating the challenges, opportunities, and best practices associated with the ethical management of genomic data. Your insights are invaluable in navigating the complex ethical landscape surrounding genetic data integration. The interview will be conducted online at your convenience and will last approximately 1 hour. All information shared during the interview will be treated confidentially, and your participation will contribute significantly to advancing knowledge in this field.
Please feel free to contact me at ivelina.kadiri@ue-varna.bg or +359 876676127 for any questions regarding my research. Your contribution to this research project would be greatly appreciated, and I look forward to the possibility of discussing this topic further.
Thank you for considering my request, and I hope to hear from you soon.
Warm regards,
Ivelina Kadiri
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.
canSERV - Call for Service Provision on ”Advancing Personalised Oncology"
The canSERV Consortium announces its first Challenge-Call on
“Advancing Personalised Oncology”.
Cancer Researchers in, and outside the EU are invited to apply for free access to cutting-edge transnational services with an indicative overall budget of EUR 500,000. The aim of this call is to accelerate knowledge gain in personalised oncology with specific emphasis on multi-level data-based treatment guidance linked to Molecular Tumour Boards1.
The projects supported under this call will support the advancement and implementation of personalized medicine strategies for all cancer patients in Europe, contributing to the overarching goals of the Cancer Mission Board.
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.
